Boogie Boarding

I had asked for a bit of help in a store. Now I hadn't asked for help because I'm disabled and I need extra help. In fact my disability had nothing to do with the request. I'd asked for help because I wanted to by a Boogie Board and it was in a display cabinet that needed to be unlocked. The woman I'd asked for help said she'd send someone over to help me.

A few moments later I heard a fellow say, "Oh, the wheelchair bound guy, yeah I saw him." Then round the corner came a young man, probably still in high school, strolling towards me. Now, I gotta tell you that I hate the term 'wheelchair bound' ... really hate it. Here I am in a city far from home, in a store on my own zipping around shopping and I'm bound. The only time when 'wheelchair' and 'bound' should be side by side is in an sentence something like this 'that guy in the wheelchair's bound for glory.' Other than that, shut up.

When he catches up to me, before he can ask how he can help, I say, "I heard you refer to me as 'wheelchair bound,' I want you to know that's really not how people who use wheelchair's like to be described. Just say 'wheelchair user' and you'll be good to go." Then I started to ask for help with the Boogie Board. As he was getting it for me, he started to argue with me. He told me that he's always used 'wheelchair bound' and justified it by saying his grandmother was 'in a chair' and she says that she's wheelchair bound so therefore it's OK. There was a bit of petulance in his voice, I could suddenly really see that he's still just a kid.

"Your grandmother can call it what ever she wants, she's earned that right. However, times change, trust me when I say most people in wheelchairs prefer 'wheelchair user.'" He shook his head, stubbornly, "everyone I know says 'wheelchair bound,' I don't see why I should have to change what I say." A woman, finely dressed, had stopped and listened to the conversation. She shook her head when we were talking.

I had that feeling that I have sometimes when I get in these conversations, which happen depressingly often, that I wish I'd just let it go.

But then she spoke up, "If the man wants you to use the term 'wheelchair user,' I'd use it if I were you." He looked at her startled by her interruptions. "It's good manners to refer to people as they choose to be referred to, and, it seems to me that this fellow just may know what he's talking about. You are young enough to be flexible, so be flexible. You don't want to be stuck in your ways at your age. Trust me, I know."

I could see that he felt ganged up on, "OK," he said like a 6 year old who'd been chastised, "wheelchair user then." I smiled and said, "Listen what she said to you was way more important than what I said to you, but thanks for using the right words." Finally he smiled, "My whole family is stubborn, but 'stuck in their ways' might be a better way of putting it."

I bought my Boogie Board.

Canada Writes

Hi, I've been a guest on Canada Writes ... and if you'd like to read the interview there you can simply click Canada Writes. Please drop by. And, double please, leave a comment over there. It would be nice for them to see that there is an audience for disability themed subjects.

Today's post follows:

My Small Voice Against Those Who Demean God

I was truly angered by the statements of Susanne Atanus, an American Republican candidate for congress who has explained, helpfully, that autism and dementia are God's punishment for gay rights and gay marriage. This is one uglier step forward from David Silvester a British politician, who asserts that God had punished the United Kingdom with bad weather due to their acceptance of gay marriage. Of the two, Atanus' suggesting that disease and disability are punishment meted out by an angry God on families and society is the most disturbing. The pairing of disability and sin is not new and we know it's not benign. Horrible things have happened when sin, blame and shame are combined with disability in the minds of hateful others. Simply put, while others call her a 'wingnut' and dismiss her, she scares the hell out of me.

These two, Atanus and Silvester are people who have some reach, Silvester is an elected official and Atanus is running for office and has a significant number of backers. As a citizen who is both gay and disabled, I am appalled by what they say. As someone who, and this is often hard for me to say out loud, professes a Christian faith, I find this even more appalling. I am distressed by what these folks are saying and how they pervert the reputation of God ... I am equally distressed by seeing little in the way of LOUD PUBLIC backlash from the Christian community.

Silence is consent.

Do they agree?

I've heard disgust and anger expressed in the gay community. It isn't hard to find someone speaking out about these ludicrous and ridiculous statements. I've heard real anger expressed by the disability community and particularly those who have autism. It wasn't hard to find. But I've found very little expressions of outrage from those who say they love God. 

Disability does not equal sin.

Disability is not punishment for the sin of the parents.

Weather is weather ... the rain falls on the just and the unjust.

But were are our allies?

I am writing this because I want to say that I am a believer and my God isn't hateful. My voice will be dismissed by many, my sexuality makes my faith suspect, my disability confirms the suspicion that God had truly punished me. But even so, let me say to Atanus and Silvester ... if you believe that God punishes sin ... I'd be careful crossing the street.

Frozen Moment Thawed

"Could you reach in the bag behind me and grab out my purse?" It was an ordinary request that had an extraordinary reaction. There were looks of disbelief on the faces of everyone. The request, appropriately in sub-zero temperatures, froze the moment. Then, a homeless woman, sitting on damp and wet cardboard, got up from her spot and came round behind. With a gentleness that belied her circumstances, she pulled back the flap of the bag and reached in for a small purse. She then handed to the woman in the wheelchair who said a really casual, "Thanks."

She went through her purse and found a handful of change and then reached it over and dropped it into the hand of the homeless woman. "It's cold out, slip in somewhere, have a coffee and get warm for a bit." The woman nodded, smiling. Then she was given the purse back and once again gently placed it in the wheelchair bag behind the chair.

They chatted for a bit as the homeless woman sat back down on her cardboard, then the woman in the wheelchair took off the scarf around her and handed it over. "I have a thousand scarves, I really don't need them all, please take this, it is so cold out." The homeless woman didn't protest, it was clear she needed the scarf, she took it put it around her neck and then accepted the compliment that it looked good on her.

They said goodbye and it was over.

That woman in the wheelchair gave a bit of money, a surplus scarf, but she gave much, much, much more.

I want to be like her.

Needs

Yesterday Joe had to drop me off and then go off and have some serious dental stuff done. We knew we'd be cutting it close for time between him dropping me off for work and then getting himself ready to take the subway out to the clinic. It ended up that we had about 15 minutes leeway, so I quickly chopped some veggies and Joe through them into the fry pan. We let them cook for a few minutes then threw in a few other ingredients - supper made in about 14 minutes. Then, the door closed.


I'm never really home for very long on my own. An hour, maybe, every few weeks when Joe goes to church, would be the extent of it. We are together most of the time at home. This isn't because Joe stays home to take care of me, no one every considers that I may do things that would classify as 'taking care of Joe', but it's just how we live and, of course, it works out well for both of us. So, Joe being away for a few hours was - different.


I messed about on the computer for a bit and then made plans on how to do all the things that needed to be done. Many of those things would involve me doing stuff that Joe normally does, his part in the partnership. Slowly, methodically and with much 'thinking it through,' I got through pretty much everything that needed to be done. By the time Joe got home I'd been fed and watered, I had my feet up, I'd watched George Stroumboulopoulos do a half hour interview with former Canadian Prime Minister Jean Chrétien, a man I always admired, and the strains of the Jeopardy theme song was playing.


I asked how his mouth was. He gave a frozen answer, he looked cute in drool. Then he asked how I did - I knew he was curious as to how I managed doing some of the things that he usually did for me. I'd managed - it was more difficult but I managed. But that's not what I told him.


"I was kind of bored without you here."


And that was true.


Yeah, I noticed the extra stuff I had to do, the extra effort it took to manage some basic things, but what I really noticed wasn't that the help wasn't there - but that he wasn't there.


I think it was good for me to be reminded that my relationship with Joe, while it's changed since I because disabled, it's only changed cosmetically - it looks different. But the reason I need him now, is the same reason I needed him then - and none of that has anything to do with bringing me supper in a bowl from the kitchen.

For Most of My Life I've Answered Incorrectly

I mentioned, in an email exchange with someone who wrote to ask me a question, that I was often stared at when out in public. I brought it up because it was germane to the question and to ensure that my answer was seen in context with both my experience as a professional and my experience as a person. A couple emails later, I received one that I could tell from reading had been a difficult one to write. Sometimes emails and letters are edited into echoes of the original message. That email asked, politely, why I was stared at.


I forget sometimes that some people know me only through journal articles, not through my blog, not through my lectures, and therefore have never seen me. I appreciated the care with which the question was asked and I began to answer their email. Over the years I've often answered this question and others:


why are you teased?


why are you bullied?


why are you treated as lesser?


I've always explained it simply. Since I became disabled my answer has gotten longer but essentially it's ... I'm different. So I was typing that sometimes I'm stared at because of my disability but I suspect most often I'm stared at because of my weight. I found it oddly unemotional to write these things, but I guess after all these years the pain of constant discrimination has drained out of the words that explain it.


And then.


THEN.


I stopped.


I stared at the words.


"...sometimes because I'm disabled but most often because of my weight..."


My eyes scanned at focused at first on two words, "disabled" ... "weight."


These words blurred and the word "because" came into sharp relief.


And I knew.


I'm not stared at because of my disability. I'm not stared at because of my weight.


I'm stared at because rude and cruel people choose to centre me out with their eyes. The fact that not every single person stares at me, in fact many, many, do not ... means that those who do are making a decision, they are purposely choosing to stare at me.


Little children are taught not to stare at people.


Little children are taught that staring is rude.


Little children are taught by adults who know that staring is a rude and disrespectful way to treat other people.


So.


They know.


We all know.


And they stare anyway.


I have been making myself responsible for the rude and disrespectful behaviour of others. I have been taking their stares in, and through the alchemy of shame, making their behaviour acceptable.


And I've been wrong.


Very wrong.


I am stared at because there are rude and disrespectful people who target difference with their eyes.


That's why I'm stared at.


That's the right answer.


Finally.

A Letter From My Father

Yesterday I was emailed this video by a young film maker named Abhishek Hans with a request that I share it with you here on my blog. I get a lot of these kind of requests and, because this is a personal blog, I turn down most of what's offered. Typically the videos are fundraisers or product promotions - and I want to stay away from that here. But this video told a story that touched me quite deeply. I thought that their were many messages conveyed in three short minutes. Please let me know what you think and, if you like it, please share it widely.

Joe's Call

I was just setting about writing todays blog when Joe's voice came from the kitchen: "You might want to hold of writing that blog, unless it's a short one, because breakfast is well under way."

Decisions.

Decisions.

Decisions.

Bye for today!

Hugs!

It's odd the kind of things that can, suddenly, increase the quality of your life. Over the last year, maybe even two, I've found my ability to sit for long periods of time in my power chair, decreasing. I'd feel some significant pain and, as one does, over time I began calculating exactly how long I'd be able to be in the chair and modify my trips to fit the time frame. I tried a number of different adaptations, putting an extra layer of foam under my seat cushion, trying different angles of seating, changing the depth of the chair. None worked, some were even dangerous.

Then, a few days ago, my cushion, the five year old one, fell off the chair. When I picked it up I noticed that it, quietly, had simply died. The cover fell limply off the cushion and the whole thing just looked sad.

I got on the Internet and found a cushion, ordered it, it was expensive but I wanted a really good one. And then waited for it's delivery.

It got here a couple days ago.

It was plump, it had support and resistance, it fit exactly as it should.

We, Joe and I, looked at it on the chair and noted that it changed the whole look of the chair. I climbed in and, there's no other way of saying it, my bum cheered!! I felt like my buttocks had been embraced and welcomed.

Now I'm able to sit comfortably for long periods of time, without any pain at all. Yesterday I sat through an all day meeting, smiling to myself, knowing I had the most comfortable seat in the house.

And, my bum was being lovingly hugged the whole time. When that happens, who the hell cares what's on the agenda!

Non Traditional Doesn't Mean Unimportant

I have been advocating for a long time now that we, who know better, need to stop using words that suggest we don't when we refer to those people with disabilities among us who do not use speech. Typically I hear words like, 'non-verbal' or 'non-communicative' and phrases like, 'I speak for my son/client because he can't speak for himself.' I shutter when I hear these descriptions of the person in their care. It frustrates me because these self same people know a lot of the communication strategies that this supposedly 'non-verbal, unable to speak for herself' person. They often know:

foods they like and foods they don't

activities they like and activities they don't

how they say no and how they refuse

how they say yes and how they show extreme pleasure

people they prefer and people they don't like

whether the person is happy or sad or scared or angry

And how do they know these things. I'm certain none would claim psychic abilities. If you ask them they would say something like, 'well, s/he lets me know what s/he likes or dislikes.' I'm sure that's absolutely correct.

Which makes them a communicator - plain and simple. Because that's what communication does, transmit information from one person to another. Not only that, it's clear that the communication is really successful because anyone who supports the person can tell you the same things about likes and dislikes, feelings that are expressed.

The term I use, I insist that others use when they are speaking with me about someone they support is: non-traditional communicator. If they are talking about their manner or style of communication I suggest non-traditional communication. I'm not speaking hear about those who use alternative communication - picture boards or other individually designed strategies. I'm speaking of those who fall into that great huge category of 'non-verbals' (God I hate that term).

The story yesterday had a real punch to it. The fellow using his communication board to powerfully ask someone to treat him as an adult. But what really excited me about what I saw was something different. When the receptionist first came to speak with him, he responded with communication, something caught by the woman with him. She saw a particular look on his face, in effect, he 'spoke' in a non-traditional manner. From then, all the communication between him and the woman supporting used communication cues that were NOT on the board but were understood between the two of them. She knew his language, he understood hers. She always spoke to him first and listened to his unspoken answer.

That's awesome.

That's respectful.

Self advocacy is possible for all people with disabilities. If someone can say, non-traditionally, 'I get angry when you speak to me in that tone,' they are a successful self advocate. If someone can come home from school and report, 'I had fun today' or 'I'm upset by something today,' through non traditional means, they are advocating for themselves. Our job isn't to 'speak for someone who can't speak for themselves' our job is to be 'under the direction of someone who communicates non traditionally.'

The woman in the story never lead, she only followed. She listened, she assisted, she did it without show or fanfare.

That's awesome.

That's respectful.

I know no one who communicates nothing ... so I don't know a single 'non-verbal' person. Because words aren't, as we all know who's ever lived with someone who slams doors in the kitchen when angry, always spoken.

Revolutionary Support

I don't know if she was his mother or his staff - but in this case, all that matters is what she did and how she did it. I had come into a waiting room, needing to have a check in with a specialist, and waited until they moved a couple chairs so I could place my wheelchair out of the way. Waiting rooms nearly never leave spaces for wheelchair parking. I noticed right away a fellow with a significant disability sitting, also in a chair, beside a woman old enough to be his mother. She looked very prim, he just looked bored. She was reading a book she'd brought along, he just looked bored.


We played 'waiting room lottery' and everyone would look a bit crushed when someone else's name was called out. We all watched with longing as they got to move up a rung from 'waiting room hell' to 'in the specialist office hell'. Then, suddenly, the receptionist got up and went over to the man in the other wheelchair and said, in a sing song kind of voice, "it's your turn now, sweety." He looked at her and I noticed that when he did his lips moved in a half smile. The prim woman with him, put her book down, and said to him, as if he'd made a comment, "Oh, I see, would you like me to tell her what that look means?" She looked at him for a moment more, I saw no discernible change in his face. "Oh, OK," she said, as if he'd said something, "I'll get your board."


She reached into the bag at the back of his chair and brought out a small board. I could see when she opened it that it was a communication board of the kind with pictures and words underneath. She held it flat, in front of him. The receptionist looked annoyed that this was taking so long but she knew we were all watching now and she wanted to present herself carefully to us all. He took only a couple of seconds to point to a large picture up on the right corner. It looked as if it was prominently placed because it was used often.


The receptionist said, "What does that say?"


The elderly woman looked at the fellow with her and said, "Would you like me to read it to her?" Again, she looked carefully at his face, "OK, then."


She turned to the woman and said, "It says, 'Please don't speak to me like I'm a fucking puppy, respect me as a man."


The receptionist was flustered, stumbled out an apology and suggested they go to their appointment. I couldn't hear much more because of the sound of cheering in my own head.

Dave Strikes Out

Several weeks ago I was talking with Ruby on the phone, congratulating her for winning her grade's 'compassion award.' She's won this award before, and each time she does, we all feel proud of her. She told me about getting the award and I asked her, "Do you know what 'compassion' means?"


She paused for a very, very, long time and then said, "It means that I'm a very, very,good girl." I could hear that she was embarrassed saying that out loud but it was also clear that she didn't really have a way of describing compassion. I said, "Well, yes you are, but would you like to know what the word 'compassion' means?" She said that she would.


There was an offer that I immediately regretted making. I started with things like, "It means when someone sees that someone else needs help and you go and help them." I quickly realized that that isn't compassion it's helpfulness - a good thing but not the same thing. I said, "No, that's no quite it."


"What is it then?" her voice full of curiosity.


"It's when someone feels sad and you go to them and spend time with them and listen to why they are sad." I quickly realized that this isn't really compassion it's more like empathy and the giving of time and attention. Not quite the same thing. I said, "No, that's not quite what it is."


"OK," she said, waiting for my next example.


I thought and I thought until my thinker was sore. I know what it means but an example just wouldn't come to mind. And then it hit me.


"Ruby, it means that you are a very, very good girl."


She was completely satisfied with the answer she had given in the first place.


Sometimes I want to complicate things way too much.

That's Nice!

"Oh, they let you have a key, that's nice."


It was just a casual chat with a stranger, over tea, at a small café nearby. It began with weather, as it always does and moved on to the 'what do you do?' conversation. I listened politely to a story, proudly told, of work, before retirement, in senior management at an investment firm. I mentioned that I worked as a director in an agency that serves people with intellectual disabilities. In the course of our chat I was asked about my hours and I said that I went in very early. "Oh they open that early?" "No, I have a key, I let myself in?" Now there was a surprise!


Apparently it was nice that 'they' let me have a key.


It's not uncommon for people to assume there is this great 'they' in my life; a 'they' who allow or disallow me to various things in my life. Let me give you some examples about how liberal and 'empowering' my 'they' are:


"Oh, they let you go out all by yourself!"


"Oh, they let you handle your own money!"


"Oh, they let you eat that?"


"Oh, they let you travel on the subway by yourself?"


Don't I just have a wonderful 'they.'


I was talking with a woman with an intellectual disability the other day about this. She was very surprised that people thought I had a 'they' too. Her parents, her friends, the people she works with always assume that what she does is approved of after multitudes of meetings have been held, dozens and dozens of forms filled out, hundreds of donuts dunked in gallons of coffees in thousands of consultations and, of course, a stamp of approval from 'they'.


For her, who has lived under the regime of 'they' it's really important for her to establish herself as the person who controls her own life, who makes her own decisions, and asks for help seldomly and only when she needs it.


For me, who transitioned from being my own 'they' to existing under the control of an assumed other 'they' ... it's a matter of maintaining ground, refusing to be seen as other than I am because I am now other.


In the café I said to the fellow I was amicably chatting with that 'I' was 'They' ... I was a Director of the agency.


He looked at me, surprised again, "You mean it's like a real job?"


"Yes," I said, watching his coffee freeze in his cup from the frost on my breath.

Gotta Go

It's really hard to write this post.

Not because it's emotionally difficult.

Not because it's hard to find the right words.

But because it's really hard to write this post.

Here's why it's so hard:

Right now, right this second, I'm sitting at the computer with the fire alarm screaming throughout the apartment building. Only moments ago I was fast asleep, deep in dreamland, and was brought to life by the howling of the alarm. Joe and I sat up in bed, discombobulated, getting our bearings, taking a moment to figure out what the noise was all about.

Realizing that the fire alarm was going off, we both got up. As I passed by the door to the apartment, we are located right by the stairwell, I could hear people rushing down the hallway and into the stairwell. Our building is one that isn't plagued by non-sense fire alarms. We don't have pranksters pulling the alarms or drunken party-goers making stupid decisions. So, here, in this building the alarm is serious business.

We face a decision. Trying to get me down the stairs and out into the cold. This is doable, we've tried, but extremely difficult. Waiting until we are assisted by the fire squad. We know that we are on a list compiled by the building and kept secure in case of fire or other disaster, and we are promised that we will get assistance should assistance is necessary. But that's never been tested.

Joe has been out on the balcony, which is inaccessible to me, to check and see if he can see smoke anywhere. We can both see the lights of the firetruck flashing and reflecting on the windows of the building opposite. We know that the crew is here. Joe has just informed me that there is no smoke in the hallways, he called to me from the door where he is talking to someone who is fleeing the building.

We've decided that we need to try and get me down the stairs. The alarm's been on for a long while now.

Now I worry about falling going down the stairs, I worry about Joe having to get me and my chair down the stairs. Maybe a neighbour will help.

Comic Relationships

Right now I'm working on an exciting project with a terrific team of people. Our goal is to create a series of comic books, or if you prefer 'short graphic novels,' that will feature people with intellectual disabilities and their various quests for love and relationships. They will look at dating, break ups, intimacy and, without being completely graphic in one way it won't be too graphic in the other, sexuality. The goal is to create a resource with accessible information presented in an accessible format.

The team at the sexuality clinic of Mackenzie Health's Behaviour Management Services of York and Simcoe, and I, have been discussing various story lines that we want to include. We've already been fleshing out possible stories and characters in the story. Two of the people will be based on a couple I met years and years ago, when they were in their late teens, a woman with Down Syndrome and her boyfriend with Cerebral Palsy. What struck me about them was their love for each other but also the responsibility they showed. They knew, from watching TV, that there were diseases you could get from sex, they wanted to be safe - so they waited, asking questions that weren't answered - until they could make responsible safe decisions based on information. I was lucky enough to have them in a series of classes that I taught.

They caught my imagination at the time and I thought that their quest for information and how they survived the frustrations that they faced quite inspiring. Before the class ended I had come up with the idea of creating a series of comic books that would tell the story of the lives of some young people with intellectual disabilities AND provide information of love, relationships and sexuality.

I put sex last on the list because, as I've said before, that in all the years I've worked with people with disabilities in the area of sexuality, I've never been asked the question, to which the answer is "penis goes into vagina." The questions I get asked are "how do I find a girl/boyfriend" or "how do I know if s/he likes me" or even "is it OK that my heart speeds up when s/he kisses me." These are the kinds of things we want to deal with. We also want to deal with situations that are common to people with intellectual disabilities like the approval of those who have, or feel they have, the right to disapprove of their love and relationships.

Here's why I'm telling you all this. At our last meeting we discussed reaching out to you, the readers of this blog, and asking you to give us some ideas for situations or barriers that people with intellectual disabilities face (remember at least one of the characters will be using a mobility device). We'd also like to know what kinds of things do you think should be included, most particularly if you are a person with an intellectual disability - a curriculum is going to be hidden behind the stories we are going to tell - so what needs to be there? Do you have a story line that you think should be included? Please, please, please, ask those with intellectual disabilities that you parent or serve what kind of stories they'd like to read about and what information they'd like to learn. That would be helpful too.

I applaud the team at the sexuality clinic for embracing this idea with such passion. It's a resource that is needed and one that puts information, literally, into the hands of people with intellectual disabilities. So, if you are of a mind to, would you give us ideas and suggestions in the comment section of this blog. Thanks!

Shhh, Quiet Please

"Hey World, I Have Arrived!!!!"


I have written often, to the point of tiresomeness I suppose, about the keen desire I have for anonymity when out doing regular ordinary things. Sure I like attention just as much as the next person, but only when it fits with the situation, only when something actually merits attention. Other than that I live for moments of the sense of comfortable invisibility that non-disabled people live with, and, might I say, luxuriate in. I'm not talking, of course, and to be clear, about forced invisibility when someone refuses to see me when I need to be seen - that's not what I mean at all.


Being in a wheelchair, being different in any way really, increases the 'stick outedness' of the experience of being atypical. That's enough in and of itself but man, does it ever seem to be that people was to megaphone difference so that everyone in the area is the aware - DISABLED PERSON HAS ENTERED THE ROOM. Let me give you a couple of examples from this week.


Situation One


We were heading to buy a toilet plunger at a large box store. When you enter the store they have turnstiles for those who travel on two feet and then they had a locked entrance, by way of a gate, with the blue wheelchair symbol on it. To get into the store, you first have to get the attention of a clerk, who in this case was studiously ignoring my requests to enter. When the loudness of my request crossed the threshold of her animosity, she pushed a button that opened the gate. When the button was pushed a huge gawd-awful buzzing sound was let off. Everyone in the vicinity, naturally, turned to see the source of the sound and voila! it was me coming through the disabled entry. Nice, clean entrance there.


Situation Two


A formerly accessible store has installed these supposedly accessible guardians of the gate at their entry point. These are two bars which swing easily as you pass by them, the only swing one way thus not allowing exit through that area of the store. It's a theft prevention thing. Well, this supposedly accessible thing is accessible to scooters but not to right handed power wheelchair users. To pass though for me, being tall, means that it hits my control at it's weakest point, I wouldn't chance it. To others, with lower chairs, it pinches the hand using the control in trying to swing the bar open. I made a complaint and a happy and chipper staff came and told me, 'no problem, just wave to us and we'll come and hold it open for you.' Yeah, 'no problem' ... sitting there waving and calling out to staff who are busy at the cash - not a problem at all. I love having a row of people staring at me waving and then seething as they wait for the cashier leave her work to come and assist me in. Yeah, nice. No notice there.


Situation Everywhere


Let's not even get into those places where you have to go and get a key to use the disabled loo, or those who have elevators but they are locked and you need to go into the building to get assistance. One near me has an elevator into the store, locked, and the staff you need to get assistance from, as instructed on the sign on the elevator are in the store you can't get into without assistance. I went in, once, but had to ask someone going in and up the stairs to get a staff for me, the staff came with such annoyance that I rode up the elevator, rolled off into the store and then turned and said, "Now take me back down, you can shove your attitude and this stupid elevator up any ass you choose."


Sometimes I just want to be out without buzzers, without bells, without waving and yelling, just out. Just quietly out.


People say that sometimes minorities should just shut up ... and you know where that would leave us ... in the freaking cold.

What's Going On? Help!!!

"You hear that all the time don't you?"


I just nodded. A few seconds before I backed, carefully, onto the elevator we were now both riding. He said, cheerily, "Bet you wish you had those back up beepers, don't you?" As if that weren't enough he made a couple 'beep beep' sounds. It's a laugh riot, I'll tell you. I didn't say anything, I just gave him a weak smile.


"I knew it when I said it that it was a stupid thing to say, but I couldn't stop myself," he said while I thought, "yes you can."


After a few moments silence he started up again. "People always say to me, 'How's the weather up there?' or 'Can you see my house from up there?' It's never funny, it's always annoying and I just did the same thing to you." I then looked up at him and, indeed, he was very, very, tall. I said, "Yeah, I don't find it funny either, in fact, to be honest, it's irritating. But I tell myself that people are just trying to find a way to connect."


Another few moments of silence, "I don't see it that way at all. I see it as very sophisticated name-calling. I always feel centred out or pointed at when people say those things. I don't see them as a way of connecting I see them as a way of distancing."


And we arrived at my destination, he was going a few floors further down. I wished him a good day, he gave me another quick apology and I was on my way.


This conversation has stayed with me.


Troubled me a bit.


So I come to you ... those of you who get the same 'jokes' over and over and over again - how do you see them? Help me out here - is he right?

Hope You Get A Good Mark

Today's Blog is a Request from a Student Studying Disability:

5 Questions For People Who Have Disabilities?

1) What is the most disabling aspect of your disability?

I remember reading a character in a book, who's blind answering this question with a "I can't fucking see." It's a very funny moment in the book - I can't remember the character or the book. I'm going to move away from disability to answer: barriers and attitudes that prevent free access of movement and participation.

2) Do you sometimes wish you weren't disabled?

I don't like these kinds of questions. I sometimes wish all sorts of things, I have wished to be think, I have wished to have hair, I wished - when I was very young - to be straight. But I have also wished to win an academy award, to write a best selling book, to ride in a dog sled. I'm not sure wishing means anything other than a response to a moment. So, yes, on occasion I have - I need to tell the truth. But it was a momentary wish not an indicator of lifetime longing.

3) Is there a responsibility that comes with disability to actively work for change in how the world sees and treats people with disabilities.

Yes, but activism is sometimes thought out and a result of personal action - writing a letter to a store chain, demanding to see and speak to a manager, organizing with others with disabilities for some kind of action. But activism is also done just be going out and doing what you want to do when you want to do it. Living life freely, and publicly, challenges a thousand stereotypes all at once.

4) If a millionaire was to give you one gift, what would it be?

If I had a millionaire as a friend wanting to give gifts, I'd look forward to every birthday with increased excitement. I would like the gift of a wheelchair accessible van.

5) What advice would you give to a young person with a disability similar to your own?

You will hear a lot of voices telling you about you --- the most important voice to listen to, and it can be hard to hear over the crowd of people around you --- is you own voice. Trust yourself, try it yourself, take heed of your hopes and dreams - they make you you.

How It Works

(I apologize I can't get the spacing to work properly today.)


He was nine, had an intellectual disability, and immediately took responsibility for me. He laid eyes on me when I entered the cafeteria. Joe had gone off to the toilet so I entered on my own. He burst away from his mother and her friend, making a bee line towards me. I don't much like being rushed, I get a little anxious - years of being bullied leaves a mark, but I could see by the look in his eyes that I had nothing to fear. He got up to me and instructed me not to crash into things. I assured him I wouldn't.




The two women with him, I'm guessing their relationship to him, came and tried to interest him in things like, um, lunch. He was having none of it. He wanted to walk in front of me, keeping his eyes ever wary for people who may cross my path and on my driving to ensure that I didn't hit anyone or anything, it was something he took seriously.




A couple times I had to ask him to move over a bit because I needed to get closer to something, he did so - reluctantly because he was worried I'd crash into things. But I didn't crash and he wasn't fully comfortable until I was at my seat and ready to have lunch.




I'm a shopper and Joe is not, so when we were nearly done lunch. I gulped the last of my tea and suggested Joe finish his at a leisurely pace so I could go upstairs to the gift shop and he could meet me there. Again, I headed off on my own.




I wasn't in the gift shop for a moment before he spotted me again. I could see the weariness on the faces of his mom and friend, I think they were worried about my patience. I truly didn't mind, though what he was doing was sometimes bothersome, and made getting around cumbersome, his heart was in the right place. I gathered from what I was told that there are kids with physical disabilities in his classroom and he's equally concerned about their safety.




By the end, yep he made it to the coat check with us, we managed a brief conversation. Very brief, conversation seems to be a skill that's only beginning to develop. He even made a little joke with me, that was entirely appropriate and quite funny. He glimpsed at me when I laughed, then he grinned. That grin meant the world to me.




He had spent every moment of our time together trying to keep me safe.




I guess, maybe, in there, he managed to feel safe too.




That's how it works, yeah, that's how it works.

When You are You Who Are You?

I was asked an interesting question, a couple of months ago, that I've been mulling over ever since. Most often when I am hired to do a presentation people choose one of six or seven day long presentations that I do. Occasionally, almost rarely, I'm asked to do something different - a question and answer day. All I do is show up and take questions, on a variety of differing subjects, for three or four hours. I enjoy these days tremendously because I never know what's coming and sometimes, until I'm asked a question, I don't really know what I think about something - if that makes sense.

The question that was lobbed to me was, and I'm definitely paraphrasing here; "Given that you belong to a variety of minorities, gay, fat and disabled; when you think of yourself - which of those is most prominent?" The question took me a little aback and I stumbled through an answer saying something along the lines of "I don't know, I suppose I see myself as all three all of the time." I knew when saying it that I wasn't being truthful, but I wasn't lying either. I was simply giving the best and least inaccurate answer I could think of at the time.

Being me, I thought about it a lot since then. For the longest time I thought along the lines that I think of myself in the context of a particular moment. When I'm trying to access an inaccessible space, I don't think of my being gay or being fat. When someone makes a negative comment, loudly, about my weight, I don't think much about being disabled or being gay. So, the moment matters. That seems fairly simple.

But what about when the moment doesn't matter. What if it's just a plain simple moment where none of the various identities that I could be are called into relief? Then, I realized that other, smaller identities come forward, 'the reader,' 'the writer,' 'the Google master,' 'the mystery movie buff,' 'the cook,' those and thousands more. But, then, I thought, those identities are, again, contextual identities, they have to do with what I'm doing.

The question I was being asked wasn't really about doing, or self in context, it's about self. How do I identify myself to myself. And in the end, I realized, I don't. I simply don't. Dave met Dave a long time ago and Dave has consistently been Dave - though who Dave is has changed as Dave has grown and learned - but there is a consistency that makes me me.

Finally I came to the realization that the question sent me in search of an answer when instead, I should have challenged the question itself. Would anyone ask a thin, heterosexual, white, able bodied male how he identified himself to himself? Why is it incumbent upon me to take up an identity and carry with me at all times? When do I as a fat, gay, disabled man get to to exist sans adjective? I don't wish to make it sound like any of my various identities are burdens, they aren't, they just don't mean very much to me in deeply private moments when I'm alone with myself.

I am proud of the communities to which I belong and the identities that give me entrance to those communities. I keep my membership cards neatly folded and handy when needed. But I don't need them all the time, and as much as it may surprise some, there are times when none are needed at all.

Definately not ROTFL

Trouble was brewing for a couple of weeks and I was entirely unaware. I woke this morning to an email signed by 52 people. The list of signatures was L - O - N - G - E - R than the message that was sent. I have to admit that I had to think, really hard, about the issue that was being raised in order to remember precisely the situation they were talking about. I finally did.

Here's the scoop. A picture was posted on Facebook by someone who's linked to me, I know that Facebook calls everyone who is linked to me there a 'friend' but in truth I know very few of those linked to me personally, most are there because we are connected through the disability community. The picture was one of those that villify fat people, usually women but sometimes men, that is supposed to make people LOL, or ROTFL, or maybe even LMFAO. I hate these kind of pictures and see them as a violent attack against fat people. I am fat, if anyone wants to remember, and I protest this kind of imagery as I protest all cruel humour.

In fact on April 30th of last year, I posted this note on my page: To my friends, my family, my fellow facebookers. I know I am really fat. I know that being fat means being reviled. I somehow, maybe mistakenly, believed that if you requested to be 'friends' or if you accepted my request to be 'friends' that would mean that I could expect a kindly and friendly atmosphere. For the most part that is true, and I thank you for that. However in the last few days I've been seeing pictures of people used as targets for hatred and vitriol. Pictures of fat women with a large pizza, pictures of a fat woman in a wheelchair eating a block of cheese, pictures of fat men on scooters - these are accompanied by comments about how disgusting, how ugly, how horrifying these people are. I ask of you a favour. If this is how you feel about fat people, please 'defriend' me. I won't be offended, I'll be thankful. I don't need to come here to be reminded that you, and those like you, think that me, and those like me, are sub-human beings. I'd rather gather around me, here on Facebook, like minded, fair minded, kind minded people. I believe in community and I believe we should strive to make community wherever we find ourselves. I wish a safe community, if you can't respect me, please respect that and move along.

Here is what happened: Someone, by his profile picture I'd guess a man in his thirties, put up a HaHaHa picture which I found particularly repugnant. I'm not even going to describe it to you, I don't want to put myself through writing it down AND I don't want to put the image into your head. So, let me just guess that you've seen these kind of things and know what I'm talking about. My reaction? Anger mixed with hurt mixed with outrage. How is it that cruelty is seen as really, really funny? More troublesome still were the comments to the picture. Most saying that it was really funny, disgusting, ugly and several suggesting that the person in the picture should just go away and die rather than be seen in public. All comments, every single one, reacted with either laughter or revulsion to the picture.

I have been the lone voice before.

I left a comment stating that I thought it was offensive. I was strong and clear in what I had to say. I'm used to doing this now because I don't let a single one pass. In fact I wrote a similar protest to a similar picture YESTERDAY. I was blunt, I didn't mince words. It was offensive. It was hateful. The comments were full of bigotry and prejudice. My comment was about the 'behaviour' of posting the picture not the 'character' of the person who posted it. 

Here's what's came of that. I did not know, and frankly don't care, that the person who posted the picture was someone with an intellectual disability. A group of people, not the person who posted the picture, who support this individual and some of this individual's family, sent me an email telling me that I had hurt his feelings and that he was upset by my comments. I was chastised because I present myself as someone who cares about people with disabilities and here I was attacking someone with a disability. I owed THEM and apology.

Let's leave aside, for the purposes of this blog post, the horrible fact that they did this without him, his name wasn't in the list and he was spoken about as if he wasn't in the room when this was done. Let's also leave aside that if I attacked anything it was the picture and the behaviour of posting the picture, I didn't, and don't, directly attack the person posting the picture.

I sent an email back and said that they could read my blog for my response.

Here it is.

I do not apologize.

My response to him was the same response I would have given to any one else. I did not know he had a disability and even if I did I would have done the same thing. People have no right to be purposely cruel to people. There are no exemptions. Read that line again. THERE ARE NO EXEMPTIONS. Purposeful cruelty is wrong. When someone with a disability teases or bullies another person with a disability, what they are doing is wrong. It requries comment. When someone with a disability teases or bullies anyone else, what they are doing is wrong. It requires comment. I suggest that instead of writing me asking for an apology you might want to spend your energy speaking with him, involving him in a discussion about why some people might not find that picture funny. Maybe, he's been teased or made fun of, maybe that experience will help him understand why doing that to others is wrong.

I do not apologize.

Not even a tiny little bit.

A Helluva Time

Yesterday I went to an all day meeting and because I wanted the greatest degree of mobility I could have, I arranged to take my power chair. Somewhere along the decision making process I came to the idea that Joe would just drive me there and make sure I got in and from there I would rely on my colleagues for any help that I needed. After all the only things I would need were: help raising and lowering the foot pad, getting things in and out of my bag and holding doors when necessary. Not terrifically intimate needs.


I spoke with a couple of my team when I arrived and everyone, to a one, was more than willing to help. They were both kind and supportive - I couldn't have asked for a better response. So what I'm writing here today is not about them, it's about me.


I had a helluva time asking for help.


I ended up asking 3 times in the day for assistance. For my maximum comfort, I would have needed to ask for assistance about, maybe, ten or twelve times. But I simply couldn't ask, and therefore only asked when I really needed help. I had a strong internal battle with this.


I know that asking for help does not diminish me. I know it doesn't. But why then, does it feel like it does.


I AM NOT DIMINISHED ... screams my mind.


I feel completely diminished ... whispers my soul.


In those three times I asked for help, I saw that the help was given willingly, without much comment and without any, thank God, fanfare. It was just given. But I found myself looking to see if the willingness was real, if the task was even slightly bothersome, if afterwards I was viewed or treated differently. It was real, it wasn't bothersome and I wasn't treated differently. But I felt different.


In all that I realized the absolute vulnerability that comes with asking for help. Besides the obvious worry about vulnerability in the moment of receiving care, there are all the social ramifications of being someone who needs assistance from someone else. How am I seen to others? How do I see myself?


When Joe picked me up and asked me how the day went, I didn't tell him any of this. We ended up having other things that needed talking about - and I knew that I needed to think this through.


I am disabled.


I need help sometimes.


Those two things, for me, are givens. But clearly I'm not at peace with that - I thought I was, I am comfortable in getting help from Joe. However asking for a bit of simple assistance from people wanting and willing to give it ... that was sheer, almost, torture.


I guess there's growing yet to do ... RAH!

Elevator Buttons

Yesterday an overheard remark to a support worker, "Just because I have Down Syndrome doesn't mean I have to look up to you," struck me as very, very funny funny. Now, nearly a day later it strikes me as more than funny, it's also quite wise. In fact, as I think about it, I can fully understand what's being said. I imagine that most people with disabilities can.

The moment I sat down in my wheelchair, my social world changed. People saw me differently and spoke to me differently. My boundaries changed, my shoulder, my head and my back became public property and people, strangers, would feel free to touch me - something they never did when I walked, or even, when I sat in a typical chair. I could echo that overheard remark by saying, "Just because I look up at you doesn't mean I look up to you."

It seems that there is a constant clash between my need, and right, to be treated as an equal, and others impulse to elevate themselves by lowering me and those like me into our rightful place as supplicants and 'lessers than'. When the end result of 'elevation' means you are standing in the same place, there is clearly a problem - but that fact is lost on those who revel in being 'above' another.

Over the course of a week I spend a lot of energy abjectly refusing to get on the 'diminishment elevator' and no matter how hard I have to work to keep the door open and block the 'down' button from being pushed, I manage as best as I can to stay on equal footing. But it's work, and it takes the kind of gumption and courage that was showing by the fellow with Down Syndrome who spoke up to his support person and put him in his place ...

... and where was his place?

On equal footing.

The Same For You Too

We arrive home, the wheelchair is in the back of our Volkswagen Beetle, pressed up against the window. Joe opens the door to get out, cold pours in, enveloping me in a cold embrace. I get out of the car as he sets up the chair. On the ride home, and in the few seconds taken to set it up, the chair freezes. Cold burns through my gloves as I begin to push myself to the door. The rubber on the tires makes an ungodly sound, like they are shrieking in pain, as I make my way into the lobby of the apartment building. On the long haul down to the apartment, the chair creaks and groans, sounding like it's, oddly, on it's last legs.


The power chair is heading up the street, there's no one else around so I can go top speed. But in the freezing, freezing cold, the chair goes at about half the speed it can go. It's like the battery is working way harder. And speaking of battery, you can see the slow and steady drop of power left available to you as you make your way along. I consider carefully the distance I'm going. As I have good, big, tires on my chair I can make it over or through most of the unshovelled snow at curb cuts. By the time I make it to the mall, the chair is also creaking and groaning.


I'm not going out much.


Neither, from what I can see, is anyone else.


I'm finding myself with new habits because of the snow. When I come into the apartment building after being out in the power chair, I don't get on the elevator until I do three circles to the right and two to the left on the industrial carpet that the building lays down every winter. I'm pretty good at this now and the marks left on the carpet are a series of perfectly formed circles. I was doing this the other day when a young girl came in with her mother. She came in, wiped her feet, and then came towards the elevator. She watched me with fascination. Then she said, "What are you doing? Are you playing?"


I said, "No, I'm not playing, even though this is fun, I'm wiping my feet?" She looked at me astonished and said, "What?"


I explained that just like her boots get dirty, my tires get dirty. She wipes her boots, I do the same with my wheels. In order to clean them I do circles and that cleans off all of the tires, I go in both directions because then I get better coverage of the tire surface. She listened with interest, glancing every now and then at her dad, who also seemed interested.


"Wow," she said, "Winter's the same for you too, isn't it?"


"Yes, it is," I said laughing.


Winter, the great equalizer.

Positively Magical

The most recent issue of Service, Support and Success: The Direct Support Professional Newsletter is out. You can access it on line or you can subscribe and recieve it monthly. There is no cost for a subscription. To subscribe simply write me at dhingsburger@vitacls.org . Hope you enjoy.

Today's post follows ...

Imagine

"I've never noticed but I imagine it's pretty good," she said, smiling and friendly. She was answering a question I'd asked about accessible seating in other of the live theatre venues that are owned by the same company. She had just explained, as we were chatting, that she is being trained to work in some of the bigger houses and she was enjoying the process. I'd asked her if she'd been to a couple of the big theatres downtown, she said that she had. My follow up question was, "What is the wheelchair seating like in those theatres?"


"I imagine it's pretty good."


"Really?" I said, "Like the very back row and off to the side like in this theatre? That's not 'pretty good' it's a barely adequate after thought." She looked quite offended by what I said and I wasn't really wanting an argument, so I said, "I don't mean to be at all combative or aggressive but wheelchair seating isn't often 'pretty good'.  She asked me what I meant and we explained some of the theatres in town and some of the ways that accessible seating in provided, like driving a power chair up onto a little plywood stand placed at the end of a row, right near the wall.


But I don't want to write about the wheelchair seating, I'd like to consider that she said ... "I imagine ..."


In her mind accessibility is pictured as being there and being more than just adequate. I wonder if that's how non-disabled people picture the world they live in. It's funny isn't it that people say that "When I had my leg broken and was in a wheelchair for a few weeks, I realized how inaccessible the world is. I never imagined that it was so difficult."


My guess is then that most non-disabled people, like the theatre usher, imagine that things are just fine. I imagine that they are comfortable with how the world is structured because they can't imagine it not being fine. I also noted that she got a little offended when I challenged her world view that everything was peachy keen for people with disabilities. Even though we were in a theatre where the absolutely worst seats in the house are the disabled seats. That's not 'pretty good' ... it's less than adequate. I know this to be true because they are also the cheapest seats in the house. The seating with the least value is reserved for customers with the ... well you get the point.


I wonder if the reason I meet so much anger when I bring up accessibility is because I'm upsetting a world view that everything is 'pretty good' for disabled people. To draw attention to inequity is to point out, without mentioning it, their quiet acceptance of things the way they are.


She imagined that the seats are 'pretty good.'


I'd like my imagination to have the same optimistic outlook.


It doesn't.

Not Like Him

I had an interesting chat the other day with an elderly woman who was attending an event with her grandson. The pair of them were having a blast and clearly loved each other. They knew how to make each other laugh and they kept themselves quite entertained  while waiting for the event to start. I was near them because we were corralled into the 'disabled seating area' so she with her wheelchair and me with mine were certain to meet each other.

When her grandson left to get some snacks from the snack bar I mentioned that he seemed like a nice young man. She exploded into pride about how much she loved him - what a wonderful young man he was - how fine a person he is becoming. She wasn't shy on the praise. I asked if she had other grandchildren and she paused and said, "Yes, but not like him."

Then she told me that she was only a recent convert to the use of a wheelchair. She had been stubborn and didn't want to give up walking. However, one day she realized that walking was giving up on her. She was slowly making decisions that were taking her out of her everyday routines. She was giving up her life simply because she refused to consider other ways of getting around. One day, while in her pharmacy, she went to the back where they had wheelchairs. She sat down in one, gave herself a push, and that was it. She got someone to help her find the right chair and her life opened up again.

Problem was that her family didn't react well to the chair. They thought that it was too soon for something so drastic, that she was giving up and becoming lazy, that the chair would make it difficult to get her from place to place. The only one to react differently was this one grandson who saw it as a whole new adventure. He throws her chair into the truck of the car and they go off places. She hadn't been to movies or to theatre or even to the mall for lunch for a very long time. Everything was available to her again.

"They feel sorry for me now because of the wheelchair, so now they visit less and spend less time with me," she said shaking her head. "It doesn't make sense because now I actually can go to the places that they've been inviting me to - and I haven't been able to go."

Her grandson got back with the snacks and she introduced us briefly, he shook our hands, said hello and then returned to his seat by his grandmother.

I wish a wheelchair was just a wheelchair and not an allegory for pity or sympathy or loss. She got her mobility back but lost much of her family. It doesn't make sense.

I only hope that his example will become their practise. But if it doesn't, she's still got a couple of precious things, her mobility and a grandson who's very good company.

Want

I want to stop the screaming in my head.

I want to stop the endless internal monologues that I have to prove to myself that another person's words, or actions towards me, we wrong or baseless.

I want to fully recognize that someones hateful and bigoted action towards me is simply hatred and bigotry and as such exist in their heart not something that exists in my reality.

These are hard things to want, but I want them.

We got on the elevator at the movie theatre. The only way to get to the movies there is by taking the elevator one floor up from main. This time, we were going down after the movie. We got on, pushed the button and started chatting about what we saw. After a few seconds, I said, "We're not moving." Joe pushed the button again and we didn't feel the elevator car shift even a little. He then pushed the open button and the doors slid open.

Two men were standing there, both of whom clamoured on even as we explained that it hadn't moved. Joe pushed the button again and again the car didn't move. He opened and closed the door a second time. The man on my immediate right, the one who was crushing into my space, the man who seemed to be radiating hostility, got off the moment the door opened again, he looked back at me and said, "Maybe it's not working because it's overweight." He put an emphasis on overweight to let me know that the word tasted bad in his mouth.

We sat there in shock at the vehemence of his attack as the elevator closed and this time journeyed down. We got off and I said to Joe, "Well wasn't that aimed directly at me?" Joe just said, "Asshole," and we continued on.

So did my mind.

I began a long talk with myself - explaining that I'd ridden the damn thing UP the theatre, how did he think I got there - I magically appeared at the door. I ride on elevators almost every day of my life, at home at work, on the subways ... they all work. This had nothing to do with my weight.

Versions of this went on for a couple of hours, at increased intervals and decreased intensity, but they went on.

It's kind of like when someone treats me as a person with a disability I am a person of little to no worth - and the long talk begins .. I talk to myself in lists of accomplishments and lists of attributes and lists of skills. I make lists to justify my own worth to myself in order to assure myself that I have worth. Forgetting, of course, that my worth comes from nothing on those lists, my worth comes simply from my status as fellow citizen.

But the dialogues I have with myself to explain to myself that a bigots judgement is incorrect, that a bigots actions are unjustified, that a bigots words are wrong - are long, and tedious, and reek of desperation.

And I want to stop.

I want to become someone who recognizes that hateful people who target me and hurtful actions which are aimed at me are just what they are ... that there's not a thing I can say to myself which will affect them or their behaviour. It's a lot of work with zero payoff.

I want a silence to ring inside me when I am targeted ... I want that silence to shine coldly through my eyes. I want to be a target that isn't pierced by sharp words or penetrated by hateful actions. I want the silence within me be so evident that it begins an internal dialogue where it begins - in the heart where hate lives.

Mars!

In the hour it takes to get home from work, my wheelchair freezes up. Joe has to wear thick thermal gloves to handle the frame when lifting it out of the car. As it sits on the sidewalk waiting for the foot petals and the wheelchair bag to be put in place, it absorbs the very heart of winter. When I transferred from car to wheelchair, I felt like I'd sat down into a throne made of ice. I feel ice crystals forming where ice crystals should never form. As I close up the chair almost seizes up and it harder to push. The rubber on the tires is now frozen and makes a horrible creaking, groaning sound as I push myself towards the door. The cold bites at my face ... how cold is it you ask ... this is not a joke ... yesterday it was 10 degrees colder in Canada than it was on Mars. The cold from the tires eats through my gloves and my hands burn from the contact.

This is why there wasn't a blog yesterday and why there isn't one today. I have chosen the way of the 'shut in,' though that term doesn't imply choice. I could, once home and warmed up, hop onto my power chair and go out for a bit. I could. You wouldn't believe how well my power chair turns on ice. I'm a regular Patrick Chan as I spin round artistically while screaming like a child on a scary ride. Yep, I can go out, in my power chair, but I've chosen not to.

So since I've not been out and about and mixing with people and with the elements, I've struggled with something to say here on the blog. But today, or later on today, we're going out. I'm going to put on six layers on the top, three layers on the feet, and head out into the world. I always look a little like the cookie monster's homeless brother when I'm dressed like this - but hell, I like cookies.

Wish me luck as I go and explore the canals of Mars ... otherwise known as the streets of Toronto.

A Small Piece of Paper

"Saving Mr. Banks," is a movie about the making of the Disney Film 'Mary Poppins.' Joe and I went on New Years day unsuspecting that the movie would be as deep as it was, that the messages it would impart would be as many and varied. I am going to write about a scene in the film which took only seconds but had me sitting up, staring, while simultaneously, reeling in shock. If you are one of those who doesn't like to know much about a film, you may want to come back and read this after you've seen it. I don't believe that this is, officially, a 'spoiler' because I'm not revealing anything about the ending or the main story line.

To set up the moment Mrs. P.L. Travers, the author of the Mary Poppins books, has a driver who discloses to her that he has a daughter who is a wheelchair user. The conversation in the film uses language of the day, I don't need to replicate that here. The moment he tells her is a small moment explaining to Mrs. Travers why he is always so interested in the weather - something she had commented on.

Much later in the film, when Mrs. Travers is leaving and he is dropping her off at the airport she hands him a small piece of paper. She recites names of several well known people that she had written on the paper. She then tells him that these are all people who have 'difficulties'. She instructs him to go home and tell his daughter about them, and to tell her that she can go on to be and do what she chooses. (My wording here is probably way off ... but you get the meaning.)

That was it.

I was stunned.

She instructed him to tell his daughter of the community of people to which she belongs and to let her know that her destiny, like theirs had been, is in her own hands. She instructed him to tell her that she was not alone, that there are others who - like her - have faced disability and who have gone on to live lives of contribution and value.

Extraordinary.

In a movie that had nothing to do with disability - sits this lovely moment. I wonder if the audience heard what was said, I hoped they understood it.

The movie also has a major character with a disability whose disability is evident, is explained, but is not discussed because it just wasn't pertinent to the story. He was notable as a character because of his character, and part of his character was to make no attempt, at any point to hide his disability or to make any attempt at passing - he just was who he was and that was that.

None of these things are really about the plot of the movie. They are just there. And that's why I liked them so much. Disability is just there - it exists as part of our social world - although you'd never know that from watching movies or television.

Both Joe and I liked the story of the film and found it quietly moving. I would have recommended it even if that scene and that character wasn't there ... but it is ... so, if you can ... go.

New Years

Many years ago, when I was at University, I had joined Varsity Christian Fellowship and as part of that joined a Bible study. At one of the meetings, we'd chosen 'Lamentations,' which was, predictably, somber, I was asked to say the prayer before the meeting got going. So I did. Afterwards I got some odd looks from people but never thought much about it. A couple days later I was asked for coffee by one of the Bible study members. He wanted to tell me that I had said a graceless prayer and obviously had never been taught to art of praying out loud. I remember feeling shock at the conversation, I felt shamed too, so I leapt to defend myself saying that I had meant every word of the prayer. He just shook his head and said that I didn't understand. He was right.

But I learned from this that performance was more important than truth in the minds of many.

So as it is New Years, and I do want to write a New Year's blog. I have decided to stay away from anything to do with resolutions. Oh, I do make resolutions, I like them so much I can make them over cereal in the morning, I don't need anything so big as a brand new year, I just don't tell anyone. Because, one year I did, and learned to my shock that I had made the wrong resolutions. Several people told me that I needed to make a different set of resolutions. Their wishes for the changes I made were at the top of the list - but the things they suggested were the resolutions that I heard everyone around me making - losing weight, exercising regularly, eating right, spending more time with family - all perfectly good and quiet serviceable should you need a resolution at the last minute when the question is sprung on you.

But I learned from this that acceptable answers are more important than truthful ones in the minds of many.

So, I've learned not to share my resolutions, partly for fear of more criticism, but partly because, now I'm older, I see that they are incredibly personal. They give a glimpse into how I see myself, the failings that I'm a bit shy to share, they are the things that lurk in the dark corners of my temper and in the hot corners of my fear. So, I'm staying away from that.

Like a lot of people I am stung when the authentic me pokes my face out from behind the mask and gets a solid punch in the face. Like a lot of people I long for the authentic me to be more present in my life. The older I get the heavier the mask is that I carry. I long to set it down, even for a moment. I long for a place of safety where with the mask off, I can speak in my authentic voice and simply be who I am and think what I think and tell the truth that I experience.

I have looked over the last year on this blog and have found that you all, as readers, have pretty much created that place for me. I've written and published things here that are highly personal, that expose myself and my truths to the world. The discussion that follows is often supportive and even when it's critical, it's only seldom unkind.

While I'm shy to tell you my resolutions for me, I want to say that I aim for this blog to continue to be a place where performance is worth less than truth and that acceptable answers are challenged by truthful experiences. Other bloggers have enthused to me about those of you who leave comments here on the blog, they tell me that I'm lucky to have people who disagree with gentleness and who encourage with enthusiasm, I'm lucky to have people who share their own story as they react to mine.

I am lucky.

And I thank you.

I wish for all of you what you have given me. A place where authenticity is honoured and truthful expression of experiences are welcomed. A place where it's safe, in a world that loves appearance and performance and acceptable answers, to simply be who you are. This is the gift you've given me, I know how precious it is, may we all strive to offer these spaces to each other.