Saturday, February 28, 2015

W-A-I-T-I-N-G

Right now.

Exactly right now.

I'm on the phone booking airplane tickets. It's been 45 minutes now. I'm listening to terrible music, full of static, while the agent is off doing what agents do. I've just been informed that what I've requested will take a couple of days and several departments to do.

So what do I want that's so difficult?

I'm buying myself a second seat.

I know that I'm big. I know that I need an extra seat. Everyone who flies on the plane with me will be glad that I bought a second seat. Every staff who works the plane will be pleased that they don't have to deal with any social issues about me trying to sit next to someone else.

I hear people yelling about fat people and how we should buy second seats.

But I got to tell you.

They make it really hard.

I want to be clear, though, I'm being dealt with in a courteous and even friendly manner. The agent is apologetic for the difficult process that my request has kicked into place.

We're still not done.

Over the course of writing this I've had to stop several times to answer questions.

It's morning.

And the cost of being different has me exhausted.

This should be easy. It's a seat. It's being paid for. One person is using them.

Oh.

My.

I get the urge, really get the urge, to say, 'to hell with it, it's not worth the effort.'

But it is.

I know that.

Excuse me while I go back to waiting.

Friday, February 27, 2015

Ove


 

For the last few days, I've been falling asleep to the sound of Joe giggling. That's a pleasant way to enter the land of restful dreams. He's been reading A Man Called Ove, which he moved to the top of his reading pile
at my request. I expected him to find the book very, very funny. I also expected him to find the book incredibly moving. I was right on both counts.

Many years ago, when Joe and I were just out of university, we had a long and ongoing argument about literature. We held opposing views. We drank a lot of beer while we argued, often with a passion that those at other tables didn't understand. "Are those boys arguing about books?"

My contention is that most of what we call 'literature' (as opposed to a summer read) is essentially flawed because of lack of inclusion and diversity amongst the characters that people a story. An author, I said, needed to tell a story in a way that reflected the times, the people and the culture in which the story unravels. And as such, deleting people from these stories; people of colour, LGBT people, disabled people,   non-subservient women, inherently diminishes the writer from artist to author and reduces the impact of the story and the relevance to the reader. They may still be great books, but they could have been more. I believed, even then before we talked about 'diversity' and 'inclusion' that it is the job of the artist to open minds as well as to craft a work.

Joe completely disagreed with me. I can't articulate his point well, because I never agreed with it, but essentially he thought that writers were completely free to write what they would in the manner that they wanted (a point we both agreed on) and the determination of a great novel is based on the quality of the story and the excellence of the text alone (a point we never agreed on).

This blog is not about that argument or about who was right or who was wrong. As we talked about this last night, in reference to A Man Called Ove, we laughed about the fact that we were so young as to have the energy to argue about this for HOURS and DAYS. Now our discussions after a movie are often reduced to, you like it? Yeah. You? Nah. Wanna go for lunch?

But A Man Called Ove, I realized, all these years later, is what I was talking about. This book is one of the most inclusive books I've ever read. It is peopled with a community of characters and as such reflects diversity in such a natural way. You never feel that the author is thinking, 'oh better get the gays in now' or 'I can stuff a disabled character in here' or 'now's the time for diversity of faith.' Never. Instead you feel invited in to meet the community of people who live around Ove's house and who people his world.

A Man Called Ove may be one of the best books I've ever read (I won't really know for a year or so, I need to see if it's still with me the way other books from other times are still informing and illuminating my life.) If you are looking for a book that demonstrates the power of community. A book that will make you laugh. A book that will make you cry. A book that you will immediately want to share. You can't go wrong here.

I loved this book.

I loved the people in it.

It moved me, deeply.

Thursday, February 26, 2015

28:7:1

I've been asked, many, many, times, how it is possible that I have enough stories, from my life as a fat, disabled man, to write a daily blog. The question always is asked with a tone that suggests that maybe I should just admit that these things I write about are more fiction than fact. For me, I always wondered how people could go through a whole day and NOT have a story to tell at the end of it, but then, we're all different.

I knew that I might have the 'story advantage' for a few reasons.

1. Visually, I'm 'dually different' I'm really fat, and I use a wheelchair. Right off that sets me up for interactions that are founded in one of those two differences. I have come to believe, from my own personal experience, that the most common social experience of those who are visibly different is social hostility in one form or another. That's not to say there aren't positive experiences, but if you added up every experience and placed them into two categories. Social violence would top social welcome every single time, every single day. I had an argument with someone with a disability who sees me as being 'too negative' about this fact. When I said this, she said that wasn't her experience. I asked her if in her calculations of her days, did she include the staring, the inappropriate comments, the annoyance of the space she takes. She said, dismissively, 'oh, I've gotten used to all that.' Well, maybe, but they still count.

Stories arise out of these kinds of interactions if you stay open enough to still see them, which I do, even years later.

2. I require help from others. My need of assistance pulls me into an odd kind of intimacy, even with strangers. Even the briefest interaction, like asking someone to reach something for me, results in a story pretty much every single time. I don't tell that story, to anyone other than Joe, to everyone all the time. Asking is an act of both bravery and vulnerability and establishes a dynamic that is entirely different from person to person and situation to situation.

3. By nature, I am a story teller. By nature I am introspective.

All of these I had realized a long while ago and I realized them all through the writing of this blog. But I wondered if those were the only reason. On a whim, I decided to try an experiment. I didn't tell Joe of this until after it was over because he was part of this little test. We were heading down Yonge Street, from Bloor to Dundas. It's a fair walk. The day was one that felt warm because the temperature was up to -8. I decided to count the number of interactions I had with random strangers on the street versus the number of interactions that Joe had. Joe is an affable guy so this was a very fair measure.

By the time we were down to College Street, in my mind this is about the half way point, I had spoken to 17 people and had non-verbal conversations with 3. Now the speaking to was mostly, 'excuse me' or 'sorry, can I get past please.' The non verbal conversations were about negotiating space - who's going which way and when. Joe had had 1. He's said hello to someone he recognized from the building we live in.

By the time we were down at Dundas, I was up to 28 verbal and 7 non verbal. Joe was still at 1. This means I had interactions with 34 more people than Joe did. Thirty four! That's a lot. I admit that I was surprised at the numbers, I expected that I had more interactions, I just didn't know exactly how big that number would be. I suspect it would be higher in summer with more people out on the sidewalks walking.

So clearly, at least to me, the more interactions you have, the more likely a story results.

However, this little study answered two questions. One we just looked at. The other? I'd wondered why I was always so socially tired when I got home from being out. Why, since I became disabled, I seemed to have a much greater need for privacy and quiet when I got home. I guess that's understandable now.

28:7:1 Wow

Wednesday, February 25, 2015

Two Babies

A few days ago I had the opportunity to hold a brand, new, baby. A little girl. She was only days old. I had been making my way through a mall near me when I heard my name called out. I turned to see a woman waving, someone I did not recognize, and I turned to roll back to her. It turns out that she'd heard me lecture a few times and had been assigned to read two of my books as part of her college studies. She wanted to say "Hi." She was sitting, as she talked with me, with a baby carriage that she was slowly and gently pushing forward and then pulling back.

After we exchanged a few pleasantries she asked if I'd do her the honour of letting her take a picture of m with her baby. She explained quickly, seeming to want to make the request understandable, that her little girl had Down Syndrome and she wanted, one day, to have this picture to show her child. I was immediately, and profoundly, moved by the request. I eagerly agreed. I like kids. I like all the possibilities that they represent.

Mom roused the infant from sleep and placed her in my arms. She opened her eyes, looked at me, and fell immediately back to sleep. Twice honoured. She felt safe in my arms. I felt wonderful holding her. The picture was snapped. I asked if I could hold the baby for just a wee while longer. When we were done chatting, I passed the little girl over and we said our goodbyes.

I left thinking about another time and another baby. Then, again, an infant girl with Down Syndrome. The difference was, then, that the child had been abandoned at birth and was adopted by a woman who worked at a service agency that I consulted to. She was thrilled and proud of her little girl and when I came to visit, I'd get to hold the baby.

I remember the first time I held that baby all those years ago. Institutions were still doing brisk business, segregated schools still were the primary option and work shops rather than work places were where all paths led. I held her and tried to think of a future full of colour and of choice, of self determination and of voice, of the possibilities of love and the possibilities of adulthood. I tried to think of this for her. I tried, in my heart to imagine her into a future that she would create, rather than a future that others would make for her. I tried and it was hard. Really hard. I remember the weight of that baby in my arms and the weight on my shoulders as I recommitted myself to work for change.

This time, I held the baby, it was different somehow. The institutions are closed, segregated schools are gone, people with disabilities are finding their way into meaningful lives. I have been to high school graduations. I have been to weddings. I have been served, in shops, by people with disabilities. It's different. But. It's not different. I didn't know about the abuse of people with disabilities back then. I didn't know about the rate of bullying and teasing back then. I knew these things happened but I didn't know how big the problem is. I held this baby, this little girl, who felt safe in my arms. Who slept in my arms. Who trusted herself to me. I held her and again felt a need to recommit myself to work for change.

All of us in the disability community, those with disabilities themselves, those who parent those with disabilities, those who work to support those with disabilities, those who are family and friends of those with disabilities, those who work for and advocate for justice and rights and freedom for people with disabilities, we all need moments where we recommit ourselves to the fight for change. We need to have moments when we look, again, at why we do what we do. We need to realize it matters.

Really matters.

Because there is a baby girl, with Down Syndrome, sleeping comfortably in the trust that her future will be bright.

And by God, we can't break that trust.

Tuesday, February 24, 2015

Frozen Pipes!


We are still using a rental car as we deal with the aftermath of being struck by a huge delivery truck. We are attempting to follow the instructions of those who tell us to be grateful that we weren't hurt. But that's cold comfort when dealing with the insurance people, the adjusters, the uncertainty of what happens next. We heard yesterday that our car was old, had 300,000 kilometres on it, and the cost of repair exceeds the worth of the car. It's a write off. I explained that the value of the car, to me, was that it fit my needs as a person and our needs as a couple, perfectly. But cost, as always, supersedes value.

So we are on the hunt for a good used car. We don't want a new car. We don't want to spend a lot of money. The car is used essentially to pick me up from work and take me home. Occasionally a trip to Barrie. Occasionally a trip to Newmarket. For any other travels we rent an accessible van.

One of the things we have learned from the rental car came as a bit of a shock. We've had a Volkswagen Beetle for many years and when the wheelchair is put in the back, it's in the body of the car. Now, with the rental, it's put in the trunk. Yesterday we took our longest run in the car as we travelled up to a golf course just off the 400 highway and when I got out of the warm car to sit in the wheelchair, I almost went into shock.

The metal was as cold as it was outside, colder even. I was embraced in this icy grip and cold shot through my clothes and straight into my bones. Yikes. Double yikes.

We got in and headed to the washroom, we are men over 60 after all, and I was terrified that my waterworks would have frozen solid. I mentioned this to Joe and he said, 'Let's hope a pipe didn't burst.'

And that did it.

We howled.

Just what we needed. To hell with the car and the insurance and the what next - there's still a good laugh to be had. They say laughter is the best medicine - I don't know about that but I can tell you it warms the blood. Exactly what I needed right then.

Sunday, February 22, 2015

Gosh, Sorry, My Mistake

It was a blisteringly cold day. Joe needed new slippers and there was a sale on at the Bay. So out we went. Some may think that on a day where the temperature was 30 degrees below 'just stupid cold' was foolhardy, remember we're gay and it was a sale. My chair struggled a bit on the sidewalks which were covered in part snow, part slush and part salt that couldn't work because it gets to cold for salt you know. But we made progress.

When we reached the Bay, we pushed the door openers and rushed in. Immediately inside the door is the elevator. Its door opened as we came through and we climbed on and pushed the up button. It went down. Shit. We were so in a rush to get out of the cold we hadn't looked to see which way it was going. The door opened on a woman with a walker with her elderly husband and a younger woman in a wheelchair.

We apologized saying that we hadn't noticed it was going down and we were going up. We would have got off and let them have it, after all they had been waiting. But they were crowded at the door, leaving no passageway, and they were really, really impatient.

The door closed.

We went up.

Let me tell you about this elevator. It exists really only for those with mobility issues or those with strollers. It is beside a set of stairs. When you enter on the street level, as we did, there are 5 or six stairs up and five or six stairs down. Elevator waits are not long. I imagine that the elevator was back to pick everyone up in a couple of minutes.

Let me also tell you that I felt really badly about having rushed and not having noticed that the elevator was headed the wrong way. But. It was a mistake. I wasn't selfishly commandeering the elevator. This is one that is so quick that waits are never long, it's not a big deal. It was just a mistake.

It was a mistake we apologized for.

And received angry, put out faces in response.

The exact kind of faces I get from the non-disabled when I want or need space, when they have to step around me, when they have to share space with me. The exact faces.

I wish I had said, after the apology was rejected, "Listen we live in a world where everyone is impatient with us, shouldn't we, at least, be patient with each other?"

But, then, that's why I have a blog isn't it?

What I didn't say then, I can say now ...

Shouldn't we, at least, be patient with each other?

Saturday, February 21, 2015

What's Human?

Joe and I were settled into our seats at the movie theatre and watching the pre-show. Shortly afterwards an advertisement played. I innocently watched it and then was sucker punched by the tag line. I felt stunned. I felt a little under attack. I wondered if everyone in the theatre was looking over to me. Fighting of a feeling of needing to flee, I stayed, pushed it all aside and watched the movie.

What was the ad?

Take a look:


(Captioning is available, click the cc button.)

Now, to be sure, there is a wheelchair user in this video, but it looked a bit like he wandered in on set, it's not clear what amazing act of fitness he's performing, but he is there.

At the end, after watching all these extremely fit people, who purportedly are all better leaders, better parents, better, um, everything, we have learned that fitness is the primary characteristic which results an a person being good at anything. OK, that's the kind of shit you expect from this kind of advertising. All of this would have flowed over me but that last line, shit that last line, that's the kicker.

"Be more human."

The fitter you are, the more human you are.

The stronger you are, the more human you are.

Humanity can be measured, of course, because if there is a 'more human' there is also a 'less human.' If extreme fitness, because lets admit that the people in this film don't represent even most people who go to gyms, leads to the ultimate claim of full humanity then those who fall short aren't fully, completely and equally human.

The new Master race isn't blond and blue eyed. No the master race is comprised of thin, strong, fit people who are better workers, better parents (!), better leaders.

Yep, that's what we need, more cultural messages that make it clear that there are those worthy and those unworthy. Never has 'fit' and 'unfit' been more clearly designated.

So when I'm treated like shit by one of these new gods of humanity, I'm simply getting what I deserve.

I am less.

They are more.

The scale is easy.

A son who, after an accident, gets up out of his wheelchair and walks rises into humanity and love and acceptance.

A son who, after an accident, has a permanent disability stays seated and sinks into the less that human status.

Forgive me but I don't think humanity can be measured that way.

I dare to suggest that there are times when I do, forgive me for contradicting Reebok, feel fully human and fully alive. Completely, entirely, human. This does not come when I've done my exercise routine. It comes when I've fought back the urge to rush on but instead took a moment to be kind. It comes when I have to stay the impulse to rush and instead let gentleness overtake my hand. It's comes when I'm called to be fully human and I respond.

Because fully human isn't something you achieve.

It's what you are called to be.

Being fully human isn't measured by the weights you lift in a gym but by the weight you lift off another's shoulders. Thing is, that builds strength too - just not the kind that will ever be in a Reeboks ad.

Be more human.

Indeed.

Friday, February 20, 2015

Snake Oil Porn

(video description in text of post)

This viral video, as it is posted on YouTube, dares you to watch without crying. I watched it. I anticipated tears. I'm a crier. I'm not ashamed of that fact.

I didn't cry.

I did scream though.

WTF! WTF! WTF!

So, let's review. Here we have a father who is seemingly driven to distraction by the fact that his son eats. After a fight the son moves out, leaving a distraught mother and and angry father behind him. He gets a job, is injured on the job, ends up - gasp - in a wheelchair. Father cries. It's not clear if he's crying because of regret regarding his treatment of his son or that his son is now a cripple. Father then gets son out of wheelchair and drags him around, sons arms over his shoulders, feet dragging along behind. Son is then shown standing up ... no longer a cripple and is welcome to eat food.

This is parental love, according to the scriptwriter, when it comes to a child with a disability.

This brings on tears.

A film showing a father taking a gay son around and throwing him at women and into strip shows and onto the beds of prostitutes would probably not be received in the same way. But gay people are, as a group, acknowledged enough to be at the point of demanding acceptance, equality and rights and rejecting forced change.

Because you can't force change.

But then, for many disabilities, you can't force change either.

The video gives no indication that the kid needed a bit of physio, a few exercises, a couple of miles being carried like a sack of potatoes.

But it's all good in the end.

Even though the miracle shown is completely unbelievable.

HE WALKS!!

OH MY, HE WALKS!!!

What utter shite.

This is a movie that uses and exploits disability in the worst way. It isn't made for people with disabilities. It certainly isn't made for parents of kids with disabilities (many of whom might find this painful to watch, others might find that it carries with it the suggestion of blame for not loving, doing, caring enough). It's made for no one in the disability community.

It uses disability, exploits and manipulates the disability experience for the benefit on the non-disabled. It's worse than inspiration porn, it's snake oil porn - love as cure - abuse and lack of acceptance as a restorative process.

What's the main message of this ...

Watch this space tomorrow - and I'll show you.

Tuesday, February 17, 2015

Thank Heavens for the T(ea) in Winter

On Sunday Joe and I had raisin scones with tea.

Sunday also happened to be the coldest day of the season thus far. We were out only because we had a desperate need to get some groceries. The cold, day after day of freezing cold, had prevented us from making it down to the store. The store is on the subway line but it's at an inaccessible stop so there is nothing to do but walk down. And there was no way that we were able to bear the cold to go that far. During the rest of the year, the other three seasons, we like the walk down but on Sunday morning, the store might as well have been in Kapuskasing.

I decided to try and book a WheelTrans bus, holding out little hope, but managed to get a ride down and a ride back, with enough time in between to shop. As it turned out we had lots and lots of time because the store wasn't very busy. Few people were on the street and fewer were doing their grocery shopping. The aisles, free of the crowds of people normally there, felt a bit like there had been a Zombie Apocalypse and we were on a mission to get the makings of a spaghetti pie. The garlic in the sauce would have protected us ... oh wait, that's vampires. Without people to edge by, we were done our grocery shopping in record time.

There was time to go to Tim's, right across from the grocery store. This being Canada and this being Tim's there was a line up. No cold weather, or zombies, or vampires can keep a Canuck from a cup of Tim's best. Known for coffee, Tim's also has great tea. Joe like steeped, I like green. We got our tea, picked out our raisin scone and then found a table.

It was the coldest day of the winter thus far, but here we were, in the middle of the day, warm and safe, with a tea and a scone, with time to relax before the ride home on the bus.

We rode home seeing cold snap in the air outside the bus. But let winter do it's damnedest, the tea had been hot and the scone had been warm. Ever notice, right there near the centre of the word, there's a "T(ea)" in winTer. For this I give thanks.

Monday, February 16, 2015

Family Day

Family Day.

That's what today is in Ontario.

I remember the discussions around this day being created, essentially so we'd have a holiday in February, and the decision to have it be a day that celebrated 'Family.' While I love having a day off in winters like this one that is deep and dark and cold, I wasn't really warmed by the 'family' aspect of it.

Don't get me wrong, I love the idea of 'family' ... I love all kinds of families ... biological families ... intentional families ... community families ... I think the idea of a group of people, however they are connected, define themselves as 'family' is a wonderful and powerful thing. I do not deny the social benefits and social power of 'family' - however that family is constructed and defined.

But, for me the word 'family' has such baggage. For a long while 'family' got married to 'values' and gave birth to hate and prejudice and violence. Family values, the ones that require love and acceptance and tolerance and generosity of spirit and kindness of mind, are wonderful values. But the 'Family Values' that were preached from pulpits, plastered on placards, and compressed into sound bites weren't about those things, they were about hate. They aimed at doing something that seems outrageous if you have any belief in the 'human family.' They aimed at redefining lgbt people as 'other than family,' 'other than welcome,' 'other than valuable.'

Suddenly we were no longer sons and daughters, brothers and sisters, aunts and uncles. And, of course, if we were parents our children should be taken from us. Family Values gave people a way to use two words that individually had positive meaning as a way to cloak their movement, a means to motivate people to fear for their own families and their own values - because we were now not only 'others' but 'threats to their way of life.'

I still see bumper stickers from that era, 'Hate Is Not a Family Value.'

I agree of course.

But for a long while, those that pretended to be defending the family, ended up by defiling the whole concept of family. Those that said they were defending 'values' ended up by simply attempting to impose their own.

It was a dangerous time, family was a dangerous word.

But I celebrate family day because I want family to become a dangerous word again. A word that says, 'we are family' 'we protect and love each other' 'all are family and all are welcome.' I want families of all kinds to respect families of all kinds. I want families of all kinds to fight for the rights of families of all kinds.

Because.

As much as they tried to convince me I wasn't, I am, and always have been, family.

Sunday, February 15, 2015

Like a School Then

She was wrestling with a huge suitcase, while trying to keep track of two small children, as she got on the subway. She was just in front of me, she got on and stopped. There were crowds of people behind me, I couldn't move, so I called out to her, she turned, saw that she was blocking the passageway and quickly moved out of the way, her words full of apology, her eyes full of embarrassment. In a few seconds I was in the disabled parking space holding on as the train left.

As we approached Dundas, she was there again, the big suitcase, the two kids and worry, lots of worry. She spoke to me saying that she would be getting off next. I told  her I was getting off too. She wasn't familiar with Toronto and wanted to assure herself that she was getting off at the right stop. I assured her. I also told her that at this end of the train, at the Dundas stop, there was a huge gap between the train and the platform. She needed to mind the gap with the suitcase and encourage her children to hop over it.

She thanked me, the subway came to a stop, she got off first and stopped, again just a foot or two from the door. I need more space than that to shoot off over the gap, so I asked her to move again. She, again, quickly moved. Her distraction with the size of the suitcase and the care of the kids was self evident.

There were a lot of people getting off the train so we followed her and her kids, having promised we'd keep and eye on them and would let her know if they dawdled to far behind. They didn't. When we were all through the turnstiles she looked lost for a second and then approached us. She wanted directions to where she was going. We were as relieved as she was that her destination was only a block and a half away.

Joe had a clearer sense of a way that she could go, an easy route, that would keep her indoors most of the way. So he gave her directions. She thanked us, we assured her that it was no problem. She said that she had been praying that she would meet someone safe at Dundas who could help her find her way. We were, she said, answer to her prayer. She continued by saying that she could tell we were safe right from the start. "You didn't yell at me about my suitcase. I'm having trouble, it's so big."

"Surely people haven't yelled about your suitcase?" I said. Not meaning to deny the reality of what she'd just said but to express shock that she would have been subject to that. "Oh yes, I have been in the way on this whole journey so far." Her eyes filled, now, with tears.

"You have a right to the space you need," I said patting my wheelchair arm, "take it from me, I've learned this."

"The wheelchair, it is like a school then," she said laughing and said her goodbyes and thank yous..

"Yes," I said quietly to her retreating back, "The wheelchair, it is like a school then."

Friday, February 13, 2015

They Are There

It was the simplest of things.

To understand what I'm going to write about today, I need to speak of my personal experience with discrimination, prejudice and social hostility. These are things I have experienced, at varying levels, as a constant throughout my life. Things perhaps multiplied by disability or sexuality, but not necessarily caused by either. To state it simply, I experience some kind of social violence every single time I leave my home and go out into the community. Most often there are multiple acts, seldom are they subtle in form. Weight is conceived of as a social evil and those who are overweight, significantly like I am, are a socially approved target.

The wheelchair made things worse but only by a bit. The assumption automatically was that my weight was the cause of my wheelchair use, or more precisely the laziness which cause my weight was also, ultimately, the cause of my needing a wheelchair. Those with SMD (Street MD) have the ability, of course, to diagnose and they also have the solution, "You lazy bastard get out of that chair and walk off the fat - you don't need that thing!" I get medical advice like this, delivered by those in line ups and those driving by, at least once every couple of times I go out. Strangers try to pat my stomach with the comment, "Gotta lose this blubber, hey?" they laugh to let me know that they are clever.

I anticipate prejudice and discrimination and hostility from the moment I leave the door of my home. I've been told I see it because I expect it. Um. No. I see it because it's there. People don't hide it. The disgusted looks, the pointing and whispering, and of course the comments: "Look at the size of him!" "Jesus you don't want to see that when you go out." "What the fuck is the matter with him, they should sew his mouth shut, that would do it."

So. I do what I do in my day because I won't cede space, I won't be forced in. I won't fight for a diverse world by refusing to go into it. And so it came to be ...

... yesterday afternoon, waiting for Joe, in my power chair, in the lobby of the building I live in. There are two couches in our lobby, hideous things which encourage people to simply move along, and a young man, maybe 26 or 27, thin, floppy light brown hair, comes and sits on one of the couches. He glances at me, smiles and then looks away. I become aware that I did not smile back. I don't anticipate much but I don't want to be thought of as rude, so I say, "Have you been out yet? Is it terribly cold?" He answered that it was very cold.

Then we had a conversation about the weather, about the upcoming long weekend, about the area. He was then joined by a pretty, very pretty, woman about his age. She sat next to him, his arm casually around her shoulder, and asked, "So what are we talking about then?" With that she joined in. I learned that they were waiting for someone who was perpetually late. Through the window I see Joe coming and I make my way to the door. The fellow I was chatting with offers to get it for me, I thank him and tell him that I'm good to get it on my own.

It was a perfectly pleasant conversation.

I worry.

I worry that because my experience of prejudice, discrimination and hostility is so common that I begin to think, because I do begin to think, that I'm alone in a world of people who despise me for my weight, for my difference. I'm not. There are good and kind and easy people out there, who simply manage to interact with me with social ease.

I forget they are there.

When people make pig noises as I go by.

When strangers and shopkeepers glare at me when I try to get by.

When someone calls from the car, "Haven't you got a mirror, you fucking fat fucker?"

I forget they are there.

But, they are.

Wednesday, February 11, 2015

Cars, Snow Banks and Panic

PANIC!!!

We were nearly home when suddenly a thump hit the car, there was a wrenching of metal, the sound of breaking glass as the back window shattered and a hard crunch where our car was thrust into a frozen, icy, snow bank. When it all stopped we took stock of how we were. No obvious signs of injury. Joe got out of the car to see what had happened and how badly the car was damaged. I heard his voice, he was being calm, as he had to be.

Me?

I was in a panic.

Would our car be drivable?

If it wasn't, how would I get home? I've only got my manual chair and we were 'close to home' for a car but 'miles from home' for a manual wheelchair.

Was my chair damaged?

I take really good care of my manual chair because it's irreplaceable, they don't make it any more. It fits me perfectly. It serves me well. It's travelled the world with me. I turn to assess the chair. It's covered in broken glass. I can't see if it's been scrunched.

How am I going to get back from work each day?

Joe picks me up from work every day. It's our routine. It suits us. It works well. What if the car's repairs take a long time. What do we do? How do we organize our time?

We can't afford to buy a new car right now. What if it's written off? What then? What are our options? We need the car to get me around.

I called 911, they tell us to get information from the other driver and then take the car to the collision centre. I tell them I have a disability and am worried about the driveability of the car. They say to get a tow truck. I ask how do I get home? They say the police don't attend these things. I say this isn't helping and hang up.

They call back.

I'm told that though they don't normally do this kind of thing, since there's a mobility issue they will send a police car. Great. Someone to help me navigate getting home if I can't get home. The police car does not come. We try moving the car and it seems to be drivable, at least for the distance home. I call 911 to cancel the police car, the one that didn't come.

So that's what happens when Friday the 13th comes on Wednesday the 10th.

Tuesday, February 10, 2015

Luck?!?

Subway surfing!

On our way down to the movie theatre with the girls, because it was bitter cold, we took the subway. We always get on the very first car, through the first door, for a couple reasons, there are  fewer people and there is always a wheelchair spot. As we got on and I took my spot the girls, seeing all the space, decided it was the perfect opportunity to subway surf. If you've never done it, all it is is planting yourself, firm to the ground, and then, not hold on to a hand rail. The goal? Stay standing.

Sadie is still on subway surfing's bunny slope. She stands in the direction the train goes, feet firmly planted. This is the safest way to subway surf as you can easily balance as the train stops and starts. Ruby, however, has moved on to extreme surfing and that's standing cross ways. Much more difficult to balance and, in her eyes, much more fun. The four of us were laughing as they were getting into position.

There were few people around us, maybe 10 or 12 and all of them women of various ages. They were, as a group, really enjoying watching Ruby and Sadie have so much fun. They also saw what Ruby and Sadie didn't see and that was the supervision they were getting and the boundaries that were being set. Fun doesn't require anarchy. After the second stop a few women were encouraging both girls to 'go for it.'

As we were approaching our last stop, I said to the girls, "I'm going to take you on." I felt the looks of everyone. How could this be? The girls looked at me with curiosity too. I turned my chair slightly and then as we approached the stop, simply put my arms out, like they each do as the train comes to a stop. This struck both girls funny bone, seeing me perfectly secure in my chair with my arms out. It also struck the others riding as well and we all had a good laugh.

Getting off the train one of the women leaned into me and said "Those are very lucky girls." I whispered back, "Being loved should never have to be an act of luck." She nodded and said, "But it is, isn't it?"

I know that's true.

I wish it weren't.

Sunday, February 08, 2015

Sadie's Gift for Alchemy

We were out on snowy sidewalks yesterday. In many places, because snow had not been adequately cleared, there was only enough room for a couple of people, or one large wheelchair, to get through.

I have a right to space.

As we were out with Ruby and Sadie, we formed a line up, first me, then Sadie, then Ruby, then Joe. As always, with the girls, this turned into a game and our laughter cracked the silence, made brittle by people's frustrations with getting around. When we finally made the intersection that would take us over to the subway, we all gathered again, more naturally, as a group.

A older gentleman, who had been in a rush, had earlier made a big deal about getting around me as I made it through one of the more narrow passage ways. For the most part people could see the space and could see the chair so were patient (some obviously so and wanting credit) and we made our way easily.

He did not. He passed, looked at me, grunted words I could not hear but his tone was easily understood. I glanced back and, smiled, it was the only thing in my arsenal as it's hard to think about comebacks when driving a power wheelchair through crowds while rolling on snow and slush.

For all his rush he arrived at the corner only seconds before we did. We waited for the light, Sadie said, "Dave, can I hold on to your wheelchair when we cross the street?" I think she was anticipating that we'd ask her to hold hands and wanted to pre-empt the request. She's wanting to show, more and more, that she'd growing up. I told her she could.

She place her hand on my arm, which was resting on the armrest, and waiting.

Her touch was magic.

The older guy saw this, with shock, and looked at me again. Now I wasn't some random guy in a wheelchair out to cause traffic flow problems on the sidewalk, now I was in relationship, somehow, to this child. His face, constantly angry since the brief exchange only a few minutes ago, softened. "What a lovely child," he said. "She is," I said. Sadie beamed.

Ruby and Sadie, both, have the magic touch. Joe doesn't have it. Nor do any of our friends who are adults and out with me. I think it's because people think that those who are with me are paid to be there. I think they think that those relationships, friends, partners, cannot exist for me - money must be paid for people to walk with, be with him. That relationship, which counters the stereotype of people with disabilities living lonely, sad, lives is dismissed by simply applying another bit of bias: my tax dollars pay for people to be with the fat guy in the wheelchair! So, even though my relationships are based on affection not finance, they are brushed away.

But!

The touch of a child is very different. It's a declarative touch. It's a touch which announces, "This guy is someone I am safe with, this guy is someone I can trust, this guy makes me laugh, this guy is someone who belongs to me." It's a touch that can't be dismissed.

Again.

It's a touch that can't be dismissed.

It's a touch whose  magic is alchemical, taking a word, surgically changed by difference and reattaching what was removed, like Peter Pan to his shadow, I become just another person out with family in the winter. While "other" makes me less than, becoming just "another," makes me equal to. And that's what Sadie did, her hand touched my arm, and suddenly I simply became another person waiting for the light.

She crossed in safety.

I crossed, for the moment, allowed the space I needed.

Saturday, February 07, 2015

The Pledge

Before I became disabled, I was perfectly aware of access issues and of the diversity of barriers that I would face. True, I had no idea about the constancy of experiencing one kind of barrier or another. I knew these things because for a little over a year I was a pusher. I worked with young adults in their final years of high school, all of whom had one kind of physical disability or another. I also knew it because I had friends who used wheelchairs and we often went out together.

But.

Wow.

Pushing the chair and being in the chair are very different experiences. As pusher I got the kindly looks, others didn't see me - they say my generosity and my caring spirit (puke). Sitting in the wheelchair gives a different world view. So I came to know hostility as a barrier that I would not have identified. I came to understand that the world was not mine and that any space I had was 'given' by others, never rightfully my own. I came to understand that difference and disability are at fault for the social awkwardness and social cruelty of others.There is such a strong social convention for blaming difference for the punishment it receives, it's hard to avoid that trap. So some of this kind of thing was new to me.

Even so.

I pledged to myself.

And.

I promised Joe.

That, when we were going somewhere, I wouldn't start thinking about the difficulties of managing my way over uneven curb cuts or through narrow just fitting doors or the anxieties of dealing with the social aspects of disability become a reason for deciding against going somewhere. I knew that actual physical, can't get in, barriers were a different thing. My pledge was that if I could go and wanted to go I would go.

I almost broke that pledge yesterday. We were talking about something that we do on occasion, something we both like, and as we talked I began to think of all the ways that this was difficult for me and, part of me just didn't want to go thorough it. I could do it, I wanted to do it, but ... I didn't want to deal with what I'd have to deal with.

I began to say 'no' knowing Joe would think I didn't want to, but I did, I could have lied and said I was tired. But I didn't, I started talking about all the myriad barriers to going.

Joe gave me a hard stare.

We went.

Friday, February 06, 2015

Home: Naturally

Today I want to turn my blog over to Open Future Learning and their music video:


Happy Friday!

Thursday, February 05, 2015

A Moment In Winter

OK.

Yesterday's post about the woman making a comment about feeling sorry for people in wheelchairs during her 'person on the street' interview. If you remember I wrote that she was just generally talking about weather, two people in motorized wheelchairs motored by and she made a quick comment about 'feeling sorry for them.'

My blog was intended to be just about that moment. The moment she saw them and switched to the 'feeling sorry' statement. Even though at that moment, and that moment alone, those people in those chairs were easily navigating the sidewalk.

I wanted the post to be about that.

Several emails later, and in the comment section itself, people were concerned that I was under representing, in that post, the real difficulties of winter for people with disabilities. For those in manual chairs. For those facing curb cuts that haven't been plowed. For those who have to push others over slippery surfaces. Everyone, well more accurately - most, people were very nice.

One of the difficulties in writing a disability blog is that there are always so many ways to approach a story and there are so many differences within the disability community. The fact that I have a big chair with big tires which make it easier (not easy) to navigate snowy sidewalks and plow through snow banks built up at curb cuts doesn't mean that others have the same ease. I know this because I have plowed the way for many people in smaller power chairs.

But, I was writing about a moment. Just a moment. In that moment those two people were not having difficulty. In that moment the speaker simply saw disability, saw wheelchairs and went naturally to pity and feeling sorry for. That's all I wanted to talk about.

In order to write a blog that people will read, I try to stay focused on a single event and not go into a larger context. I want my blog to be readable - quick read, point made - go about your day. This is why I didn't go into winter and the difficulties that come with it. It wasn't about winter, which I've written about before, it was about the turn, the notice, the pity.

Some also feel that I'm angry all the time and these things ruin my day and they worry about my mental health. I assure you, I wrote the blog, then went about my day, having, yesterday, a pretty good day. I'm not filled with anger,I can be angered in a moment, but that's it. In this situation I wasn't so much angered as 'WTFed' ... if that isn't a feeling on the feeling chart it should be. Anyways, worry not, I'm OK and I don't see something like that and scream at the screen 'YOU'VE RUINED EVERYTHING!' Because, they haven't.

Anyways, I wrote everyone back who sent emails, thanking them for their feedback, and said I'd write something here. I apologize if the manner in which I wrote the post didn't make it clear what I was doing - but just so you know that's what I was attempting and a better writer would have captured that moment better. However, you're stuck with me. Thanks for you concern, and your letters, and your comments!!!

Wednesday, February 04, 2015

WTheF?

Is everything we see filtered through prejudice, bias, and personal history?

Is it possible just to see what's there?

These questions come from something I saw on television. And of course in writing about how people see and interpret what they see, I wonder about what I saw and how I'm interpreting it - but I can't fix that. Anyways, back to watching television.

Joe is a Weather Weenie.

That's the slang name for those people who actually watch the weather channel. This does not include those who switch over to catch the local weather, they are sensible people getting information. Weather weenies actually watch the weather channel for enjoyment. Let's just say I'm on the sensible side but I cope with Joe's peccadilloes and eccentricities. (Hi Joe!)

So we (he) was watching the weather station and I turned my head when they were doing one of those 'person on the street' interviews. The person was saying talking about how bad the snow was and how the sidewalks were slippery and dangerous. As she was speaking two people in power chairs motored by behind her. She turned and saw them and then turned back to the camera and said, "Of course, it's the people in wheelchairs that I really feel sorry for."

WTF (I am using such restraint right now because I want to write that phrase out in full but shan't.)

They motored by.

Motored.

When Joe and I are out in snowy slippery weather he holds on to me for support. Well, not me exactly but my wheelchair. Several times he's remained vertical because he's had hold of the handle on my chair and used it to keep himself upright.

But she turned to see two people in wheelchairs managing just fine, if not better that people walking and seemed to see something much different, much worse, much more difficult for the poor cripples. WTFuck?? (Sorry, I couldn't stop myself.)

Can't people ever see us as disabled and just fine?

I don't want people to 'Oh, I don't see your disability' me. WhatTF does that mean? I want to be seen, as disabled, and happy, and competent, and equal? I want to be seen as disabled, using a wheelchair and getting on fine on a snowy sidewalk. Is that too much to ask?

WTheF?

Tuesday, February 03, 2015

What Mary Said

This morning, as is my habit, I sat down to read the comments left on Rolling Around in My Head overnight. I enjoy the discussion that happens in the comment section and read every single comment that comes in, some I read several times over. One that came in last night struck me. It was from Mary. She said:

My comment was going to start "wow, I'm so lucky that my friends are..."

And then I wondered where that sentence was going to go. I'm so lucky that my friends are... friendly to me? That my friends are nice to me? That my friends are considerate of my needs?

I'm so lucky that my friends are prepared to behave like friends. Hmmm.


I understand exactly what Mary is saying here. When you have a disability, any kindness that you receive is often attributed, by others first and eventually yourself, to luck. It couldn't be that we, as disabled people are deserving of kindness or the rightful recipients of love.

I have been told that I'm so lucky that Joe stayed with me after my disability.

A woman I know, a wheelchair user who requires a fair bit of personal assistance, is constantly barraged with people saying that her husband is a 'saint' for not leaving her, for still loving her. She told me once, in a private moment, that she began to feel that the weight of other's perception of her as his burden began to crush her. She began to distrust her husband's love, began to see it as coming from a sense of duty, not a sense of affection. It was only after she admitted these feelings to him that she was able to hear, from him, from his heart, that he loved her. She says she does not feel lucky, she feels loved.

For parents of kids with disabilities there are thousands of subtle ways that tell you that your child is sent to you because you are saintly - heaven's special child chosen for you - and the message is, yours is a kid that no one would want but that you got stuck with so pull out the saintliness and get to work. When you express that you love your child, as is, the sentiment is often, 'Your child is lucky to have a parent like you.' A child is lucky, LUCKY, to have a parent that loves them? Yeah, luck.

I am worthy of love.

I am worthy of respect.

I am worthy of affection.

I am worthy of consideration.

Those sentiments, I think, are hard for most of us to actually get to. But for people with disabilities they are a radical statement of personhood and value.

I am not lucky.

I am worthy.

So there. 

Monday, February 02, 2015

Newsletter Update: Today Post Follows

Hi, this month's issue of Support, Service and Success, the Direct Support Workers Newsletter has just been issued. As Ontario celebrates Family Day this month the issue is on Family and Staff Perspectives. If you'd like to subscribe, or to see this one issue, just email me at dhingsburger@vitacls.org

Today's post follows.

It's NOT Wheels: Shit

It was ugly.

Really ugly.

We had been wandering through the museum, sometimes ahead of, sometimes behind, a group of tourists. We both noticed that one of the men was having trouble walking and looked to be in some pain. But he came from my father's era of grit before grumble, so he just kept on. We'd see them all standing together, shoulder to shoulder, as a guide stopped a talked about various things they were seeing.

Near the end of our visit, and I think near the end of theirs, we rounded a corner and saw that the man who'd had trouble walking, was now sitting on a chair that someone had given him. He looked, for the first time, as if the pain was ebbing. But he also looked near tears. From a man like this, that's a big deal. Me, I cry, easily, and I'm OK with that, much to my father's horror.

What had upset him, upset both Joe and I as well. As soon as he sat down it was like he was cut from the herd. there was space all around him, where previously he'd been right in the thick of it. More than that, even though the chair was set to be near the front, people had stepped right in front of him, as if he wasn't there, as if he didn't need to see what was going on, as if he had dropped out of existence.

I'm used to people doing this to me in museums and galleries. I'm told by others with disabilities that it's a common phenomena. But I always thought that's because I was a stranger to them and as such my 'other' status left me irrelevant. This guy was with the group, they knew each other. They called each other by name. They travelled together in a bus.

And he was dead to them.

Maybe this is why so many people fear wheelchairs. Somewhere on their journey to needing an assistive devise of some kind, they experience the loss of status that comes with sitting down. I'd always thought that wheels were necessary to the experience.

But I was wrong.

It's not wheels.

You know what it is and I know what it is, but what is is, isn't wheels.

Shit.

Sunday, February 01, 2015

Super Bowl / Not

"Are you going to watch the Super Bowl today?"

"No, I don't watch sports."

"Oh, right, I forgot, you're gay."

"What?!?"

For the record, other than being attracted to men, not women, there are very few things that I do because I'm gay. No, I don't watch the Superbowl. This has NOTHING to do with anything other than the fact that I don't like watching sports. It also has to do with the fact that I'm Canadian, why on earth would I get excited about an American sporting event? I don't know who's playing, I don't know where they are playing, I won't know who wins, I won't care who wins.

I don't like sports.

I am gay.

Those are two separate statements that have nothing to do with each other.

The person who said this to me isn't the least bit homophobic, he's a warm, welcoming guy who is perfectly comfortable with his sexuality and with mine. I like him as a person. He's knows I'm writing about this today. He's good with it. He recognizes that he 'slipped' into stereotypical thinking (which is different from prejudicial thinking) and, for the record, we both laughed it off.

I bring this forward because I've realized that we all have to move away from both prejudice and stereotypes, as different phenomenon, when dealing with people. Also because I was forced to watch hockey and baseball as a child because it was seen as 'unnatural' for me not to be interested in these 'boy' things. I detested those hours for two reasons, first - I don't like watching sports; second it was a clear message to me about how broken I was because I wasn't exactly like every other boy.

Stereotypes hurt as much as prejudice does.

So.

If you run into me today, let's talk about the Oscars.