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.