Tuesday, March 03, 2015

Stories

 

Ruby was standing, with me, and looking at a tablet, high on the wall, we were both intrigued by the beautiful carvings on the triangular pieces. Ruby declared that the people who did the drawings were very, very good at drawing. I agreed. Then I asked Ruby if she could see the story that the artist was telling. Sometimes stories are told with pictures, not words. She looked at it for a moment long and said, with some awe in her voice, "There is a story there." I asked her to tell me the story. She told the story of a hunt, the hounds were chasing the deer and the birds flew off in fright at the noise that was being made. Hunters weren't far behind because one of the deer had an arrow in it's back. She ran off to find her dad to tell him that there were stories on the stone tablets.

Sadie then was with me and I told her the same thing, that there was a story there. To figure it out, first Sadie counted the number of birds, and deer, and hounds. "There's a story there?" she asked. Her five year old mind went to work. "The dogs are coming in over there," she said. I asked her what happened next. "I see the story!" she said. And rushed to tell me of the action and the story that unfolded in front of her eyes. She was thrilled. "Let's find another story!" she said and rushed over to find another, which she did a couple of tablets over.

It was so much fun.

But.

We caught the attention of several people as they wandered through the same space with us. I know that human beings are by natures, in need of understanding what they see. We all layer meaning on what we see. Many of us tell stories, in our head, about the events happening around us. Those stories are often told with the starting point being, not what's seen, but what's believed and by opinions long ago formed. I remember a woman, from my church, after watching a couple with intellectual disabilities interviewed on a television show, desperately in love with each other, and talking about the future they want and that they hope for. I saw the same program and saw the love they held for each other and the way they gently cherished each other. She saw the same program and said, "I felt so sorry for them."

I wondered what story that those in the museum that day would tell, watching the kids and I, looking intently at tablets, tablets that most would simply walk by, and chatting intently about stories, about hounds and birds and hunters and deer. I wonder what story they tell.

Advocacy for rights and for freedom and for space and for respectful treatment isn't always done by confrontation or by letter writing or by a flurry of emails. I believe that every time we go into the community and live our lives plainly and openly and taking 'belonging' even if it's not on offer, we advocate. I believe that advocacy isn't always seen as such. I remember a little child, a girl with down syndrome, going into a school, the first child with a disability to be enrolled in that school. It was during the time of the closures of the segregated schools. Her walk down the hallway was an act of advocacy and reclamation, even though it wasn't see as such at the time. But it was. A powerful act of change resulted from a long a difficult walk by a little girl who had the intention of simply going to school. Advocacy can be a simple act of being and doing and living the life that belongs to you.

I hope when those who saw us, and watched us, some who watched for an uncomfortably long time, saw a really fat grandpa aged man, sitting in his wheelchair and teaching little girls how to see stories in pictures. I know that when they get home they will have stories to tell about their visit to the museum. I suspect that the story about the disabled and the girls will be one of them. I hope the wheelchair stays in their story. I hope my disability doesn't get erased from the story. Because the wheelchair and my weight are part of the story, leaving that out doesn't make the story inclusive, it makes me anonymous, it erases me, it's kind of a verbal euthanasia. I want to be me in their story and I hope the story can have me in it and be respectful.

Again.

Advocacy can be a simple act of being and doing and living the life that belongs to you.

The more often we do that, we will begin to change, I believe, the filter through which people see us, and see others with disabilities.

And that will change their stories about what they see.

This will be the beginning of complete social change.

Monday, March 02, 2015

Newsletter Released

The most recent issue of Support, Service and Success: The Direct Support Workers Newsletter has just been released. "Like Ability: 10 Basic Skills That Promote Relationships" aims at giving support workers and family an idea of the kinds of skills that people need to learn in order to form healthy, reciprocal relationships. If you'd like to subscribe, or get this single issue, contact me at dhingsburger@vitacls.org

Today's post follows.

A Spectacular Potato

This morning Joe and I were sitting watching a YouTube video about how to cook a potato in a particular and allegedly spectacular way. When it was over we both noticed at the same time that my bus was due to have arrived a couple minutes before. I wasn't anywhere near ready. My socks, slippers, socks combination takes time, my double shirt and arm warmers take more time. The jacket always is a bit of a struggle to get comfortable behind me in the wheelchair. This all takes 10 to 15 minutes. We had 4. And that included getting down to the lobby. So, it would be only jacket and socks.

We flew around the apartment.

Lunch hadn't been packed.

I hadn't been properly travel toileted.

Wheelchair was not fully assembled.

I got out into the hallway, no footrests, no lunch bag. I lifted my feet and pushed. This is hard but I got to the elevator and got down.

No bus.

I checked my watch. It showed that the bus, which is required to wait only 5 minutes, should be on it's last minute waiting. Joe then bursts through the elevator doors and we put the foot rests on. Attach the lunch bag. Joe'd brought my extra shirt and my arm warmers ... I got them on while he checked to see if there was one of those 'Sorry We Missed You' cards from WheelTrans.

Nope.

Just as we were finishing, we saw the bus pull into the driveway.

We'd made it.

It's just after 6 in the morning and we are alert like we'd mainlined caffeine.

On the bus, we realize, I don't have my wallet. My wallet has the key to let me into the office. I'm usually there just before 7 and am the first one in. Can't wait outside in this weather! Joe takes off as the driver begins clamping me down. I stare at the lobby willing Joe to get back before the last clamp in done, before the seat belt is pulled around me. He's not.

The driver says that he can do his paperwork while he waits. We'd been gifted with a lovely guy behind the wheel this morning. Joe arrives as the driver is putting away his paperwork.

Today we just simply forgot that everything takes a bit longer when you're disabled. And we forgot how easy it is to lose track of time when watching a video about how to cook a spectacular potato.

Sunday, March 01, 2015

The Work Of Angels? Maybe Not!

My hand, holding a flesh coloured piece of plastic material.

I had to stay home and finish up some work while Joe and Mike drove up to pick up the girls who were to spend the weekend with us. Luckily, I was just finishing when I heard the key in the lock and turned to see Joe come through the door. I didn't see anyone else and as I was about to ask where everyone was, I was 'hug attacked' from behind by two little stealthy girls who had sneaked up behind my wheelchair. They love startling me like this and, though I should be, I'm never used to it and my 'startle response' always provides ample reinforcement for their prank!

The evening was a really pleasant one. We reviewed the options for the weekends and gave the girls a chance for input as to what they'd like to do. All seemed good with the plan: build a volcano out of a volcano kit; colour some eggs from an egg colouring kit; get a manicure; go to the museum; go shopping for a magic 8 ball and practise ball room dancing. Doing homework was something, the girls figured, that they could fit in somewhere along the way.

I always am the first off to bed and I wished them all a good night and headed off to bed. I thought I saw the girls glance at each other conspiratorially but put it down to a simple misreading - they are angels after all. I lay in bed reading for a few minutes and heard the tinkle of laughter coming from the living room. The ball room dancing had begun and I missed, as Joe breathlessly informed me when he came to bed, Joe's turns around the dance floor polka after polka after polka.

Lights off. I'm snuggling into my pillow and I reach up to pull up the blankets and I feel something shift or move on my neck. I tentatively touched it and I found something warm and a bit damp at the end of my fingertips and before I could prod it to see what it was, it came off in my fingers. I dropped it in shock and it fell off and into the bed. I was up like a shot, wide awake, what the hell just happened. Is my skin just falling off? Had my ear been torn off and landed on my neck? I snapped on the light, my heart pounding, and I found a piece of flesh coloured Plasticine kind of material laying innocently on the sheets.

The girls, or one of them, had stuck it to the side of my neck when they hugged me on arrival. I put it on the side table, shut off the light and fell back into bed.

The next morning, I said nothing.

Then just before going out I called everyone together and said, "I have a story to tell." Ruby and Sadie sat on my front room chair, Ruby on the arm and Sadie peeking over the top. I told them about two angels who came to visit, with tinkly laughter and charming smiles. I talked about going to bed and snuggling in. When I mentioned touching the thing on my neck, the girls, fell about laughing, it was hard to finish the story. Both were wiping tears from their face and then bursting in laughter again.

When we were at the Royal Ontario Museum, Ruby pulled me over to see a statue of the King of Hell:

Image result for king and judges of hell royal ontario museum
Statue of Yanluo, King of Hell, in a fighting pose and looking angry.

She said, "Know why he's so mad? It's because he had Plasticine on his neck all night."

HBH (Ha Bloody Ha)

The long con.

The girls have now developed the patience and skill to go for the long con.

We're doomed!

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.