The package was waiting on my desk, having travelled all the way from Germany, and looking quiet mysterious. I am not gentle when it comes to opening a parcel or package, so it was ripped open quickly. Inside was a wonderful book of poetry, Evidence, by Mary Oliver. Along with the book was a poem from the book that had been framed:
Halleluiah
Everyone should be born into this world happy
and loving everything.
But in truth it rarely works that way.
For myself, I have spent my life clamoring toward it.
Halleluiah, anyway, I'm not where I started!
And have you too been trudging like that, sometimes
almost forgetting how wonderous the world is and
how miraculously kind some people can be?
And have you too decided that probably nothing important
is ever easy?
Not, say, for the first sixty years.
Halleluiah, I'm sixty now, and even a little more,
and some days I feel I have wings.
Mary Oliver
This book, and this poem, meant so much to me. The book sits beside my desk and has become my 'when I need to ponder' book. She write evocatively with images that somehow bring me to a place where thinking is possible.
So it's my birthday.
I'm sixty.
And some days I feel I have wings.
Friday, December 21, 2012
And Today Is ...
So, I'm going to wait until morning. And will write something should I make it to work and the world still be spinning. Beside my desk is a book of poetry that I received from a wonderful reader (who I don't know if I should name) as an early birthday present. I loved the book and have kept it at work because I read it, often, when I need to settle my mind. The book came with a small framed poem from the book that I'd like to share with you all ...
But only if I get to work.
And the world is still here.
Thank heavens for opposing predictions, I got this graphic from Shannon's blog!
Thursday, December 20, 2012
The New That Made Me Cry Update
The link to the story is below, it took a while to find it ... but for those who asked. I don't know how to imbed this:
http://www.citynews.ca/2012/12/13/the-inside-story-mathew-sheppard-update-2/#related-content-preview
http://www.citynews.ca/2012/12/13/the-inside-story-mathew-sheppard-update-2/#related-content-preview
The News That Made Me Cry
They cut deep into his brain.
Deep.
They implanted some kind of electrodes.
Deep, down inside.
He said he was excited.
He said he was frightened.
The story aired on a local television station here in Toronto a couple days ago. A young boy, a grade 8 student, had a rare condition wherein his body was overtaken by constant shaking. He dreamed of being able to fill a glass of water. He dreamed of being able to eat on his own. The operation held out the promise that these dreams would come true.
A reporter interviews him and shows film clips of him before the surgery. As the interview continues it unfolds that the young boy, grade 8 and anticipating grade 9, was being teasedwithout mercy, without ceasing at school. He dreaded walking the hallways. He was terrified each day on waking. His mother, who loved him, who's voice conveyed such affection, spoke of her heartbreak as he began staying home, not wanting to go out. The stares of others, the glances that cut, the comments that pierced, well, he just couldn't bear them anymore.
He began riding in the car only with the windows up.
So people couldn't see him.
He lived in fear of students.
He lived in fear of shoppers at the mall.
He lived in fear of other drivers, other passengers.
He lived in fear of people.
Grade 9 and the transition to a high school filled him with dread. He knew it would get worse. He faced his future with fear.
And.
Then there was the possibility of surgery.
He wanted to pour himself a glass of water.
He wanted to independently feed himself.
He had surgery. It was successful. The reporter, playing for the tears of viewers, has him pour himself some water, feed himself some food. He talks about being at the new school and that the teasing had abated. He talked about no longer fearing going to the mall. Mother is relieved. He is happy.
And the reporter ... indeed all the media asked all the wrong questions.
They asked him what it was like to be able to pour himself water.
They asked him what it was like to be able to feed himself lunch.
They asked him what it was like going to the mall.
The wrong questions.
Asked of the wrong person.
Why didn't they ask how it could be that we live in a society that a boy lives in fear of going to school, knowing the bullying he faces because of his disability?
Why didn't they ask how it could be that the we have come to believe that we have to implant electrodes deep into the brain of a young boy in order for him to gain even the slightest bit of social approval.
Why didn't they ask how it could be that the responsibility for the bullying was transferred to a boy that shakes rather than a system that tolerates hatred and acts of hatred?
Why didn't they ask what would have happened if the surgery hadn't worked? If he couldn't pour water but still had to endure the unendurable walk down a hostile hallways.
Why didn't they ask people to think about the thousands and thousands of kids with disabilities, kids with differences who RIGHT NOW are fearing the morning, fearing the bus ride to school, fearing their fellows?
Why?
Because he could pour himself water.
And that makes a good picture.
Why?
Because, in some small way, they, and all like them, really don't, down deep disapprove of kids born with a target on their back being shot at.
Deep.
They implanted some kind of electrodes.
Deep, down inside.
He said he was excited.
He said he was frightened.
The story aired on a local television station here in Toronto a couple days ago. A young boy, a grade 8 student, had a rare condition wherein his body was overtaken by constant shaking. He dreamed of being able to fill a glass of water. He dreamed of being able to eat on his own. The operation held out the promise that these dreams would come true.
A reporter interviews him and shows film clips of him before the surgery. As the interview continues it unfolds that the young boy, grade 8 and anticipating grade 9, was being teasedwithout mercy, without ceasing at school. He dreaded walking the hallways. He was terrified each day on waking. His mother, who loved him, who's voice conveyed such affection, spoke of her heartbreak as he began staying home, not wanting to go out. The stares of others, the glances that cut, the comments that pierced, well, he just couldn't bear them anymore.
He began riding in the car only with the windows up.
So people couldn't see him.
He lived in fear of students.
He lived in fear of shoppers at the mall.
He lived in fear of other drivers, other passengers.
He lived in fear of people.
Grade 9 and the transition to a high school filled him with dread. He knew it would get worse. He faced his future with fear.
And.
Then there was the possibility of surgery.
He wanted to pour himself a glass of water.
He wanted to independently feed himself.
He had surgery. It was successful. The reporter, playing for the tears of viewers, has him pour himself some water, feed himself some food. He talks about being at the new school and that the teasing had abated. He talked about no longer fearing going to the mall. Mother is relieved. He is happy.
And the reporter ... indeed all the media asked all the wrong questions.
They asked him what it was like to be able to pour himself water.
They asked him what it was like to be able to feed himself lunch.
They asked him what it was like going to the mall.
The wrong questions.
Asked of the wrong person.
Why didn't they ask how it could be that we live in a society that a boy lives in fear of going to school, knowing the bullying he faces because of his disability?
Why didn't they ask how it could be that the we have come to believe that we have to implant electrodes deep into the brain of a young boy in order for him to gain even the slightest bit of social approval.
Why didn't they ask how it could be that the responsibility for the bullying was transferred to a boy that shakes rather than a system that tolerates hatred and acts of hatred?
Why didn't they ask what would have happened if the surgery hadn't worked? If he couldn't pour water but still had to endure the unendurable walk down a hostile hallways.
Why didn't they ask people to think about the thousands and thousands of kids with disabilities, kids with differences who RIGHT NOW are fearing the morning, fearing the bus ride to school, fearing their fellows?
Why?
Because he could pour himself water.
And that makes a good picture.
Why?
Because, in some small way, they, and all like them, really don't, down deep disapprove of kids born with a target on their back being shot at.
Wednesday, December 19, 2012
OK Question Answered ...
So ... I got an email about yesterday's post from someone asking that I write and tell her what the glitch was at the Elgin Theatre where we saw Snow White with the girls. Apparently she's going after Christmas and was wondering if it was something she should know. I thought about it and realised that if I'd read a blog about what happened and what the easy fix was, I'd have appreciated it. AND I get to put in more pictures.
We were advised to be there right at opening time to pick up our tickets and to make sure that everything was fine with the seating. We got there and got in and got the tickets, no problem. I asked the ticket people about the seating and they said that the ushers would assist me to my seat, but assured me that everything was in place and ready for me.
So we went up and found a bench near the doors which were not yet opened. One of the ushers, when asked, pulled out a small map of the theatre and showed me where our seats were. I didn't orient myself correctly to the map, as I was to find out, so I picked the door nearest where I thought I needed to go. I sat back and relaxed, all had gone smoothly.
When the doors opened I headed over to where I thought I should enter. The door was excruciatingly narrow. Yikes. My chair did not fit. I began to panic. This I did not anticipate. The usher, a man who had worked at the theatre for years said, before I could ask, 'All the doors are the same size.' Mike noticed that I was being held back by a small piece sticking out on the arm of may chair. He gently pushed the arm in and I made my way through the door. It's a very narrow door. My powerchair fits everywhere pretty much. My manual is much wider and wouldn't have made it through the door no matter what was pushed in.
I didn't go out and join the kids for juice at intermission. Instead I sat in and figured out how to get out. I didn't want to cause any bother so I decided to wait until everyone was gone and then get through the tiny door. After the applause died down, we waited, the kids were patient, probably because we took them down to the front and they could look down in the orchestra pit, there was even a fellow there, one of the musicians who talked to them briefly. Nice guy. Then it was up and to the door.
As I was heading over to the door Ruby yelled, 'Hey look at that door!' She was pointing to the first two doors which were WIDE really, really WIDE. I sailed through with at least 8 inches on either side of the chair. No problem at all. Awesome - except for the worry during the show and the missed intermission. Awesome because that means I can come back to the theatre, I'd put it out of my mind as I didn't like the trial of getting in. Why the usher didn't know that the doors were decidedly NOT the same size, I don't know, but he didn't.
But, now you do.
And I've learned a lesson. Check things out for myself. The usher had probably never had to look at the doors for access or for any other reason actually - but I'm the one who needed it, I should have looked, and will in the future.
But minor glitch.
Because this is what we got at the end of the day in the car on taking the kids home:
Tuesday, December 18, 2012
Going Evil Queen
Sunday was a day for a family outing. Mike, the kids, Joe and I went to the theatre to see a Christmas panto called Snow White.
Going to the show took the entire weekend. On Saturday the girls went
to get their hair done. Sadie kept saying, "I'm not going to cry," when
she talked about getting her hair done. Later she determined that she
was going to tell Bill, the hairdresser, that if he was going to was her
hair he needed to use water, not just soap. We agreed that she would
give him instructions on how to wash her hair. She nodded her head
decisively, pleased to now have control over what was going to happen.
Bill looked amused as she gave him instructions but got right into it,
asking her both permission and direction all the way through the wash
and cut.
Ruby got her nails done while Sadie got her cut, then they swapped places. Ruby loves getting her hair done and agreed, reluctantly, to her mother's wish to have her hair cut a little bit. She likes and trusts bill so she sat back and relaxed as he did her hair. She falls almost into a trance when she gets her hair done but she did agree to a picture just as she got into the chair.
So with hair and nails done we went home and did some cooking. The girls really got into decorating their gingerbread people. Ruby was insistent that her's was a girl. They robbed some of the marshmallows from a box of Lucky Charms to add to their choices in decorating the fine fellows.
Sunday morning involved all getting dressed up. Well, that's not entirely true. The girls got dressed up and the rest of us guys just got dressed. We all figured we made a fine backdrop for the two elegantly dressed girls who made their way with us to the theatre.
What was the slight hitch that we experienced?
I'm not going to tell you.
I'm not going to write it down.
It was small.
I choose to remember what we laughed about.
Because that's what I want to think about when I think about the girls first night out at the theatre.
(Should Ross Perry ever read this, I want you to know that you've added a new phrase to our lingo with the kids. On our way out I was joshing with Ruby about something and I said, "Hey, watch out or I'm going to go all Evil Queen on you." Ruby laughed so hard I thought she was going to fall over. It's now part of our lexicon.)
Monday, December 17, 2012
The Neighbourhood As It Should Be Or How To Talk About it When It Isn't
When I was a boy and I would see scary things in the news, my mother would say to me, "Look for the helpers. You will always find people who are helping." ― Fred Rogers
Thank you Mr. Rogers for giving us a way to talk to Ruby and Sadie about what they saw on the news yesterday.
Sunday, December 16, 2012
Scarf
 |
| Photo description: a long green scarf: not the scarf in the story |
I like that scarf.
We were on our way over to the museum, an amazingly kid friendly place, and the kids were excited about going over. We like it as a place to go because when the kids get engaged there, you can hear their brains grow by the questions that fly out. It's fun. There's never any argument when the goal is a building complete with dinosaurs, bugs and bats. It was a particularly cold morning and as soon as we got out the discussion started about who got to ride with me in my power wheelchair. I smiled remembering how it used to be a bit of a fight, but now they know that they will each get a turn and that I am scrupulous in ensuring that each kid gets the same distance. So, no fight.
Sadie wanted to go first, so Ruby informed her that going second was best anyways, and we departed. It was a bit windy and we could all feel the cold, even bundled up as we were. Sadie asked me to stop for a minute and then she reached down and pulled at my long scarf. First up and around one side, then up and around the other side. The scarf is generous with its length and it easily slipped around her, leaving room to spare. Once she had the scarf firmly in place, we were off.
When Ruby rides with me, she talks about everything. When Sadie rides with me she likes to point out various things she sees along the way. She's discovered the power of words to define her world and she loves making the world make sense by pointing and naming. She has such joy with this that one could picture her at the beginning of the world calling out - 'That's a flower.' 'That's a rock.' 'That's a dog.' Sometimes she'd stop and say, 'What's that?' pointing at something wanting to know what it was. I'd get the privilege of gently placing a new word into a forming vocabulary. As someone who likes words, as someone who understands the joy in using words to define a world - this is cool.
So we were sailing along, just before the transfer point from one kid to the other, I noticed that we were being noticed. I'm used to being noticed. But this time, there was a difference. I wasn't being noticed as much as Sadie was. Riding a soft ride, wrapped in miles of scarf, grinning happily as if she was pleased with her purchase at Bubba Wheelchair Motors. I looked to see what they saw - a happy little girl, warm in the cold, loved in the world. Yeah. I'd smile at that too.
At the transfer point Ruby launched up and into place. The scarf, made warm from Sadie's ride was instantly around her shoulders. Ruby begged me to race ahead to get to the ROM first. Everything is a race to that girl. So we took off. She took hold of the scarf and pulled it a little tighter. I pretended that she was strangling me. This struck her as very funny and she screamed out, "Faster or I will strangle you with your scarf," although it was hard for her to get the word out as she was choking on the giggles. I was laughing hard too and she was bouncing a bit on my stomach that's like a 'bowlful of jelly.' As we were approaching the museum there were more and more sets of parents and kids. Now I noticed Ruby being looked at as she had struck gold in the Grandpa Olympics.
I've decided.
I love that scarf.
Saturday, December 15, 2012
The Adventure of the Stable Dog
(video of images of choir spaces.
Lyrics at bottom of post.)
I joined in on a discussion about favourite Christmas Songs and was surprised to find that my favourite was a Canadian Carol that no one had heard of ... The Carol of The Stable Dog ... it actually moves me to tears. I can't sing it because if I do the tears start to come before the end of the first verse, so it's a 'listen to' carol for me. Joe and I play Christmas Music starting somewhere near the end of November until just a little after Christmas. We play NO Christmas Songs ... no 'Frosty,' no 'Rudolf,' no 'Jingle Bells,' we do the gay apparel thing but we don't 'Deck The Halls.' The only exception to this is when the kids are here - they love Rudolf with a mad passion.
Ruby and Sadie are both into Christmas ...
 |
| Picture of Mother and Father casually dressed with two girls, one three in a sparkly red dress, one six in a Santa dress |
... as you can see from the picture of Mike, Marissa and the kids at Ruby's Christmas pageant where she and her class performed a song. We weren't able to make it but Ruby has promised us a reprise when she's here this weekend. And this weekend, I'm going to introduce the kids to the Stable Dog. I've got activities planned and everything - Joe shakes his head and mutters about me having been a camp councillor in my youth - and verily I was, and even more verily, an experience that has served me well.
So tonight we are diving into quiet because the weekend is going to erupt into sound and chaos. We're all going to see Snow White, the panto, on Sunday and the girls are getting their hair and nails done on Saturday getting ready for the event. It's going to be a fun weekend and we love the anticipation of the arrival ... or, should I say ... the advent.
Lyrics to Carol of the Stable Dog:
“Why do you look so sad,’ Mary asked the stable dog.
“I have nothing, nothing to give a king.
Nothing that shines, nothing to bring,
here at the feet of God.”
I’m so afraid in this foreign land,” Mary said to the stable dog.
“Fear not, kind mother, know no alarm.
I will protect you - keep you from harm,
here at the feet of God.”
And all through the night he stayed at her side
And he kept them safe with his heart of gold,
and he kept them warm in the winter’s cold,
and the gift he gave was his faithful soul,
there at the feet of God.
“Do you hear sweet caroling?” Mary asked the stable dog.
“It’s the tiny angels as they fly,
singing your son’s first lullaby,
here at the feet of God.”
Friday, December 14, 2012
Imagine
There is a house that I see quite regularly on my trips up to work on WheelTrans. Every driver has their own unique way of getting me from where I am to where I'm going so my route is always different. More than that, every ride has different people with different destinations, so often my route from one day to the next is completely different. But, still, there is a house I see fairly often. It always takes me by surprise because I've developed a habit of killing time playing Word Mole on my phone enjoying the extra challenge of hitting the letters to make up a word while rolling around in my chair as the bus chugs along - I look up less than I did before. So, when I see the house, I'm always surprised.
I noticed it first off because it was under renovation and I could see by the trucks servicing the crew working there that they were installing an elevator. It's a large old mansion and as they'd been tearing up some of the interior I'd glimpsed in at a huge beautiful space. The elevator had me drooling with envy, how cool would that be. I always loved Katherine Hepburn's entrance in Suddenly Last Summer as she descended, talking, into the foyer of a beautiful home whilst sitting in an ornate elevator. I did feel the prick of envy when thinking of the rick folks moving into a mansion - with an elevator. The huge imposing steps informed me that any fantasy about somehow getting to know these folks and somehow getting a dinner invitation and somehow having to use the upstairs bathroom so that I could ride in the elevator up and ... descend talking, was a little unrealistic.
With the trip overseas, I'd not been by there for a fairly long time when I passed there a couple weeks ago. I looked up and saw that the house was nearing completion. To my surprise a long and beautiful ramp had been installed, so wonderfully designed that it fit right in as if it had always been there, always been planned for, and generations of wheels had made their way up and onto the veranda. Hum, the fantasies back. I may just have to write an elevator monologue after all.
I don't know why but my immediate thought was that some rich family had a child, or a parent, or a friend who was a wheelchair user. I know that I thought it was wonderfully kind, I've got to stop that, that they'd built a means of access to ALL of their friends and family. How very nice.
Indeed.
Then when I went by the house this week I was startled to see that the house is now occupied and decorated lavishly for Christmas. The fellow leaving the house, in his wheelchair via HIS ramp, is a suit and tie guy maybe in his late thirties. His wife, also lovely in her suit, followed him and they kissed, got in their separate cars and went off. An ordinary enough scene all across the city.
I don't know why, in my mind, the house was being adapted for someone with a disability, not by someone with a disability.
I don't know who has put fetters on my imagination, but they are there.
There is a house, with a ramp and an elevator and a family. It is as it should be - yet I still have trouble imagining it a possibility.
I noticed it first off because it was under renovation and I could see by the trucks servicing the crew working there that they were installing an elevator. It's a large old mansion and as they'd been tearing up some of the interior I'd glimpsed in at a huge beautiful space. The elevator had me drooling with envy, how cool would that be. I always loved Katherine Hepburn's entrance in Suddenly Last Summer as she descended, talking, into the foyer of a beautiful home whilst sitting in an ornate elevator. I did feel the prick of envy when thinking of the rick folks moving into a mansion - with an elevator. The huge imposing steps informed me that any fantasy about somehow getting to know these folks and somehow getting a dinner invitation and somehow having to use the upstairs bathroom so that I could ride in the elevator up and ... descend talking, was a little unrealistic.
With the trip overseas, I'd not been by there for a fairly long time when I passed there a couple weeks ago. I looked up and saw that the house was nearing completion. To my surprise a long and beautiful ramp had been installed, so wonderfully designed that it fit right in as if it had always been there, always been planned for, and generations of wheels had made their way up and onto the veranda. Hum, the fantasies back. I may just have to write an elevator monologue after all.
I don't know why but my immediate thought was that some rich family had a child, or a parent, or a friend who was a wheelchair user. I know that I thought it was wonderfully kind, I've got to stop that, that they'd built a means of access to ALL of their friends and family. How very nice.
Indeed.
Then when I went by the house this week I was startled to see that the house is now occupied and decorated lavishly for Christmas. The fellow leaving the house, in his wheelchair via HIS ramp, is a suit and tie guy maybe in his late thirties. His wife, also lovely in her suit, followed him and they kissed, got in their separate cars and went off. An ordinary enough scene all across the city.
I don't know why, in my mind, the house was being adapted for someone with a disability, not by someone with a disability.
I don't know who has put fetters on my imagination, but they are there.
There is a house, with a ramp and an elevator and a family. It is as it should be - yet I still have trouble imagining it a possibility.
Thursday, December 13, 2012
Pushing the Button
It was a powerful sense of sadness.
Powerful.
I logged on at work and there was a message stating that my mailbox memory was nearly full and I had to delete some messages from both my "inbox" and my "delete folders". I decided, then and there, to just get it done. I was surprised to see that I hadn't done any clean up of my emails since I started at Vita nearly six years ago.
I went to click delete and then saw that it was from Manuela, Vita's Executive Director at the time who suddenly passed away a year and a half ago. I read the email. It was written in a style that was unique to her. It seemed oddly formal and then I realised that this was at the start of the journey we would have together over the next several years. It was hard, and it felt like a betrayal, but I hit delete.
Over the next hour I stopped now and then when a 're' line struck me as interesting and I found that I was tracking the course of our relationship as both boss/employee and as friends. There were the outraged emails she wrote when she disagreed with something on this blog. There were the congratulatory emails she sent when something I'd worked on had gone well. Delete. Delete. Delete.
A couple of times I read something that made me laugh out loud.
A couple of times I found myself wiping away tears.
A couple of times I paused to wonder at the odd relationship we had.
But.
I deleted them.
That powerful sadness which first struck me began to give way.
The incredible guilt which greeted each push of the delete button also gave way.
Because I realised that I didn't need virtual memory of our relationship - I've got the real thing.
Wednesday, December 12, 2012
Equations
I was recently in a room surrounded by other gay men. I'm not often in an all gay environment and it should feel a bit like coming home. No matter how much I am fully engaged and included in the larger community, there is a difference that is always subtly there. When we were younger Joe and I would talk about how we needed to go to a gay bar or a gay event just to escape the sense of being surrounded by heterosexual culture and heterosexual assumptions. Since I've become a wheelchair user, that opportunity has virtually disappeared, few of the gay bars in the city are accessible and as such we've grown deeply out of touch with what's going on and the social opportunities that are available.
But, back to being in a room surrounded by gay men. I became aware of it because of a whisper. I looked over and saw two men, my age, looking over at me. They were suppressing giggles. I glanced around and saw that my arrival in the room had thrown a rock into the pool of hilarity. My weight, my wheelchair, the 'all' of who I am seemed to make me the perfect foil for jokes and for eye rolls and facial OMG's. I went very still inside, like I do when I realise I am not safe. I looked for, and found, a place where I could move my wheelchair to to be out of sight of the group.
You may think that you would not have moved.
You may think that you would have said something.
But there are things in this story that I'm not telling you, and those things would have made those responses entirely impossible and highly inappropriate. I do have to edit my life sometimes. But the saying something or the moving are not what this blog post is about. It's about something much deeper than the temporary discomfort I felt in that moment. It's about how people seem incapable of LEARNING from their own experience and applying it to the experience of another.
The It Gets Better project, with it's laudable goal of supporting LGBT? youth who are experiencing bullying and teasing demonstrates the power of a communities response to a serious issue. The idea that 'It Gets Better' is one that gives hope of a brighter future to kids who are in hostile environments. One would hope that those who experienced Bullying and Teasing in their youth, or in their workplace, or in their church or in their family, would have a deep, deep, deep understanding of what it's like to be on the brunt end of a pointed finger, to be on the sharp end of another's joke, to be struck across the face by words that hurt, to have blood drawn from the hostile stares of others. One would hope.
In my mind, I like to imagine that everyone who experienced bullying, experienced the sense of 'outsiderness' that comes with difference, would be really cautious and careful with their words, their attitudes and their actions. But instead it seems to be more like, ... It Gets Better, In Fact It Gets So Good That You Get To Become The Tormentor.
Why is it wrong when something is done to us but acceptable when we do it to others? I think it's because we see ourselves as innocent victims and those we do it to as 'deserving' it in some way. Our behaviour becomes defined by the 'otherness' of the 'other' what is held in common is brushed aside while that old, old social equation of difference = lesser gets pulled out and dusted off again.
I think, therefore, that those of us in the disability community, who experience prejudice or inaccessibility should be hyper alert to our own prejudices and our own attitudinal inaccessibility. I think that because we KNOW we have a responsibility to put KNOWING to good use.
Life is lived for learning, is it not?
The first time you are called a name, the first time you feel that sting, should be the last time you ever call a name. Right?
It's another simple equation, one that I prefer.
Experience of cruelty = Drive to be kind
But, back to being in a room surrounded by gay men. I became aware of it because of a whisper. I looked over and saw two men, my age, looking over at me. They were suppressing giggles. I glanced around and saw that my arrival in the room had thrown a rock into the pool of hilarity. My weight, my wheelchair, the 'all' of who I am seemed to make me the perfect foil for jokes and for eye rolls and facial OMG's. I went very still inside, like I do when I realise I am not safe. I looked for, and found, a place where I could move my wheelchair to to be out of sight of the group.
You may think that you would not have moved.
You may think that you would have said something.
But there are things in this story that I'm not telling you, and those things would have made those responses entirely impossible and highly inappropriate. I do have to edit my life sometimes. But the saying something or the moving are not what this blog post is about. It's about something much deeper than the temporary discomfort I felt in that moment. It's about how people seem incapable of LEARNING from their own experience and applying it to the experience of another.
The It Gets Better project, with it's laudable goal of supporting LGBT? youth who are experiencing bullying and teasing demonstrates the power of a communities response to a serious issue. The idea that 'It Gets Better' is one that gives hope of a brighter future to kids who are in hostile environments. One would hope that those who experienced Bullying and Teasing in their youth, or in their workplace, or in their church or in their family, would have a deep, deep, deep understanding of what it's like to be on the brunt end of a pointed finger, to be on the sharp end of another's joke, to be struck across the face by words that hurt, to have blood drawn from the hostile stares of others. One would hope.
In my mind, I like to imagine that everyone who experienced bullying, experienced the sense of 'outsiderness' that comes with difference, would be really cautious and careful with their words, their attitudes and their actions. But instead it seems to be more like, ... It Gets Better, In Fact It Gets So Good That You Get To Become The Tormentor.
Why is it wrong when something is done to us but acceptable when we do it to others? I think it's because we see ourselves as innocent victims and those we do it to as 'deserving' it in some way. Our behaviour becomes defined by the 'otherness' of the 'other' what is held in common is brushed aside while that old, old social equation of difference = lesser gets pulled out and dusted off again.
I think, therefore, that those of us in the disability community, who experience prejudice or inaccessibility should be hyper alert to our own prejudices and our own attitudinal inaccessibility. I think that because we KNOW we have a responsibility to put KNOWING to good use.
Life is lived for learning, is it not?
The first time you are called a name, the first time you feel that sting, should be the last time you ever call a name. Right?
It's another simple equation, one that I prefer.
Experience of cruelty = Drive to be kind
Tuesday, December 11, 2012
It's All In How You See It
I love giving 'warm' gifts. Throws. Blankets. Those kinds of things. These, when I saw them, just fit the bill. Roots makes really fine clothes and when I felt the sweats, the first thing I thought was 'ummm, warm.' They were in my shopping bag in an instant. I just loved imagining the girls getting in them and feeling all warm and snugly. When they arrived for the weekend, it was cold out. Really COLD. The air was doing that magical thing where the coldness seems to snap and spark in front of your eyes.
I knew that they had to have their sweats, then and there.
It's COLD out.
Kids need to be warm.
After they were wearing them, curled up together in our big chair and deep into watching Arthur Christmas on DVD, I was joking with Mike and Joe about my inability to hold back on things like this. It really could have waited to Christmas. I said, "I really have a problem with waiting to give the girls some of their gifts."
A voice came from Ruby, eyes still glued to the television, "I don't think that's a problem at all."
So I guess, everything, our personal idiosyncrasies and peccadilloes included, are all a matter of perspective.
Monday, December 10, 2012
I Need Your Opinion
On November 14th, in dealing with a company, I was brought to tears because of the way I was dealt with as a person with a disability. They had something I needed, as distinct from wanted, and as such I had to put up with an extraordinary, and unthinkable, amount of frustration. In the final moments, and this is rare for me, I broke down in tears. Joe watched helplessly as this all unfolded over a two hour period that I was on the telephone - mostly on hold. He, like me, couldn't believe what was happening.
I asked the woman if the call had been recorded.
She said that it was.
I told her that I was going to write in and make a serious complaint about the ordeal.
I don't think she cared all that much.
And, here's the thing, I didn't write.
I started to several times but every time I did, every time I realised the length of the story and the depth of my emotional reaction to it I simply pushed away from the computer. I couldn't do it. I let myself off the hook, as I normally chastise myself for not at least writing a complaint, because I felt emotionally traumatised by what had happened.
But today ... I started to think about it again. This time with less emotion as the distance, in time, has allowed me to see that I had every right to be frustrated and that what happened was simply outrageous. Simply. Outrageous. And I'm ready to write that letter.
But, I wonder ... is it now too far way from the event to matter? What is the shelf life of a complaint, a serious complaint? I don't know ...
I thought I'd ask you.
I asked the woman if the call had been recorded.
She said that it was.
I told her that I was going to write in and make a serious complaint about the ordeal.
I don't think she cared all that much.
And, here's the thing, I didn't write.
I started to several times but every time I did, every time I realised the length of the story and the depth of my emotional reaction to it I simply pushed away from the computer. I couldn't do it. I let myself off the hook, as I normally chastise myself for not at least writing a complaint, because I felt emotionally traumatised by what had happened.
But today ... I started to think about it again. This time with less emotion as the distance, in time, has allowed me to see that I had every right to be frustrated and that what happened was simply outrageous. Simply. Outrageous. And I'm ready to write that letter.
But, I wonder ... is it now too far way from the event to matter? What is the shelf life of a complaint, a serious complaint? I don't know ...
I thought I'd ask you.
Sunday, December 09, 2012
Happy Hanukkah
I popped over to niece Shannon's blog and she had a couple of music videos up that she'd discovered through CBC radio that were celebratory of Hanukkah. I loved one of them in particular - I thought the singing was completely joyful - I smiled all the way through. Here are two videos from the Maccabeats:
and ...
Happy Hanukkah All!!
(Thanks Shannon for finding these and for sharing them.)
and ...
Happy Hanukkah All!!
(Thanks Shannon for finding these and for sharing them.)
Saturday, December 08, 2012
At The Heart of Kindness
I came out of the building and turned towards the ramp. A young mother was pushing a double pram up towards the store. When she saw me she got a guilty look and began to rush up. I immediately waved to her and called out, "Don't rush! I'm comfortably seated." It's a fairly long ramp so she slowed down and continued her way up. We had a brief interchange - one that gave me pause, here it is:
"Thank you for your patience," she said.
I indicated the kids she was pushing and said, "Well if we want kids to learn patience, we'd better show them from early on how it's done."
"That's very kind of you," she said.
I said, "Not at all, not at all."
"But," she said, "isn't patience at the heart of kindness?"
I laughed. I don't know why. Perhaps simply because I didn't know what to say.
It was a nice, simple, moment with another person.
But gosh it's got me thinking.
Over to you.
"Thank you for your patience," she said.
I indicated the kids she was pushing and said, "Well if we want kids to learn patience, we'd better show them from early on how it's done."
"That's very kind of you," she said.
I said, "Not at all, not at all."
"But," she said, "isn't patience at the heart of kindness?"
I laughed. I don't know why. Perhaps simply because I didn't know what to say.
It was a nice, simple, moment with another person.
But gosh it's got me thinking.
Over to you.
Friday, December 07, 2012
Far Escape
Sometimes I do what I do because it's what I want to do.
Sometimes disability has nothing to do with it.
Sometimes like when ...
... I was on the couch. I was in my housecoat. The night was blustery, the wind howled in protest at the cold. The fireplace was flickering an electric dance. I was covered in layers of blankets. A big, hot cuppa of tea was steaming beside me. The Christmas tree lights were on. John Crichton, appearing in my home via DVD, was in mortal danger, and paused on the television looking pained at the interruption. My finger was poised over the 'play' button on the remote control. Joe had gone for a 'rest break' and I was comfortably waiting his return.
On his way back, Joe stopped, called by the computer, to look at the screen as he passed by my desk. "Oh, Dave," he said, "Someone wants you to pop onto the computer for a few minutes to chat on messenger."
I called to him, "Tell them I'm on the couch."
He called back, "They really want to chat with you right now."
I called to him, "Tell them that I'm on the couch and really comfortable, we can talk later."
I heard him type in my message and then read the response. He came in and sat down with me and we hit play on the DVD and John aided by his friends on Moya managed to escape his danger. I did note that the way he rubbed his neck, looked as if he'd gotten a crick from being on pause for so long.
At the next break, Joe told me that the person who had wanted to talk to me said they understood that it would take a lot of work to 'tranfer' from the couch to the desk chair.
Oh.
I didn't go to the computer because I didn't want to. I was really comfortable, the day had been long, I was relaxing, I don't feel that I have to respond instantly to instant messages. Sometimes it's about just being warm, and cosy, and comfortable.
It's amazing that people give to disability what doesn't belong to disability.
Sometimes a couch is just a couch.
And.
Sometimes I do what I do because it's what I want to do.
Sometimes disability has nothing to do with it.
Sometimes like when ...
... I was on the couch. I was in my housecoat. The night was blustery, the wind howled in protest at the cold. The fireplace was flickering an electric dance. I was covered in layers of blankets. A big, hot cuppa of tea was steaming beside me. The Christmas tree lights were on. John Crichton, appearing in my home via DVD, was in mortal danger, and paused on the television looking pained at the interruption. My finger was poised over the 'play' button on the remote control. Joe had gone for a 'rest break' and I was comfortably waiting his return.
On his way back, Joe stopped, called by the computer, to look at the screen as he passed by my desk. "Oh, Dave," he said, "Someone wants you to pop onto the computer for a few minutes to chat on messenger."
I called to him, "Tell them I'm on the couch."
He called back, "They really want to chat with you right now."
I called to him, "Tell them that I'm on the couch and really comfortable, we can talk later."
I heard him type in my message and then read the response. He came in and sat down with me and we hit play on the DVD and John aided by his friends on Moya managed to escape his danger. I did note that the way he rubbed his neck, looked as if he'd gotten a crick from being on pause for so long.
At the next break, Joe told me that the person who had wanted to talk to me said they understood that it would take a lot of work to 'tranfer' from the couch to the desk chair.
Oh.
I didn't go to the computer because I didn't want to. I was really comfortable, the day had been long, I was relaxing, I don't feel that I have to respond instantly to instant messages. Sometimes it's about just being warm, and cosy, and comfortable.
It's amazing that people give to disability what doesn't belong to disability.
Sometimes a couch is just a couch.
And.
Sometimes I do what I do because it's what I want to do.
Thursday, December 06, 2012
Thoughts on Yesterday
I know I have a very stark view of the community and of the mass of people who make up what we call 'society.' I know that when I write how I really think the world is socially constructed I get a lot of, vaguely and not so vaguely hostile, response. Here's the deal. I do see good in the world. I do see kindness. I do see people doing extraordinary things to help other people. I do see all that. But I also refuse to NOT see people who dismiss others considered lesser, people who are actively and purposely unkind to those they see as barely human, people who love to taunt others when they feel safe to do so. I know that people know that using the R-word is offensive and they use it because they feel they can. I see the good but refuse to hide behind it.
I can't.
Part of my job is to teach people with disabilities to live in the real world. And in the real world there will be:
teasing
bullying
name calling
discriminatory service
invisibility
moments of real danger and real fear
people who manipulate to exploit
people who will purposely endanger
people who will laugh at your trust
And this is a partial list.
This does not mean that I don't think that people with disabilities shouldn't live in the real world, just that they should be prepared for real world dangers - like we all need to be.
This is a very long introduction to what I want to say today.
When I told the story of yesterday to a number of people, including those with disabilities, I felt kind of disturbed by the responses I got. It took me a long while of thinking to figure out what was bothering me.
It came to me over lunch.
I may think better when I'm actually in the process of rumination.
It seemed to me that everyone, and I may be wrong here, that I spoke to about this, mentioned that that person must have had some mental health issue.
Really?
Why?
I think that people simply don't want to acknowledge that non-disabled people, the people considered the 'norm' could possibly be, simply, mean. It's like people want to believe that only the 'exceptional' could do something like terrorise a passerby with a disability. It's like people want to explain the behaviour by making the PERSON exceptional rather than the behaviour objectionable.
So, only people with mental illness are cruel?
What a horrid stereotype.
I'm guessing people with mental illness experience more cruelty than are practitioners of it. I worked, as a youth, in a volunteer setting with people with mental illness and I never once felt afraid.
Here's the thing: normal people can be, and maybe even often are, capable of cruelty, arrogance, bigotry, self importance and are able to perform intentional and casual acts of social violence.
The norm, at it's core, may not be full of sunshine and hope.
We need to know that, cope with that, live within in it fully prepared.
I can hear the howls now that the world is full of good people. Well, it may be full of people who do good things, but that's not the same thing is it. Read the statistics on bullying and teasing. Read the fact that people with disabilities who live in the community more often live in fear than in safety.
Knowing this we should be careful of placing the blame on the backs of people with mental illness. We in the disability community should know better than that.
Holding people who do bad things accountable is the only way that leads to change.
That guy who scared me. I do not believe he had a mental illness. I believe that he was in a bad frame of mind, saw a moment where he could terrify someone vulnerable, and I fit the ticket. He did it. He's responsible for it.
End of story.
I can't.
Part of my job is to teach people with disabilities to live in the real world. And in the real world there will be:
teasing
bullying
name calling
discriminatory service
invisibility
moments of real danger and real fear
people who manipulate to exploit
people who will purposely endanger
people who will laugh at your trust
And this is a partial list.
This does not mean that I don't think that people with disabilities shouldn't live in the real world, just that they should be prepared for real world dangers - like we all need to be.
This is a very long introduction to what I want to say today.
When I told the story of yesterday to a number of people, including those with disabilities, I felt kind of disturbed by the responses I got. It took me a long while of thinking to figure out what was bothering me.
It came to me over lunch.
I may think better when I'm actually in the process of rumination.
It seemed to me that everyone, and I may be wrong here, that I spoke to about this, mentioned that that person must have had some mental health issue.
Really?
Why?
I think that people simply don't want to acknowledge that non-disabled people, the people considered the 'norm' could possibly be, simply, mean. It's like people want to believe that only the 'exceptional' could do something like terrorise a passerby with a disability. It's like people want to explain the behaviour by making the PERSON exceptional rather than the behaviour objectionable.
So, only people with mental illness are cruel?
What a horrid stereotype.
I'm guessing people with mental illness experience more cruelty than are practitioners of it. I worked, as a youth, in a volunteer setting with people with mental illness and I never once felt afraid.
Here's the thing: normal people can be, and maybe even often are, capable of cruelty, arrogance, bigotry, self importance and are able to perform intentional and casual acts of social violence.
The norm, at it's core, may not be full of sunshine and hope.
We need to know that, cope with that, live within in it fully prepared.
I can hear the howls now that the world is full of good people. Well, it may be full of people who do good things, but that's not the same thing is it. Read the statistics on bullying and teasing. Read the fact that people with disabilities who live in the community more often live in fear than in safety.
Knowing this we should be careful of placing the blame on the backs of people with mental illness. We in the disability community should know better than that.
Holding people who do bad things accountable is the only way that leads to change.
That guy who scared me. I do not believe he had a mental illness. I believe that he was in a bad frame of mind, saw a moment where he could terrify someone vulnerable, and I fit the ticket. He did it. He's responsible for it.
End of story.
Wednesday, December 05, 2012
Alone
We were walking along Bloor Street heading towards home. I was with people I know, nearly but not quite friends, and we were talking and laughing. Suddenly we all noticed a fellow coming towards me, a well dressed, pleasant faced, man. He was making kind of odd throttling gestures with his hands and he was definitely headed for me. Then he made a quick lunge, while still a ways away - maybe two or three feet, and then stormed by me.
I was terrified.
Completely and utterly terrified.
"Did you see that?" I said with a shaky voice. My companions immediately said that they did and how strange the whole thing was.
"I was so scared," I said having trouble keeping my emotions in check.
And then an even odder thing happened. They began joking about how I could just power my chair up and ram into the guy, how I could back over him as he lay on the ground. Further hilarity carried on between the two of them as they laughed and joked about how I could have used my power chair to wreak revenge.
I tried to break in to their conversation, I really needed to be heard, "I felt really vulnerable."
Again they joked it away saying that in my chair I was invincible that I'd have been able to 'take him out.' And, then they were off on more revenge kind of fantasies.
I don't know when I've ever felt so utterly alone.
I am not, I think, a coward. I am, however, controlled. I have had several comments from other wheelchair users here on the blog who write about how if something is in their way - they just push through the barrier and if things fall, so be it. I can only admire that kind of chutzpah. I don't have it. I am mortified and embarrassed if, by accident, I knock something over. In the five years I've had the power chair I've never run into anyone, certainly never purposely, and I'm very, very, careful and aware even if those who walk are completely distracted by 'i-ing' their way down the street. I pads and I pods only means I extra careful.
So I'm not that guy.
And I don't want to be.
I tried a couple more times to get my feelings across because right then I really needed them to listen to me, to acknowledge that what happened was frightening and to give me a sense of their support. I'm sad to say, I didn't get it through.
Maybe they don't see my vulnerability in the way that I feel it.
I don't know.
But right then I understood that my experience as a disabled person often puts me out of reach for ordinary empathy. Maybe.
Whatever.
I felt alone.
And a little lost.
I was terrified.
Completely and utterly terrified.
"Did you see that?" I said with a shaky voice. My companions immediately said that they did and how strange the whole thing was.
"I was so scared," I said having trouble keeping my emotions in check.
And then an even odder thing happened. They began joking about how I could just power my chair up and ram into the guy, how I could back over him as he lay on the ground. Further hilarity carried on between the two of them as they laughed and joked about how I could have used my power chair to wreak revenge.
I tried to break in to their conversation, I really needed to be heard, "I felt really vulnerable."
Again they joked it away saying that in my chair I was invincible that I'd have been able to 'take him out.' And, then they were off on more revenge kind of fantasies.
I don't know when I've ever felt so utterly alone.
I am not, I think, a coward. I am, however, controlled. I have had several comments from other wheelchair users here on the blog who write about how if something is in their way - they just push through the barrier and if things fall, so be it. I can only admire that kind of chutzpah. I don't have it. I am mortified and embarrassed if, by accident, I knock something over. In the five years I've had the power chair I've never run into anyone, certainly never purposely, and I'm very, very, careful and aware even if those who walk are completely distracted by 'i-ing' their way down the street. I pads and I pods only means I extra careful.
So I'm not that guy.
And I don't want to be.
I tried a couple more times to get my feelings across because right then I really needed them to listen to me, to acknowledge that what happened was frightening and to give me a sense of their support. I'm sad to say, I didn't get it through.
Maybe they don't see my vulnerability in the way that I feel it.
I don't know.
But right then I understood that my experience as a disabled person often puts me out of reach for ordinary empathy. Maybe.
Whatever.
I felt alone.
And a little lost.
Tuesday, December 04, 2012
Under Attack!
A few days ago I received an email from a faithful reader of this blog. She was writing to tell me that another disability blogger had written a post attacking me and making fun of something I said. Now, let me state clearly, I have no problem with people disagreeing with me, calling me on something I've said, or asking me to re-think an opinion. As a result I have discovered how often I'm wrongheaded in some way or that I have used words too carelessly. Without struggle I can think of 6 posts that I've changed due to reader feedback. The posts are better because of it AND I've learned through the experience. On the other hand, I have discovered there are times when a challenge has caused to think about what I've written, I realise that I do really, deeply, believe what I have said and that the challenge has allowed me to deepen my thinking.
While there were many times in my youth that I took criticism too personally and as a result felt under attack, I am no longer, nor have I been for a fairly long time now, that person. I have grown to like debate and to like perhaps the most important of diversities - the diversity of opinion. I'm good with all that. So, when I heard that there was a blogger out there disagreeing with me, I was OK with that.
What I wasn't OK with was the kind of 'behind your back' attack that it was. As I read it, I realised that the goal of the post was to mock me not challenge me, to call me 'stupid' without chance of rebuttal. I also realised that the quote taken from my writing was accurate but the way that it was was discussed was not. I wasn't sure what to do. I didn't comment as I didn't want to engage with someone who had decided not to engage me. Perhaps I should have but I kind of felt that I'd be playing into some kind of odd game.
Also, I am not going to link to that post because I don't want to reinforce that behaviour with too much attention.
I am writing this to ask all of you who read this blog - if you are going to disagree with me, in print or on the web, let me know. You certainly don't need my permission - have at me, disagree all you want, but have the courage to tell me or engage me in some way.
I've never, and don't ask now, asked people to alert me when they link to a post or write something positive - I find out anyways through the links feature of 'Sitemeter.' So don't worry about that.
Disagree with me! I love having sparked cause for discussion and debate. But don't attack me behind my back, I'm so not good with that.
Sorry to take up a whole post with this, but it's something I wanted to say.
While there were many times in my youth that I took criticism too personally and as a result felt under attack, I am no longer, nor have I been for a fairly long time now, that person. I have grown to like debate and to like perhaps the most important of diversities - the diversity of opinion. I'm good with all that. So, when I heard that there was a blogger out there disagreeing with me, I was OK with that.
What I wasn't OK with was the kind of 'behind your back' attack that it was. As I read it, I realised that the goal of the post was to mock me not challenge me, to call me 'stupid' without chance of rebuttal. I also realised that the quote taken from my writing was accurate but the way that it was was discussed was not. I wasn't sure what to do. I didn't comment as I didn't want to engage with someone who had decided not to engage me. Perhaps I should have but I kind of felt that I'd be playing into some kind of odd game.
Also, I am not going to link to that post because I don't want to reinforce that behaviour with too much attention.
I am writing this to ask all of you who read this blog - if you are going to disagree with me, in print or on the web, let me know. You certainly don't need my permission - have at me, disagree all you want, but have the courage to tell me or engage me in some way.
I've never, and don't ask now, asked people to alert me when they link to a post or write something positive - I find out anyways through the links feature of 'Sitemeter.' So don't worry about that.
Disagree with me! I love having sparked cause for discussion and debate. But don't attack me behind my back, I'm so not good with that.
Sorry to take up a whole post with this, but it's something I wanted to say.
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