Monday, December 03, 2012
Thank You All ...
... for your votes. I came in first place for Best Personal Blog and tied for third in Best Health Blog. I also congratulate Belinda whose Whatever He Says came in first place for Best Religion and Philosophy. I was really excited about the awards and, again, can't thank you enough for taking the time to pop over to the Canadian Blog Awards to vote for me.
International Day of Persons With Disabilities: Three Stairs
In my school, when I was growing up, there were a set of three stairs that separated the old school from the extension, which was added later.Three stairs that. by the time I came along, thousands and thousands of students had made their way up or down. Some of the coltish boys would take a run and leap from one level to the other, ignoring the stairs altogether.
I never thought about those stairs.
I never thought about what they represented.
It didn't cross my mind that in the construction of a school that planners had planned and authorities had approved those three stairs. Three stairs that indicated that the idea of kids with disabilities would not, now or ever, be considered. My mind rushes over the faces of the kids in my class. Susan and Dale, Darlene and Dawn, Jim and Mark, Mike and Jennifer. All of them. I can see their faces. All of them kids who easily skipped, jumped or plummeted down those stairs. All of them kids who could race, leap or trudge up those stairs.
All of them.
Me included.
Not thinking for a moment what those stairs represented.
Not asking a single question that began with 'why' moved to 'disability' and ended with 'excluded.'
Not because we were bad kids.
We lived in a small town where everyone walked. No one rolled. No one. Ever. I strain and I strain but I can't remember seeing a wheelchair at any point in my childhood. I grew up in a town full of hearty men with hearty wives, a town making money from the zinc that was mined up steep mountain roads. A town and a time where people spoke of pleasant things in pleasant tones. I never heard the word 'disabilty.' Ever.
Ever.
Later, much later. I stepped into an institution for the very first time. In that place I saw what society did to those who were born with intellectual disabilities. People lived lives of quiet desperation waiting in day rooms, waiting in front of the television, waiting staring at the door for visitors that didn't come.
Later, much later. I stepped into a 'special school' for kids with physical disabilities. There was noise, noise, noise, kids laughing, kids fighting, kids racing pell mell down hallways. The noise was so distracting that it was hard to notice as you walked through the school, even from the old part into the new part that there weren't three steps. The school was accessible to itself, but closed off from the world up three steps.
No one ever asked me to consider.
Where they were.
Why they weren't there.
Who decided that they could be disposed of in other towns, other places.
Today is the International Day of Persons With Disabilities. Today we celebrate the advances made. Today we consider the distance yet to travel. Today we commit ourselves to barrier free environments, barrier free employment, barrier free education.
In my mind I am sitting in my wheelchair at the top of three stairs that lead from where I am to where I want to be. In my mind I wonder when the apology will come for the cruelty, not of exclusion, but of not being considered at all.
I never thought about those stairs.
I never thought about what they represented.
It didn't cross my mind that in the construction of a school that planners had planned and authorities had approved those three stairs. Three stairs that indicated that the idea of kids with disabilities would not, now or ever, be considered. My mind rushes over the faces of the kids in my class. Susan and Dale, Darlene and Dawn, Jim and Mark, Mike and Jennifer. All of them. I can see their faces. All of them kids who easily skipped, jumped or plummeted down those stairs. All of them kids who could race, leap or trudge up those stairs.
All of them.
Me included.
Not thinking for a moment what those stairs represented.
Not asking a single question that began with 'why' moved to 'disability' and ended with 'excluded.'
Not because we were bad kids.
We lived in a small town where everyone walked. No one rolled. No one. Ever. I strain and I strain but I can't remember seeing a wheelchair at any point in my childhood. I grew up in a town full of hearty men with hearty wives, a town making money from the zinc that was mined up steep mountain roads. A town and a time where people spoke of pleasant things in pleasant tones. I never heard the word 'disabilty.' Ever.
Ever.
Later, much later. I stepped into an institution for the very first time. In that place I saw what society did to those who were born with intellectual disabilities. People lived lives of quiet desperation waiting in day rooms, waiting in front of the television, waiting staring at the door for visitors that didn't come.
Later, much later. I stepped into a 'special school' for kids with physical disabilities. There was noise, noise, noise, kids laughing, kids fighting, kids racing pell mell down hallways. The noise was so distracting that it was hard to notice as you walked through the school, even from the old part into the new part that there weren't three steps. The school was accessible to itself, but closed off from the world up three steps.
No one ever asked me to consider.
Where they were.
Why they weren't there.
Who decided that they could be disposed of in other towns, other places.
Today is the International Day of Persons With Disabilities. Today we celebrate the advances made. Today we consider the distance yet to travel. Today we commit ourselves to barrier free environments, barrier free employment, barrier free education.
In my mind I am sitting in my wheelchair at the top of three stairs that lead from where I am to where I want to be. In my mind I wonder when the apology will come for the cruelty, not of exclusion, but of not being considered at all.
Sunday, December 02, 2012
Falafel's
Note: Some of you who read my blog either very early in the morning or very late at night will have noticed that this first posted yesterday morning. This was accidental. It was meant, all along, to post today. However I switched dates with the post for World AIDS Day yesterday. So, it's back in, right where it was supposed to be.
Sorry
***
I was getting a falafel. Mike and Joe were getting soup. Part of me just really loves food courts, I love the variety and the communal nature of them. I'm lucky I have two near me. One upscale. One not. Both accessible. All right! So there was a fellow with what I took to be a Russian accent working the Falalel place. He chatted with me, really nice - nice nice, not creepy nice - as I pointed out the stuffing I wanted to fill the pita. I was a little taken aback by his warmth. I'm not used to warmth, now or ever, from people who work in these places. I am fully OK with just civility. But he was nice.
As he put the hot falafels into the pita he asked me what I wanted to drink. I wanted a bottle of water. He put the water, laying down not standing up on the tray along side the wrapped falafel. I was pleased. As I carry my own tray I always lay the bottle down. I don't want to have to balance the tray with a bottle teetering on it. I don't 'Cirque de Soleil' my way through a food court. He was telling me that the falafel pita is the most popular, I told him that I'd had it there before and it was always good. He smiled.
Just as I picked my tray up he said, "Mister," softly. I looked at him, "my mother used a wheelchair for most of her life. For what you have to put up with I say, I'm sorry. People who walk never think about people who do not. Have a good time with your friends."
I blinked.
And thanked him.
I knew he had been very nice, and I suspect that's just his nature, but I suspect that he was being particularly nice to me when making my wrap. I thought it great that he took what he learned from his mother's and applied it to how he lived his life.
I suspect his mother would be proud.
Sorry
***
I was getting a falafel. Mike and Joe were getting soup. Part of me just really loves food courts, I love the variety and the communal nature of them. I'm lucky I have two near me. One upscale. One not. Both accessible. All right! So there was a fellow with what I took to be a Russian accent working the Falalel place. He chatted with me, really nice - nice nice, not creepy nice - as I pointed out the stuffing I wanted to fill the pita. I was a little taken aback by his warmth. I'm not used to warmth, now or ever, from people who work in these places. I am fully OK with just civility. But he was nice.
As he put the hot falafels into the pita he asked me what I wanted to drink. I wanted a bottle of water. He put the water, laying down not standing up on the tray along side the wrapped falafel. I was pleased. As I carry my own tray I always lay the bottle down. I don't want to have to balance the tray with a bottle teetering on it. I don't 'Cirque de Soleil' my way through a food court. He was telling me that the falafel pita is the most popular, I told him that I'd had it there before and it was always good. He smiled.
Just as I picked my tray up he said, "Mister," softly. I looked at him, "my mother used a wheelchair for most of her life. For what you have to put up with I say, I'm sorry. People who walk never think about people who do not. Have a good time with your friends."
I blinked.
And thanked him.
I knew he had been very nice, and I suspect that's just his nature, but I suspect that he was being particularly nice to me when making my wrap. I thought it great that he took what he learned from his mother's and applied it to how he lived his life.
I suspect his mother would be proud.
Saturday, December 01, 2012
World AIDS Day
A shadow came over my life. A deep darkness of fear. I saw that darkness in the eyes of others. I heard desperation in laughter too loud and desolation in profound silences no longer filled with chatter. I saw grief in eyes never quite dry and in shoulders never quite unburdened. That shadow, that darkness, I now realise has shaped my life. It has made me different. I will never, as I did in youth, trust sun. I will never, as I did in the years before, trust the world I live in. Humanity existed only as a terrifying thing. I knew society to be a dangerous place where the prejudice of the norm is the norm. And it has hardened me.
The fact of AIDS in the time of AIDS wasn't just about the disease. It was also about the gleeful way in which the disease was greeted. Our lives, the lives of my community, were being mown down to the applause of those who stood on the sidelines. Our lives, the lives of young gay men, were counted as worthless. Our lives, the lives of children and brothers and friends, were seen as kindling, as faggots, to be burned. I sat amongst people, people not knowing that a gay man was amongst them, and heard them cluck with approval at the quickness with which the numbers of the dead grew.
Christians told us that God was punishing us. That God hated us. That our love was an abomination. That God was hunting us down in the places where we lay and slaying us - the dirty dogs that we were. Our God is a vengeful God and our God loved the smell of Gay blood.
And it felt that way.
It felt that God had given approval for us to die. Like God had begun to answer the prayers of those who hated us and ignored our pleas, not for healing that would have been too much to expect, but at least for mercy.
I remember a very young man.
Very.
Young.
Who ran across Church Street to talk to Joe and I. His face was shining. His voice was hopeful. He said that he was so full of the spirit of God that he had to share with us - he had knelt and prayed. He had asked Jesus into his heart. He felt the softness of God's approving love. He felt Jesus at his side. He knew. HE KNEW. That God would heal him. That Jesus would take his sins away. Tears flowed down his cheeks. He was barely twenty.
A week later we'd heard that he'd travelled home to speak with his minister.
And was cast out.
Days later, he was dead.
The shadow. It came. It made me look warily at the world around me. There are those who wish the different dead. There are those who do not want, and will not countenance any idea beyond 'us' ... a 'them' is unthinkable and undesirable.
I live in a world where I believe hatred can burst into flames at the slightest provocation.
I live in a world where love is sung about, proclaimed everywhere ... but where the work of love is reviled.
I live in a world that I do not trust.
We lost more than friends. We lost more than bodies and souls. We lost a belief in a loving world.
And that may be the greatest tragedy of all.
The fact of AIDS in the time of AIDS wasn't just about the disease. It was also about the gleeful way in which the disease was greeted. Our lives, the lives of my community, were being mown down to the applause of those who stood on the sidelines. Our lives, the lives of young gay men, were counted as worthless. Our lives, the lives of children and brothers and friends, were seen as kindling, as faggots, to be burned. I sat amongst people, people not knowing that a gay man was amongst them, and heard them cluck with approval at the quickness with which the numbers of the dead grew.
Christians told us that God was punishing us. That God hated us. That our love was an abomination. That God was hunting us down in the places where we lay and slaying us - the dirty dogs that we were. Our God is a vengeful God and our God loved the smell of Gay blood.
And it felt that way.
It felt that God had given approval for us to die. Like God had begun to answer the prayers of those who hated us and ignored our pleas, not for healing that would have been too much to expect, but at least for mercy.
I remember a very young man.
Very.
Young.
Who ran across Church Street to talk to Joe and I. His face was shining. His voice was hopeful. He said that he was so full of the spirit of God that he had to share with us - he had knelt and prayed. He had asked Jesus into his heart. He felt the softness of God's approving love. He felt Jesus at his side. He knew. HE KNEW. That God would heal him. That Jesus would take his sins away. Tears flowed down his cheeks. He was barely twenty.
A week later we'd heard that he'd travelled home to speak with his minister.
And was cast out.
Days later, he was dead.
The shadow. It came. It made me look warily at the world around me. There are those who wish the different dead. There are those who do not want, and will not countenance any idea beyond 'us' ... a 'them' is unthinkable and undesirable.
I live in a world where I believe hatred can burst into flames at the slightest provocation.
I live in a world where love is sung about, proclaimed everywhere ... but where the work of love is reviled.
I live in a world that I do not trust.
We lost more than friends. We lost more than bodies and souls. We lost a belief in a loving world.
And that may be the greatest tragedy of all.
Friday, November 30, 2012
December Newsletter Released
Service, Support and Success, the monthly newsletter published electronically through Vita Community Living Services has now been released. This month it's about the 'gifts' we are given through the role we have in providing support. The December issue, which marks the birthday of the newsletter, is written by some guy named Dave Hingsburger. If you want to receive this copy or if you want to be put on the mailing list, email dhingsburger@vitacls.org ... you must indicate if you want to be put on the mailing list or if you simply want this one issue. If you do not specifically say not to, you will be put on the list.
Today's post follows:
Today's post follows:
Thermos
It wasn't there.
Just wasn't there.
I was desperate.
I don't have a cup of tea in the morning because I never know if the bus ride is going to be longer than my bladder's resolve. I kind of see the ride as a race between wet and dry. So. No tea. These are the things that people of my age think about.
Anyways, the very first thing I do when I get to work. After peeing of course, is making a cup of tea. I take out my thermos and then grab my cup, one that is a souvenir from Tescos, and plop in a green tea bag and brew myself a tea. But, on my desk ... no cup.
Anywhere.
I even looked under paper where no cup in this dimension could ever fit. But ... no cup. Then I remembered that the day before I had had a meeting in the board room. I'd had tea there. When Joe came to pick me up I'd left my cup there.
I panicked.
I love that cup.
I called Aneta at reception and she quickly checked to see and came back to told me that the cup was gone and was probably in the kitchen.
Oh. No.
My chair is a little wide for the kitchen. It's one of the few places in the building that I can't get into. I don't go in there anyways as I bring my lunch and I always have my Thermos. What was I to do? I don't like asking for help.
Donna (hi, Donna - I know you are reading this) was in her office so I called and asked her if I could ask for a big favour. I told her about my missing cup and she immediately agreed to go get it for me. I described it in loving detail and she headed off.
I don't like asking for help.
A few minutes later Donna was back and my cup was in my hands. It was a relief as it meant that a cup of tea was only a few minutes away.
Donna was back in her office.
I was really, really pleased that there are people I work with who I can call upon when I need help. But even better, I have people who I work with who, when they do help me don't leave me feeling diminished because of my need.
I enjoyed that cup of tea.
Partly because I really wanted the tea.
Mostly because I asked for help and got it - and while it mattered, it didn't. How cool is that?
***
Well, there is only two more days to vote for Rolling Around in My Head at the Canadian Blog Awards in the categories of Best Personal and Best Health blogs. Belinda is also nominated for Best Religion or Philosophy Blog. You don't have to be Canadian to vote. You may only vote once. All you do is click on the link.
So if you are of a mind to and have the time I would appreciate it. After tomorrow, there won't be any more reminders. I apologise for my regular appeals for your time and your vote.
Just wasn't there.
I was desperate.
I don't have a cup of tea in the morning because I never know if the bus ride is going to be longer than my bladder's resolve. I kind of see the ride as a race between wet and dry. So. No tea. These are the things that people of my age think about.
Anyways, the very first thing I do when I get to work. After peeing of course, is making a cup of tea. I take out my thermos and then grab my cup, one that is a souvenir from Tescos, and plop in a green tea bag and brew myself a tea. But, on my desk ... no cup.
Anywhere.
I even looked under paper where no cup in this dimension could ever fit. But ... no cup. Then I remembered that the day before I had had a meeting in the board room. I'd had tea there. When Joe came to pick me up I'd left my cup there.
I panicked.
I love that cup.
I called Aneta at reception and she quickly checked to see and came back to told me that the cup was gone and was probably in the kitchen.
Oh. No.
My chair is a little wide for the kitchen. It's one of the few places in the building that I can't get into. I don't go in there anyways as I bring my lunch and I always have my Thermos. What was I to do? I don't like asking for help.
Donna (hi, Donna - I know you are reading this) was in her office so I called and asked her if I could ask for a big favour. I told her about my missing cup and she immediately agreed to go get it for me. I described it in loving detail and she headed off.
I don't like asking for help.
A few minutes later Donna was back and my cup was in my hands. It was a relief as it meant that a cup of tea was only a few minutes away.
Donna was back in her office.
I was really, really pleased that there are people I work with who I can call upon when I need help. But even better, I have people who I work with who, when they do help me don't leave me feeling diminished because of my need.
I enjoyed that cup of tea.
Partly because I really wanted the tea.
Mostly because I asked for help and got it - and while it mattered, it didn't. How cool is that?
***
Well, there is only two more days to vote for Rolling Around in My Head at the Canadian Blog Awards in the categories of Best Personal and Best Health blogs. Belinda is also nominated for Best Religion or Philosophy Blog. You don't have to be Canadian to vote. You may only vote once. All you do is click on the link.
So if you are of a mind to and have the time I would appreciate it. After tomorrow, there won't be any more reminders. I apologise for my regular appeals for your time and your vote.
Thursday, November 29, 2012
St. Peter's
I went into the liquour store to pick up some beer while Joe was in the line up at the grocery store. I saw this mini keg, from the UK, of St. Peter's Ale and, even though I had a shopping bag full of beer, I grabbed this as well. I thought it would be a great for Joe who likes St. Peters and wanted to surprise him with something unusual. I must have made quite the sight, a bag full of beer in one hand and a keg of beer in one arm, all while steering a power wheelchair.
I got into a lineup for a clerk who I really like.Over the years that we've come to the store we've got to know him and have chatted with him, and maybe flirted a bit - all in fun of course, so we always get into his line. As I waited I listened to the woman behind me going on, and on, and on, purposely loud, wanting me to hear, about people who misuse the system and waste benefit dollars on AL - CO - HOL. The woman she was talking to agreed and intimated that I was an alcoholic and probably spent my time sitting on my ass. I couldn't believe it. Neither could the clerk who heard the conversation, glanced at me and winked.
When it was my turn, I plunked my keg down, set the bag beside it rummaging to find one of each of the three kinds of beer that I'd chosen - Harp, Stella and Canadian. As he was scanning them he said, loudly, wanting to be heard. "So how was your lecture tour of the United Kingdom?" I told him that it had gone well. He asked if my books sold well while I was there. I told him that they had. He asked how it was to be back at work. I told him that it was good to be back at my desk.
There was silence behind me.
An almost profound silence.
Wednesday, November 28, 2012
Fat is Fat But That's All
This is Rob Ford. Most Canadians will know that on Monday he was convicted in a conflict of interest case and has been ordered to vacate his office, as Mayor of Toronto, in 14 days. Let me make something clear. I didn't vote for Mr. Ford. I don't like Mr. Ford's politics or his manner. I am not a fan. I believe the court made the right decisions because what he did was so obviously wrong that I can't believe his defence of, 'I didn't read the guidebook on conflict of interest' would even matter.
But this post isn't about Mr. Ford or his crime. It's about how Mr. Ford is being discussed. And more selfishly, how he's being discussed around me. It's obvious from the picture that Mr. Ford is a fat man. Don't you all be jumping on me for using the word 'fat'. Fat is fat. I am fat. I have no problem with the word, I have problems with how that word is valued.
Mostly over the day I was part of discussions about Mr. Ford's oust from City Hall, trust me it's a big talking point here in the city. Most people spoke about being embarrassed by Mr. Ford - because of his weight and what he looked like. They said this to me. They said it in front of me. They laughed as they made jokes about his weight and his looks. Again, in front of me. Several times in several conversations I said, "Um, I can hear you. I'm right here." And each time I was looked at with a degree of curiosity, like they couldn't understand what I was saying, or why I would protest. Several said things like, "I never imagined you for a Ford supporter."
I am not a Ford supporter.
However I believe that Ford should be spoken about for his behaviour, for what he DID that lead to the charge and the conviction. Not once. THAT'S NOT ONCE, did anyone talk about the actual case, in fact many didn't know what he'd been accused of, they just love the FAT GUY getting kicked out of office so we can have someone more seemly take his place. All this, to me, in front of me, around me, like I couldn't hear - or if I could I wouldn't have the temerity to speak up against that kind of shallow discussion about a fellow human.
Mr. Ford did something wrong.
And that wasn't having cheesecake.
And it wasn't midnight snacking.
And it wasn't fried egg and peanut butter sandwiches.
It was a decision, it was a huge political mistake, it was doing something wrong. Mr. Ford should have the dignity of having his actions, not his weight, be discussed. We should want a new mayor because the old one did something that ended in a court ousting him from office, not because we want someone prettier. Shouldn't we want someone more honest.
The degree of comfort that people have with their prejudices around certain kinds of difference is astonishing to me. Not once, when I spoke up, did someone apologise. Not once did anyone even look slightly embarrassed. It was as if they thought that I should join in because after all ... doesn't everyone hate fat people?
Even fat people?
No.
Not this one.
I didn't vote for Ford because I heard what he had to say, I didn't like how he spoke to others, I didn't like his casual use of the 'R' word. It never occurred to me to make a decision for any other reason.
It scares me that the elections of the future might have a swimsuit competition.
Tuesday, November 27, 2012
A Quiz about Values and Ethics
I've been discovering recently, much to my discomfort, that my personal set of ethics is no longer set in stone. I wish it were. But it's not. I like to believe that there are certain things that I believe that are unalterable, unchangeable, unshakable. I'm sure there are - the big ones, like about murder and theft and neighbours asses - but those don't really come up in day to day life. Well, I suppose I should say, in my life. Let me give you an example of what I mean.
When I became a wheelchair user I decided that I would not shop in a store that I couldn't get into, that I wouldn't give my money at counters that were inaccessible, that I would use my purchasing power as a consumer to make changes. I hold to that mostly, but mostly because it's pretty easy to boycott a store that doesn't let you in anyways. But I've been finding myself facing situations like the one today.
I had one more gift to get for my parents and I went shopping for it at a local department store. I found it. It was perfect. This meant that on set of gifts would be ready for wrapping and shipping. The gift in hand I went to the counter. It was blocked by a display being set up. No way around at all. Joe got busy, before I could ask him not to, making room. I got through barrier number one. The second barrier was immovable. Joe said, taking the bracelets from my, 'How about I just buy this?' Now, I need to admit that I was about to ask him to do the same, it was like he read my mind. So I sat there, several feet away from the counter that I couldn't get to, watching my money switch from my account to the store's account.
Oddly, when in the United Kingdom a couple weeks ago I was in a similar situation. In the store but not able to make the purchase - I made an entirely different decision. I let them know that if I couldn't pay then, well, I couldn't pay. I set the item down and left the store. No histrionics, just a sale not made and a customer not satisfied.
What's the difference?
I don't know.
True, I was feeling tired today when this happened and didn't have a whack of energy to protest. But that's not it.
True, I really wanted to have this shopping done so the wrapping and shipping could happen and thus be assured that it all arrives on time. But that's not it.
True, I still believe that I shouldn't spend money where I can't spend money. But that's clearly not enough.
I think what made the difference was that the clerk, today, was mortified about the inaccessibility. She immediately said that she was sorry, that she didn't notice that the space was so narrow, that she would talk to the manager about it. The clerk in England said none of those things, didn't seem to care that I couldn't get by, didn't offer even a hint of an apology. Maybe that made the different. But, I don't think so.
Over to you ... do you find that there are times when you push your own values and ethics aside and other days hold to them hard and fast? And if you do ... what makes the difference. I feel I have the answer inside me but I just can't find it. So I'm eager to hear what you have to say.
****
There are only four days left to vote for Rolling Around in My Head for a Canadian Blog Award. You do not have to be Canadian to vote. You can vote for this blog in the 'best personal' blog and in the 'best health' blog categories. To vote just click here.
When I became a wheelchair user I decided that I would not shop in a store that I couldn't get into, that I wouldn't give my money at counters that were inaccessible, that I would use my purchasing power as a consumer to make changes. I hold to that mostly, but mostly because it's pretty easy to boycott a store that doesn't let you in anyways. But I've been finding myself facing situations like the one today.
I had one more gift to get for my parents and I went shopping for it at a local department store. I found it. It was perfect. This meant that on set of gifts would be ready for wrapping and shipping. The gift in hand I went to the counter. It was blocked by a display being set up. No way around at all. Joe got busy, before I could ask him not to, making room. I got through barrier number one. The second barrier was immovable. Joe said, taking the bracelets from my, 'How about I just buy this?' Now, I need to admit that I was about to ask him to do the same, it was like he read my mind. So I sat there, several feet away from the counter that I couldn't get to, watching my money switch from my account to the store's account.
Oddly, when in the United Kingdom a couple weeks ago I was in a similar situation. In the store but not able to make the purchase - I made an entirely different decision. I let them know that if I couldn't pay then, well, I couldn't pay. I set the item down and left the store. No histrionics, just a sale not made and a customer not satisfied.
What's the difference?
I don't know.
True, I was feeling tired today when this happened and didn't have a whack of energy to protest. But that's not it.
True, I really wanted to have this shopping done so the wrapping and shipping could happen and thus be assured that it all arrives on time. But that's not it.
True, I still believe that I shouldn't spend money where I can't spend money. But that's clearly not enough.
I think what made the difference was that the clerk, today, was mortified about the inaccessibility. She immediately said that she was sorry, that she didn't notice that the space was so narrow, that she would talk to the manager about it. The clerk in England said none of those things, didn't seem to care that I couldn't get by, didn't offer even a hint of an apology. Maybe that made the different. But, I don't think so.
Over to you ... do you find that there are times when you push your own values and ethics aside and other days hold to them hard and fast? And if you do ... what makes the difference. I feel I have the answer inside me but I just can't find it. So I'm eager to hear what you have to say.
****
There are only four days left to vote for Rolling Around in My Head for a Canadian Blog Award. You do not have to be Canadian to vote. You can vote for this blog in the 'best personal' blog and in the 'best health' blog categories. To vote just click here.
Monday, November 26, 2012
Ticket Torture
All we wanted was to get tickets to a show, designed for families, during the Christmas season. That's all. I looked up the name of the show, found the production company's web site, looked and found no information about buying accessible seating. I clicked on the date wanted and was given a number to call. I called the number. The fellow on the line, when hearing I wanted wheelchair seating along with tickets for the two adults and two children who would be coming with me, took down the information and then came back a few seconds later with 'Wheelchairs are only allowed one companion.' I was stunned, "Sir, you are talking to the wheelchair and I've got a family and we want to sit together.' He went away. He came back, 'Wheelchairs are allowed one companion.' I said, 'Most times I go to the theatre the wheelchair seating is at the end of a row, I'd like to buy that spot and 4 other spots.' He went away and came back and said, 'We don't sell wheelchair seating, you have to call the box office.' The interchange was briefly nasty and I rang off.
I called the theatre, listened to a very long message, the last thing stated was that if I wanted to buy wheelchair accessible seating, I was to leave a message and they would call me back. I left my number, outlined that I was frustrated at the process, and rang off. An hour or so later they called back. The woman asked me the source of my frustration. I told her that I'd gone to the production company website, followed the links to calling a number, after much fussing about I'm told that it's not that number it's another number.
She then set about giving me a lecture, talking to me again in emphasised simplicity, about how if I want to buy a ticket I need to call the theatre box office, that this informaton is on the theatre's website. I told her that that information was not on the production company's website and they are the first up on Google AND they offer to sell tickets. They don't mention accessibility. She said that I should have known to call the theatre. Her implication was that my frustration wasn't because of the flawed system but because of my own stupidity.
I had her check the day we had chosen and she came back and said that all the wheelchair seating was sold on that day. I asked if we could check on other days. She said, 'No.' She told me they were very busy. So she gave me homework. I was to go and find all the days that we were able to attend and then call back. I did this but she didn't answer, so I left a message, with the dates and the number of seats - and of those dates I left the two we'd prefer, too, I left the times that I'd be available to talk with her the next day.
She called during the time I had said I wasn't available to tell me, with exasperation, that she'd call me during the time I said I would be available. She called exactly as we were about to get on the elevator to go up to the apartment. I asked, politely, if she would call back in fifteen minutes. She checked with her supervisor who gave her the OK.
During the call we chose the time and even though I corrected her a couple of times she always listed the purchase as 'one wheel and four family seats.' I hate being called the 'chair' or in this case, a first, a 'wheel' ... but I wanted the tickets. I wanted to take the girls. I know they'll love it. I know it will be fun.
The process involved in buying the tickets was outrageously difficult, it took:
I only went through all of this, not giving up, because I want to do this with Ruby and Sadie and the family. I do. I want the memory of us being together at the theatre to be a big one. I want the kids to experience live theatre. I want the kids to have a breadth of experience.
But I tell you this,when I go to see a play, or the ballet, or the symphony or the opera and see the empty accessible seats, I know why they are empty, you've got to really, really, really want to go in order just to buy a freaking ticket. After the problems we've had at the symphony and the ballet we think long and hard before even deciding to try and get a ticket. Our first question should be 'can we afford it' but now it's 'have we the energy to put into buying a ticket.' There's something deeply wrong with that!
PS
Please remember to vote for Rolling Around in My Head at the Canadian Blog Awards website in the categories of 'Best Personal Blog' and 'Best Health Blog'. Whatever He Says, Belinda's blog, is also up for best Religion and Philosphy blog if you've a mind to. I really appreciate your time and support.
I called the theatre, listened to a very long message, the last thing stated was that if I wanted to buy wheelchair accessible seating, I was to leave a message and they would call me back. I left my number, outlined that I was frustrated at the process, and rang off. An hour or so later they called back. The woman asked me the source of my frustration. I told her that I'd gone to the production company website, followed the links to calling a number, after much fussing about I'm told that it's not that number it's another number.
She then set about giving me a lecture, talking to me again in emphasised simplicity, about how if I want to buy a ticket I need to call the theatre box office, that this informaton is on the theatre's website. I told her that that information was not on the production company's website and they are the first up on Google AND they offer to sell tickets. They don't mention accessibility. She said that I should have known to call the theatre. Her implication was that my frustration wasn't because of the flawed system but because of my own stupidity.
I had her check the day we had chosen and she came back and said that all the wheelchair seating was sold on that day. I asked if we could check on other days. She said, 'No.' She told me they were very busy. So she gave me homework. I was to go and find all the days that we were able to attend and then call back. I did this but she didn't answer, so I left a message, with the dates and the number of seats - and of those dates I left the two we'd prefer, too, I left the times that I'd be available to talk with her the next day.
She called during the time I had said I wasn't available to tell me, with exasperation, that she'd call me during the time I said I would be available. She called exactly as we were about to get on the elevator to go up to the apartment. I asked, politely, if she would call back in fifteen minutes. She checked with her supervisor who gave her the OK.
During the call we chose the time and even though I corrected her a couple of times she always listed the purchase as 'one wheel and four family seats.' I hate being called the 'chair' or in this case, a first, a 'wheel' ... but I wanted the tickets. I wanted to take the girls. I know they'll love it. I know it will be fun.
The process involved in buying the tickets was outrageously difficult, it took:
over 24 hours
one staff who couldn't get that people with disabilities have families not just companions
one staff who felt a need to give a lecture to a 60 year old man about buying tickets
1 incident of shifting blame to me
5 incidents of being called 'a wheel'
3 incidents of being called 'a wheelchair'
1,000,000,000 parcels of patience and restraint
I only went through all of this, not giving up, because I want to do this with Ruby and Sadie and the family. I do. I want the memory of us being together at the theatre to be a big one. I want the kids to experience live theatre. I want the kids to have a breadth of experience.
But I tell you this,when I go to see a play, or the ballet, or the symphony or the opera and see the empty accessible seats, I know why they are empty, you've got to really, really, really want to go in order just to buy a freaking ticket. After the problems we've had at the symphony and the ballet we think long and hard before even deciding to try and get a ticket. Our first question should be 'can we afford it' but now it's 'have we the energy to put into buying a ticket.' There's something deeply wrong with that!
PS
Please remember to vote for Rolling Around in My Head at the Canadian Blog Awards website in the categories of 'Best Personal Blog' and 'Best Health Blog'. Whatever He Says, Belinda's blog, is also up for best Religion and Philosphy blog if you've a mind to. I really appreciate your time and support.
Sunday, November 25, 2012
They (don't always) Shoot Horses
We were on our way to the movie theatre, waiting for the subway to come. Ruby and Sadie had both thought to bring a toy along . Sadie was carrying a big soft monkey. Ruby had chosen a beautiful pink horse that she adores. Both monkey and horse are lucky because they often go on outing with their respective kids. Ruby and I were a little faster than the other three so we got up to the end of the platform so we could get on the front of the train. She set the horse down beside her on the platform floor and something happened and the front leg broke off and when she grabbed for the piece it slid right over the edge. She didn't even notice my had drop down behind her. I wanted to be prepared for her to dash over to the edge, but I didn't need to worry, she just said, 'It's gone isn't it?' I said yes.
We got on the subway and I noticed she was near tears. Her beloved horse was broken. It lay unattended beside her, beginning the process of being discarded. But when I looked at the horse it still seemed beautiful and carry around-able. It still had a magnificent main and a tail permanently sculpted by wind. She picked it up again when we got to Dundas station and were heading in to catch the elevator up to the street. She again was walking beside me. I asked her how she thought the horse was feeling. He looked at me like I was out to lunch, the words 'it's a toy' formed in her eyes.
As she didn't answer I said, "I think that the horse is worried and a little scared."
"Why?"
"I think it's worried that people will only see his missing foot, that they won't see all the rest of him, and because of that they won't think he need love or attention. He's still a perfectly good horse."
She looked from me to the horse and back.
I continued, "When my legs stopped working I needed Joe to show me that I was still loved and that I still mattered."
She was getting it.
"So I should show the horse that I love him anyways?"
"What would a lot of kids do with a horse that had a broken off foot?"
"Throw it away."
"Do you think that you'll never be able to play with the horse again?"
"He's still beautiful."
"I know, but even though he's beautiful I think he's afraid right now that he's just going to be thrown away."
The elevator doors opened and on we got.
On the way up in the car, Ruby quickly and quietly gave the toy a hug and said, "I love you."
Saturday, November 24, 2012
Zipper Monsters
Our Christmas Tree is up. The lights are on and it's well decorated, well at least the bottom half. Ruby and Sadie are here, right now as I write this, and they've put a lot of energy into the bottom half of the tree. It looks wonderful. They are sitting in the front room colouring pictures of Santa and Rudolf. It's an amazingly homey kind of scene.
But earlier we had come in from taking them out to see the Christmas lights and decorations in our area. It was cold so we came home sooner than we'd planned. When we got in, Ruby asked for help with a stuck zipper on her jacket. I offered to help because Joe was helping Sadie get her boots off. I took hold of the zipper and decided to pull it up before trying to pull it back down. It came up easily. Then as I pulled it down a bit I got struck with a bit of whimsy. I pretended that the zipper was fighting back. I screamed and fought with the zipper which went up and down and up and down and down and up. The coat flung out and and back and was entirely out of control.
So was Ruby.
She was crying she was laughing so hard.
Sadie came to watch.
Suddenly Sadie's coat was on and her zipper was stuck too.
For nearly half an hour both Joe and I battled those zipper monsters.
The laughter must have ricocheted all over the apartment and down the hallway. It was a simply wonderful moment. A simple moment. A wonderful moment.
I'm asked, sometimes, if I feel my life has been lessened by my disability.
I am able to make children laugh.
Huge, big, uncontrollable laughs.
So, my answer to that question is - no.
But earlier we had come in from taking them out to see the Christmas lights and decorations in our area. It was cold so we came home sooner than we'd planned. When we got in, Ruby asked for help with a stuck zipper on her jacket. I offered to help because Joe was helping Sadie get her boots off. I took hold of the zipper and decided to pull it up before trying to pull it back down. It came up easily. Then as I pulled it down a bit I got struck with a bit of whimsy. I pretended that the zipper was fighting back. I screamed and fought with the zipper which went up and down and up and down and down and up. The coat flung out and and back and was entirely out of control.
So was Ruby.
She was crying she was laughing so hard.
Sadie came to watch.
Suddenly Sadie's coat was on and her zipper was stuck too.
For nearly half an hour both Joe and I battled those zipper monsters.
The laughter must have ricocheted all over the apartment and down the hallway. It was a simply wonderful moment. A simple moment. A wonderful moment.
I'm asked, sometimes, if I feel my life has been lessened by my disability.
I am able to make children laugh.
Huge, big, uncontrollable laughs.
So, my answer to that question is - no.
Friday, November 23, 2012
Buttons
Not to seem like I'm carping, but sometimes they place the disability door button so far from the door that you can't push it and then get back into position to enter the door before it's already closed again. I don't know if others have noticed the phenomenon. It seems like those who designed the doors expected all people with disabilities who need them to be accompanied by someone who can push while they enter. Goodness knows, you wouldn't want us out on our own after all!
Now, in actuality, I'm not often on my own. Joe is usually with me. So we mutter about the silly places they put the buttons but just get on with it. But yesterday I was on my own trying to get into a store which is difficult even at the best of times, even with Joe to push the button. It's a transfer point. People get off the subway and come up and catch one of the streetcars there. There are always a huge throng of people exiting and entering. Yes, there are six other doors, or actually three sets of double swinging doors, but everyone comes through the one identified as for people with disabilities.
I'd pushed the button and got over but the door was swinging shut. Suddenly it swung open again, I could see that there was another mob headed to the door so I slipped through, there is another set of identical doors that need to be got through to finally gain entrance to the store. It swung open too. I noticed that the woman who had pushed the first door had gone through and pushed the other door. She stood with her body blocking the flow of foot traffic giving me space to get through.
I thanked her.
She brushed of the thanks saying, 'No problem.'
I said, "No, really. Thank you I found that really helpful.'
Again she said, 'No problem.'
I didn't want to gush so I just smiled and went on. See the thing is, it really isn't a problem, it really is just a nice thing to do. But it requires that someone notice and someone to take a moments time. And that does seem to be a problem in this day and this age.
But her little gift of kindness stayed with me for the whole rest of the afternoon, and even well into the evening. She probably doesn't know that what she did had such effect, but it did.
Notice.
Take a moment.
Simple what it takes to create a world of caring.
Now, in actuality, I'm not often on my own. Joe is usually with me. So we mutter about the silly places they put the buttons but just get on with it. But yesterday I was on my own trying to get into a store which is difficult even at the best of times, even with Joe to push the button. It's a transfer point. People get off the subway and come up and catch one of the streetcars there. There are always a huge throng of people exiting and entering. Yes, there are six other doors, or actually three sets of double swinging doors, but everyone comes through the one identified as for people with disabilities.
I'd pushed the button and got over but the door was swinging shut. Suddenly it swung open again, I could see that there was another mob headed to the door so I slipped through, there is another set of identical doors that need to be got through to finally gain entrance to the store. It swung open too. I noticed that the woman who had pushed the first door had gone through and pushed the other door. She stood with her body blocking the flow of foot traffic giving me space to get through.
I thanked her.
She brushed of the thanks saying, 'No problem.'
I said, "No, really. Thank you I found that really helpful.'
Again she said, 'No problem.'
I didn't want to gush so I just smiled and went on. See the thing is, it really isn't a problem, it really is just a nice thing to do. But it requires that someone notice and someone to take a moments time. And that does seem to be a problem in this day and this age.
But her little gift of kindness stayed with me for the whole rest of the afternoon, and even well into the evening. She probably doesn't know that what she did had such effect, but it did.
Notice.
Take a moment.
Simple what it takes to create a world of caring.
Thursday, November 22, 2012
Me! Damn!!
You know how awful it is when someone looks at you and then makes an assumption based on stereotype? Annoying, right? Outright outrageous, right? Anyone with a disability, with a difference, will know what I'm talking about here.
You know what's EVEN WORSE THAN THAT!?!?!?!?!?!?
When you are the one making the assumption, and you know that you know better so you have no excuse.
Shit.
I was riding on WheelTrans to work, very early in the morning. When I'm picked up and it's still 6 o'something in the morning, I'm usually the first on the bus. Not yesterday. I was pickup number four and three other people were already on board. To my right was a young woman, very attractive, dressed like the fashionable student that she was, who was dropped off at a downtown University. To my left and ahead of me was a very elderly man strapped into his seat with his walker strapped down up at the front. To my right and behind me was an elderly woman, strapped into her seat with her cane resting on her lap.
We all rode in silence.
At that time in the morning no one is particularly chatty.
I did speak to the older man, though, as the window above him was open about an inch and cold air poured into the van and streamed over me. I was getting colder and colder and colder. The older guy didn't seem to be awake and I really didn't want to bother him but when my left ear was so cold Joe's tongue would stick to it I spoke up. He woke but didn't comprehend what I'd asked. The driver spoke up and said that we'd be stopping soon and he'd get the window closed for me.
Fine.
Good, even.
Then we pulled up to an industrial plaza kind of place, I've been to many of these kinds of places all over the city, they seem to be popular for housing day programmes of one sort or another. When the bus stopped I looked to see what the place was called. I do this for two reasons. One, this is a great way to get to know the length and breadth of services in the city. Two, sometimes their names are so bad as to be funny. I couldn't see the name of the place anywhere.
The fellow got up, with great difficulty, and began towards the door of the bus. The woman behind also got up, under her own steam, and slipped by me and I watched them both exit the bus and go to the door. I SAW her take a key out of her purse and unlatch the door. They entered, him taking some time to step up the small step to enter the building.
As the driver was shutting the window I asked him what place this was. He told me that the couple runs a very successful business out of this building and that he drops them off quite regularly and always early in the morning. "They work long hours," he told me. I was gobsmacked. I had absolutely assumed that they were being dropped off at some kind of day services for seniors. Absolutely sure. That's ABSOLUTELY SURE.
And I was wrong.
I made the same kind of assumption about them that others make about me.
I KNOW BETTER.
Shit.
A lot better.
I shook myself alert, reminded myself to be careful in categorising people.
You know what's even worse?
I'm really exposing myself here.
I felt that my assumption about them going to a senior centre for some cards and coffee lessened who they were. AS IF. AS IF. AS IF working in their own business made them somehow more, I don't know ... yes I do ... valuable.
SHIT.
What's wrong with me????
Every time I think I have the destination in sight, I discover that I'm still miles and miles and miles from having arrived.
Damn and Blast.
You know what's EVEN WORSE THAN THAT!?!?!?!?!?!?
When you are the one making the assumption, and you know that you know better so you have no excuse.
Shit.
I was riding on WheelTrans to work, very early in the morning. When I'm picked up and it's still 6 o'something in the morning, I'm usually the first on the bus. Not yesterday. I was pickup number four and three other people were already on board. To my right was a young woman, very attractive, dressed like the fashionable student that she was, who was dropped off at a downtown University. To my left and ahead of me was a very elderly man strapped into his seat with his walker strapped down up at the front. To my right and behind me was an elderly woman, strapped into her seat with her cane resting on her lap.
We all rode in silence.
At that time in the morning no one is particularly chatty.
I did speak to the older man, though, as the window above him was open about an inch and cold air poured into the van and streamed over me. I was getting colder and colder and colder. The older guy didn't seem to be awake and I really didn't want to bother him but when my left ear was so cold Joe's tongue would stick to it I spoke up. He woke but didn't comprehend what I'd asked. The driver spoke up and said that we'd be stopping soon and he'd get the window closed for me.
Fine.
Good, even.
Then we pulled up to an industrial plaza kind of place, I've been to many of these kinds of places all over the city, they seem to be popular for housing day programmes of one sort or another. When the bus stopped I looked to see what the place was called. I do this for two reasons. One, this is a great way to get to know the length and breadth of services in the city. Two, sometimes their names are so bad as to be funny. I couldn't see the name of the place anywhere.
The fellow got up, with great difficulty, and began towards the door of the bus. The woman behind also got up, under her own steam, and slipped by me and I watched them both exit the bus and go to the door. I SAW her take a key out of her purse and unlatch the door. They entered, him taking some time to step up the small step to enter the building.
As the driver was shutting the window I asked him what place this was. He told me that the couple runs a very successful business out of this building and that he drops them off quite regularly and always early in the morning. "They work long hours," he told me. I was gobsmacked. I had absolutely assumed that they were being dropped off at some kind of day services for seniors. Absolutely sure. That's ABSOLUTELY SURE.
And I was wrong.
I made the same kind of assumption about them that others make about me.
I KNOW BETTER.
Shit.
A lot better.
I shook myself alert, reminded myself to be careful in categorising people.
You know what's even worse?
I'm really exposing myself here.
I felt that my assumption about them going to a senior centre for some cards and coffee lessened who they were. AS IF. AS IF. AS IF working in their own business made them somehow more, I don't know ... yes I do ... valuable.
SHIT.
What's wrong with me????
Every time I think I have the destination in sight, I discover that I'm still miles and miles and miles from having arrived.
Damn and Blast.
Wednesday, November 21, 2012
CHP
I can't describe what it felt like to be sitting there.
I really can't.
Keynote speeches have a stress all of their own. For me it involves an intense talking to that I give myself. Why did I agree to do this? What was I thinking? Is there a way to get out of here? Where are my drugs? The pressure of waiting is almost intolerable. Even all these years later, with my first keynote speech in the far distant past, I find the writing and delivering of keynotes to be, perhaps, some of the hardest work that I do. But I do it.
Yet.
This was a keynote speech but there was something else happening in my mind. Something competing with the stress and the panic and the internal dialogue. I looked out over the people sitting waiting. I looked over at the organisers ensuring all was running smoothly. And I couldn't believe I was there. I couldn't believe that I'd been asked to speak at all. I couldn't believe that all these people were waiting and even wanting to hear what I had to say.
Let me explain.
Almost all, if not all, of my public speaking is to either people with disabilities or service providers funded to work with people with disabilities. This wasn't that. At all. I'd been invited by Community Homes People in Chelmsford to speak at their AGM. Not only to speak, but to keynote the day. This organisation serves people with disabilities, true, but that's not what they do. They serve people, people who live in the community, therefore they serve people with intellectual disabilities. Serving people with disabilities is a byproduct of inclusively. Yet they wanted me to address the issue of Bullying and Teasing of the tenants who had an intellectual disability. They wanted to take ACTION. They wanted it to STOP.
It's almost hard for me to believe that people, outside the disability community or the community of service providers, actually care about bullying, teasing and hateful language when the victim is a person with an intellectual disability. I was in the store the other day and saw that the R rated version of the Ted teddy bear uses the two word phrase 'f#cking ret#rd' and people around it thought it was hilarious. So, with general social approval for the public use of words that hurt people with disabilities, it was simply stunning to see an audience who didn't have to be there, and organisers who would not have been criticised for downplaying the issue ... all in the same room ready to listen and ready to take action. It seems that sometimes it's even hard to get those who are paid to care to care - and yet I looked out at kindly and expectant faces. I had to fight tears before even beginning.
On coming into the building I met a fellow with a disability who had been at a bullying and teasing workshop that I had done a year before. I was touched to see that he had a Christmas card in his hand that he had brought to give me. He wanted to thank me for the workshop and was looking forward to saying hello. He was really, really, pleased that I was going to talk about bullying and he was even more pleased that CHP had made it such a big part of the day. I was humbled by what he said to me. I was humbled by the expectation he had of me to make people think, make people change.
So I sat there.
Amazed that I was sitting there.
I had all these feelings bubbling inside of me.
One of them, distinctly, was hope.
I really can't.
Keynote speeches have a stress all of their own. For me it involves an intense talking to that I give myself. Why did I agree to do this? What was I thinking? Is there a way to get out of here? Where are my drugs? The pressure of waiting is almost intolerable. Even all these years later, with my first keynote speech in the far distant past, I find the writing and delivering of keynotes to be, perhaps, some of the hardest work that I do. But I do it.
Yet.
This was a keynote speech but there was something else happening in my mind. Something competing with the stress and the panic and the internal dialogue. I looked out over the people sitting waiting. I looked over at the organisers ensuring all was running smoothly. And I couldn't believe I was there. I couldn't believe that I'd been asked to speak at all. I couldn't believe that all these people were waiting and even wanting to hear what I had to say.
Let me explain.
Almost all, if not all, of my public speaking is to either people with disabilities or service providers funded to work with people with disabilities. This wasn't that. At all. I'd been invited by Community Homes People in Chelmsford to speak at their AGM. Not only to speak, but to keynote the day. This organisation serves people with disabilities, true, but that's not what they do. They serve people, people who live in the community, therefore they serve people with intellectual disabilities. Serving people with disabilities is a byproduct of inclusively. Yet they wanted me to address the issue of Bullying and Teasing of the tenants who had an intellectual disability. They wanted to take ACTION. They wanted it to STOP.
It's almost hard for me to believe that people, outside the disability community or the community of service providers, actually care about bullying, teasing and hateful language when the victim is a person with an intellectual disability. I was in the store the other day and saw that the R rated version of the Ted teddy bear uses the two word phrase 'f#cking ret#rd' and people around it thought it was hilarious. So, with general social approval for the public use of words that hurt people with disabilities, it was simply stunning to see an audience who didn't have to be there, and organisers who would not have been criticised for downplaying the issue ... all in the same room ready to listen and ready to take action. It seems that sometimes it's even hard to get those who are paid to care to care - and yet I looked out at kindly and expectant faces. I had to fight tears before even beginning.
On coming into the building I met a fellow with a disability who had been at a bullying and teasing workshop that I had done a year before. I was touched to see that he had a Christmas card in his hand that he had brought to give me. He wanted to thank me for the workshop and was looking forward to saying hello. He was really, really, pleased that I was going to talk about bullying and he was even more pleased that CHP had made it such a big part of the day. I was humbled by what he said to me. I was humbled by the expectation he had of me to make people think, make people change.
So I sat there.
Amazed that I was sitting there.
I had all these feelings bubbling inside of me.
One of them, distinctly, was hope.
Tuesday, November 20, 2012
Help Me If You Can ...
At the airport Joe and I stopped and had breakfast, we'd gotten there very early. We expect things to go wrong, or at least be difficult, so we go really, really early so that there's time for solutions. However, check in went fine, seats were assigned with a fair degree of speed. Not only that, security was also quick. So we had time. We went over to where we knew they served a good hot breakfast. I was done first so I told Joe I'd roll over to the entrance to the gates and we'd meet there. I wanted to get out and stretch my arms a bit, move about in the chair, before being stuck in an airplane seat for over eight hours.
I got to the entrance to the gates, even managed to get up the long ramp there, thinking how much that would impress Joe. And then. Joe didn't show. And he didn't show. And he didn't show. I stopped an airport employee and asked if I was in the main entrance and she assured me that I was. It was getting perilously close to time for boarding. Finally I rolled down the ramp towards two people in purple that were there to help passengers.
Approaching them, I arranged my face, I wanted to ask for help without looking like I was at all panicked. I knew that Joe would not take off without me. I knew that there was an explanation for what was happening. I felt panic but knew that I shouldn't. I told them of my problem. They told me they were there to help me. I stared at them waiting for help. They didn't do anything. I said, "Um, help?" They asked me my destination and my airline. One of them went away and came back to say that the gate wasn't posted yet.
They told me that my friend would find me.
That I would get to my gate.
That everything would be all right.
They were talking to me like I was a simple child. They were using an exaggerated way of speaking, like adults do when they think they are being charming with a 4 year old. They did everything but pat me on the head and say 'there, there.' I said again, "Um, help?" And they again told me ...
that everything would be alright.
that I would get to my gate.
that I would not miss my flight.
But they didn't do anything. I asked them to page Joe. They said they couldn't do that. I asked them to get me someone who could assist with pushing me to the gate. They said they couldn't do that. What they did do was reassure me that it would all be OK.
When Joe showed up, I was predictably angry. Where the hell was he? He was predictably angry. Where the hell had I been? We'd missed one another. We cussed and fussed all the way to the washroom and from there on to the plane.
I told Joe about the two people who spoke to me like I was a little child. That I'd tried to be very adult when approaching them for help but that they'd responded to me, each trying to out 'understand' the other, each completely patronising.me during the whole process. It was like they saw me as a lost child rather than a man needing some kind of assistance.
It is rare that I have to ask for help from a stranger. I don't do that often. I accept help when offered sometimes, but I ask for it rarely. I think I have always been afraid that my disability status plus my need for help would result in a loss of adulthood. And that's what happened.
All that was missing was the 'there, there, it'll all be OK snookums.'
I got to the entrance to the gates, even managed to get up the long ramp there, thinking how much that would impress Joe. And then. Joe didn't show. And he didn't show. And he didn't show. I stopped an airport employee and asked if I was in the main entrance and she assured me that I was. It was getting perilously close to time for boarding. Finally I rolled down the ramp towards two people in purple that were there to help passengers.
Approaching them, I arranged my face, I wanted to ask for help without looking like I was at all panicked. I knew that Joe would not take off without me. I knew that there was an explanation for what was happening. I felt panic but knew that I shouldn't. I told them of my problem. They told me they were there to help me. I stared at them waiting for help. They didn't do anything. I said, "Um, help?" They asked me my destination and my airline. One of them went away and came back to say that the gate wasn't posted yet.
They told me that my friend would find me.
That I would get to my gate.
That everything would be all right.
They were talking to me like I was a simple child. They were using an exaggerated way of speaking, like adults do when they think they are being charming with a 4 year old. They did everything but pat me on the head and say 'there, there.' I said again, "Um, help?" And they again told me ...
that everything would be alright.
that I would get to my gate.
that I would not miss my flight.
But they didn't do anything. I asked them to page Joe. They said they couldn't do that. I asked them to get me someone who could assist with pushing me to the gate. They said they couldn't do that. What they did do was reassure me that it would all be OK.
When Joe showed up, I was predictably angry. Where the hell was he? He was predictably angry. Where the hell had I been? We'd missed one another. We cussed and fussed all the way to the washroom and from there on to the plane.
I told Joe about the two people who spoke to me like I was a little child. That I'd tried to be very adult when approaching them for help but that they'd responded to me, each trying to out 'understand' the other, each completely patronising.me during the whole process. It was like they saw me as a lost child rather than a man needing some kind of assistance.
It is rare that I have to ask for help from a stranger. I don't do that often. I accept help when offered sometimes, but I ask for it rarely. I think I have always been afraid that my disability status plus my need for help would result in a loss of adulthood. And that's what happened.
All that was missing was the 'there, there, it'll all be OK snookums.'
Monday, November 19, 2012
Yikes
Whoa!
Today's been a rough, rough day. The 5 hour time change had us crash and burn. We managed to get out and do some shopping. We managed to scrape together a meal. We managed to do what needed to be done. But not much more.
It's been nice to be back in my power wheelchair, it gives freedom and independence. But I have to say we managed pretty well over in the UK in my manual chair, getting everywhere we needed to with minimum fuss. We are very clearly acclimatized to travelling with the chair. Even so, the power chair was nice. The only drawback was that we found places that had been fully accessible now were only barely so. With Christmas displays clogging the aisles I had to be so very careful that I found my temper fraying. We decided to wait until I was more rested before trying to negotiate these newly tight spaces.
So, I apologise for having a lack luster blog post today. I wanted to write a bit more but I am using all my energy pushing my body and soul five hours back. What work that is! I'm hoping that tonight will bring a restful sleep and that riding the bus to the office will give a sense of both time and normality. I'm hoping that my internal alarm clock won't wake me at midnight.
Hope your Monday is wonderful!
Today's been a rough, rough day. The 5 hour time change had us crash and burn. We managed to get out and do some shopping. We managed to scrape together a meal. We managed to do what needed to be done. But not much more.
It's been nice to be back in my power wheelchair, it gives freedom and independence. But I have to say we managed pretty well over in the UK in my manual chair, getting everywhere we needed to with minimum fuss. We are very clearly acclimatized to travelling with the chair. Even so, the power chair was nice. The only drawback was that we found places that had been fully accessible now were only barely so. With Christmas displays clogging the aisles I had to be so very careful that I found my temper fraying. We decided to wait until I was more rested before trying to negotiate these newly tight spaces.
So, I apologise for having a lack luster blog post today. I wanted to write a bit more but I am using all my energy pushing my body and soul five hours back. What work that is! I'm hoping that tonight will bring a restful sleep and that riding the bus to the office will give a sense of both time and normality. I'm hoping that my internal alarm clock won't wake me at midnight.
Hope your Monday is wonderful!
Sunday, November 18, 2012
Rolling's Book Club: At Swim, Two Boys
At Swim, Two Boys
a book review by Shannon
Jamie O’Neill’s 2001 novel about the
relationship between two teenage boys, their friendship and their love,
takes place in Ireland in 1916. The timeframe and plot points of the
book are centred between spring 1915 and Easter 1916 – the
weekend of the Easter Rising, an insurrection designed to end British
rule of Ireland.
The most important aspect of the book is the
development of the love story between the two main characters. Doyler,
18, a patriotic supporter of Irish independence, and Jim, 16, a naïve
and endearing boy who thinks he may have a “vocation”
– a call to be a monk. The boys are known to each other when the story
opens, but become close through two series of events. The first is when
Doyler joins a boys’ marching band to which Jim belongs, and for which
they both play flute. The second is when Doyler
takes Jim to the Forty Foot “Gentlemen’s Bathing Area”. The boys make a
pact that Doyler will teach Jim to swim, and they will together make
the dangerous swim to the Muglins, a rocky island out in Sandycove Bay,
to plant a flag and claim it for Ireland.
Written as a “stream of consciousness”, the
narration changes fluidly throughout the novel, at times running all
over you like tide. The author has done beautiful things with this
style, which at first I found slightly hard going, but which
quickly became an internal voice in my own head. O’Neill really does a
masterful job of linking the message with the media – the watery,
swimming theme of the novel with the flowing, running, washing style of
narration. Like Jim, it does take the reader a
little while to find our stroke. By the time Doyler congratulates Jim
“You’re in the swim!”, so are we readers – and there’s no putting the
book down after that.
As Dave said in his book club announcement for
this novel, “…the realities of people with disabilities are worth a
look. The books aren’t ABOUT disability...” That’s certainly true of
“Two Boys”. Doyler walks with a limp, which he claims
is the result of an injury during a fight between policemen and
newsboys in Dublin. “He wouldn’t mind an odd limp getting it some way
useful like that.” In fact, his stepfather irreparably damaged him
during a beating administered with the leg of a broken
chair.
Doyler’s limp is most prominent during the first
third of the book. Well, I say “prominent” – in fact it’s never
prominent. As theme elements go, it doesn’t have much to do with the
character as we understand him. It does affect him, though,
and has shaped his life. At a time when men of his social class (his
family lives in a one-room shanty with an earthen floor, his mother
takes in washing, and his stepfather sells newspapers when he isn’t
falling down with drink and tuberculosis) would be
doing hard physical work in order to bring a wage home to the family,
his injury relegates him to being the “dungman’s monkey” – the boy who
carries a household’s sewage out in bucketfuls and takes it away in a
cart. “Vile job that. Vile smell. Murder on the
lungs, day in day out.” Beginning with Jim’s father, whose midden is
being emptied, the characters notice Doyler’s limp. He explains it a few
times – again the lie about being hit by a policeman while taking part
in a newsboys’ strike.
As the novel progresses, though, Doyler’s limp
is mentioned less and less often. Reading, you notice this omission
briefly, but the events of the novel, the love story and its
complications, take precedence and crowd the limp out of your
mind.
One incident quite late in the novel, at least a
few hundred pages after the last mention, someone sees Doyler from far
away and recognizes his halting gait. But in the meantime, it just isn’t
there.
As the novel moves forward towards the climax of
the Easter Rising, the reader gets very caught up in the relationships
between the characters. Their feelings for one another are strong, and
all the stronger for being culturally suppressed.
And it’s not about disability. Not at all.
Not even a little bit.
It’s a lyrical, rhythmic poem to love and
friendship. It’s about humans adapting, and figuring out their
relationships, changing what doesn’t work, and getting on with their
lives. It’s about people loving each other and making sacrifices
and finding joy. And if one of these people limps through his life’s
journey, that makes it all the more real.
So…I guess it is about disability, after all.
Quotes from “At Swim, Two Boys”, by Jamie O’Neill, Simon & Schuster UK, 2002
Saturday, November 17, 2012
Profound Rights
I'm home.
There are many more stories to tell of our trip to the United Kingdom. I've told relatively few of them. Partly because with the travel and the hotels and the work there hasn't been time to really process some of what happened. But also partly because I feel inadequate to express some of what I saw and much of what I felt while being there. I met people who amazed me. I did things I've never done before. I find myself not knowing the vocabulary that I need. I will need time to process.
I remember when working with self advocates at Community Living Essex many years ago as they were developing a 'Bill of Rights' for the organisation. CL Essex was one of the first, if not the first, organisation in Ontario to engage their members in drafting a Bill of Rights to guide the organisation and to assist in training both staff and people with disabilities. I was new to facilitating these workshops. They are fun and exciting and it's always interesting to hear what people want as service recipients - it's never what is either expected or feared.
One of the fellows at the workshop that day came up with a right that was so profound, so new and fresh, that it stunned me with it's simplicity. I know that I am facilitating not leading in two ways, one is that I am surprised by the outcomes, and two is that each Bill of Rights is different from the others. Well, this one was new to me, it's also never come up in another group. Even so, I think it's a right that needs to be considered when providing service to people with intellectual disabilities - the older I get, the more I think it's a right we all need:
The Right To The Extra Five Minutes I Need To Think
How cool is that? I still remember, all these years later, him saying it and the explosion that went off in my head as a result of it. I've thought of it often over the years in my work with people with disabilities, in my work with families and in my work with staff. I remember when I was taking my Masters degree, one of my professors when listening to a tape recording of a counselling session with someone with a disability (yes I had consent) said that one of my problems as a counsellor was that I constantly 'grew for the person'. She told me that I didn't give enough space for growth to happen naturally and independently of my own realisations. In effect, though I didn't know it then, I hadn't given the extra five minutes.
So, that's what I'm going to take for myself over the next several weeks. Blogs from my experiences in the UK are just going to pop in. Out of sync with time. Out of the flow of my life. Because I believe that with some time and with some thought I might be able to find the ways to tell you of some of what happened. Some of the deeply profound experiences that I had.
So ... onwards.
Tomorrow, I am taking off as Shannon takes on the Book Club with her review of 'At Swim, Two Boys.' See you Monday.
There are many more stories to tell of our trip to the United Kingdom. I've told relatively few of them. Partly because with the travel and the hotels and the work there hasn't been time to really process some of what happened. But also partly because I feel inadequate to express some of what I saw and much of what I felt while being there. I met people who amazed me. I did things I've never done before. I find myself not knowing the vocabulary that I need. I will need time to process.
I remember when working with self advocates at Community Living Essex many years ago as they were developing a 'Bill of Rights' for the organisation. CL Essex was one of the first, if not the first, organisation in Ontario to engage their members in drafting a Bill of Rights to guide the organisation and to assist in training both staff and people with disabilities. I was new to facilitating these workshops. They are fun and exciting and it's always interesting to hear what people want as service recipients - it's never what is either expected or feared.
One of the fellows at the workshop that day came up with a right that was so profound, so new and fresh, that it stunned me with it's simplicity. I know that I am facilitating not leading in two ways, one is that I am surprised by the outcomes, and two is that each Bill of Rights is different from the others. Well, this one was new to me, it's also never come up in another group. Even so, I think it's a right that needs to be considered when providing service to people with intellectual disabilities - the older I get, the more I think it's a right we all need:
The Right To The Extra Five Minutes I Need To Think
How cool is that? I still remember, all these years later, him saying it and the explosion that went off in my head as a result of it. I've thought of it often over the years in my work with people with disabilities, in my work with families and in my work with staff. I remember when I was taking my Masters degree, one of my professors when listening to a tape recording of a counselling session with someone with a disability (yes I had consent) said that one of my problems as a counsellor was that I constantly 'grew for the person'. She told me that I didn't give enough space for growth to happen naturally and independently of my own realisations. In effect, though I didn't know it then, I hadn't given the extra five minutes.
So, that's what I'm going to take for myself over the next several weeks. Blogs from my experiences in the UK are just going to pop in. Out of sync with time. Out of the flow of my life. Because I believe that with some time and with some thought I might be able to find the ways to tell you of some of what happened. Some of the deeply profound experiences that I had.
So ... onwards.
Tomorrow, I am taking off as Shannon takes on the Book Club with her review of 'At Swim, Two Boys.' See you Monday.
Friday, November 16, 2012
Next Year
All we saw were slight waves on the waters of Loch Ness. As much as I kept my eyes trained for suspicious movement, Nessie was no where to be seen. So we stopped at a gift shop to pick up a few postcards and maybe a gift or two. At first I was frustrated looking at the postcards, all the postcards presented pictures of the monster smiling. Grinning. Winking. "A friendly sort of monster,' I said to myself mockingly and then like a cold wind blew over my skin, I realized just how appropriate these images are, for monster's often smile.
Second week on the ward. It's cold outside, snowing. I was new to the eastern part of Canada having moved from the balmy climate of Victoria. Our ward shift had a supervisor but the real power rested with a woman, younger than I, louder than I, more forceful than anyone I had yet met. She had a clash with one of the women on the ward and seconds later she threw open the ward door, then she threw the woman outside. It was cold. Really really cold. My staff mate was colder. I said, 'She's only in her nightie.' Then, 'She's got bare feet.' Then, I was told to shut up. I did.
Later we were all to go out for a beer, I begged off. The next shift I heard about the night in the bar, about how funny my powerful peer was, how she made everyone laugh. What a wit. What a card. What a cut up. And the abuser, the monster, laughed over her beer.
We had lunch together. Lunch. I knew his wife. I admired him. He was one of those wonderful guys who manages to be easy to like. Laughs freely, listens well, looks great ... a man's man. He spoke of his faith, his love of Jesus, with a quiet conviction. He never preached at you, never pressed you, but his convictions were never far from any conversation.
Then the world exploded. A man with a disability came forward, fearfully, and reported that he was being victimized by this man of prayer. That he was being sexually used. He came forward, finally, because his girlfriend who had been pulled into sick sexual games with Family Man insisted that it stop or she would leave him. He loved her, he hated the abuse, the choice was made. After a bungled report to the police nothing happened. Staff left his position, went to another agency, last I heard of him he was at a meeting laughing being congratulated for his commitment to the vulnerable. Yes, the abuser, the monster, smiles as he preys.
This is my last lecture tour of the year. The New Year looms. In January I will end three years and begin my fourth year in residence as a Director at Vita Community Living Services. I went there those years ago with a proposal. I wanted to work with an agency, making changes, examining structures, looking at protocols and policies, examining hierarchy - all with an eye to reducing abuse, setting the goal of an abuse free agency. Three years have passed.
We have seen reports of abuse increase. We have seen people with disabilities discover power. We have seen staff grow strong, grow resistant to abusive situations and abusive practices. We have had incredible growing pains, we have made real mistakes. But we have never ever taken our eyes of the goal. We know the monster smiles, we know that we cannot identify, from the glint in the eye of a job applicant those who abuse and those who do not. But we also know that we can do much to change the dynamic. We can resist the temptation to give up.
Before I left on this trip, Manuela (the executive director) and I agreed that next year will be the year that we create a road map for others to follow. That we begin to go public with what we have found. That we challenge systems to change, that we dare administrators to responsibility, that we throw down the gauntlet and say 'Enough. Abuse Ends Now.'
I bought a post card of a smiling monster to send to Vita. It is a symbol, for me, of the challenge we set for ourselves next year, of the achievements of the last three years, of what it means to look evil the eye and wipe the smile off it's face.
Second week on the ward. It's cold outside, snowing. I was new to the eastern part of Canada having moved from the balmy climate of Victoria. Our ward shift had a supervisor but the real power rested with a woman, younger than I, louder than I, more forceful than anyone I had yet met. She had a clash with one of the women on the ward and seconds later she threw open the ward door, then she threw the woman outside. It was cold. Really really cold. My staff mate was colder. I said, 'She's only in her nightie.' Then, 'She's got bare feet.' Then, I was told to shut up. I did.
Later we were all to go out for a beer, I begged off. The next shift I heard about the night in the bar, about how funny my powerful peer was, how she made everyone laugh. What a wit. What a card. What a cut up. And the abuser, the monster, laughed over her beer.
We had lunch together. Lunch. I knew his wife. I admired him. He was one of those wonderful guys who manages to be easy to like. Laughs freely, listens well, looks great ... a man's man. He spoke of his faith, his love of Jesus, with a quiet conviction. He never preached at you, never pressed you, but his convictions were never far from any conversation.
Then the world exploded. A man with a disability came forward, fearfully, and reported that he was being victimized by this man of prayer. That he was being sexually used. He came forward, finally, because his girlfriend who had been pulled into sick sexual games with Family Man insisted that it stop or she would leave him. He loved her, he hated the abuse, the choice was made. After a bungled report to the police nothing happened. Staff left his position, went to another agency, last I heard of him he was at a meeting laughing being congratulated for his commitment to the vulnerable. Yes, the abuser, the monster, smiles as he preys.
This is my last lecture tour of the year. The New Year looms. In January I will end three years and begin my fourth year in residence as a Director at Vita Community Living Services. I went there those years ago with a proposal. I wanted to work with an agency, making changes, examining structures, looking at protocols and policies, examining hierarchy - all with an eye to reducing abuse, setting the goal of an abuse free agency. Three years have passed.
We have seen reports of abuse increase. We have seen people with disabilities discover power. We have seen staff grow strong, grow resistant to abusive situations and abusive practices. We have had incredible growing pains, we have made real mistakes. But we have never ever taken our eyes of the goal. We know the monster smiles, we know that we cannot identify, from the glint in the eye of a job applicant those who abuse and those who do not. But we also know that we can do much to change the dynamic. We can resist the temptation to give up.
Before I left on this trip, Manuela (the executive director) and I agreed that next year will be the year that we create a road map for others to follow. That we begin to go public with what we have found. That we challenge systems to change, that we dare administrators to responsibility, that we throw down the gauntlet and say 'Enough. Abuse Ends Now.'
I bought a post card of a smiling monster to send to Vita. It is a symbol, for me, of the challenge we set for ourselves next year, of the achievements of the last three years, of what it means to look evil the eye and wipe the smile off it's face.
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