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:

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.


Thursday, November 29, 2012

St. Peter's

ST. PETER'S GOLDEN ALE MINI KEG


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.

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:

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.

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.

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.

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.

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.'

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!

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 na├»ve 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.

Friday, November 16, 2012

Space Cadet

Yesterday I saw something cool.

We stopped for a cup of tea, not knowing then that the search for an accessible bathroom was going to test the exact capacity of my bladder. So we sipped tea at our table and talked about trip nearing an end. As we talked a fellow using a scooter pulled up to a table near us. H managed to steer his scooter with one hand and carry his drink in his other. He set it down, pushed a chair out of the way and then got the scooter right where he wanted it.

He took a sip of his coffee.

Then he pulled a bag out of a bag. A small string bag was then strung between the arm of the wheelchair and the knob on the chair he'd placed out of the way. It hung suspended between the two. Then he pulled a series of pens and pencils out and began to sketch something on the table, taking his time on his drawing. The bag was used constantly and it was perfectly in his reach.

Now, so I don't upset readers by commenting on this, what I liked wasn't his ability to drive the scooter, or place his tea, or draw his drawing. I liked, really liked, his complete control of his space. I find as a disabled person I don't often feel like I own space in the way that non-disabled people seem to own theirs. I feel, in the way. I feel like I'm taking up space that belongs to someone, anyone, other than me. Not this fellow. He simply used the space in the same same way that anyone else would. It was like he had no problem 'belonging' or 'claiming' or 'being' where he was, without apology.

Sitting there, with Joe, someone stepped behind me brushing against the bag on the back of my chair. I immediately felt like I had to apologise. There was lots of space. They weren't paying attention. They ran into me, but I felt like I was the problem, the space I took theirs not mine.

I watched this man, comfortably, casually using space. In reality he took up no more space than anyone else at the table would have taken. He had moved the chair just so - just so it wouldn't be in the way but would be perfect for hanging one end of the string bag. He had the kind of confidence that I want. He had the kind of sense of citizenship that I crave. He had what self esteem brings - the ability to occupy, fully, his own skin, and to occupy, fully, his own space.

I want, even for fifteen minutes, even just once, to be like him.

Thursday, November 15, 2012

Big Bathrooms

Shame shows itself in so many different ways.

I was checking into a hotel and the room that had been booked wasn't available, for a reason that I didn't understand but which was explained to me in oddly confusing and completely intimate detail, but I was assured that they had another room with a 'big bathroom.'

I asked and I asked and I asked, specific questions, and the woman at the desk kept answering me by telling me that YES it was a big bathroom.

Is it an accessible bathroom?

Yes, it is a big bathroom.

Does it have bars around the toilet?

Yes, it is a big bathroom.

Does it have a wide door for wheelchair entry?

Yes, it is a big bathroom.

Does it have bars in the shower?

Yes, it is a big bathroom.

I understood the 'yes' part but I didn't get the 'big bathroom' part. I know that accessible loos are often bigger, but I wanted clarity before I hauled ass up to the room. Joe said, in frustration, that's he'd go up to the room to check it. He, like I, was concerned and confused by the 'big bathroom' statement. I waited to the side for him to return, he came back and gave me the thumbs up signal as soon as he stepped off the elevator.

I went back to the desk and said, "OK, so it's an accessible bathroom."

She said, "Yes, it's a big bathroom."

I then said "Why can't you just say it's 'accessible?' When you say it's 'big' it doesn't mean anything to me. I need to hear the word, 'accessible.'"

With great discomfort she said, "The bathroom is accessible," lowering her voice like she'd said something dirty, continuing with, "for ..." here she pointed at my wheelchair looking embarrassed.

This woman works in the hospitality industry, surely to heavens she can say the word WHEELCHAIR!

I was feeling extraordinarily patient and the woman hadn't been overtly hostile in any way, just extremely embarrassed about accessibility and wheelchairs. Like she didn't want to offend me by noticing I had a disability and needed to poo in an accessible loo. I explained to her that the word 'accessible' was one that gave me COMFORT AND REASSURANCE and that my wheelchair was just my wheelchair, it's not a source of shame.

She smiled at me as if she thought I was brave.

Sometimes, really, sometimes, you can't win.    

Wednesday, November 14, 2012

Pasta and Protection

I want to tell you about an amazing conversation. Joe and I went out for lunch with a couple of guys with disabilities we had met during one of our trainings. It had been arranged by a woman we all knew in common and she, we and they met at an Italian restaurant. It was a fun and easy time together. Conversation flowed naturally and covered a wide range of topics. These were guys with interests and who lived full lives - they also had the ability to be interested in the lives of others so our conversation ranged back and forth across the big pond.

Then, suddenly, they were telling us about going out to a pub one night and getting the sense that something was very wrong. They managed to call for a ride and leave the bar about a half an hour before a huge fight broke out. They laughed about their close call. Then they noticed the look on my face. I was shocked. At first I think they thought I was shocked because they had been out drinking. I wasn't, of course, not in the least. Good on them. A night out in the pub is, in many ways here, the epitome of inclusive community living.

I asked them seriously if I could change the tone of the conversation and ask a whole lot of questions. They looked at each other then me and said, 'Sure.' Then I set about asking them how they knew that there was something dangerous going on. What was there about the place, the people in the place, the atmosphere? When did they make the decision to call for a ride? They thoughtfully answered the questions, looking at one another to give assistance.

One of the fellows talked about the sense and sound of the place. The other fellow talked about how the people in the bar were changing, their body language, their faces hardening. Together they put their impressions together and made the decision to get out of there. And they did. They got out of there, missing the brawl, missing the police being called. They left safe and sound.

What struck me as remarkable here was that these two men had clearly been taught some significant safety skills. They were very, very, sophisticated in their ability to read a room and to read people in the room.

This is exactly what needs to be done for people with disabilities to live well and safely in the environment. They defied the 'they are so trusting' stereotype - instead of trusting others, though, they trusted themselves and each other. These are the kinds of skills that ALL ADULTS need, but as people with disabilities are seldom seen as adults they are seldom taught adult skills.

When my inquisition was over, we went back to our conversation, but not before I told them how impressed I was with their skills and with their ability to stay and keep safe. They smiled, not really understanding why I was making such a big deal out of it. Odd how people who have skills never seem to think that those skills are exceptional.

I'm impressed, again, writing this. Are you?

Tuesday, November 13, 2012

He Was MAD

I didn't hear what happened.

I just saw the reaction.

I wouldn't have seen the resemblance at first. He was a teen, maybe 16, maybe 17, impossibly thin. He was attempting to grow some facial hair but was only sporadically, and unfortunately, successful. She was old enough to be his mother, convenient as she was, and where he was tall, she was not, where he was was made of straight lines she was made of curves. It was only later, when we were having a cup of tea and they were having a bite of lunch at a table just down from us, that their relationship was evident in how they smiled.

But.

The reaction.

We were just coming around the corner as the noise burst out. The young man, flustered and furious, as taking off on someone who had said something to his mother. She, too, looked flustered but also embarrassed by her son's anger. She kept leaping in to his monologue directed at a shocked passerby, asking him to calm down. "I will not," he said, "I know how that kind of thing hurts you."

All I could get out of what he said to the woman, mortified by his abrupt speech and clear anger, was that she had either done something or said something that in his mind diminished his mother. "This woman RAISED me and my sister!!" he raged. "Don't treat her as if she is something less than you. Just because she uses a wheelchair doesn't make it OK for you to ..."

At this point the woman put out her hand in a motion meant to say, "I'm sorry."

"You damn well better apologise to her. She's a damn sight harder worker and stronger person than most in here."

It was over by the time we were passing them. I heard him say, "I just don't know how you put up with it all the time. Jeesuz ... I'm glad it's you in that wheelchair cause if it was me, I'd be in jail after a couple of weeks." She laughed. The tension eased.

Over lunch they looked very much like mother and son. But they looked like more than that. They looked like really, really, really good friends.

Friday, November 09, 2012

Ideas That Stick

I think there comes a point in time, don't you, where your idea of a person becomes fixed. And from that moment on the person will be thought of, remembered and seen only in relation to that single moment. Oh, that moment, that idea, is made up of the hundreds of thousands of moments that led up to it. But once it is fixed. It is very difficult to get unstuck.

I sometimes run into people from my long ago past. It's rare, but I do. I find sometimes, when in conversation, that I find it hard to be heard 'now' instead of being heard 'then.' Even though it is clearly 'now' and our relationship was clearly 'then'. My words are taken and forced to fit into the idea of Dave that was formed at some point in the past. It's like I want them to understand that past and present are as different as suggestion and declaration.

Oddly I thought of all this while driving down to Plymouth when we first arrived in England. I thought of it again driving through Wales. And even again while driving through the Peak District in Yorkshire. Everywhere I looked I was seeing astonishing beauty. Really. Astonishing. Beauty. But in the cars that flew around us, eyes of drivers seeing only destination, I wondered at the tragedy. I wondered when the stopped seeing what was a round them. I wonder if they too, at a certain time in their relationship with the landscape, they got an idea of it - and then never needed to see it again. Noticing not the changes in season, the changes in the colour and shape of the land. Seeing only what was there once, now in the present in a distracted sort of way.

This got me thinking of a man with Down Syndrome I met a couple weeks before leaving. He was a really quite remarkable man. A man of accomplishment, a man of humour, a man with a lusty temperament. But when we met, he and I, with his parents, to discuss something of some serous importance, it was suddenly like they couldn't see him, now, they only saw him, then. At some point in the past their idea of him got fixed. Stuck. And now no matter what he said they kept interpreting his words into their idea of him in the past. They even mentioned this! The notions he'd had. The dreams he had for himself as a child. He tried to hold his accomplishments, real accomplishments up for them to see. But they saw them, not as accomplishments but as toys he'd played with and managed to not break. It was so hard.

I saw Joe the other day. Not Joe of then. Not the idea of Joe. But Joe. He was locking the door of the Dairy and we were about to head to Shrewsbury. And I saw him again. I have worked hard, and I believe that Joe has too, to have my 'idea' of Joe become constantly loose, constantly unstuck, he his to interesting a man to simply end up as scenery unseen. I don't want to be that to him.

It must be hard for parents of kids with disabilities who live in a world where the idea of disability is stuck. Where people walk by me in a mall and see, not me, not even a version of me, but, instead, their version of what disability is and what it means. We all live in that world. A world with the idea of disability stuck somewhere between tragedy and pity. I believe this is why newly disabled people struggle so much with the enormity of change - not the change from walking to rolling but the change in setting. I AM STILL THE SAME PERSON ... one might scream but - while you may be just that, you are now a different idea. The idea is stuck. You are now the tree they drive past not seeing.

I wanted in that meeting for them, the mom and dad, to see him now. The NOW is so incredible. I don't know what the then was, I don't know what the moment was when their idea of their son got stuck. I don't know when they stopped seeing the scenery. But I hope, one day, like a day when the clouds part and people who've driven the same way for years say, 'My gosh, its so beautiful,' and realise again where they are and the beauty of their surroundings. I hope that one day, the clouds will part in their minds and they can see their son anew, afresh, and set a new, a brighter, and more hopeful, idea of him in their hearts.

Thursday, November 08, 2012

Help Us Find The Pilot's Light

I don't know where we were. I can tell you where we were coming from and where we were going and where we ended up. But I don't know where we were. And I really want to know. I'm hoping some of my readers from the UK can help out.

We were driving, using a GPS, from Liverpool to Carrog in Wales. We decided to stop and do some shopping so we'd have groceries to make supper on arrival. I pushed the buttons and Ted (our GPS) guided us to a Morrisons that was relatively far afield from the road we were on, maybe 5 or 6 miles. We ended up in a small town with a big, but not huge, Morrisons store. We quickly gathered what we needed and while Joe was paying, I headed over to the toilets.

Just outside the toilets were an elderly man and woman sitting beside a table selling a variety of products with the Remembrance Poppy. He was wearing his uniform and sitting with an only slightly relaxed military bearing. I had purchased one before but had lost it and I wanted to get a laminated pin to put on my shirt collar. We chatted and I told them that my father had fought, with the Canadians army, in the Second World War. My dad had been wounded in Italy and had come to convalesce in England. The old fellow, with his wife joining in animatedly, told me that there was a graveyard near by where Canadian pilots had been buried and that there was a memorial there to their lives and courage.

We wandered to other topics and he brought up my wheelchair saying, "What marvellous things those." I glanced at him curiously, not hearing this often from those without disabilities, he continued to tell me that many of the men he fought with used a wheelchair either while recovering, or for the rest of their lives. "Whoever invented that chair," he said, "gave those boys their lives back. It didn't seem it at the time to them, but it certainly did over the years." I spoke about accessibility as a right for all, he said, firmly, that any soldier that comes home from war should have access to every part of his country. "You risk your life for your land, you shouldn't lose an inch of soil." A big white handkerchief came up to his eyes, it came away damp.

He asked me about my dad and I told him that my did didn't tell a lot of stories about the war, that he preferred not to talk about it. "The more you've seen the less you say," the old man said. I nodded. His wife looked at him, lovingly and in an instant I knew he had just told her something - the source of his silence. When Joe arrived they told us again about the Canadian cemetery and suggested that maybe we'd want to visit.

Well.

We do.

We'd like to go on Remembrance Day.

But I've spent hours trying to find it. And can't. I've found another in Wales at St. Margaret's Church more up towards the coast, but I've not found that one.

It would help if I knew where that Morrisons was ... I am pausing as Joe is examining our atlas trying to find the name of the town we were in ... and here's a possibility Soughton.

So can anyone help us? I will go back to the computer and start searching again.

Joe and I always mark Remembrance Day. We'd like to do it by bringing a bit of Canadian thanks to men who lie far from home and family.

Wednesday, November 07, 2012

Marmalade

(photo description: portrait of three men with Down Syndrome, Paul and Stephen sitting and Ioan standing.)

While weekending at the Mill, we had three young fellows drop by. They brought a Welsh cake to eat, we made Canadian Hot Chocolate. It was simply a nice visit and a very social time of laughter and sharing. At one point Ioan asked Joe and I how we liked our time at the Mill. I started talking about the accessibility of the room and demonstrated my ability to get around the kitchen and dining room. Ioan looked a bit disappointed with my answer so he asked again, "No, how does it feel to be here?"

Now that is a much different question.

I said I needed to think a bit about that answer. I asked him how it felt to him.

He paused, thought and said. "It feels .. safe."

The others agreed.

"It's good to have somewhere you can come and just be safe."

Like Stephen, Paul and Ioan had attended the bullying workshop that had been offered a few days before. Like Stephen they talked about bullying past, and bullying present. It was nice to have this haven away from the world. It was nice to just be able to be yourself without fear of harm or hurt.

I told Ioan that he was right, I did feel safe there. I felt that when I came there I was invited to simply 'be' and that there was room to be different.

We then all spoke a lot about difference and how intolerant people could be.

But, as if we all agreed that we didn't want to dwell on anything more than how it felt to be here, now. So we chatted about Canadian Hot Chocolate and Welsh cakes. We debated the difference between Marks and Spencer Jam and any other kind of jam. Those of us who preferred Marmalade abstained from the heated discussion and simply sipped on our drinks.

It's wonderful how free people laugh when people feel free.

Tuesday, November 06, 2012

November Issue Released

Service, Support and Success, Issue Twelve on Boundaries are out. If you did not receive it, email me at dhingsburger@vitacls.org ... comments left here or notifications sent to my personal email will not result in a copy sent to you - sorry.

Today's issue follows.

Over To You Rachel

Today, because I am outraged by what I read, I'm going to pass the blogging baton over to Rachel Cohen-Rottenburg and her story about Jenny Hatch - these kinds of stories frighten me. The power that others have. Oh. My. God.

Monday, November 05, 2012

A Gift Given

(photo description: Joe, wearing a grey sweater, and Stephen, wearing a blue jumper and a gray vest, sitting together at a table looking at a white piece of paper.)

Stephen knocked on the door, just a little after we finished breakfast, and we welcomed him into our suite at Carrog Mill. Stephen had participated a few days before in a workshop on dealing with bullying and teasing. In that workshop we taught the group Ruby's song, which was a song that I wrote as a young boy to sing myself some comfort. I'd only shared it recently when Ruby had started school and was experiencing being bullied. We'd put it on YouTube for her and discovered, quickly, how public that would be. We had intended it only to be seen by Ruby. Here's that clip .. (words to the song are in the text that follows)


The whole group loved the song and almost all of them got up to sing it. Stephen left after having asked us to write the words down for him. He was staying the weekend at the Mill and had come over to ask to have us practise singing the song with him. We were pleased and proud to do so. He asked about Ruby and having been bullied, he asked about my experiences as a child. Listening carefully to the answers quietly and then shared his own story.

We already knew a bit about Stephen, he's a wonderfully funny man, with a devastating sense of humour. He'd told us about his Sunday's acting as assisting the Vicar at the altar or as a side server every week in the Church of Wales. He told us about his work at a restaurant. His time spent helping out his favourite charity. His life - which he describes as a full and happy one ... but ... for his entire life - 47 years - he has experienced bullying and teasing.

"It Gets Better" .. rings hollow in Stephen's ear. He knows as a man with Down Syndrome, a visible disability, that it doesn't get better, in fact, it doesn't stop. He describes going out for walks, which he loves to do. He had travelled, himself alone, from where he lives in the city to the small village of Corwen to be there for the weekend and there to learn about bullying and teasing. He loved the workshop. He loved the idea that he could, like I did, find a source of comfort within. Because nothing else worked. He's told people. He's changed his route, trying to walk somewhere where bullies wouldn't invade his time.

They are everywhere.

He got up and showed us how they mock him. Holding his arm as if he had a physical disability, most probably cerebral palsy, and telling us how they walk behind him, mocking him, calling him 'Spaz.' He hates it. He hates the fact that their actions, their words, have taken root in him. The song, the workshop, mattered deeply to him. He sat with Joe, who has a wonderful singing voice, and the two of them sang the words to the song over and over and over again:

I'm OK with being me
There's no one I'd rather be
I've a peace within my heart
That your words can't break apart
I don't care what you say
You can't wreck my lovely day.

I can hear their two voices, entwined, singing as I type these words. I do not need the photograph to remember the two of them, intently, sitting together and singing. I could almost see the words enter into Stephen's memory. He wanted to remember. As they sang I thought of the little boy that I was when I first made up this simple rhyme - a boy who could never have imagined that one day he's be sitting watching another learn the words that he sung thousands of times to himself.

We visited with Stephen a number of other times over the weekend. We saw a remarkable strength in him. The strength to describe his life as full and happy, his parents and family as loving, his work fulfilling ... the strength to draw strength from his purpose - not to fall prey to the intention of bullies to knock down what he so carefully built. A life 47 years in the making, a life that cannot be destroyed no matter how often words strike at the foundation built.

Stephen went into town with some of the others, coming back and knocking on our door. In his hands he had small package. On a tag attached was written, "To Ruby." He and the others wanted us to take a gift back to the little girl who had been bullied and tell her that it came from those who wanted her to know, that it will either get better or she will get stronger.

That gift will be the first thing we deliver when we get home.

Sunday, November 04, 2012

Canadian Blog Awards: the Finals!!!

 


Well thanks to your support, I've made it to the finals. I need to ask you one more time to go and vote. I do so appreciate that this takes some time and effort. The categories I am nominated it are:

best personal blog

best health blog

Belinda of Whatever He Says also made it to the finals in her category:

best religion or philosophy blog

You vote by clicking here or if that doesn't work follow along from here.

Today's post follows tomorrow's will appear ... tomorrow.

Carrog Mill

Right now, this exact moment, Joe is taking luggage downstairs as we prepare to go to Carrog Mill Cottages where we will be for the next several nights. We've been in nice hotels and we've only had a few blips along the way ... for example, who the hell thinks that a toilet that hangs off the wall is accessible? ... but that aside, it's been a smooth trip accommodations wise ... now, though, we're going to our favourite place to stay in the world. The cottage is wonderfully accessible ... in fact, it's more than accessible it's freeing.

When we knew we were coming back we hoped we'd be at the cottages again, and sure enough, we're going to be there - twice. I'm not sure what the Ling Trust was thinking about when they decided to embark on this venture, but I'm glad they did. It's accessibility as designed by people who get disability. That's a very different thing and results in a very different feel.

There's a difference between 'adapted for' and 'planned for' that is sometimes hard to explain. There can be a tacked on, did it cause the law made us, there now you satisfied, sense to 'adaption'. Not always, but there can be. When something is planned for it's like the process involves stopping to think what someone would like, go beyond the basics, moving towards the idea of freedom not accessibility. I am not doing well with words here because I don't know how to really describe it.

Because it's so rare.

I am thankful for adaptions, don't get me wrong. I'm disabled I know I'm supposed to be grateful.

But when someone does something intentionally, it doesn't feel like they want gratitude, it feels like they want you to simply be pleased.

So, we're going.

And I'm excited.

Many of these posts will come in a jumbled order. I know that the Internet isn't readily available there - or it wasn't last time. So I'm writing ahead, several posts in a day, so that they can be scheduled to post even if I'm not at a computer to push the right buttons. So, I'll see you the other side of Wales.

Saturday, November 03, 2012

Hear Hear Jack Carroll

Suddenly I was hearing a young voice, on television, talking about disability. He was seated with his mom, bursting with pride as she listened to him talk, and relating his desire to make people laugh and get people comfortable with the idea of disability. He was mature and well spoken. I stopped what I was doing to listen to the fourteen year old boy, who's name turned out to be Jack Carroll. The reason he was on the show was that he was one of the "Pride of Britain" Teen Award Winners. He stated plainly that he was surprised to have won the award but that he did want to use comedy as a means of getting people talking about disability in a different kind of way. He seemed really grounded, very funny, and someone who wants to make change. Yet, after all this, the interviewer turns to Jack's mom and uses the words Tragic and Tragedy to the mix. It was as if she wanted to amp up the discussion to make Jack something different - a freakish tragic accident that is doing well in spite of his suffering.

Suffering.

There is another world constantly associated with this story. Look his name up and you will see him described almost constantly as suffering from Cerebral Palsy or as a Cerebral Palsy sufferer. References will be made to his wheelchair, his difficulty with movement, his need or reliance on a mobility device. Suffering and tragic. Seriously.

Jack Carroll in the interview I heard, and in the interviews I subsequently watched, was funny and witty but he was also careful and conscious of his language. He sat in interviews listening to his birth as a tragedy and his life as full of suffering. He maintained a grace that was remarkable, he refused to answer any questions in kind.

I'm wondering what would happen if interviewers actually LISTENED to the answers of those they were talking to. It was like they simply couldn't hear what he was saying because their prejudice and their disphobic views on disability were so much louder than the quiet sensible words of a young boy who wants disability discussed.

This could have been the realization of his dream. National Television. National Papers. But instead, he found Tragedy and Suffering discussed. But not disability.

Jack Carroll, we will likely never meet, you will likely never make it over her to my corner of the blogosphere. But he's one disabled guy who heard your interview, saw what you were trying to do. So if you listen very carefully, you might hear the disability community applauding your achievement an acknowledging with you that it was a tragedy that you had to suffer fools.

Friday, November 02, 2012

That Would be Two Hundred and ...

The hotel I am staying in in Liverpool was built before Canada existed as a country. How odd is that? It's the Heywood House Hotel which was first constructed as a bank in 1799. You read that right, seventeen ninety-nine. And guess what? I'm staying in a lovely accessible room. With a big walk in shower and a toilet that's usable ... and ... we're managing fine. There are tight squeezes with the wheelchair, but only tight squeezes.

This was built over two hundred years ago. I tried doing the math in my head but I'm in social services ... I can count behaviour, I can graph tantrums, but I can't do fancy calculations without an assistive device. So, here is this old, old, old, building, that has been made accessible. Which means that you can make these building accessible. Which means that all that moaning and groaning about structural integrity is well, simply put, bullshit.

Even the receptionist was accessible. When I asked where parking was, it's blocks away, I panicked and explained, this was on the phone trying to get directions because even our GPS was lost, that I was a wheelchair user. She asked if I had a blue badge. I said I did. She said then I could park right outside the hotel in the street, they'd talked to the parking people about this so, no worries.

 I'm in my wheelchair, in my room, just having used the washroom in a hotel room that is in a building that should, itself, draw a pension. There are a couple small problems. The mirror is too high for someone sitting in a wheelchair to use to shave. The desk should be placed on the other side of the bed because the space to get to it in a wheelchair is too small.

I mentioned these to the clerk in the morning, and I did so casually as they had been so nice to deal with. She took the information in, said it was good to get feedback and that she'd pass it along. By the time we got home from work there was a mirror in the bathroom that was workable. Sheesh!

So there, accessibility made, accessibility intended, accessibility that calls the lie out to, well, liars. Just say it, 'It's doable, we just don't want to.'

We slept well in a bed in a room in a building that when converted to accessibility also converted to welcome, that's how it's supposed to work.

Thursday, November 01, 2012

Holocaust Education Week Begins

I remember seeing a pink triangle for the first time. It was worn on the lapel of a young man on a streetcar in Toronto. I had just moved to the city. I was looking for a place of refuge. As a young gay man who grew up in very small towns, I wanted to bury myself in the anonymity of the big city. I wanted to be able to live, hidden, undetected. Joe and I went to bars in basements and always looked carefully and warily when heading out to go home. We didn't think about the 'gay community' as such in those days. In fact, in those days, we were still homosexuals, poofs and faggots.

The pick triangle on the shoulder of a stranger led to questions that taught me about history, about the incredible power of hatred, about the need for a community - not to hide in, but to fight with. In truth, I was also angered. Angered by the fact that I never knew. I'd never been told. No one ever, in all those years spent at school, reading history books that were as dusty as they deserved to be, mentioned the fact that the Holocaust, as big and bad as I understood it to be, was bigger and badder than people wanted to mention. Speaking about crimes against gay people would mean mentioning gay people, it was as if we were inconvenient to the historical marketing of the past.

Later, much later, I would learn about the mass slaughter of people with disabilities. I would learn about how doctors and scientists experimented on ways of mass murder with the lives of people with disabilities. I would learn about blue check marks and red 'x's and how many of each meant life, how many of each meant death. I would read about how doctors worked hand in hand, complicit in the deaths of those they said they served. I would learn about this and rage at the fact that I did not know. I had not been told.

As a gay man. as a disabled man, I wanted to somehow ensure that others knew, that the silence be broken. I wanted, in my own small, and very greedy way, to 'own' part of the Holocaust. To be able to speak of it with the horror of someone who belonged to a group oft targeted, oft victimised, who's face is almost always the first slapped.

But I was younger then.

And the Holocaust meant something different to me.

I was not a popular child. I never felt 'in' or, oddly, enough 'out' to be 'in'. I grabbed moments of social inclusion and acceptance with the fervour of the desperate. I remember a moment, when one of the few lower down the ladder than me, need me. Needed my solidarity as one of the 'less thans'. I had a choice to make. I could join the rabble and revel in the moment of inclusion, I could join, I was given entry. I could reject that offer, knowing as I did, knowing for certain, that it was temporary. I could reject that offer because it was wrong to do what they did. I had been in the position that she was in now. I knew. I fully knew. And I made a choice. The wrong one. I joined in with the rabble. I cast the first stone. I did all that I knew as wrong.

There are other moments. Moments when I not only backed down but joined in - knowing that it was wrong but wanting the approval, wanting the acceptance, wanting to feel, even momentarily, less alone. I remember these moments. I carry them with me. Or, rather, they leap on my shoulders and travel with me. Even if I crept out under the cover of darkness, they would find their way back to me. They are part of my history. They are the reminders.

The reminders.

That I need to think about the Holocaust, I need to learn about the Holocaust. It's easy to learn what others did. It's more important to learn about what I am capable of ... the weakness that is in me ... the fear of rejection, the need for acceptance and the cowardice that comes from a wish for approval. It's easy to claim victim status and refuse to notice. Refuse to notice that history doesn't forgive what's done in the present. Refuse to notice that decisions now will become decisions then. Refuse to notice that I have the power to hurt - and that sometimes, sometimes, Oh God, I use it.

Holocaust Education Week, for me, is about looking back but it's also about looking in. It's about understanding the capacity we each have ... to bully ... to hurt ... to victimise ... others. Other others.

I am other.

Yes, that's true, and as 'other' I have history.

But there are other others and they have history too ... but with me.