Service, Support and Success: October Issue

The new issue of Service, Support and Success: the direct care professional newsletter has been sent out via email. We do not have a mailing list programme so it's pretty antiquated. If you did not get it, even if you've subscribed before, let me know at dhingsburger@vitacls.org and I'll try again. The official mailing on the Ontario mailing lists will be done tomorrow. Colleen, a frequent comment maker here on Rolling Around in My Head is the author of this months issue. Congratulations to her!

Today's post follows.

Tomorrow's is yet to post.

A Teacher Teaches

I received an email yesterday and waited til this morning hoping for permission. It's from a teacher who was responding to my blog post a few days ago about the behaviour of the students and the teacher in the gallery that Joe and I were visiting. The letter has only been edited in so far as identifying information has been taken out. I am not going to comment at the end, I'm just going to reprint the letter. I was moved and excited by what this teacher did. Let me know what you think of her response to Both and Either

Dear Mr. Hingsburger,

I read your blog quite regularly and enjoy the opportunity it give me to be challenged. I found Rolling Around In My Head when a parent of one of the special needs kids in my classroom suggested I read it. At the time I think she was a much bigger fan of yours than mine! Your blog Both and Either about the inaction of the teachers in the gallery at the behavior of their students struck me pretty hard. After thinking about it for awhile and after finding the Creative Commons agreement on the sidebar of your blog, I decided I wanted to use that particular piece as an discussion exercise in my classroom.

I ran out the blog and made it look like a quiz with your article on the top and then several questions on the bottom. The questions were: Do you think that staring at someone or laughing at someone is bullying? Why do you think these students left the tour to stare that this man? The man says that these students terrorized him, do you think what the students did deserves to be categorized as a form of social terrorism? What should the teachers have done, if anything?

Usually these kinds of discussion in my classroom are tepid at best. All my students are just in their early teen years and struggle mostly to be coolly indifferent to their world. Well, this one caught their attention. I want to tell you what happened. I'm sorry that this letter is so long.

Many of the students were really outraged at the term terrorism and suggested what happened wasn't even bullying. The man in the story wasn't hit or struck in any way. I discovered that they all had a very narrow definition about bullying. I realized that some of the anger that was being expressed came because if they accepted your terms, they would have to redefine themselves as bullies. Beyond that the word "terrorist" here in the United States is a strong word and they were furious that it was used towards a student. In a way they were suggesting that you were a bully for using that word!

What I noticed though, and you are right I must admit to being willfully blind to what goes on in front of me, was that the unpopular kids were silent during this discussion. They looked actually frightened. I had noticed that most of them spend a lot of time trying not to be seen or noticed by the more popular students and they seemed afraid that the kids would take their anger at you for writing this and then turn it on them.

I have two special needs students in my classroom both who were paying a lot of attention to the discussion. They didn't contribute to the discussion but they were in their own way quite involved. When we got near the end talking about what should have been done. One of my students, who had Down Syndrome, put her hand up. I was pleased because the discussion had involved only those kids who would have done the kinds of things that were described in your article. The other kids, less popular or more different, had listened but not said anything. The room was silent went I called on her for her opinion.

"They should have done it and the teacher should have stopped it," her answer was short and to the point. One of the students most active in the discussion challenged her saying, "They just stared at him, what's the big deal." Before I could say anything, the response came, "It is a big deal and you know it. I get stared at all the time. It hurts."

The discussion changed it's tone and now more kids joined in. At one point I just sat back and let what was happening happen. It has been a long time since I felt the power of being a teacher. I believe that what happened will change my students. Some for a short while, but some for the rest of their lives.

I wanted you to know that I thought what you wrote was brave. I also wanted you to know that you moved me to action. Thank you so much for the courage you show in telling the truth. I am a better more informed teacher. I am going to take what I did to our next staff meeting and do the same exercise with the teachers as with the students. I'll let you know what happens.

Simply Floored

We sat in the car for almost ten hours, crossing state border after state border. We had an audio book which kept us entertained and distracted for a fair bit of time. I had several work calls and even more emails, all of which kept me busy for a good portion of the time. But, being read a book and being called on for work aside, ten hours is still a very long drive.

We are staying for the weekend at a hotel directly across from a Whole Foods Market with a wonderful buffet of vegetarian items. It was raining, just slightly, when we pulled in so we braved it and rushed into the store. First stop, as would be obvious, was the washroom. Then, oh and then ...

THE FLOOR!!!

It was a floor that deserved ... I don't know ... poetry.

It was a floor that deserved ... I don't know ... flowers and candy.

It was a floor that deserved ... I don't know ... L<3ve ve--="ve--">

I never understood floors, until I became a wheelchair user. I didn't notice the plush of a carpet, the difference between tile and wood, painted or bare concrete. I do now. Some floors are just made to roll on. Some floors seem to make me stronger, make my push firmer, allow my turns to pivot professionally. Some floors are made for wheelchairs.

This was one of those floors.

We went from one side of the store to another. We went from produce, to dairy, to kitchenwares, to grocery, to the frozen aisle. Everywhere I turned, I turned with ease. The floor invited me to explore.

After hours of sitting, driving, listening, answering emails, I got a floor completely worth the trip. Sometimes having a disability means experiencing things that others simply don't notice ...

... like floors that deserve ... I don't know ... a blog post.

Seriously? SERIOUSLY!!

They didn't realize their window was down!

Joe and I had parked in the disabled parking spot at a big grocery store. We were about to check into the hotel and wanted to pick up some pop, some beer, and some other sundry things for the room. We were lucky because there were four blue badge spots, clustered together, two on each side, at the end of a row right near the front door of the store. All were taken except for the one directly in front of us, we could drive in. We parked.

Joe pulled the chair out of the back seat, I affixed the footrests, and while Joe was arranging things in the back seat I called to him, "You want me to come round behind the car or go ahead between these two cars here." He looked  and saw that there was plenty of space between the cars in front of us and going between them was an easier and shorter trip to the store, "Go on ahead," he called.

I did.

I rolled up between the two cars and then noticed that it was a fair rise on the turn towards the store, I would need Joe's help to hold me so I didn't roll back. I decided to stop and wait. I didn't realize that there were people in the car beside me on my right. I just thought it was parked and the people would have been in shopping. Movement caught my eye though, so I glanced over.

There were two people in the car, both much younger than I, they were sitting motionless, staring straight ahead. "Don't look, don't look, don't look," whispered one, "Maybe he won't see us."

I was confused about who they were talking about. I noticed then someone coming out of the store, running towards that car. I then noticed that there was no blue badge anywhere to be seen.

The other fellow got in, the driver said, "Don't look over, he might not see us."

I thought this all outrageously funny and must have sat there grinning. I said, "I can hear you."

"Shit, the window's down!"

Without looking over, the window slowly rolled up, then the car started and drove away.

You can't make this shit up.

Falling Into A Fresh Start

Fall is my favourite time of the year. So it was awesome to drive west from Toronto and then continue into the wilds of Michigan. The colour is just coming into the trees and Joe and I pointed out first this tree, then that burst of colour. It's early in the fall, trees sometimes are just beginning to blush at the realisation that they will soon stand stark naked for all the world to see. I love too the scent of fall. It's different than any time of the year.

Fall is the season of new beginnings. New notebooks, empty with promise, new pens - unchewed - wait to rush words over the page. For me the idea of new year is more powerfully felt in September than at any other time of the month. This, in my heart, is the yearly fresh start.

I remember being in my wheelchair that first year. Long before got the power wheelchair, Joe and I were cautious about how far we could go, with me as first gear and him as second gear, in the manual chair. As we drove through on our trip yesterday, I saw the colours and remembered us getting out of the car and in an instant our 'inner children' burst forth and Joe pushed me pell mell through a big pile of leaves. We stopped with Joe panting from the run with leaves scattered and floating down on just, gently thanking us for one more ride.

I think that moment might have been the moment where I saw not only fall, but my use of the wheelchair as simply another fresh start.

Both and Either

I know both who I am and who I appear to be. I know that I am a person of worth and value - as I know all people to be people of worth and value. I know, too, that I am a person often seen as being of little worth and no value because of my weight and my disability - both and either. I attract attention. Every time I go out I know I will face either social intrusion or social violence. From staring and gawking to pointing, laughing and name calling, I experience them as a daily phenomenon. Daily. I'm not sure that those who fit in ever really understand or believe the constant experience of social discrimination of those of us who do not.

Recently I went to a gallery, Joe and I both regularly trek off to these kind of public spaces. We like the experience that looking at art gives - it's such an intimate connection between viewer and artist. It may be the function of art and literature to make it possible to see what someone else sees, or feel what someone else feels, enter into a moment experienced by another. In an odd kind of way its a bit of sacred communing. But being in a public space of any kind comes with certain dangers. This day we were at the gallery when it was being toured by several classes of students, maybe Grade 4 or 5. They came through, in small groups, accompanied by their teachers.

I tense up when around large groups of children. I immediately lose any sense of safety. The world's most incredible painting, the world's rarest artifact, the world's most unique thing cannot draw children in as much as the opportunity they then have to mock and make fun of me, my weight, my wheelchair, my very being. So, Joe and I experienced looking at a painting while small groups of children broke away from their group and came to terrorize me.

I use the word 'terrorize' carefully.

It may be seen by some, anyone who hasn't had the experience particularly, to be too strong of a word. It is not. Sitting looking at a painting while three girls stand barely four feet away, covering their mouths and laughing while their eyes, sparkling bright in the light, roam over every inch of my difference is a kind of intrusion that so difficult to bear that I begin to breathe like one in deep pain. Having two boys stand and puff out their cheeks and ape what they think being fat looks like might strike some as funny. It isn't.

It was hard to see the pictures.

It was hard to experience the connection.

But I'm not writing about the children here. They are, after all, children. I do not excuse them their behaviour because of that - they know what they are doing and they know that it is wrong. What they may lack, though, it that thing that governs behaviour. That is, after all, why we have teachers, and chaperones, and minders. What disturbed me was that in this public space these children engaged in very public acts of social violence against another person and not one teacher, not one, intervened. It would have been impossible for the teachers not to see what was happening. Impossible for them not to notice. The teachers there, and there were several, had groups of no more than ten or twelve children. To have your group suddenly reduce by a quarter is, if anything, noticeable.

We live in an era where people are talking about bullying and teasing. Talking. About. It. Schools trumpet that they have 'zero tolerance' for bullying. They say this as if it's a new concept. Schools have always said that they discourage bullying, there has never been a time were schools proudly proclaimed to be pro-bullying. They just keep changing what they call the claim.

It is easy to have 'zero tolerance' if you also have 'zero acknowledgement.'

I remember seeing a young boy, referred for problem behaviour, being teased relentlessly by kids at recess. His disability made him the target of choice. Teachers and Teachers Assistants stood on the playground and simply didn't see what was happening. Not seeing meant not intervening. It's easier that way. I spoke with the teachers on duty that day and all of them claimed to have been oblivious to the name calling, the brutal behaviour of the students. I had observed this for only a few minutes and was headed out to the playground to do something, I didn't know what, when the bell rang and the torture was over. The teachers, who I spoke to as they came in, saw me as more problematic, with my concerns and criticisms, than they did the behaviour of the children. One uttered the tired refrain, "They don't mean anything by it."

I simply don't understand why a teacher, or any adult, would be so negligent in their duty as to allow children to engage in hurtful behaviour without comment or without action. It's like they believe that their job is to keep children safe from traffic but don't care that the children traffic in hate.

I know, cognitively, that I am not lessened by those unlessoned in kindness or tolerance. But I admit to feeling so. I know, cognitively, that I have a right to public spaces. But I admit to feeling unwelcome. I know, cognitively, that I am a person of worth and value. But I admit that's hard to feel sometimes. Especially when the one's who are supposed to know better, don't.

Update and Announcement

Very brief update.

Survived yesterday.

Not feeling well today.

Back tomorrow.

A very brief announcement.

Rolling Around in My Head will be hosting October's Disability Blog Carnival - the subject is 'Birthdays, Anniversaries or other days of Remembering or Celebration.' The Carnival will be held on October 23rd. I will be posting a post about this soon and you will be able to leave your submissions there.

Get Thee Behind Me Future

Time is a funny thing. The future becomes the present faster than ever expected and the past hangs around way too long. Because of the past, I've been afraid of something coming in the future, and that's OK because things can safely be tucked away up there in the future. But, someone hit the accelerator and the future is here. It's today. It's PRESENT.

At about two yesterday afternoon, I started figuring.

Figuring a way to move fear back up into the future.

Figuring a way to get to the past without going through the present.

Figuring a way to make it all just go away.

Funny how prayer becomes a constant companion at times in one's life. In the last few day's I have prayed so much that I'm sure God is call screening. I looked up the top ten prayers and was shocked to see the list. Shocked. Cause I would have thought that my own prayer, the famous 'I'll do this if you do that' prayer or it's cousin, 'I'll never do this again if you just do this one thing for me' prayer would right up at the top. I figure there's a lot of us who go to the swap meet hoping God shows up, is in a good mood, and hasn't given out all the good dispensations to the other schmucks in line ahead of you.

If you took away the bargaining.

If you took away the whining.

If you took away the obsequiousness.

I figure we, God and I, don't talk as much as I'd like. 

Anyways, prayers or not, figuring or not, it's here - today. And there's no putting it off. I'm simply going to have to endure fear, maybe humiliation, perhaps even pain.

But Tuesday is on the horizon and it can't come fast enough.

Art and Artists

With my post yesterday about making a design with wet wheels on dry pavement came an email from a blog reader named Kristine. She wrote me a letter and sent two photographs. I've asked for and been granted permission to reproduce both the letter and the photos. First the letter: 

Hi Dave,

After reading your blog today, I had to share the attached photos! A couple years ago, I got inspired to do some wheelchair art, and on the last day of school that year, my ESL students (the beginning level) helped me make it happen. They painted and repainted my tires, and I rolled around the canvass. After we were satisfied with the tire designs, they painted the bottoms of their shoes, and walked around the canvass. It was so much fun!!

We managed to get a lot of paint off my tires after ward, but they definitely had some color for a long time. (Which, in my opinion, isn't a bad thing!) I'm still in love with the finished product. The crazy colours and designs somehow look exactly like my kids and I together in the classroom every day. :)

As we were finishing up, a 6th grader in a wheelchair came by, and we invited him in to take a look. His eyes lit up, and he also gasped, "My mom would KILL me if I did that!!" I told him, "So would mine...." :)

Just thought you'd enjoy!

Kristine

Now take a look at the art. Enjoy:

Hallmark vs Watermark

On our way out yesterday we left the building and Joe, who was wrestling the bundle buggy, stopped or organise himself for a moment or two. I went ahead and, like a kid excited by the opportunity, ran the chair through a fairly deep puddle of water and listened, satisfied to the splash. Joe was taking longer than I expected so I turned to see what he was up to. Just as I turned he was on his was again so I kept turning and he joined me as I straightened the chair out. Joe noticed, and pointed out to me, that my wet tires had made a lovely and quite graceful circle on the dry pavement.

We went shopping because this morning we are going to make a great cauldron of soup. The grocery store was a ballet of cooperation. Joe got the turnip, I got the parsnips, he sought the potatoes, I selected the carrots. The bag grew in size as he picked up this and I picked up that. We found some cereal that we thought the kids would like and as we are seeing them on Sunday, in the bag it went. Soon the bundle buggy was full, the bag on the back of my chair could hold no more, so we headed to the checkout counter. The line up was long so I went scooted round to the other side and sat waiting for Joe and watching people in the food court.

The way home was made difficult by the surprising number of people out on the street. Joe with his buggy and me on my buggy made for a lot of negotiation but everyone seemed in good humour. A fellow, drunk to the point of foaming at the corners of his mouth, approached me to tell me how pleased he was to see that I was out and about, I couldn't return the compliment and the red light I was waiting at seemed to stop and stare at our odd interaction. Finally it changed and we were on our way again. Joe reminded me of a fellow wheelchair user who said that a wheelchair was a magnet for social inappropriateness. We laughed.

There is construction on our street so I zipped head on the road, the sidewalk being completely blocked. Joe, pushing the cart, laden with beans and bananas, was a little slower. I had an inspiration. I rushed ahead and parked my chair dead centre in the puddle. I looked at the lay of the land and knew it could be done. I went back and forth slowly in the water making sure that my tires were completely coated with water. Then, I began.

I drove up, made a turn, made another turn, and headed straight back to the puddle. I turned around to see and sure enough I'd traced out a wheelchair heart on the dry pavement. I didn't say a word as Joe approached, but when he saw it his eyes lit up and he said, simply, "A heart!"

Who said romance was dead?

Email

Today's post is dedicated to Winnifred Kempton:

Some times a small thing can be an indicator of something huge, something marvellous. For me, yesterday, it was an email. It was a simple typical email. Like any other office, probably anywhere in the world, emails get sent around for people to throw money in a pot to purchase gifts for people who are celebrating big life events: marriages, baby showers, engagement parties. I am away a bit from the office but want to contribute so I have an envelope with money there so for each one I can participate by donating some money. Well, one of those went around wanting to raise some money for an engagement gift for two people at the office.

***

When my first book on sexuality and developmental disability was printed I was astonished at the reaction and uproar over it's printing and sale. "I Contact: Sexuality and People With Intellectual Disabilities," was a modest little book printed by a small company in Pennsylvania. It received mixed reaction, many loving the simple storytelling way of making points, others thinking the book was vile and that I was a "pornographer." I will never forget the day I opened an envelope to find a letter, blacked with ash, that told me that my book had been burned and that similarly I would burn in hell for sexualizing innocent people with the minds of children. That day was the day I destroyed all of my business cards with my home address on it. I was frightened by the anger and the hate behind the letter.

I remember, too, when I wrote what I believe was the first journal article about supporting people who are LGBT in residential services. I lost contracts for training to agencies who were horrified and who told me that I'd gone "too far."  Further, I remember giving my first talk on the same topic at a conference in Ottawa. I was terrified of the reception and the anger that was inevitable so I asked some friends, all closeted, to come to the talk for moral support - all said they would, none came. I didn't blame them, they were terrified that their attendance would give them away, they lived in fear of firing. I gave the talk. I learned then that most people were moderate but that those that weren't really, really, weren't.

Working in sexuality I heard story after story after story from those who live at the blunt end of other's attitudes. Relationships broken up. Love destroyed. Angry parents forcing agencies to forbid relationship. Disapproving agencies using the spectre of angry parents to hide their own prejudice behind. These were dark times where people with disabilities were punished for even the idea of sexuality. Electric shock. Contingent lemon juice shot in the mouth. Facial screening. Boxing gloves on hands, wrists tied to the side of the bed. All punishers for masturbation. Dark times. Dark times indeed.

Sitting beside Winnifred Kempton I was surprised at how small this woman was. I remembered hearing her name in conjunction with what was always called "the Kempton Slides." Hers was the first in depth, fully explicit sex education curriculum ever created for people with disabilities. I should pause here, there were probably others, brave people creating forbidden materials to give forbidden information to those whose sexuality was forbidden. But Winnifred's curriculum had become well known. Somewhere early in my career I ended up at a table, sitting to her right, chatting with a woman who had faced threats and anger and vitriol simply because she believed in the rights of people with disabilities to have information about their bodies and to be treated as adults. I sat in awe of her and could hardly believe that my journey had given me the opportunity to dine with a revolutionary.

***
Opening an email and reading that someone was gathering some money for an engagement gift is an ordinary thing in an ordinary day. But I stopped, looked at the names of the two engaged. I was sure that they were people with disabilities who worked downstairs in the day programme. I sent an email to confirm that fact. I was right. I realised at that moment that I'd never, ever, been asked to contribute to the gift celebrating the engagement or marriage of someone with a disability in such a casual way. As it would be done for staff, it was simply done for those we serve. No muss. No fanfare. Just an email asking for a couple of bucks to buy a gift to celebrate lives lived.

 That email probably means very little to the young staff who would just pull out a fiver and hand it over. But that email, and its simple, casual nature, indicates something absolutely huge. A small thing. An enormous change.

I never thought I'd see it.

And I have.

Brief Encounter

He shot, too fast, out of the elevator. He saw me, then panicked. With a jerk he shot right, stopped as I backed up, then he almost impaled himself on the water fountain. With the way our two chairs had moved around each other I reached out to him with a joke. "It's almost like wheelchair ballet isn't it?" The response was a big grin.

He opened up immediately.

He was just learning to use the chair.

He said with excitement: I get out on my own now.

He said with pride: I go faster than people who walk.

He said with surprise: It doesn't matter so much that I can't walk any more.

I saw a man with a world newly opened to him. I waved to him as the door of the elevator closed shut. I was going up, he was going somewhere - how right is the world today.

Sounds That Cause Fury (Edit)

I am learning something about words. Something that, as someone who uses a lot of words, didn't know. This fact has been bubbling around just below consciousness for a long time but finally came to light over the controversy over Yunel Escobar a Toronto Blue Jays  baseball player who wrote, in Spanish, "You are a f*ggot" in white on the eyeblack on his face. Until this happened I didn't know that that swatch of black that players put on their faces underneath their eyes was called "eyeblack" and was used to help stop the sun's glare. But the existence of a word for what that was didnt' surprise me, because up until now I thought there was a word for everything that was and anything that isn't now but will be soon will have a word assigned to it. I thought that was kind of how language worked.

But the apology, or really non apology, by Yunel Escobar taught me something else. (I say non-apology because he essentially said it didn't mean anything and he was apologising only because he had to not because what he did had meaning.) In hearing the story and hearing Mr. Escobar say that f*ggot is just a word ... and not only that a word that didn't mean anything ... I realised that this is exactly the argument that people who use words like the 'r' word and other similar words use.

"It doesn't mean anything."

Ah ha! I realised. Here's my problem. I think that words have meanings. But apparently I am wrong. There are words that have no meaning at all! Who knew? What an odd concept a word that's a word but isn't a word at all! So that would mean that Mr. Escobar, when he chose to write those words ON HIS FACE, thought that it would be fun to write a bunch of nonsense syllables as a kind of manly make-up.

In reading about this kerfuffle I did have a laugh out loud moment. Mr. Escobar stated that he had gay friends who weren't offended and mentioned specifically the guy who decorated his house and the guy who cuts his hair. Talk about playing into stereotypes! Talk about not acknowledging power, people employed by those with power are NEVER offended by what their employer does because offence would mean firing or punishment. So I guess 'POWER' and 'PRIVELEGE' and 'STEREOTYPES' are words that have no meaning in Mr. Escobar's vocabulary. With a vocabulary of sounds, not words, I wonder how this guy orders a burger.

In case I was wrong, I did do some research before writing this blog today and I looked up the term "f*ggot" in my dictionary and was surprised that it didn't say: a two syllable nonsense word having no meaning. In fact it stated clearly that it was a word with meaning but also with intent: hurt.

As a gay man I react almost viscerally to that word. It is a word that has the stench of blood attached to it. It's a word that has killed and maimed. Dead teens tie a rope to the word and hang dead dangling from it. It's a word that bruised me in spots still tender from the damage.

Mr. Escobar, I, for one, do not accept your apology. I, for one, call you on your lie. You did what you did with intent. You used a word with the intention of hurt. You refused to apologise for what you did. What you wrote had meaning, what you said after in apology did not.

Here's a word.

"Bigot."

Look it up.

It has meaning.

And to the Toronto Blue Jays. I am deeply ashamed of having the name of my city attached to your team. Deeply. Ashamed.

Oh. Well. What. Can. You. Do?

Typically, I like new hotels. They, typically, get accessibility and, typically, there are fewer worries. Older hotels tend to bend the definition of accessibility to the breaking point. Once at an older hotel in Hull, England, a hotel said it was accessible but when we got there there were several steps up the the front door, the parking was blocks away and our room was on the second floor. When challenged about the accessibility of the room the clerk said simply, "Most of our guests can get there just fine." Oh. Accessible for the majority.

New hotels though, especially those built in the last few years tend to be much more cognisant of the needs of those with atypical needs. And as such we checked into our hotel with a sense of optimism, which was richly rewarded. The hallways are wide, the doors are wide, the room is large, the bathroom beautiful. Awesome.

But.

(You knew there was a 'but' coming didn't you?)

The parking lot, brand new, smelling of paint and empty space, held not a single accessible parking space. Yesterday we were rushing to get me in and up to the lobby as I was busting for 'relief' ... so we didn't look hard, we just took the closest we could find. There was no problem because when we arrived there were few cars there. Today, though, there were more cars so we drove around and looked for the blue badge space and ... couldn't find it at all.

We were sure it had to be there.

I noticed a hotel clerk leaving her shift so I called to her to ask where the accessible parking spaces were. She said, "Oh, there over here." She walked away and came back a couple of seconds and said, "I can't find them, they are always near the elevator." She had just assumed that the spaces would be where the spaces should be. But they weren't there. She suggested we speak to the manager.

We spoke to the manager who was aware there weren't any parking spaces and said, in explanation, "They didn't figure them in when it was done. It was an oversight."

Um. OK.

He looked at me as if he'd answered. It was an oversight. An "Oh, well, what can you do"

I suggested he fix the oversight by having accessible parking bays put in. I knew it could be done, we did it in the parking area of where I work. It took time and effort but it was done. It's really not hard.

I get that people make mistakes.

I don't get that people don't care to fix the mistakes.

Really.

Don't.

Get.

A Drive Through The Country

Today we drove to Our Nation's Capital and decided to pop up Peterborough way and drive Highway 7, through the country, to Ottawa. We both had the 401 and consider it to be one of the world's most boring drives, The Big Apple excepted of course. So, as we had a bit extra time and a bit less pressure, we decided on the country route. As it happened the day was spectacular. We had bright blue skies, brilliant sunshine and there was a hint of colour coming in the trees. Lovely.

The thing that I noticed this time, maybe four or five times on the drive, was the number of houses that had had ramps built on them. One, in particular, was very long and had a gentle slope. It, unlike many, rose from the driveway to the front door and rose maybe three feet. I felt like I could have easily pushed myself up the slope. I wondered, to myself as Joe was basking in the fact that the car had satellite radio and he was streaming classical music into the car, flipping through the classical stations with the ease of a practised hand, what the story was behind each of the ramps.

While I don't know the story of the individuals who live in those houses. I do know the 'back story.' The story of builders who think that people don't change, young couples, don't become parents, don't age, don't have accidents or hospitalisations. Builders who build for people who buy the houses but not the people who live in the houses. People who will never have a child with a disability, people who will never have elderly parents who want, but can't have, the ability to visit, people who will never have friends who use wheelchairs, or walkers, or scooters. Builders who build houses that will one day purposely exclude someone - but who cares ... homes are for real people and there are homes for other people.

As the music swirled around me, the image of that long, long, ramp up to the front door stayed with me. I kind of wanted to meet the person who insisted on entering the front door of the house they lived in. I'd like to know if they sat and watched the builders build what should have been built in the first place - access. I wondered if they insisted on the gentle rise. I wondered if they fought off someone talking about property value when they suggested a long ramp up to the front door. I wondered who they were.

All I know is that they go in the front door of a house that I could visit.

And that's enough reason to get off the freeway and drive through the country.

The F Word (No, Not That One)

Sometimes I just don't know how to think of things. I've just recently learned that a new word is on the horizon and growing in its usage. I'm wondering how many of you are aware of the alternate, slang meaning now attributed to the word frittata. As you will have seen if you clicked on the word, it's now being used as kind of a sly reference to the 'r' word - making it such that someone can be slurred by it without suffering the consequences of using the word it's meant to replace. Part of me senses a bit of victory here, simply in the fact that there must be kind of a growing realisation that the 'r' word is unacceptable. Part of me feels frustrated that people are still wanting to 'hang' a negative connotation on intellectual disability and are desperately trying to figure out how to do it - without getting caught.

So, I don't know what to think or how to think about it.

I will admit if I had heard someone using it I would not have noticed nor cared. I didn't know what it meant and I wouldn't have reacted. Someone, however, just the other day, asked me what I thought of "frittata" and I, for a moment, thought they were talking about eggs. They explained. And waited for me to think and respond. But. I didn't know how.

I, partly, thought that every time someone uses 'frittata' it means they aren't using the 'r' word. That's a good thing.

I, partly, thought that every time someone said it they were thinking the 'r' word. That's not such a good thing.

I, partly, thought that perhaps most people who heard it wouldn't understand the link with the 'r' word. That's a good thing.

I, partly, thought that this demonstrates the deep need some have to pursue bigotry at any cost in any way. That's not such a good thing.

So.

I'm lost.

I'm wondering how you all feel. I'd love it if you weighed in on this one.

L#rdass Thinking

I made an enemy.

And probably did something mean.

I'll let you be the judge.

I got on the bus this morning greeting, as I do, the other occupant who was a very large woman sitting on a four wheeled scooter. The driver chatted with us both while strapping me in. Once on our way my fellow passenger was startled by the movement of the bus and laughed and said, "I should be used the bus by now, sometimes I'm just so ret#rded." I immediately said, "Please don't use words like that, I find hate speech upsetting and I work with people who are very hurt by that word."

Predict what happened next.

She acted like I victimised her!

In all of what she said, including that it didn't mean anything, it's just an expression, she mentioned that she had a 15 year old boy with, and this is a direct quote, "the mind of a six year old." She went on about how she makes sure no one calls him names. She wasn't using the word as a name so it was OK.

I asked her if she spoke like that in front of her boy and she said that she did. Her answer was defiant. She was angry.

I was angry too.

I said, "That's just really lardass thinking."

She said loudly, "What did you say to me?"

I said, "I said, that I thought that it was so lardass that you think that it's OK to use words like that in front of your son."

"Don't you call me names, you are really fat yourself."

"I'm fat but I don't have lardass thinking, thank God."

"I am going to report you for being offensive."

"Why, I'm not calling you a name. I'm just using a word, it doesn't mean anything." My point was made.

She got off the bus, stopping the scooter on her way down the ramp and said, "I really hate you." There was such anger in her voice.

I don't get how people don't get that words hurt. I didn't really mean to upset her to the degree that I did. I just thought that if she heard a hurtful word used in the same way that she used the 'r' word, she might think twice.

It didn't work.

Or maybe it did.

All I can say is that if I see her again on the bus, I'm going to be very, very quiet.

What Were We Thinking?

I received an odd gift in the mail yesterday. It came in a brown envelope with my address written in firm hand in blue ink, there was no return address. I opened it with great curiosity, I have liked getting mail all of my life but in the last few years have had to settle for the thin gruel of bulk mailing and catalogues. Inside the envelope I found a letter and a picture. The letter was from someone I worked with years and years ago, when I was very young, in an institution for people with intellectual disabilities (although those weren't the words used back then) here in Ontario.

Reading I discovered that I was being gifted with a photograph, which I found tucked at the bottom of the envelope, because my old colleague was downsizing. She told me that she was moving from a house to an assisted care apartment, and she had come across a bunch of old photos from all those years ago. One of the pictures she thought would be of interest to me. She was surprised to find this blog and then when she googled me, even more surprised to find where my career path had taken me. So, she tracked down my address and popped the picture in the mail. She wished me well in my career, said that she had confused memories about those days of working in the institution. Believing she was doing good then, wondering if she contributed to a culture of captivity now.

The photograph showed me on the ward laughing with one of the people who lived there. There is brightness in our faces. It looked like simply an ordinary moment between two people. However, when my eyes left the laughter and looked anywhere else in the picture, the desolation and isolation of the drab background is startling. Life. Death. Inclusion. Exclusion. Freedom. Captivity. How could this moment of laughter have happened in this place where even the harshest disinfectant couldn't erase the smell of disrespect.

The fellow in the picture with me wore clothes that didn't quite fit, a shirt too loose, pants too short, socks that no one noticed were mismatched. I have no memory of the moment. I don't know what we were laughing about, but the laughter, and I looked hard to see, looked genuine. I'm glad of that at least.

I did see him again. I lasted in the institution for less than a year. But maybe ten years ago I was teaching a class in eastern Ontario on abuse prevention. I was sitting at the desk getting ready. I wasn't yet a wheelchair user but the ritual I have of going over everything before I started has never changed. He came and stood beside me, quietly, not interrupting. I looked up and saw him. He smiled a 'hello'. It took me several moments to recognise him. He had aged. He wore clothing that he had chosen and that he wore well. When I recognised him, finally, I asked him to sit with me for a moment. He told me of his life, now. I told him of my life since. He was happy.

The picture in my head of that moment stands in stark contrast to the picture that sits by my keyboard now. In both pictures are two people talking. But in the new picture both men are free. In the new picture the background and the foreground fit together well - laughter in a place of laughter.

His journey and mine have been different. He walked as captive to freedom. I walked as captor to apology. Like the woman who sent me the picture, it is hard to know how to think about those days. She and I worked where people worked who wanted to work with people who had disabilities. She said in her letter that sometimes, when she dreams, she doesn't dream pictures, but she dreams of the smell of that place. The smell creeping into everything, her clothes, her skin, her soul. She wakes from those dreams full of panic.

"I came to know that, no matter how hard we tried to make it better, the place just should never have been built. I just hope that all the people who have gone home remember some of us with kindness."

I want to write her back.

And tell her that that too is my fervent wish.

Scissors

I say "Hello" or "Good Morning" to everyone who gets on the bus with me in the morning, or to those who are already on the bus when I get on. I don't say this to alert you to the fact that I am an extraordinarily warm and welcoming person - I'm more shy than welcoming by far. But, I believe in a certain kind of civility and have signed the social contract that asks all of us to behave as if we were part of a community that cares. This makes Joe, who is also a signatory, and I seem very odd to some of the people in the apartment building we live in, some who actively avoid riding in the elevator with us because they hate being in a small room with two people who say "Hello" or "How are you?" We are socially outcast for being socially ept.

But onwards to the story.

I greet people on the bus. Most often people greet me back and we ride in silence. Sometimes people take the greeting as an invitation to talk and we chat a bit. Nothing extraordinary comes of civility other than a continuance of civility but that's enough for me. Some, like my elevator riding fellow cave dwellers, seem to fear that saying hello back would the the first step towards sex, or dinner out, or, god forbid, friendship and look pointedly away. I'm good with that, I've done my duty and I'm equally good at sitting silently looking out the window or playing 'Word Mole' on my phone. But most, smile, or nod, or say hello back and that's the end of that.

But some mornings, others are on the bus or are brought on the bus, people with more significant disabilities who don't communicate in the traditional way. I greet them too. Sometimes I'm greeted back with a look, with a smile or with a little tiny wave. Sometimes, maybe even most times, there is no observable response. Most often if a response comes its from a staff or someone assisting the person greeted. "She can't talk." "He can't hear you." "She's too low functioning to understand." "He's noncommunitive." Most often I'm told, "You don't have to do that, she doesn't understand (he can't answer back)." I imagine that the support worker feels like they are doing a favour, explaining away the silence that greets my "Good Morning."

But I wonder why they feel the need to speak at all. I greeted them too, usually acknowledge, and now they are trying to brush away my greeting to the person they support.  I wonder what I am being told. Firstly, I can see that the individuals have complex disabilities. I wonder how the individual feels being summed up to a stranger with words that limit. I wonder if anyone ever thinks that maybe even if the person can't do what is said they can't do that maybe they can be socially more than someone who "doesn't." The existence of a disability, even a significant one doesn't make one disappear off a bus, doesn't cut one out of a social fabric. The expectation of welcome that comes with humanity still exists. Staff taking scissors and attempting to cut the meagre strings of a greeting by a stranger might leave the person completely socially adrift. I mean, it's just "Hello."

So.

I say "Hello" or "Good Morning" to everyone on the bus.

Everyone.

Because in my world. All means all.

Bear Facts

I had a conversation with a gummy bear.

There are probably few who can say that.

Ruby and I were talking on the phone, the subject primarily being her birthday in a couple of days, when suddenly she ran out of things to say or talk about. This isn't a problem for Ruby, she asked me if I wanted to talk to her gummy bear and then switched into this little girl pretend voice that sometimes was so high that only sparrows could hear, so suddenly I was speaking to a gummy bear.

What do you say to a gummy bear?

As a vegetarian do I apologise for having munched down so many of her tribe?

As an art lover do I compliment on the diversity and intensity of the colours that typify a conglomeration of gummies?

I don't know.

I managed a slightly stiff and uncomfortable conversation with Madame Ours (French for "bear" for those not familiar with that romantic tongue) ... I mean isn't everyone uncomfortable when chatting with the famous?

I hung up the phone after bidding adieu to both bear and girl and realised that, somehow, my day was a little bit different. Adult cares had magically disappeared in the struggle to speak 'bear' to a little girl with a squeaky voice.

So, my advice to those of you suffering through another work day or who want to jazz up an ordinary day - get a gummy bear, and have a chat.

It works.

The Air Was Blue

Sometimes I wonder if it's just me.

I guess not.

Since becoming a wheelchair user I've been astounded and frustrated by the, sometimes, inexplicable behaviour of those without disabilities. There are many examples but today I'm talking about doors. Yes. Doors. I first noticed it at the subway. The stop near us has four doors, one of which is the automatic accessible door, the kind that opens at the touch of a button. It's right at the top of the ramp so it's well placed. It's really, really, really difficult to get in or out of that door because the thousands of people who use the subway prefer to use that door. There are three other doors, but they pour through that one. It doesn't make sense because most of them don't use the ramp, which is long and narrow. They go through that door and then filter round to the stairs which are situated right in front of the other three doors. There are times when I just can't get in or out, we have to wait for a break in the constant stream or Joe has to go and physically block people so I can get into or out of the subway. People can become incredibly hostile when he does this and I worry sometimes that he's going to be struck.

The same is true down at the accessible doors at the Eaton Centre. They are great wide doors and, again, getting in or out is very, very, difficult. Here there are a multitude of door possibilities for everyone else. This is the only entry that's easily accessible. There are other doors but they don't have the button, Joe has to be with me to hold them open and they are a bit narrow for my chair. So we prefer the accessible door but again we have to have a degree of assertiveness in order to get through the door.

We've both talked about this phenomenon and Joe's even asked me if I was going to blog about it. I never had because I wondered if this was a 'just me' thing - or if others with disabilities found the same thing, having access but battling to use it. So, it was just something I'd let go.

Until this weekend.

Joe had gone to do some banking, I'd headed over to the Bay to pick something up. I scooted back to meet him. I came into the bank and was sitting waiting for one of the two big doors to swing open for me. As I was waiting a tall, young, man finished at the bank machine and had positioned himself waiting for me to get through the door. He stood there looking impatient. An elderly woman, dressed in tweeds, was doing her banking sitting on her walker. As she finished she turned around. She noted the man standing, impatient. She noted me waiting for the door to swing fully open.

She spoke.

She spoke in one of those deep, dark, voices full of pavement become gravel.

"There are two fucking doors."

Everyone was stunned. She was looking at him hard. The kind of look that mothers give children. The kind of look that only mothers can give. I could see by the set of her shoulders that she had had enough. And she was right. There WERE two doors. Yet he stood there waiting for me, obviously waiting for me, to come through the automatic door. She said what I realized I'd longed to say over and over again.

I wonder if it's easier to advocate for someone else than it is to advocate for yourself.

But, I'll tell you this. Never before have I been so glad to have someone speak up and speak out on my behalf. I didn't care if everyone thought what she said was vulgar or inappropriate or whatever. I just cared that she saw someone trying to shame me by being PURPOSEFULLY and UNNECESSARILY inconvenienced.

Because, of course, there were two fucking doors.

How Our Tools Spent the Weekend

My power wheelchair, Henry to his friends, was fixed yesterday. Over the years of use the back had become twisted. My chair is wider than normal because, um, I'm wider than normal, and sometimes I don't aim exactly right. As a result of this poor aim I sometimes hit my armrest on a doorjamb on the way in. There is be a sound 'crack' when armrest hits the door.  For some reason I always hit my left hand rest, which is good because if it was the right hand I could do damage to my controls.

Separately, I noted that the back was no longer square and I had started asking my friends not to rest their hands on the left hand handle as there was a troubling wobble to it. Well, a few days ago, Joe figured out that the back of the wheelchair was constructed to be moveable ... further up, further back, depending on the needs of the rider. It's actually a clever construction. So when I hit the door frame, or more accurately repeatedly hit door frames, I had driven back the back on that side. Joe was almost triumphant in saying that he knew how it was to be fixed. Loosen screws here, push it back into place there, tighten screws again.catastrophize

(Hold on to your hats for major personal revelation.) We have a toolbox.

We don't know how to use the tools in it, but we have a tool box. Well, that's not fair, Joe knows how to use some of the tools to do a few things around the house. But even with that, we aren't the 'fix it' type. Having a house was sheer hell because people who can't do things have to pay lots and lots and lots of money to people who can. Now, the most important tool we have is the phone in which we used to call the superintendent of the building who then sends us the surly repair guy who always looks like he's just been awoken from hibernation under a leaky sink. But, I digress.

A friend was over the other day wanting to use our computer for a few hours as hers was down. We were heading out to go with other friends to The Last Night of the Proms at a movie theatre equidistant from our various homes. I asked, nicely, maybe a little plaintively, as she was good with tools, could she find time to adjust my wheelchair. We showed her the problem, she looked at us with that kind of wide-eyed disbelief that people who can do things use on people who can't do things, and simply nodded that she would take care of it. I explained to her that I had to be out of the apartment when this was done because it would cause me too much stress and I need to be distracted so that I couldn't . I used to have to do this when our computer was being worked on - had to just leave.

So we went to lunch with friends and then to the Proms, I managed to forget everything about the repairs that were to be made on my chair. We had a great time singing and humming along to the antics at Royal Albert Hall (which I point out parenthetically Joe and I saw for the first 6 times when lost in London looking for our hotel, we kept going in a circle and passing the Hall, we finally found a taxi and paid the driver to lead us to the hotel which was, of course, no where near the Royal Albert).  We got home to Henry looking like he'd been to a really good chiropractor with his back completely aligned.

It wasn't until the next day that I got to ride in the chair and the change was remarkable. I realized that I'd been riding without using the back, because the back no longer seemed strong and stable, and that now I was fully supported. I'd be able to go farther and I'd have less back pain. Amazing.

On my way home, carrying lots of groceries, I sped away from Joe and just went on a joy ride again. It was awesome to be able to whip along feeling that my chair, literally had my back.

I called my friend to say 'Thanks' and she said that she got this weird feeling, while fixing the chair, that she was performing surgery on legs. Then she got all, "did I say the wrong thing" and stumbled around, "You know, it's like what you use to walk with, get around, it's not like anything else I've ever fixed. I'm glad you weren't around, I'd have been even more nervous."

 So, all this to say, my chair is fixed.

3 Coins in a Fountain

The, sometimes quite loud, opposition to anything I write about being a contented wheelchair user, or my pride in being a member of the disability community, has had me thinking a bit about how I came to this world view. I think three things are at play here.

1) I have spent a lifetime being different, one way or another. I've always been fat. From the moment I became aware of gender/sexuality/love I knew that I was different from the norm. The journeys I've had on either of those roads led me to a point where I believe a happy life is a life of self acceptance, even in the face of opposition. I spent time, a lot of time, in self loathing. I spent a lot of time considering suicide. I spent a lot of time praying. But during those dark times, life and purpose and love kept shining through the cracks. Finally I realised that it was I who drew the curtains and therefore it was me who could throw them back. And I did. By the time disability came along, it didn't seem to me to be such a big deal. Another difference. I wrote about someone once THERE CAN BE TOO MUCH DIVERSITY IN JUST ONE PERSON, and I suppose that can now be said of me. I'm cool with what comes. I'm cool with who I'm becoming.

2) I worked in a school, decades ago, as a classroom assistant, supporting teens with physical disabilities. They had a segregated home room and went to regular classes with regular students. The irregularity of regular students is never much mentioned but, one day, should be. Anyways, these were all kids who were borne with their various disabilities. They were amazing and very cool kids - I don't mean in the yucky kind of inspirational way - I mean in the incredible way that they handled difference and disability and the discrimination that comes with it all. One student in particular who fumed at having to enter a building by going on the ramp used for the garbage trolleys ... fuming at fumes, she called it, taught me so much about blatant discrimination that was completely invisible to others. I had thought that we were lucky that they had a ramp, she railed against entering the back door while all others went in the front. That year I spent doing that job, now that I look back on it, seemed to be prep school for the life I live now. Their wheelchair may have defined, to an extent, their identities but it didn't confine their aspirations. Later I would learn that the world view of those born with disabilities and those who acquire them later in life can be wildly at conflict - but that's a subject for others with a deeper human vocabulary than I have to write about.

3) I've never written about the day I lost the ability to walk (in front of three hundred people attending the lecture that day) and the surgery that cemented my status as a disabled person. I'm not ready to do that now. It's a story that only a few know. Maybe one day I will be moved to write it all down. But the moment that is pertinent here happened just before surgery. I was asked to sign a paper acknowledging the fact that I was told that the likelihood of success was low and that I may well die during the operation.  I had a choice, surgery and chance of living, certainty of dieing in a day or two. I choose to take the chance. I woke up in recovery. Got some pretty spectacularly bad news. Got some even more spectacularly good news. I was going to live. They had a pretty good idea of why this happened to me and figured that they could prevent it from happening again. The ability to walk, which I'd lost just days before the surgery, wouldn't come back. But, life would. I don't know but it seemed a step up. Those who say 'I'd rather be dead than disabled.' Well, I had that choice and, personally, I think rolling around in a wheelchair is better than spinning in a grave screaming 'WHAT WAS I THINKING!!!!'

So, at the intersection of those three events/things I found a peace with who I am, where I am and how I move. I don't wish to spend time in wishing for something else, when this is the something I wished for waiting for surgery, another day, another breath, another opportunity to get it right. I am living the wish. And, I have no desire to waste time on wishing for what won't come instead of enjoying what does come. Further, I believe that using my energy towards making social change is kind of the responsibility that comes with a second chance.

But maybe that's just me.

Being Young, Being Old

He walked really, really, slowly. It didn't look like his walker was a help, other than to stabilise him. In fact it looked like it took a whole lot of effort to move it along. I was whipping by him in my power chair, concentrating on what I had to do, so it was a miracle that I heard him speak. "Young man," he called out, and somehow I knew he was speaking to me.

I stopped.

Turned around.

Went back to him.

He sat down on his walker, breathless he asked questions about my power chair. How did I get it? What was the funding process? Did I have to have a doctor's recommendation? I answered all of his questions. He then told me that he has wanted to get a power chair or a scooter for several months now. He also told me that his family would have none of it. They didn't want him to give up and give in to the use of a chair. He said that he was nearing ninety, that his world had grown very small. He didn't want to give up walking but he wanted a bigger world.

What struck me about this conversation, stranger to stranger, was the fear that he had of upsetting his family. He didn't want to lose their love or their approval. But he wanted his independence back. He wanted to be able to go over to the Bay for a haircut, he wanted to drop by his favourite pub for a pint, he wanted to be able to go out without having to figure how much energy he had and how far he can go.

But he was fearful.

Talking to a stranger in a near whisper.

Worried about what he would lose while longing for what he would gain.

I tried to reassure him. Remind him that these were his days, that this was his time, that what he wanted was reasonable.

But he couldn't hear my voice, over theirs.

We shook hands, I wished him well. And then I patted his arm and turned to leave. It broke my heart to see him sit and cry.

Out of fear.

And longing.

And want.

Strawberries

I saw someone today.

Someone eating strawberries.

Ripe, luscious, juicy strawberries, taken one by one, little bite after little bit.

Juice dripping down the chin.

Eyes closing in delight.

I saw someone today.

Someone eating strawberries in a park..

Leaning back in her wheelchair, giving way to the taste of sun on her tongue.

Sensuous, sensual pleasure in an enclosed, eyes shut world.

Moments of sheer, physical joy.

I saw someone today.

Someone eating strawberries, in a park, under a tree.

Ripe, luscious, juicy strawberries, offered by a helping hand, one bite at a time.

The wheelchair beneath her, the straps that held her in, the leg rests holding her legs aloft.

Erased by the taste of wind and rain on her tongue.

Existing only in a moment of pleasure.

I saw someone today.

Someone eating strawberries, in a park, under a tree, being fed like Cleopatra.

Concrete Prejudice

Across the street from our apartment is a beautiful little playground that the girls love to visit whenever they visit us. As it happens, I'd never taken them there, not because of unwillingness but because the circumstances hadn't presented the opportunity. So, when after a breakfast of waffles and Jif, we all decided to head over, I was looking forward to seeing it close up. Odd how you can go by something pretty much every day and not really notice it.

As we approached I asked Joe, who'd been there before with the kids, where the entrance was as I couldn't immediately see a gate in. He pointed over to the side where a gate was so well integrated into the fence that it was almost impossible to see. It looked wide enough to allow the wheelchair so I was pleased that I'd be able to get easily in. However upon arrival I saw that the wheelchair would fit through the gate but there was no cut curb up to the gate. In fact I had to park my wheelchair in the entrance way to an underground parking lot serving the building that has the playground. Several times I had to move for annoyed drivers who didn't like me, understandably, blocking their way.

I was caught up in watching the girls play so I didn't bother thinking about anything other than the fact that they were having a blast. As happens at playgrounds we chatted with others there with kids, we made friends with a lovely black puppy and met a giant dog with boundless energy. It was a bit of a community gathering, and though I was in a driveway ducking cars and they were in the playground, or just outside of it, no one made much mention of the curb that divided us.

During a lull in the conversation a woman said to me, in a voice full of understanding, compassion and pity, "You must wish yourself out of the wheelchair at times like these."

Now, I know like I seem to be constantly thinking about disability and accessibility and prejudice and writing letters of complaint - but I don't always and I wasn't then. I mean really inaccessibility is a pretty constant experience of being disabled and one does get used to being in driveways while others are in parks pretty damn quickly. So her comment caught me off guard - pulling me back into what what actually happening and away from a moment of just enjoying the kids in play.

And when I was back into what was actually happening I realised that I wasn't and hadn't spent time wishing myself out of the wheelchair. You see I learned very early on, long before being in a wheelchair, not to give to disability what doesn't belong to disability. My being in a wheelchair wasn't why I wasn't in the playground with the kids, the fact that there was an uncut curb caused that.  Why spend time on wishing I wasn't who I was, when who I am is who I am? Why not spend time wishing for changes that are possible ... cut curbs and wider doors? Inaccessibility isn't about being a wheelchair user, inaccessibility is concrete prejudice.

I simply said, "I don't wish to be out of the wheelchair, I do wish to have the same rights to access the playground that you have."

She smiled a smile that told me she thought me brave.

Thankfully then, Sadie screamed with laughter and I could move back into the moment. The kids were having fun, I was successfully dodging cars, Joe was laughing watching the kids be kids. And magically, without wishing, it became a nice morning again.

Hazelnut Smackdown

 

Ruby and Sadie stayed at our place overnight last weekend so their parents could go out and have some time on their own. We love the opportunity to take care of the kids as we completely enjoy their company. We never thought that kids would be much a part of our lives and see these opportunities as kind of a happy happenstance. Ruby is much more of a talker than Sadie is, like her dad, Ruby can talk about pretty much anything at length. Sadie much prefers to listen and to make commentary when necessary or when she can find a joke to be made. So, it's fun.

Oft times I'm made to rethink something as kids have a natural kind go questioning that throws chaos in to a well ordered kind of rigidity of thought. I was challenged to think about something differently over a simple conversation about the new Jif spread that we had picked up in the States a couple weeks ago. We knew the kids liked Nutella and thought they may enjoy this new spread. We'd made them waffles, or more honestly we toasted them waffles, and they both chose to try the new spread.

Sadie was first to weigh in. "It's good."

Ruby ate it and agreed that she liked it.

I asked the question that I think most would ask at this juncture of the journey, "Which do you like better, Jif or Nutella?"

Ruby said, quickly and enthusiastically, "Both!"

This is not an acceptable answer of course because there are two categories in modern thought, winner and loser. There is no room for communism in comparing breakfast spreads. So, I asked again, differently. Ruby said, "It tastes a bit the same as Nutella and a bit different." 

OK, there's movement here.

"So, which do you like better?"

Ruby, a bit exasperated, probably because she was trying to have breakfast while being grilled like she was a single person focus group, said, "Why does one have to be better?"

I was stopped by the question.

"Um. Well. Um. I guess one doesn't have to be better."

She was then able to eat her breakfast in peace.

And I've been thinking about the possibility that maybe things can just be as they are, without competition, without constant valuing against others, without need for one to trump the other. I find the idea oddly jarring.

The boldness of children's thought -Coke versus Pepsi is a purely adult construct that serves to make divisions where none are necessary.

September Newsletter

The September issue of Service, Support and Success, on the topic of being a good neighbour, is out. If you haven't got it you've been missed on the mailing list. Let me know if you want a copy or want to subscribe ... email me at dhingsburger@vitacls.org and I'll get it to you at the end of the week.

Today's post follows.

F,umbles

It's pet peeve day.

I was riding the ferry over to the island when I overheard someone talking about working at a summer camp with kids with disabilities. The conversation was full of "f,umbles".

What is a "f,umble?"

Some examples:

"I just love working with disabled kids, but you know what, I learn so much more from them than they ever learn from me."

"I spend time volunteering at Special Olympics and you know what, they give me so much more that I could ever give them."

"F,umbles" come in variants of course:

From one non-disabled person to another who works with people with disabilities:

"I don't know how you do what you do, I just could never do that myself."

"It's amazing how you cope with the kids you work with (often said about adults) you must be so much more patient than I could ever be."

Another f,umble variant:

From a non-disabled person to a disabled person:

"You are just so amazing, I could never cope being in wheelchair like you do."

To a parent of a child with a disability:

"You must have so much more love in your heart to be able to cope with/ handle / parent your child with Down Syndrome."

F,umbles happen outside the disability context, of course, awards shows are full of them and they are equally annoying there - but I'm staying within the context of:

"What I'm amazed about with the paralympics is that they have the courage to go out and compete like that, if I was disabled like some of them, I'd never have the courage to go out." (actually said)

By now some of you will have guessed that "f,umble" is a portmanteau of faux and humble. It's a word that I coined some while ago and I've been using it in my head for quite a while. I find faux humbles annoying, particularly where the person arranges their face into an angelic glow to go along with the f,umble. I'm not sure why people feel driven to do this, but they do it often, particularly in my field of work. Yikes, it's everywhere. It's an odd form of attempting to demonstrate, in a superior way, one's personal humility. A kind of 'braggart humility" I suppose. When I'm in my darker moods, I see f,umbles as hiding an equally dark kind of hositility - and in those moods, when I hear them, they frighten me more than annoy me.

Anyways, I wanted to introduce you to a Dave-ism and wondered if any of you have you-isms yourself, I'd like to hear them. (But, no f,umble here, I wrote this mostly to get it off my chest, hearing yours would just be the cherry on top.)

Labour Day Special

Today is Labour Day and I've decided to share a video that was shared with me in a comment by Nan a couple days ago. I thought the video attached to the article she mentioned was astonishing and want to simply share it with you. You have a choice, of course, but I'd recommend you simply watch the video and ignore the comments which follow, I wish I had. Anyways, react to the video in the comments section if you are of a mind to ... see you other side of the holiday.

Echos

Such a big, big world they live in.

Such a big world.

We had a family trip planned over to Toronto Islands which began with a ride on Wheel Trans. The girls, Ruby and Sadie, LOVE Wheel Trans. They love the big windows on the bus, they love the exclusive nature of the service, they think it's really, really cool. This time we stopped an picked up a fellow with a fairly significant disability who was loaded on beside me and hummed and rocked in his chair as we drove down towards the lake. Ruby and Sadie picked up on this and began to sing songs on the bus as we played the "Guess the number of puppy dogs we will see from here to when we stop" game.

Once on the Island we were surrounded by Toronto in all it's multicultural glory. It was evident that we were in one of the worlds most culturally diverse cities. We move among and with people of varying faiths, varying colours and varying customs. Burkas, saris and turbans accompanied different languages and coolers carrying even cooler food. Ruby and Sadie shared rides with kids from around the world, all of them simply excited to be there, all of them simply having fun.

At one point, waiting for them to go on the log ride, there was a natural grouping of wheelchair and scooter using grandparent types all gathered to watch their kids and their kids kids make their way through the serpentine line up to get in the log that would take them up the flume and then roller coaster them down into a huge splash at the bottom. We all chatted, first with the 'which ones are yours' conversations and then we talked about scooters and wheelchairs and which brand is the best. We chatted about accessibility and about making our way through the crowds. All of the kids of the kids when they came around a corner in the line up and saw all of us gathered there, simply waved.

These kids are growing up in such a big, big world. A couple of gay dads with a toddler and an energetic 6 year old girl were simply part of the mix. They were noticed by parents but not by kids, they were just there. All of us, just there.

Like we should be.

Ruby and Sadie talked about everything but the people around them. Ruby was really taken with a "duck that was as big as a goose but was still a duck," Sadie kept having difficult deciding if she wanted to ride with me on my chair or with Joe on the scooter. They simply existed in a world of vast differences as if a world of vast differences wasn't different at all.

Such a big, big world they live in.

I mentioned this to a friend on the phone who said, jokingly, "maybe it will give them a bigger heart." After chatting some more we both agreed that, no, they wouldn't end up with a bigger heart, they will just be using more of the one we all have.

I'm glad, really glad, to see two little girls who's hearts get to echo in such a big, big world.

A Day Late A Dollar Short

"... the ability not the disability ..."

Years ago, for some reason I don't remember, there was a television special broadcast from the United States that had something to do with diversity. How's that for vague. At one point they had several comics together on stage doing material related to their own difference and how they experienced it in America. Again, I don't remember the comics, I do remember that there were women comics, comics of colour, and gay comics. They were funny. They made their point.

Some fifteen or twenty minutes later Geri Jewell, a comic with cerebral palsy, stepped on the stage. She began by saying something like, "Remember the other comics that were here a while ago, well we started out at the same time, I just got here now." I remembered being really taken aback by her "out and proud" approach to disability. I think in some way watching Ms Jewell over the next few minutes changed something deep inside me. The impact was so great that though I don't remember much about the show, I don't remember who any of the other comics were, I do remember Ms Jewell, and I do remember the power of a sense of humour that rose out of a deep sense of self.

Al this to say that we came upon, by accident because we'd seen no promotion for it, the Paralympic Opening Ceremonies for the 2012 games last night. True, the opening ceremonies were on Wednesday and this was Friday, but ... "they just got here now." We came to it late so we missed the thrill of seeing Canada enter the stadium but we enjoyed watching the parade of athletes from all the countries after "D". What was interesting, and highly distracting, was listening to the commentary that went with it. I don't know who the fellow was who was helping us understand what we were seeing - as commentators always seem to think they are doing - but it was clear that he didn't understand what he was seeing. More, he stumbled a bit trying to talk about disability while seeming really uncomfortable fitting the word into his mouth. Not that I blame him for it, "disability" still is a way of being "that dare not speak its name."

I did hear a lot of "... the ability not the disability ..." kind of talk. Everyone seems to feel very self congratulatory when they say this. They focus on " the ability not the disability." They celebrate "the ability not the disability." They acknowledge "the ability not the disability." It's like "Rah, us, we can look past the disability and see the ability."

Um.

Why can't both co-exist?

Um.

As a disabled person I am very aware how the world celebrates "ability not disability" ... um ... look at the fact that I'm watching a taped version of the opening ceremony of the Paralympic games days later than when it happened. Look at the fact that Canada won a gold medal straight off and I've never heard it mentioned in the media, amongst friends, or in chats at work. Yes, I'm familiar with the "ability not disability" way of life. The "we value this not that" way of thinking.

Well, from me here at Rolling Around in My Head to Paralympians worldwide. I celebrate your ability AND your disability at the same time. They coexist. You demonstrate that. Thank you.