Frankenwords

Disability.

It's a word.

Disability exists.

So 'disability' is a word for something that exists.

I'm not sure why that's such a hard concept for some to simply grasp. I've been hearing other words, Frankenwords created by someone, somewhere, who is so desperately uncomfortable with the reality of both the word, and the state of being implied by the word, disability.

We go through this time and again. 'Special needs' - their ain't anything special about my needs except societies and systems desire to deny them. Handicapable - my spell check correctly says this isn't a freaking word. Challenged - by whom to do what, it suggests that some great being comes down and says 'Live with THAT sucker!" Differently Abled - I am not differently abled, that implies I can fly or pronounce Welsh town names or see through buildings or understand the American electoral system, my abilities are perfectly ordinary ones.

The new words are even worse.

I'm not going to list them, I don't want, even in the slightest way, to promote them.

I just want to make it clear, I use the words disability and disabled because I have a disability and I am disabled. It seems very clear to me. I also, by the use of those words want to make the statement that I know who I am, I do not need to hide my self-hood under the shadow of a euphemism.

I've written about this before, and no doubt will write about it again. I find it odd that I'm more often chastized for how I describe myself and even, if you can believe this, the sequence of the words I use by non disabled people, and they are always in a huff. While I used 'person with a disability' at work cause I have to. Any other time I use 'disabled person.' Cause I am. Apparently this upsets the non-disabled who would rather I speak of myself in ways that have been deemed acceptable by the 'non-disabled office of how the disabled should speak of themselves.'

Disability.

Sound it out.

It's a perfectly good word because, even in sunlight it casts no shadow of shame.

Solidarity

It's a conversation that started on a packed subway train.

Sadie looked up at Joe and said in a clear, small, voice, "Joe, you have two chins." It was a simple statement of fact. The other riders had difficulty not bursting into laughter at her observation. Joe responded with, "And you only have one."

We thought that was the end of that. Then in church on Sunday, Sadie picks up the thread. "Joe you have two chins and Dave has two chins too!"

Joe, who was sitting beside Sadie, while Ruby was sitting beside me, just nodded quietly.

Sadie didn't take this as affirmation she took it as encouragement.

"But it's OK Joe because when I get really, really, really old. I will be bigger and I might might be bent over when I walk or I might be in a wheelchair, I don't know, but I know for sure I'm going to have two chins."

Sadie is five and she knows that in the very, very, very distant future, she will look differently and maybe move differently. She used this knowledge to establish solidarity.

Why can't others do that?

Ceiling Hockey

We have a balloon on our ceiling. Careless housekeeping, you might ask. But no. it's not that. It's a puck in our version of hockey here at our place.

You see we bought a couple of balloons over a month ago at the dollar store and amazingly one still has 'float' power. It got free of it's stick this weekend and headed straight for the ceiling. The girls looked at it and puzzled and puzzled and puzzled, but before their puzzler got sore, they ran to the scooter and picked up my reacher.

For those that don't know, reachers are often sold in the disability section of a pharmacy. They are made for us disabled folk to be able to pick up things we've dropped to the floor or things that are a wee bit too high to reach.

But in the hands of two little girls, they are much more than that. They are balloon hockey sticks. The balloon has been batted from one part of the ceiling to another, it's been pulled down own to make it's escape again. Right now it's in such a position that you can only reach it, if you are 5 or 8, from standing on the chair that's on elephant feet (furniture risers to the uninformed) to get it.

Sheesh, if they marketed this stuff right, disability products could outsell ToyRUs, but I guess only if they came with wicked imaginations.

Three Little Words

(A white unicorn with a rainbow shooting out it's mouth stands before the slogan: It Gets ... Different)

I had the kind of typical high school experience of those picked last for the team. I remember those days vividly, if not often. I knew, then, that though I envied some of the other boys and girls in my glass, that though I wished I could be them, there wasn't anyone wanting to, wishing to be me. I was the 'thank god I'm not him' kind of kid who got through school only to discover that though it may not get better ...

it gets different.

Attending the University of Victoria, I discovered several things. One of which I was worthy of friendship, even love. Joe and I, who met in high school, were there together and together we navigated the quiet, secret, hidden, fearful, lives of gay teens before the revolution. We both knew that no one knew, and we both understood that, though we had no desire for being different, suffered from no temptations for therapy, the pressures to be something else were enormous. The message that we were different and deviant weren't, shall we say, subtle. The message 'anything but gay' - it was, and still is in some places, more acceptable to be a murderer than it is to be a boy kissing a boy. We were under no illusions, no one would willingly switch places with us - something that we would have refused nonetheless.

I get differenter.

The advent of the wheelchair made it clear that I was now an other other and that no one, no one, understood that I was just rolling instead of walking. "I'd rather be dead than disabled." Right.

So.

Last night.

I was sitting in my front room chair. The one without wheels. When I heard Sadie climb into my desk wheelchair and begin to push herself around. When her mom asked her what she was doing she said, "I'm being Dave." She continued to play on the chair for several minutes, not crashing into a single thing, and then she hopped off the chair to become Sadie again.

I was in my chair thinking about all those times in school feeling alone. All those times at university hiding. All that time adapting to life on wheels. All that time I never imagined that anyone would ever willingly step into my place. That anyone would ever pretend to be me for fun.

But I guess that's because Sadie is a little girl who has learned that big men in wheelchairs who live with a man named Joe - isn't such a bad thing to be.

Isn't such a bad thing to be.

"I'm being Dave." Three little words that smash through years and years of history.

A picture may be worth a thousand words, but only three little words can smash the picture of the past.

I'm. Being. Dave.

It. Got. Better.

And.

It. Got. Different.

No Where

We got home yesterday, from the clinic, where Joe was told that 'all was well' and there was 'absolutely no reason for worry,' exhausted. Sitting and waiting, in a waiting room not designed for a wheelchair, and feeling both conspicuous and worried was tiring for me. Going through the testing was exhausting for Joe. So, we were quiet. Joe had something to eat, then went and had a very long nap. I logged on to work and quietly answered emails and completed tasks.

A few hours later we headed out to do some banking and to pick up a prescription from the pharmacy. I knew that Joe was going to be a while at the bank so I took a huge stack of 'scratch and win' lottery tickets over to be checked at the automatic scanner. This is one of the things I do - because Joe doesn't really enjoy the chore. Me, I find it kind of fun and relaxing. I just scan and put the winners (3$ WOW) in one small pile and the 'oops you lose' in the much, much larger pile.

Because we were at the bank I went to the small convenience store that had a 'checker' inside the mall and around the corner from the bank. I was feeling good. Joe was well. My worry had been unnecessary. Or, possibly, my worried had healed him, which is possible because worry is such a powerful tool for dealing with stress and crisis. But whatever, he was well. I was well. We'd had a nice bit of quiet time at home, me plucking at computer keys in silence while he slept. I was out. And though I was out, I forgot what that meant. And, as I ran the tickets through the scanner, I felt safe. I didn't notice people in the mall. I didn't notice anything. I just did the tickets, separating them into one pile or another.

Then, into my reverie comes a face. A fellow, wearing a shirt and tie, expensive I notice, is looking at me, with hard eyes, "Just remember, this isn't actually like having a job. A job. You know, like, where you go to work and make money."

And he was gone.

He returned to a group who were laughing at his little jibe.

And I was left.

Thinking.

There's no where safe.

There's no where safe.

There's no where safe.

Freaky Thursday (?)

Today is Dave and Joe's version of Freaky Friday.

For those who don't know what 'Freaky Friday' is, first, I'm sorry, second, it's a movie where mother and daughter magically slip into each other's body. Now, for Joe and I, that would be disastrous - he can't drive the power chair for shit. But what we are doing is switching roles for a day.

In a couple of hours Joe is going for a Gastroscopy and he has been told that he can't leave, after the testing, on his own, even to take a taxi home. So, I'm called in to do the supporting and caring (and worrying but Joe doesn't like me mentioning that one). I've booked WheelTrans to get us there and to get us back. So, the organizing is done, now it's just carrying out the plans and make sure he gets home safely, and gets to sleep off the drugs that he will have been given.

It's odd for me to be in this role. I don't often get to do things to support him in this way. I mean I support him in all sorts of other ways, the ways that come natural when you've been a couple for a long time. But, it's always Joe taking me to the doctor or to the clinic or to the hospital. He just motors on, giving me no reason to worry or to wait in waiting rooms.

So, this morning I got up all prepared to ensure it runs smoothly and WHAM a ton of worry came down and landed on my shoulders. I'm beginning to think that's the hardest part of any of this. I am so used to being the subject of worry that I forget how much of a load that is.

No wonder Joe has broad shoulders.

I'm glad I can lend mine today.

Oh, Please

(Photograph description: A tall glass of beer, with a frothy head, sitting on a table.)

Joe and I went out for a beer last weekend. Because of the harshness of the winter, this signified the beginning of spring for us. The trip to the bar isn't far but, even then, it was out of reach in such intense cold. But, Friday had some warmth, we felt like a trip to the pub. So we went.

A lot of you know that I quit drinking alcohol several years ago and have become an inveterate tea-totaler. So we stopped to get a couple big cups of the at Davids Tea and then we headed over to the pub. Not drinking doesn't mean that I don't like the pub atmosphere and as long as everyone is good with me drinking tea - then we're all good.

We chatted with someone, a really nice guy, for a bit and then the topic became my wheelchair and others who use motored mobility devises out in the community. The general agreement was that most were good responsible users but some drove dangerously and didn't care about the safety of others. I too have seen this. I have made comment a few times to scooter drivers who seemed to want to push me off the sidewalk to get out of their way. Equally, I have had other power wheelchair users demand that I get out of the way, when I'm shopping because they want to be where I am. I waited my turn, they need to wait theirs. It happens.

The fellow I was talking to started to lower social expectations for people with disabilities. "Well, at first I'm pissed off or annoyed but then I think about how hard their lives must be and realize that they just need extra patience." Having said this, he smiled at me. He's a really nice guy attempting to be decent. I don't want to go all disability politic all over his ass. So, I just said, "People with disabilities need to rise to the same social standard as everyone else." He began to say that he thought that maybe they couldn't. I told him the reason they couldn't was because people think they can't.

The tyranny of low expectations - right in front of my eyes.

Non disabled people simply don't seem to know how to think about people with disabilities without using some kind of  'disablity as a negative' trope. The narrative that is the easiest to go to is that all of our behaviour is a result of our frustrated lives as disabled people. There is a reluctance to simply think of someone with a disability as behaving like a 'jerk'.

Cause sometimes our primary diagnosis is 'asshole' or 'jerk' or 'what's with you?

And the most successful treatments for the behaviours that result from that particular diagnosis are patently obvious, aren't they?

How It Begins

Photo Description: Several people crossing at an intersection, including a young man with a disability.

Joe and I were waiting for the light to change when a young family joined the throng waiting for the green. A little girl, maybe 7 stood a little in front of her mom and day, so she was just off to my left. I looked over at her, she smiled at me, I smiled at her.

Then the light changed.

We surged forward. I was rolling fairly slowly because I was behind people I couldn't get around, and I wasn't in a hurry so didn't try. Beside me was the little girl. She was hopping from one thick white line to the next. It's a game that both Ruby and Sadie play sometimes. She was having fun. She continued to be beside me.

Then her mom, who had been talking animatedly to her dad, noticed.

I heard her being called away from me. These are the exact words used to call her away, "Get away from that man in the wheelchair." The little girl looked back at her mother, she smiled and waved to show that everything was fine. And indeed everything was fine, she was no where near my wheels and in absolutely no danger. She continued on with her game.

We were nearing the other side when her mother came and angrily grabbed her arm and pulled her forward and up on to the curb. "I said, stay way from those kind of people, stay away!' The grab, the pull and the anger in the words startled and frightened the little girl. She looked back at me now, the smile gone. The warmth in her eyes had been turned ice cold.

This is how prejudice and hatred begins.

I said I was sorry!

 

I just snapped. Literally and figuratively, snapped.


I don't know why, I got up in the morning after a good nights sleep. Joe and I had breakfasted while watching 'Longmire' on Netflix. We decided to get out early to get the shopping done so we can avoid the crowds. Joe, knowing full well the experience of shopping with me, "We can avoid all those people who resent the space you need for your chair." I said, not knowing I was predicting the future, "You can't avoid those people, some of them will have gotten up early too."

Putting the onions in my shopping bag, I headed to the end of the aisle needing to make a sharp right to go down to pick up some tomatoes. At the end of the aisle, there had been some kind of accident, someone had dropped something and part of the floor was covered in, what looked to be Thousand Island dressing. I remember remarking that there were a lot of islands, but 'thousand' was a stretch. I was near the end of the passageway, made narrow by those 'slippery when wet' signs and the cones with the picture of someone falling. A woman with a big cart turned and faced me, she clearly wanted to go through the same passageway that I had just traversed. I could not back up because there was someone right behind me.

I asked, nicely, "Could you just let me pass?" She backed up resentfully, so I threw in a 'sorry'. In response she looked at me with a deep level of anger and impatience. Inside, I heard a little snap. So I turned to her and said, with anger, "I said 'Sorry' what else do you want, you could see that I couldn't back up. What the hell is wrong with using just a little bit of freaking patience." (By the by, I didn't swear, I actually used the word 'freaking') And I rolled on. I was shaking. I don't do that. I don't snap, with anger, at strangers. I just don't. I've had confrontations but not like this, not over something like this.

When I got to the tomatoes I was settling down, Joe came back from getting the pop and water, which need to ride at the bottom of our bundle buggy. I begin to tell him about what happened when the woman came back. She said, "I want you to know that I'm always patient with people like you. And kids. And old people." I said, "You looked very angry and upset when I need to get through where the spill was. Backing up isn't patience, holding your temper is." She left.

Joe and I were near done and she's back again, "I feel sorry for people in wheelchairs and I'm always nice to them, I'm a good person." I said, "Well then, act like one." She stormed away. Joe looked at me questioningly. I said, "All she needed to say was sorry, not all this shit about loving cripples and kids, and I don't need her feeling sorry for me, I need to her be sorry for acting like a jerk."

That was the first one.

Yep, there's more.

Later we went to see the movie 'Chappie' and afterwards we hit the loo. On the way out, I stopped where there was room for me to put my coat on. I was out of everyone's way.  A woman at a table several feet away caught sight of me, turned around and settled in to watch me put my coat on. This happens all the time. Typically, I just move out of sight or have Joe block the view. Another snap. It was so loud I can't believe no one else heard it.  So, I said, loudly, "I'm going to move out of view of those so ignorant that they would stare at someone putting on a coat like they were at a freak show." Again, she looked shocked, then angered, and spun around in her seat. I put my coat on.

I don't do this.

I just don't.

I've never acted this way in public before.

On Sunday, we were out a lot and my old patience for this kind of thing was back. Never confronted or barked at anyone. Not once. I still don't know what happened on Saturday, it just seemed to be a day that I just couldn't take the shit that comes your way when you use a wheelchair or when you are different from others.

Anyone else had a day that they just let go of the reins??

World Down Syndrome Day: In A Different Key

(Photo Description: Skyline of the city of Toronto, downtown, at night. The CN tower is lit up in yellow and blue, in celebration of World Down Syndrome Day.)

In the wake of World Down Syndrome Day, a day designed to celebrate achievements and to challenge stereotypes, we need to examine the inclusitivity of the day. We need to ask whether those of us who believe in inclusion, who stand firm that 'all means all', have practiced the ancient art of exclusion.

I read a lot of the blogs and articles that came out about people with Down Syndrome. I was inspired, as was the intention of the writers, by the stories I heard and the amazing accomplishments of people with Down Syndrome. The list of those who have done amazing things, and who have lived such full lives, is long. Shona Robertson from Australia, Sarah Gordy from the United Kingdom, Michael Gannon from Ireland, Mia Farah from Lebanon, Shoko Kanazawa from Japan, Raymond Hu from the United States and Stephanie Boghen and Julian Escallon from Canada, comprise a growing number of people with Down Syndrome whose achievements are noteworthy in and of themselves. That last sentence was difficult to write, not because it was hard to find names to include, but because it was hard to select names to include - the accomplishments of many are rich and varied.

Many of the blogs that wrote had inspiring stories of those who have gone beyond the predictions of Doctors, the expectations of teachers, and the prejudices of society. These are important and powerful stories and they are stories that need to be told.

But. We all know that these are not the only stories that need telling. We all know that success isn't always bright and shiny and tinged with celebrity. We know this because most of us live quiet lives filled with more ordinary accomplishments. Most of us are celebrated, not by the press or by the world, but by a smaller more intimate group: those who know and love us.

I met Lyddia many, many years ago, when I'd first become a consultant. She was older than me, by about 15 years, she lived in a group home, she went to a day program and she visited her sister and her elderly father regularly. When the referral was first made for a behaviour therapist, it came from the family, not the agency who supported her. I met her father and sister first.

In chatting I asked about the spelling of Lyddia's name, I had wondered if the secretary had typed it wrongly on the form. Her dad smiled and said that when they were naming their daughter, her mother who had been shaken with the diagnosis of Down Syndrome, decided on the name after learning about the extra chromosome. She decided to give her daughter an extra letter in her name - to say to the world YES WE KNOW!

Their concern was the Lyddia was too passive and they wanted her to have a voice that was heard. She only had a few words, but she could say 'yes' and 'no' ... "that's all you need to be able to say in order to take control of your life," said her sisters. But it only works if people ask the right kind of questions. 'What movie do you want to go to?' doesn't work, they should know that, we keep telling them."

So the referral was for Lyddia to use her voice effectively and for that to happen, the staff had to listen effectively. Then I met Lyddia. She was a short, plump woman, who was, by nature, very quiet. She would look at me, when I asked her something, but as soon as she answered her question, she would look down and away. She understood what the goals were, she agreed to work with me, and we did.

Her staff loved working with her, they saw her as a quiet, gentle and very wise woman. They realized that they too often communicated in a rush, and forgot about framing the questions in such a way that Lyddia could answer. As such, I wasn't involved for long.

I enjoyed working with Lyddia, and, yes, I came to see her wisdom when we were together. She had, when she focused on a task that she enjoyed, the most beautiful and peaceful face I have ever seen.

I remember a conversation with Lyddia's sister. She said that she hated when professionals used terms like 'high grade' and 'low grade' or 'high functioning' or 'low functioning.' She said, 'It's not just because they consider my sister on the 'low end' but it's because those terms miss the point. Lyddia has all the skills necessary to just be Lyddia. She lives her life well. She lives her life kindly. She brings herself to every encounter. She brings her presence into every room. How do you rank those things?"

There is no link to Lyddia's name.

There is no article about Lyddia's life.

Lyddia lived her life receiving supports, going to a day program and later, much later, working part time in a pre-school helping out with the kids. She lived an ordinary life, with ordinary accomplishments. Her achievements are real. But they don't call attention to themselves. But they need not be ignored because of that fact.

Many people with Down Syndrome will live quiet lives filled with everyday accomplishments. Many will need help to live their lives for their whole lives. Many will have goals that reach for the stars that hang low in the sky. But, remember, they are stars still.

Some parents I've spoken to feel excluded from the celebrations of World Down Syndrome Day because they do no see their child represented in the 'You Can Do Anything' attitude or the 'If I can do it, you can do it,' mantra of self advocate speakers. They worry that in the rush to the front of the stage to celebrate those with exceptional accomplishments, the quiet accomplishments, accomplishments that come with struggle, and tears, and love, and patience will be diminished. They worry that their children are the 'embaressment' of the movement. They may not have ever been in the back wards of an institution but exclusion from the conversation puts people in linguistic back wards, hidden behind the conversations and removed from discussion.

Everyone needs a seat at the table.

And everyone needs a chance to communicate.

All means All.

Or as was once powerfully said to me, All means Even You.

World Down Syndrome Day

 

Right now, somewhere in the world, someone with Down Syndrome is sleeping in.

Right now, somewhere in the world, someone with Down Syndrome is getting up and getting ready for work.

Right now, somewhere in the world, someone with Down Syndrome is kissing his wife goodbye as he heads out the door.

Right now, somewhere in the world, someone with Down Syndrome is working hard at a job he loves.

Bigots tell the lie of 'unfulfilled lives.'
Scientists promote the lie of 'unworthy lives.'
Media purposely create prejudice in words, 'suffering their lives.'

Right now, somewhere near you, someone with Down Syndrome is going to school.

Right now, somewhere near you, someone with Down Syndrome is writing an essay.

Right now, somewhere near you, someone with Down Syndrome is giggling about a boy at school.

Right now, somewhere near you, someone with Down Syndrome is dreaming about her graduation.

Doctors tell the lie of hopelessness.
Geneticists use the word 'cure' instead of the word 'genocide.'
Politicians promote abuse by simply cutting funds.

Right now, in a hospital somewhere, a little child with Down Syndrome is being born.

Right now, in a hospital somewhere, a mother smiles knowing her child has been born on World Down Syndrome Day.

Right now, in a hospital somewhere, a father is crying while he holds his little child.

Right now, in a hospital somewhere, a nurse is quietly thinking that they were irresponsible to have this baby.

Right now, in a hospital somewhere two parents, hearts full of love, commit to their child and to changing the world.

Parents speak the truth of love and of hope.
Teachers speak the truth of learning and of hope.
People with Down Syndrome speak the truth about their love of life.

Right now, someone somewhere is committing to fight prejudice and bigotry towards people with Down Syndrome and other intellectual disabilities.

Right now, someone somewhere is committing to create safe spaces in the world for everyone, including those with Down Syndrome and other disabilities, by no longer staying silent, no longer hanging back.

Right now, someone somewhere is committing to make change happen in their heart, in their soul and in their actions. I am. Are you?

Two and a Wheelchair

A few weeks ago we were contacted by a friend who was going to be in Toronto on Thursday last and wanted to know if we could meet for lunch. We had to turn it down at first because we had something big on that day. But it big event was cancelled and we were really pleased to be able to contact her and say, "Lunch is on!" If you are going to be disappointed with something - do something that is completely wonderful and spontaneous. That's what we did, and it worked.

I was asked to choose the restaurant. I've been noticing over the years that friends typically ask me to choose a place. I became self conscious about this and finally, when pressed, a friend said that they found that it was so much pressure to find an accessible restaurant. He said that "most say they are and I go there to check and they aren't really. Some have a couple steps, others have tables packed together so that even though you can get in you can't get to a table. It's just too stressful." Another said simply, "I don't know the right questions to ask."

So I chose a restaurant called Frank. It's attached to the Art Gallery of Ontario and, like almost every restaurant that is in a museum or gallery here in the city, the restaurants are really nice and really accessible. Frank has an upper and lower level and, this may shock you, a ramp between the two. So you have choices anywhere in the restaurant. I went on line to find out what time it opened so I could call and make a reservation and found that you could do so on line. They have a place for comments or special requests, so I typed in a message about having a large wheelchair. When I arrived they had several spaces for me to choose from that would fit me and my chair.

The servers must have had a lot of training in the expectations of disabled customers because I was always asked about my wants, they never deferred to the others, I was treated with the same respect and courtesy as my friends and I was never once spoken to LOUDLY or as if I was a child. Amazing experiences all.

It strikes me again, when going to a place that is physically accessible, that's only the start. The intentional accessibility inside the restaurant was remarkable. Tables were spaced with a bit of room. The staff were completely welcoming and incredibly warm and respectful. The woman who served us served us as a table of customers not as 'a table of two and a wheelchair' as I heard a fellow working at the 'please wait to be seated' desk call out to a waiter in the restaurant who was to seat us. As a representative of the spirit of the restaurants policies on dealing with disabled customers she gets an A++.

I've not mentioned the food and I'm writing about a restaurant. Let me just say 'amazing' and if you don't believe me check out the menu at the link above.

Accessibility, in the end, is the simple and intentional act of providing welcome to all. That's it.

And to be frank, Frank was a wonderfully accessible experience because it didn't feel like it was labouriously accessible and as a result it was natural, not forced.. It felt instead, that their goal was to make us all feel valued.

Joe and I felt, after our friend had to go, we'd been there for almost three hours after all, and strolled home. We chatted about the amazing food and the wonderful service and the terrific company. And that's all.

That's all.

The Jobes Family's Meat Pie: And What it Says About Disability

So what does vegetarian meat pie have to do with disability?

Because, in a way, it does.

Yesterday, after work, Joe and I made veggie meat pie. It's not tortiere, which is the French Canadian version, it's meat pie from Joe's families tradition in B. C. Joe's mom and dad made huge slabs of these most commonly for New Years. We've been vegetarian now for 24 years now but up until we 'turned' we used to make these a few times a year. Joe mentioned them a year or so ago and I said, "Well, let's make a vegetarian version." It took a couple of tasty attempts to get it right, but we've got it right.

So as we were cooking yesterday we were chatting about the pie and our most recent successful adaption of a meat based recipe, Chicken Country Captain, which had been a favourite in our carnivorous past. I bragged a bit about how I'd finally figured how how to make Boeuf Bourguignon, which was a real test of culinary skill and daring. I mentioned that I liked the challenge of creating new and different recipes.

Joe said, "Well, that's something that's really changed since you became disabled."

I was surprised and said, "Huh?" (I am constantly erudite.)

Joe then said that years ago when we were vegetarian for about 5 years, he'd mentioned trying to adapt the meat pie recipe and I'd brushed it away as not possible. It was MEAT pie, I'd said. But now, he said, "you'll try to adapt anything we talk about. I think your mind now looks for ways to adapt things other than for accessibility or to make things easier physically. I think you are now just good at adaption, I think you mind is more elastic than it was before."

I told Joe that I'd not thought of that nor had I noticed a change, but I did remember the conversation about the meat pie and the impossibility of adapting it. Hmmm. I don't know when I became more flexible in my thinking or more creative in looking for solutions but it makes sense. When you have a disability you look to adapt to to make possible several times a day.

So, here's the ability to adapt recipes for a vegetarian diet. And here's to life with a disability that comes with some wonderful side effects - like meat pie.

Executive Functioning: New Issue Released

This new issue of the quarterly free publication: Executive Functioning, which is a newsletter for senior leaders in human services, has been released. This months topic is by Donna Lee and addresses the issue of how agencies can support staff who are called to testify in court. It's wonderfully written with a lot of practical suggestions. To subscribe, or to get this single issue, both are free, email dhingsburger@vitacls.org and indicate which you'd like.

Today's post follows.

Curtain Up

 

We met at the light. I'd seen him around a lot recently and we'd begun the 'hello there other disabled person in a power wheelchair' nod phase of our relationship. He looked over at me when I pulled up beside him. We both knew the order of the lights and knew that the diagonal crossing was next. We were pointed north and east from the south and west.

"Do you see that?" he asked.

"What," I asked.

"We are the show this morning."

He was right, having two disabled people in power chairs each with bodies very different from each other and from those around us. The looks came our way. It's a busy intersection and soon there were a lot of people around us.

He said, loudly enough to be heard by others, "It's kind of creepy when you are surrounded by all kinds of normal isn't it?"

"Creepy AND disturbing," I responded.

Just as the lights turned and people started to move he said, "I'd rather be dead than have to get around on legs, good God, how do they cope?"

I laughed along with him as we crossed the street.

So we're passed the nodding stage and into the street theatre phase of our relationship.

Curtain up!

Crying for Cinderella

 
I worry about writing this post, following some of the posts I've written recently, because I think it might contribute to a view of me as being quite emotionally fragile. I am assuredly not. I do have little moments, like the one I'm going to write about, but my life, for the most part, is happy and I feel valued by the important people in my life. I'm going to go ahead with this story, because I want to tell you, but ... worry not.

A last minute plan had Ruby and Sadie and their Mom come down to the city to go with us to see Cinderella. We were going to the IMAX viewing and I was really, really looking forward to it. There were two reasons really, I wanted to see the kids see the movie, and after having heard an interview with Kenneth Branagh, I was interested to see his take on the old story.

We arrived and got great seats at the theatre, Ruby and Sadie were set to go and, as I'd hoped, they were transported into the magical world of Cinderella and the handsome prince. This version of the story, while it had all the trappings of a movie made for kids, what with the hilarity seeing mice turn into horses, had a surprisingly strong story line. Now, I need to confess that I've never seen any version of Cinderella on screen, and I only knew the outline of the story; evil stepmother; 'you won't go to the ball'; the dress; the glass slippers; the midnight warning; and the final fit.

I found myself watching the screen more than watching the kids as I was also swept into the story and the magic. I cried three times. Three times!! Twice because of what was happening on the screen. There was a moment, and this may be really hard to believe, where I, a big fat man in a wheelchair, identified with Cinderella's feelings and I cried as she cried and I cried for the same reasons that she did. I may not look as good in a ballgown as her but that didn't matter, what mattered was that feelings and their causes can be universal.

My final tears came, near the end, when I realized that I was in the theatre with two little girls and I wanted the world that we had seen on screen, the world where goodness was always rewarded, where kindness was a virtue that was valued, where courage kept you on course and where the wicked ultimately are undone, I wanted that world to be real. I wanted the girls to grow up in a world where their natural tendencies towards kindness and compassion will be seen and valued, not counted as weakness and naivety.

After the movie, we all talked about it. I asked if anyone had cried while watching the movie. None had. Sadie, who is five, said, "You cried in Cinderella?" with a kind of little girl version of ... WHAT?

So, I guess I discovered that I'm a little more emotionally vulnerable than a five year old girl. But then maybe it's because as a 62 year old man, I've had a little more experience of loss and of disrespect and therefore understand more deeply what it means to see good win out.

At least that's what I tell myself.

I guess these stories are enduring because of reasons other than handsome princes and beautiful Cinderellas. They are stories that encourage us to kindness and offer us a vision of what the world could be if kindness was a path to success and rewards, even more, than the way of cruelty and deceit.

Sturm Und Drang on the Subway

After 8 years, it finally happened. I felt sick about it. My apology was brushed off, I wanted, I wished, that it had been taken seriously as it was seriously intended. But afterwards, maybe an hour, my upset at myself was being tempered by my upset at the need I have for unrequested, but extremely needed, assistance from strangers, even ones I can't see.

You are probably confused.

Let me give you the context to all of this sturm und drang.

I was on the subway heading down to Dundas Station. That's a very busy station and the train is always packed by the time we get there, and, of course, most people on the train get off there. When the doors opened I let a few people in front of me through the door and then headed there myself. I had to turn the wheelchair so it goes straight through the door. There is a huge gap there and I need to go over it with a little bit of speed. I've done this a thousand times.

All those thousands of times that I've done this, I've done this in subway cars that are always packed. So I've come to expect that subway riders can see me, see the movements of my chair, and are willing to give me space, even if only not to be run over. In fact, I've never run over anyone, or even bumped into anyone. People have bumped into me, but that's a different issue. Me. I'm careful. I know I'm heavy. I know my chair is heavy. So I'm really careful.

I was just about finishing lining up the chair (this sounds like I take a long time but I'm quick) and a woman rushed behind me and my back tire turned and caught the side of her shoe. She was startled and cried out, not from pain but from surprise, I shot forward and out of the train. I turned to apologize to her and, even though she was complaining about nearly being run over to a friend with her, she brushed my apology away saying that I hadn't actually hurt her. She walked away, without a limp, clearly still angered by what had happened.

And I felt sick.

I am so careful in my chair.

But, I need people who are around me, particularly around the back of the chair, even more particularly when it's crowded, to work with me as I move the chair. The same way they work with those who have strollers, or prams, or shopping carts, or walkers, or bicycles. I'm not asking for more than others. I just need a kind of active, yet not interactive, help. Like other people do.

I need to use the subway. I need it on cold days. I need it when I'm on a deadline. I need it for the same reasons other people need it. I had to push away the thought 'I won't go on the subway any more, there is too much risk for others.' Then I remember that this is one person in thousands of people who have travelled on the same train to the same station with no incident at all. It's just one person. I didn't actually run over her foot.

But even now, writing about it. I feel terrible.

Both at what happened.

And at knowing exactly, ex-freaking-actly, that I don't figure well into the story she's telling today. And from that story prejudice and animosity towards those of us in power chairs and scooters will be reinforced.

Shit.

The Best of Men

Joe was in the kitchen heating up leftovers for diner and I was surfing Netflix last night and I came upon a film called, "The Best of Men." I only noticed it because the photo accompanying the brief description had a bunch of men, in period clothes, in old fashioned wheelchairs. As we had decided to watch an episode of Midsomer Murders, I called to the kitchen to Joe asking if he'd mind if we watched a movie instead. He was up for it.

The movie is ostensibly about the founding of the Paralympic Games. But it's not really about that at all. It's about disability and identity. It's about usefulness and purpose versus hopelessness and death. It's about a doctor who refused to give way to the social prejudices about 'cripples' and who refused to see death as the 'best outcome' for those who would no longer walk.

I do not want to give too much away about the plot, and I don't think this will take away from your enjoyment of the film, but the movie begins with a young man, severely injured in the war, asking the doctor to kill him. He sees no life ahead for himself. The doctor, simply says no, tells him that there is life yet to come, tells him that he must struggle and hope, but there is life yet to come.

Here is a man who did not believe that death was preferable to disability, a man who fought so those who were 'useless' and 'hopeless' would receive effective treatment. Men who died not because of disability but because of bedsores needed, he believed, to be challenged to be asked to see themselves and their new status as disabled people as simply a different way to experience the life they lived.

I want every single person who trumpet the idea of assisted suicide for those who, like these men, are desperate to die rather than to learn to live with disability. I want those that nod gravely and with deep understanding when someone puts a pillow over the face of a child with a disability to see this film. This film is sneaky because you go in expecting a dose of inspiration porn and instead get your own prejudices smacked around a little bit.

If you have the time. I highly recommend this movie. I leave aside the fact that the primary actors are all non-disabled (and I do so reluctantly) because the message of this film is so timely and important that it needs to be seen widely.

So.

If you can find it.

Take the time.

A Cheerleader, A Team, And Responsibility

I think, by now, we've all read the stories or seen the news clips of a young woman with Down Syndrome who, while cheer leading at a game in her school, was being bullied. Some players on the sports team, young men, walked off the court and confronted the bully.

I do not want to take anything away from the actions of those young men. What they did was wonderful and supportive and full of angry compassion. They took action. We all know how to stop bullying - by simply not allowing it - but few actually take the action necessary. They did. Good kids. Good parents. They deserve the attention they are now getting.

When this story appeared I read nearly all the reports I could find and watched three or four news clips. I find that stories like these are told, very much, through the lens of the reporter. They all get the main points of the story but each reporter adds in or leaves out other bits of information. Most of the stories went for a 'feel good' story about the action of the boys. Understandable. Others, added in little bits of information.

Let's look at two bits of information that were contained in two differing stories:

One reporter added in that the boys spoke to the sports director first. Then, they took action. While it wasn't stated, it was implied that they took action because the school official did not.

Another reporter added that the young woman was now being walked to class by the boys from the team. Again not stated but implied, they were doing this to protect her from further bullying.

I'd like to comment on those two facts alone, emphasizing that I think the boys did an amazing act. Let's remember it was the sports team that stood up for her, NOT the cheer leading squad to which she belonged. They would not have had the relationship with her that her peers did, and even so, they saw the bullying, knew it was wrong, reported it, in the face of inaction - took action.

Again: they reported it.

Again: in the face of inaction they took action.

One of the reasons that schools are notorious for bullying is precisely the fact demonstrated here. A school official did nothing to intervene, they knew it was happening (they were there, they saw the same things the boys saw, they were told specifically about it) and they did nothing. N.O.T.H.I.N.G.

I was teased fairly regularly growing up, I was also bullied and occasionally really physically hurt simply for being fat, being a bit different. My most potent memory, which I've written about before, was when a fellow student. A tough guy from Ymir, saw me being beaten up in the gym, while the gym teacher watched, and he tore over and pulled the guy off of me and told him to never, ever touch me again. He turned to the teacher and told him to do his job. Then he stormed out of the gym. I wasn't in his social class in school, he never let me properly thank him. I realize now he didn't do it for me, personally, he did it because his sense of justice and fair play had been disturbed and he had to take action. Nonetheless, I'm grateful.

But the teacher, witnessing what was happening, watched.

I should not be made safe because of the random act of a student with both conscience and courage. I should be made safe by a school employee who's job it is to create safe spaces for learning.

The same is true here.

Good for the boys.

Now what the hell is wrong with the adults who were there?

The second fact that the boys were now walking her to class. One of the photos showed her holding the hands of two boys, while another walked alongside, as she went from one class to another. So, are they saying that the hallways in this school are so dangerous that she needs bodyguards? Let's leave that for now as I've already written about the inaction of officials. I'm pleased, again, that the young men are taking action.

But one day they won't.

But one day they will tire of this.

And even if they don't, she will leave the school and the sphere of their influence. Leaving her dependent on the good will of others for safety is a huge mistake. Let's acknowledge what every study about bullying and teasing has shown. It is a fact of life for people with intellectual disabilities. It is simply a fact of life. That being the case, she needs to learn how to protect herself, physically and emotionally from the actions of bullies and rude passers-by. There are strategies that can help. There are ways of thinking about bullying that protect and enhance self esteem. I'd rather have seen a picture of her walking proudly, alone and independently, having learned she isn't alone and there are those who care and that she has a right to expect safety and that she is a person of value and that she knows how to keep herself safe and knows what to do if others are mean or cruel. That's the picture I would have liked to see.

But until that happens, and for now, she has some wonderful young men who are walking with her.

Good on them.

May she one day life in a world where she doesn't need them.

Because those who are in positions of power use that power to work actively to create safe places.

No, I'm not dreaming. I'm hoping.

Really hoping.

Deeply praying.

That one of those boys becomes a school principal, and another becomes a sports director in a school, and another becomes a teacher ... and then they can make the difference that changes the game entirely.