A Living Hell

(Photo Description: A skeleton prays while being engulfed in flames in Hell's furnace.

Note:

I want to be a respectful as I can in the post I'm writing today. I have decided not to use the last name of the actor involved or his mother whose words I will be quoting here. His first name appears in the quote I am going to use and I don't see a way of avoiding that.

On my Facebook page I saw a 'trending' article about an actor, just 40 years old who died as a result of a car crash. Even though I'd not heard of him I read the short article in Time magazine on line as well as another in People on line. Both described his accident, which sounded horrific, and interviewed his mother who was there with him when he died.

Now, we have to remember that she just lost her son, and is finding a way to deal with that. Near the end of the article, she is quoted by saying that though he fought valiantly to live ... “Had Nathaniel lived he would have required a ventilator and would never have been able to utter one more word and would have been sentenced to life as a quadriplegic. A condition that Nate would have never have been able to tolerate. By God’s love and mercy Nathaniel was spared this living hell.”

The 'living hell' from which the actor was spared is a daily experience of many people with disabilities. In fact, those same people with disabilities don't typically report that their lives are hellish and aren't rolling themselves off cliffs. The general ignorance about life and quality of life of people with disabilities is concerning. The denial of access to media and to mainstream sources for sharing our lives, our voices and our stories is a death-making barrier. People don't know us so they imagine us. People don't hear our stories so they, without recognizing their own ignorance and prejudice, write their own. (I am using 'ignorance' and 'prejudice' in the softest way that they can be used - people, including all who read this and the one who writes it, are all unaware of their own ignorance and prejudices. I am not speaking of purposeful, stubborn ignorance or blatant, hateful prejudice.) We, as people with disabilities get shoved off into the one's upon whom God's grace had not fallen. "There for the Grace of God go I" being a statement of smugness and arrogance.

I am also concerned, even more than the idea that death would be preferable to life for a young man, that the media chose to publish the quote. Both People magazine and Time magazine chose to highlight the quote in the articles. Didn't they think that perhaps they would promoting the current agenda to see disability only in the looming shadow of the 'assisted death' movement? Didn't they think that people with disabilities might be readers of this story? Fans of this man? Affected by their words? Of course not! Because we don't exist in their minds at all. We exist in the fringes of their consciousness, where trolls and ghouls and things that go bump in the night exist. I'm willing to bet that neither author gave a moments thought to what they printed. Not a moment.

But we, people in the disability community, need to see this as a continuing failure to communicate with the larger community. We need to devise strategies to get our stories heard and our voices considered. The continued failure to do so, I think has chilling consequences.

To Men Who Pee

Photo description: A white infant's  onesie with the words 'We All Pee!' written in red.

 A Letter To Men Who Pee,

I think we can all agree on two simple facts:

1) Everyone needs to pee.

2) Everyone needs to poo.

OK, let's be really clear about those two facts. Everyone means everyone. People with disabilities poo. People with disabilities pee. Everyone needs to pee and everyone needs to poo.

I'm driving those facts home.

I think we can move on now.

Disabled stalls in the men's room, or the separate family / disabled bathrooms are designated primarily for people with disabilities or people who have other real and legitimate needs for the extra space.

Are you still following me?

Now, Men Who Pee, when you have a choice of stalls, please choose the stall that suits your needs, if you don't really, truly need the extra space, please leave the disabled access stall free for those who do. WAIT! I know what you're thinking, "I've never seen a disabled person use this stall." This is an interesting fact and you may want to think about why disabled people aren't frequenting the same places that you are. I've seen disabled stalls in restaurants with stairs - you might thing about accessibility rather than an excuse to use the stalls. Secondly, not all people with disabilities find stairs a barrier. Some need the extra space even though they don't look disabled. Yep. Some of us can pass. They lurk among you gathering data on the mysterious world of the non-disabled. What they've found is troubling, but that's another post for another time. So. Don't use it if you don't have to.

Why am I writing this to men when this part about using the stalls applies to women too? You'll see in a minute.

OK, here's the point of the whole blog.

Remember, you're in a stall, usually the only one, that disabled people, in the case of disabled access washrooms, or disabled men in the case of a disabled stall in a men's room, are able to use.

So follow this simple rule:

Don't piss on the toilet seat.

The seat lifts! It's this magical design that allows you to lift before pissing all over the freaking seat.

A disabled person, or guy, has to come in and, first wipe the pee off the seat if they need to sit, or before they lift the seat, because we do that, so it doesn't pool on the floor and get our clothes wet.

We don't want to sit in your pee.

We don't want to wear your pee.

So let's go over that rule again.

DON'T PISS ON THE TOILET SEAT.

Thank you for your time in reading this.

Your fellow (disabled) guy!

Silence

Photo Description: A 92 year old veteran stands, in rememberance and in a moment of silence.

Today, at 11th hour of the 11th day of the 11th month, many people will stop, for a moment, they will come to silence, and they will remember. That's what we are called to do on Remembrance Day. Be silent. And Remember.

I have always associated silence with war.

I see movies and documentaries that show that war was anything but silent. It was a noisy, and bloody and destructive thing. While it raged through countries, it also, when it touched them, took frail bodies and tore them apart, it blasted holes in the hearts of those who waited at home. War was not silent.

But.

Even so.

I have always associated war with silence.

My father fought in World War II. My father was wounded in World War II. But, through my growing years, I learned that my father's fight, my father's contribution, my father's individual actions were shrouded in silence.

There were words my father had but never used.

There were memories my father hand but never shared.

There were people my father lost who's names have not been said.

For there is silence in a deep part of my father.

As a growing child and then, once, again as an adult, I ask my father to tell me about the war. He told me little. I know he saw Stonehenge. I know that he was in Italy. But he didn't tell me about war, he told me of places he'd been. He walked around his silence and told me what he could see from there.

So.

I left him to his silence.

I left him to his need for silence.

And I will join him today, as I do every year, in that silence, on the 11th hour of the 11th day of the 11th month.

The Essential Components of Welcome, Inclusion and Accessibility

Photo Description: A map of Toronto's Underground PATH showing the routes through buildings, skywalks and underground passageways.

Sunday, at my place, we were buzzing with activity. Getting two kids and ourselves ready to get out the door and down to the 'meeting place' for Vita's first annual Accessiwalk was a bit of a challenge. But we managed to get there in time, and maybe even a little early. So we introduced the kids to those who were there and explained to them, again, what the Accessiwalk was.

Vita was participating in a United Way fundraiser, on that same Sunday, where people were climbing the stairs up to the top of the CN Tower. Because we have a new policy at Vita, a 'Safe Space' policy, we looked at that activity differently. In our policy we included some parts of what it is to be safe. Being safe isn't just being free of physical harm - it's also about feeling welcome and included. The CN Tower fundraiser is a fun one, it's a high profile one, but it's one that, by its nature, excludes a lot of our members and our staff. The decision was to have a parallel activity where we would walk the Toronto Underground/Overground PATH from Dundas Square to the base of the CN Tower. That way, everyone could choose the activity that best fit their needs and everyone, therefore could be a contributor.

Of those that gathered at Dundas Square were people who had bad feet or bad knees, who were slow walkers or who didn't walk at all. It was a wonderfully diverse group that was in the best of spirits as we set off. About a quarter way into the walk, we hit our first bump, one of the elevators, that was working two weeks ago when we mapped the route out, was down. We went into problem solving mode - this is the mode which people who use wheelchairs or walkers know only too well. We separated and aimed to join up again in the next building.

The next building was a problem because all the accessible elevators were shut off because it was the weekend. So we talked on the phone with the larger group and eventually met up at Union Station and went on from there problem free. All of us arrived at the end point pretty much at the same time and we agreed that it was a fun day, even with the problems.

You see the essential parts of Welcome, Inclusion and Accessibility is a spirit of willingness, a sense of humour and a creative approach to achieving the goal. I didn't say it there, at the end, and maybe I should have but I was incredibly moved that this happened at all. That, as an agency, we were asked to think more deeply about how inclusion and welcome happen, because we thought more deeply about safety and what it meant to be really safe. I was incredibly proud to see others, like me, who, though they didn't use wheelchairs, were able to choose to be part of an activity that paralleled an alternate activity.

Did we learn stuff from our first annual Accessiwalk? Yep ... like accessibility can be determined by the day of the week. Will we be able to do it differently and better next year? Yep ... the subject of next years walk came up seconds after finishing this years walk.

Inclusion doesn't happen just because you will it ... it happens because you do it.

Welcome doesn't happen just because you offer it ... it happens because you make it visible.

Accessibility doesn't depend solely on a lack of physical barriers ... it happens because minds are ramped when curbs aren't.

Knowing these things, we are simply going to be better at more than just planning next years Accessiwalk.

The Prison

Photo Description: Ruby and Sadie dressed up in Roman togas standing in front of a stone relief on fellow Romans in togas.

 At the Royal Ontario Museum's exhibit on Pompeii, at an exactly appropriate point, there is a play area for children. There's a lot to look at in the exhibit, up to then, but precious little to touch and do. Someone wisely thought of a way to build educational play, which was really fun and really interesting, somewhere around the mid point.

The girls flew to the area and immediately, alone with the other children there, threw themselves into play. The play stop was set up as a market stall in Pompeii. they had an area to measure the weights of goods being bought, with the world's coolest weigh scale. They had huge jugs (there is another word for them but I've forgotten) for people to try to lift to see the heft of them. There were other things but these are the one's that attracted most children.

As Ruby and Sadie were measuring out the weight of various fruits and vegetable, and following a table to see what a litre of apples looked like, a boy, around Ruby's age, joined in. I had asked a question and when the girls, who didn't hear me, didn't respond, his shy voice answered. I looked over to him and thanked him, he smiled. He played, at first along side the girls and then suddenly, the way children do, they were all playing together.

I glanced round to see who he was with, he seemed to be completely on his own. He wasn't, he was with 4 other children and someone who looked, not like a parent but a 'minder.' They, the other children, stood, bored, and watched, the other kids, the lesser kids, play. Smirks. Rolling eyes. Cruel comments just barely loud enough to hear. Right now, this little boy, was terribly alone.

Both Joe and I watched, and laughed, and chatted, now with three kids. I rolled over to the three huge jugs and was determining if I could get the wheelchair close enough to try lifting them myself. I may be in my 60's but I like play as much as anyone else. I had had a blast with the weigh scales, something I rarely say, and now this 'lift the jug' challenge looked fun.

When he, the young boy, noticed me over at the jugs, he came over, his voice was less shy now and becoming, instead, a little more enthusiastic. "The middle one is the heaviest," he said. His voice brought Ruby and Sadie over and they all tried. They disagreed on which of the three was heaviest. Ruby held out that the one on the left was the heaviest, Sadie and the young boy was certain that the middle one was.

This led to, "Let me try again," several times amongst the three. Everyone switched their opinion the next round and the round after that had no one certain which of the two was heavier. There was a lot of laughter as they tried and tried and tried again.

I looked over at the four and the minder. The minder was primarily on the phone, texting, looking up every few minutes. The other four, their faces had changed. They looked at the game of 'which is the heaviest' with actual curiosity. But they had been trapped. 'Cool' often becomes 'Cold' before it becomes 'Frozen.' They were imprisoned in their own judgement of the play area.

They stood and watched rather and participated and played.

It was growing time to move on, both girls were hungry for lunch, and so were we. As we left, the young man said to the girls, thanks for letting me play with you. They, to their credit, were surprised at the 'thank you,' why wouldn't they have let him play. That's what happens at play stops and spots in the ROM. They just nodded. Then his voice called out to me.

"Thank you for being so nice to me."

I am not writing this here, to tell a story about how nice I am. The point I want to make is that I wasn't nice, I didn't do anything nice, I just, I suppose, wasn't hostile. He was part of the play, he was part of the conversation, it's very simple.

I felt horribly sad that a kid thought that being treated simply as a welcome part of a group was 'nice.'

Because I have known that feeling.

Being grateful for what I should have just been able to expect.

I comfort myself by knowing that he's a good kid, he's a smart kid, he has an enquiring mind and a friendly manner.

He'll go far.

Free, as he is, from the frozen prison of cool.

Google Pride

I don't do Power Point.

Well, that's not quite true. I've put PowerPoint presentations together for other people, and I've done them for when I'm presenting with a group. But, when it's just me. I don't do PowerPoint.

However, I've just finished doing a Power Point for the keynote speech I'm doing in San Francisco in a couple of weeks. I won't be clicking away madly as I speak, I've made this to play, automatically, in a loop.

I'm speaking about Intellectual Disability and Identity.

So I wanted to put together images, photos, cartoons, bumper stickers, tee shirts, that present disability as an identity of which pride is an integral part.

So I sat down at my computer and I began to search for these images.

And I had a blast!

A freaking, fracking, blast!!

There were so many!

So very, very, very, very, very, many to choose from.

It's like there has been this slow growth, this blooming of disability pride in both political and personal forums which has resulted in out and proud images everywhere I looked.

I had to stop at 45 images.

I could have done 145 without breaking a sweat.

So, if you are bored one day, sit down at the computer and google disability pride, or disability tee shirts, or disability posters, or disability cartoons ... and just wait and see what you'll find!

It's early in the morning, I've been doing this for three hours, and I'm uplifted (not inspired) by the positive images and the devastatingly funny cartoons I found.

Ridiculously Happy Post

Photo description: Brooklyn Surrogate Court Judge Lopez Torres

On the subject of 'gay marriage' the Supreme Court of the United States said marriage: "rises from the most basic human needs; marriage is essential to our most profound hopes and aspirations."

The fight for people within the LGBTQ community to have the right to marry, is also, arguably about the desire for the recognition of the existence and possibility of love existing in unexpected places. The idea that two men might have sex might be disgusting to some, but the idea that two men might love each other is terrifying. Love changes everything. It changes the debate and it forces people to see people differently. I was always impressed, and moved, when I saw protesters, carrying placards about the right and freedom to love, the right and freedom to be loved, and the right and freedom to express that love through marriage. Not only was that argument accurate, it was also politically astute. While it's one thing to fight against 'marriage' it's another to fight against 'love'.

I had a discussion once, with a woman from the United States, who said that she couldn't support 'gay marriage' when she worked with people with disabilities who were also often disallowed relationships and who faced incredible obstacles on their way to the altar. I suggested that she might be hiding homophobia under an argument that didn't make sense. She, almost violently, disagreed and suggested I had 'tainted loyalties' to people with disabilities because I was a gay man. Well, she's right, being a gay man has made a difference in how I see things.

It's because I am a gay man that I began to write and speak about the issues of sexuality and people with disabilities. It didn't take much intellectual work to see that the oppression of the sexuality of a whole people was very similar to the oppression of the sexuality of a whole people. I found, similarly, that the discussion of love and relationships was much more politically charged than the discussion of sex. People could grant that people with disabilities could be sexual and they could grant that masturbation was an appropriate outlet under certain conditions and restrictions and with various approvals. But when I, along with many others, raised the issue of love and the right to love, THAT made people uncomfortable. Suggesting that love could be found in the unexpected space between a couple with an intellectual disability changed the dynamic. Now, breaking them up wasn't 'dealing with behaviour' it was 'engaging in emotional abuse.'

Yesterday, I read a news report that made me ridiculously happy for several reasons. It's the story of a 29 year old man with Down Syndrome, who, because he was in love with a woman and wanted to get married to her, his mother and brother fought for guardianship so that they could deny him the right to the relationship he had with his girlfriend and ensure that he not ever marry. It seemed, and this is my reading of the story, as if they thought that the fact of his disability was enough and that they expected this 'fact' to trump all other facts and that the guardianship would be granted.

It didn't.

It wasn't.

The judge in this case, Brooklyn Surrogate Court Judge Lopez Torrez, said two things I'd like to highlight. First she said something that should rock the world in its perception of people with disabilities: "The right to have a family of one's own is not reserved only for persons with no disabilities ... and the yearning for companionship, love, and intimacy is no less compelling for persons living with disabilities."

I've always believed that, always. Always. I have presented on that fact at conferences. I have commented on this on radio programs. I have written about that in books and in articles and in columns for newspapers. But to hear it said so clearly and plainly in a courtroom, to hear it said in a judgement, in a ruling, was incredibly powerful.

Then, and this is the part that took my happiness to such a ridiculous level. She quoted from the Supreme Court Ruling on 'Gay Marriage' saying marriage: "rises from the most basic human needs; marriage is essential to our most profound hopes and aspirations."

Those thousands of protesters on the street, demanding the right to love, probably didn't think of the implications of what they were fighting for. They probably didn't think that the judgement made would effect the life of one man with Down Syndrome and one woman - the one that he loved, but it did. It really did.

But then civil liberties work that way, don't they. They don't stay neatly confined in a box. They reach out and affect other communities, bringing ideas, and perspectives, and courage, and change. The work for justice here, will bring justice there. The fight against oppression here will bolster the fight against oppression there.

The man at the centre of this, not named, is a hero. He testified at the trial. He spoke of his love. He stood against his family and for his rights. This is a difficult thing to do. But in doing it, he did something huge. He fought a fight that was not simply for his right to love, his right to marriage, he fought a bigger fight. One day others will benefit because of the precedent set here.

And he won.

There will not be crowds cheering in the streets.

But there is wild cheering in my mind and in my heart and in my soul.

Will LGBT people ever know of this victory? Will they know that their fight brought light to a dark place? I don't know.

I am going to send this to a man I know who was a leading proponent of 'Gay Marriage' here in Canada. He has a right to know. And he may know who to tell.

Me?

I'm telling you.

Two Men, Two Chairs

The last two days have been wonderful! It's warmed up, and Joe, who has lovely legs, is back in his shorts. Even though I've been tired after work, we've gone out each and every day. How often do you get 20 degree (C) weather in the middle of November in Canada?

Yesterday we met two very different men, both in big power wheelchairs like I use. The first was a guy in the bookstore that we were in. The one I mentioned yesterday when I wrote about my fellow customer approaching me. This guy's chair looked like a lounge chair on wheels. He looked so COMFORTABLE!

I was heading northwest and he was headed southeast. There was a woman standing at one of the computers looking something up. When done she looked a little bit startled to see me coming towards her from one angle and him from another. His voice came out as if it was manufactured in a gravel pit, "We're out in force and we have you surrounded!" he said, and then laughed. I broke into a grin as well. The woman at the computer got into the spirit of the thing and said, "I am captured!!" We all, then laughed, and went on our way.

Really pleasant guy.

The next fellow was also in a big chair and he was waiting at the elevator. I pulled up beside him. I had seen him push the call button and knew, of course, that he would be next in line for the elevator when it came. But, I was in a bouncy mood after the fun in the bookstore and I said, "I'll race you to the next one when it comes." He scowled. I got it, I intruded into his space, I said, "Oh, sorry, just joking around." We all waited in silence for the elevator to arrive.

When it did he got in, spun his chair around to face us. He screwed up his face and spat out "I'm not one of you!" as the door closed.

Oh. My. I wasn't exactly sure what he meant, but I'm thinking that he maybe meant he didn't identify as a disabled person and didn't want associations with one, even for a moment.

There are all sorts of ways to deal with disability. In all my rides on the bus, in all my random meetings on the street. I find that those who have identified as having a disability and are 'out' with it, just seem like happier people. This isn't scientific, but it just makes sense.

Here's to being happy, to being out and to living within identities that you have come to be proud of.

AWFULLY big book

Photo Description: book cover for 'The Alexandria Quartet' by Lawrence Durrell with and introduction by Jan Morris

"That's an AWFULLY big book!" she said to me smiling. Her tone suggested that I'd picked up something I shouldn't have and needed to put it back. The book, The Alexandria Quartet, is big, that I grant you and it's 900 pages is daunting, but it's next on my list of books to read. The bookstore had only a couple of copies and I'd been reading the back of the book when she spoke to me. How she thought that the book ended in my hand by accident, I have no idea.

I said to her, patiently, "Yes it is an awfully big book, but every now and then, I find, it's good to settle in for a nice long read."

She looked at me startled, "Oh, I'm sorry, I thought you were ... " Then she was lost for words. Or, perhaps more accurately, she didn't want to use the word that finished that sentence.

After a moment's pause, she said, "I shouldn't have spoken to you in that tone of voice," and then she caught herself again by continuing, "it's just that I thought ..." Stuck again. Another unfinished sentence.

"You thought I had an intellectual disability, although you may have used another word in your head, but I don't. But I can tell you this, no-one likes being spoken to in that tone of voice. Not me, not people with intellectual disabilities, not children .. no one."

I'd have been fine if she left it at that and headed off, but she didn't.

She said, "But ..."

And that's as far as I let her go, because there is no 'but' here. It doesn't matter what she thought. It doesn't matter what she intended. The only things that mattered is that she felt that disability gave her permission to speak to me in a tone of voice that NO ONE likes or appreciates. NO ONE. The idea that there is a tone of voice that is reserved for people with intellectual disabilities is patently ridiculous. Patronizing is patronizing. Offensive is offensive.

"There is no 'but,'" I said, "you made two assumptions, one about me and one about how you are allowed to speak to the person you thought I was. Both are wrong. Just apologize and let's move on shall we."

"You don't have to be mean," she said.

"I'm not mean, I'm not bitter, I'm just interrupted and insulted - typically people apologize for that, if you are above apologizing to someone with a disability, then please, just leave me alone and go about your business."

"I'm not above apologizing to anyone, but I won't apologize to YOU!"

"I'm good with that, I wonder if you will still be this evening at around five."

She hadn't left, so I did.

I went an bought my AWFULLY big book.

Sometimes they need ....

I was riding the bus with this rough and tumble guy who I've ridden with before. He's a cool dude, and, trust me, dude is exactly the right word. He's big like me. He isn't shy about his size, or his disability, or speaking about the prejudice that he experiences. It's no surprise, then, that we get on well.

He was telling me about his scooter. It's a big machine and he's proud of it's power to get him around. He takes very good care of it. He also uses a walker, but only for very short distances. He was telling me about a recent trip to the hospital wherein he and his friend, who's been with him on each ride, went for a coffee at Tims.

He told me that a woman, sitting at the next table, asked him about his scooter. He showed her the various features of it and, "I let her know I was proud of it and of how I kept it. This thing is cleaner that I ever am!" She asked him how much it cost and how he came to pay for it.

He thought the question was a bit personal but, "Well, I'm a talker." So he told her what he knew about the scooters cost and about the funding that paid for the scooter.

"You know what she said to me?" he asked.

I said that I could only imagine.

"She said, 'Why are you so proud of the scooter? My tax dollars paid for it.'"

He said he got mad and said, "I worked for thirty years, MY tax dollars paid for this. You got kids?" He said his tag on question caught her by surprise and she said that she did.

"Well, I paid school taxes my whole working life and I didn't have kids. I'll have my money back now please. Tens and twenties will be fine."

"That shut her up," he said.

Then he paused, "Sometimes they just need shutting up, not education, not understanding, just shutting up."

I nodded, because of course, I agreed.

DSP (Direct Support Perfection)

Photo Description: A large clock fack with a person wearing a white helmet is adjusting the minute hand.

This morning hit me like a hammer blow.

I think it's because my body has been through several differing time zones in just a few days. From being adapted to the time in Edmonton, switching to Eastern time was tough but then a couple days later going through the switch in time with turning back the clock. I woke up, after a decent sleep and just couldn't move. I was 'zoned' out.

Joe was up and doing fine so I asked him to let people know that I wouldn't be in to work today. I felt horrible. Just horrible.

I got up and sent out the newsletter, let this be the announcement that the November issue of Service, Support and Success has been released and you can get a subscription by emailing me at dhingsburger@vitacls.org, and answered a few emails. I wanted to be up to date.

But I had the luxury of making that decision. Of knowing that I wasn't well and that my mind was foggy and my body wasn't adjusting.

While doing emails, an 'all staff' email came through alerting, surprisingly, 'all staff' to the time change and reminding everyone that they may need to be a little more patient as everyone adjusts to it.

I was immediately struck at how kind the email was. We need to be reminded, on occasion, to be alert to, changes, large and small, and of the effect they can have on people.

Even though I was tired, and even though I was suffering from 'zone-itis' myself, I smiled when I saw the email.

Let me take a moment just to say that I think that direct support professionals can be some of the nicest people in the world!

Awareness + Kindness = A Woman In Edmonton

Photo Description: A group of words around the city name, "Edmonton" these words are thought to be reflective of city in some way.

We pulled into the disabled parking bay right at the door to the entrance of the conference facility. It was perfect getting a place so close, both for the obvious reason and also because Joe had a big suitcase full of books for the book table he would run while we were there. Just as we were congratulating ourselves on the spot, two men along with a woman came out of the building, it was clear they were attending the conference that I was presenting at. They came round to stand right in front of our car where the hotel had put an ashtray for smokers.

Shit.

I don't mind being up in front of people and talking, although it still makes me really, really, nervous to get up and speak, but I DO mind circumstances turning me into a circus freak. I am not alone in noticing, as a disabled person, when I say, it's an odd thing that some non-disabled people really enjoy watching disabled people get out of cars. Now these three came for the purpose of smoking, not watching, but then it would be just natural for them to form an audience.

What to do?

I was about to ask Joe to move us to a more private spot when the woman saw the wheelchair come round to the side door of the car. She quickly scanned the scene and saw that there was another ashtray on the other side of the door. She spoke quickly to the two men who were with her and indicated that they should go over to the other side. They looked a bit confused at first by her request and then, on realizing, followed her over to the other side of the door.

We now had complete privacy. I got out. I got into my chair and Joe and I both said at the same time, "No one has ever done that before!" I rolled around the side of the car towards the entrance and then made a decision. I turned and rolled over to where they were standing. I told her that I really appreciated her act of both awareness and kindness.

Then we headed in.

It was a great way to start the day.

Kindness matters.

The Line Up

Photo Description: An empty, three wheeled, airport luggage cart.

I was in the line up yesterday, at the airport, to check bags and get boarding passes. Joe was returning the rental car and  I had been waiting for him to get back. The line up was long and I decided that, given that it takes a bit of time to check in, wheelchair and all, I'd get in the line up and hope that Joe got back before I reached the front of the line.

The baggage cart was loaded down but I was easily able to push it, then me, it, then me, it, then me. I joined the end of the line and slowly, not more slowly than the movement of the line, moved up as space became available. There were people now joining the line behind me.

A conversation started between a mom and and dad and a young teen girl. Mom suggested to Dad that he help me with the cart. Dad said that he thought I was doing fine on my own. This let to a spat about generosity and willingness to help out. Mom thought I was struggling with the cart, Dad thought I was doing fine.

We reach the part of the line up where I have to turn the cart around to head back the way we came. I can do this, have done it many times. I grab the cart, make the turn, grab my wheels and turn in behind the cart.

The argument is getting just a wee bit louder. The teen daughter, who I can see easily now, in fact I can see the whole family because I am now facing the way they are coming, looks up from her devise and listens to her parents argument over my perceived need, and how they both saw it, and a response to that need as perceived - leave me do it on my own or go help.

Daughters eyes flit from her parents to me.

I smile at her.

She closes her eyes in utmost embarrassment.

"He can hear you, you know!" she said. Her parents stop, look at her, then over at me. "If he wanted help he'd ask you. Jeeeeeeez!"

Dad says to me, "Sorry, you good?"

I say, "I'm good."

"Jeeeeeeez!!" daughter shakes her head again.

I may have a disability but she's got parents - to a teenager, I think that might be the bigger issue.

Needing Help Squared

I got on the elevator, alone. Just as the door was closing a young man stepped in and scooted beside me. I noticed him when going to the elevator, he had been standing with a small group of other young people, all of whom looked like they lived rough. A voice calls out as the door is closing, "Hold the elevator please!" I am by the panel so I hit the 'door open' button and a fellow gets on, slightly older than the youth, maybe early twenties, wearing a very nice suit. He stands for only a second by the younger man, sniffs the air for a second, reaches out and stops the door from closing. He says, "I'll take the next one." He gets off.

The door closes. The young man beside me doesn't react to the slight. He knows that he smells of booze and cigarettes and sweat. It's not a surprise. I don't react either, everything I can think to say sound, in my mind, as either trite or patronizing.

But then something great happened.

The door opened on the floor we were both going to. I pushed to get off, because I was in position to do so. My front wheels just wouldn't go over the small lip created by a slightly uneven landing by the elevator. I tried a couple of times. The young ;man stood listlessly beside me, simply waiting. No urgency on his face.

I turned to him and asked, "Could you grab hold of the chair and give me a wee push?" He was now alert. "You want my help?" His voice was incredulous. "Yeah, if you wouldn't mind." He looked at the chair and said, "What do I do?" I said, "Get behind me, when I ask, just push." He did as I asked, I put one foot on the floor to give lift and asked him to push on the handles as I pushed on the wheels. I was out.

I turned and said, "Thanks."

He turned away from me. Not wanting me to see.

He was crying.

The Answer to The Answer

Yesterday I wrote about teaching about bullying and teasing to people with intellectual disabilities and I mentioned a moment. After identifying reasons that I was bullied, the class had been struggling with this question:

I'm fat all the time and I'm in a wheelchair all the time and I'm disabled all the time, but I'm not bullied all the time. Why not?

In what I wrote I didn't give the answer that they worked so hard to get. There were three reasons I didn't write the answer, first, I'd written about this before - with answer included and didn't want to be repeating myself, second, I wanted to demonstrate - for those who hadn't read the previous post that it really is a hard question for people to get, third, yesterday afternoon I was going to talk about this question in my session on supporting someone who is being bullied and teased and didn't want to give the answer away here. So ... the answer.

People guess all sorts of reasons why I'm not bullied all the time. Yet no one has ever questioned the initial reasons ... when I'm asked why I'm bullied, everyone, disabled or not, accept that 'fat' and 'disabled' and 'wheelchair user' and any other attribute to be almost self evident. When in fact the answer gives the lie to that. The reason I am teased only some of the time, not all the time, means, in fact IT CAN'T BE ABOUT ME. Because if it was, teasing would be constant.

The reason I'm not teased or bullied all the time is because, very simply, the times I'm not bullied are the times that a bully isn't there.

Bullying happens because of bullies.

Bullying doesn't happen because of difference, or disability or perceived weakness. Bullying happens because bullies bully.

This might not seem like a big revelation but in fact, to many who have experienced bullying, who have identified aspects about themselves as being the REASON for the bullying, this is huge. Because the reason isn't anything about who you are.

When I ask people, "What's the greatest single predictor that you will be sexually assaulted?" A lot of people identify, gender, clothing worn (!), time of day, place you are ... all things that the victim might be doing.

The answer?

The greatest single predictor that you will be sexually assaulted is ... nearness to a perpetrator.

That's it.

We look for behaviour or attributes of the victim to blame when the blame lays elsewhere.

What's the greatest single predictor that you will be bullied?

Answer?

The greatest single predictor that you will be bullied is that there is a bully nearby.

I've always loved watching audiences of people with disabilities get this, really get this and really take it to heart. They finally can stop being angry at themselves for the behaviour of another.

I've always loved the effect that this has on me, as a teacher or a trainer, because ... simply, I need reminding.

The Answer

Joe and I came into a room that was nearly empty but, once we were in and settled, it began to fill quickly. It was to be a training session for people with intellectual disabilities on bullying and teasing. Joe began his work of preparing the flip chart and arranging the furniture in the front of the room and I looked over my notes, took some calming breaths and listened to the room. You can tell a lot, as a trainer, simply by listening to the room. This one, as it filled with people, also filled with noise. Chatting and joking and positive energy has a sound of it's own. This room was a good one, it was filled with people glad to be here and glad to be with each other.

It began.

Huge.

Right away I knew the group was going to go with me and were prepared to learn and have fun. I know that the topics that I train on, with people with disabilities, are deadly serious: bullying and teasing; abuse prevention; rights and responsibilities. But I also know that people learn best when they are laughing, difficult topics can be broached if you bring in a sense of fun and of hope. These folks, they had both in abundance.

There are two moments that I wait for in the presentation, for different reasons. Let me tell you about one of them. It's the moment I ask the group a hard question. It's not a hard question for people with disabilities. It's a hard question, period.

Here is how the question arises, I tell the group that I get teased and bullied all the time (which is true), and then I ask them why I am teased. They were a kind group and didn't want to answer but eventually, they described my differences: I'm fat, I'm disabled. I'm in a wheelchair. I said that that list was true, I was all things, I tell them that I'm going to ask them a very hard question, here it is:

I'm fat all the time; I'm disabled all the time; I'm in a wheelchair all the time; but I'm not teased all the time. Why not? If my difference is constant, why isn't the bullying and teasing constant?

They begin with funny answers. "You are asleep in bed sometimes." "Sometimes the electricity goes out and no one can see you." But then, the work begins. They test me, to see if I just want them to guess a couple of times then I'm going to show off by giving the answer - and then they realize that, no, it's their job to figure it out.

And they took off.

They called out answers. The got close to the right answer. They got distracted and went in another direction entirely having good discussion along the way. They were enjoying having their minds work, they were enjoying being the generator of ideas and suggestions. They enjoyed playing ideas off on each other. They enjoyed side conversations about why it might be that I wasn't teased all the time. They talked about the fact that THEY weren't teased all the time and tried to figure out the difference between nonteased times and teased times.

All this went on at rapid pace. I got to sit there and listen, really listen, to them think, and reason, and figure, and joke and laugh and think again and reason again. A group of people who others think can't think and can't reason are doing just that, their words swirling around the room, their ideas slowly unwrapping the question to find the answer.

Then a woman at the back called out the answer.

The room erupted.

I didn't even have to say that she got it right. They had been on the path together. They had worked as a group, as a community, towards this. They got it, instantly when she said it.

|It was awesome.

Just awesome.

Because they got the answer.

And in doing so, discovered just how agile their minds were.

And in learning that, learned that society has lied to them about who they were. They had intellectual disabilities, true, but that didn't mean what they'd been told - that they couldn't learn, they couldn't grow, they couldn't figure things out.

A little later, the workshop was done. I shook a lot of hands, said a lot of goodbyes, and then Joe and I were gone.

But it took a couple of hours for the echos of the room in joyous uproar to finally subside.

Making Edmonton

2:30 AM

Sleepless.

Sick with worry.

2:45 AM

Joe stirs beside me.

I know he is asleep, but I have to talk to someone. I'm caged by fear. We are flying to Edmonton in the morning. I had rolled over at about 1 and somehow the anxieties snuck in through the cracks in my eyes. Moments later they were in control.

Every concern I had about travel, grew large.

Every fear I had about my disability as it related to travel grew huge.

Every anxiety I had about my weight as it related to getting up steep airport ramps doubled in size.

I couldn't push them away. I couldn't compartmentalize them. I couldn't line them up, anxiety by anxiety, fear by fear, and deal with them one at a time. They had formed a chorus, they stood on my chest and took my breath away. They got into my ears and made such noise. I was overwhelmed and I felt lost.

But then.

Joe stirred.

Joe has his own worries about our trips.

It was unfair to add mine to his when he, like me, needed sleep.

"You awake," I said, while anxieties screamed and fears howled for me to leave him sleep.

"Mm, gotta go to the bathroom."

I waited.

He's back, "What's up?" he asked.

And I told him. Everything.

He put his hand on my shoulder and said, "It will be fine, you know it will. Now go back to sleep."

I felt the warm of his hand on my shoulder begin to drive the cold fear away. Anxiety took a few more minutes. And, as I waited for them to be fully gone. I fell asleep.

I'm writing this in Edmonton.

Snakes on a Cake: The Whole Story

Some stories take a bit of telling. So, as I want to remember this for a long time, I'm going to take the time to tell it all.

The Back Story

Joe hates snakes. Those three words don't convery his aversion. If he's flipping through a magazine and accidentally turns to a page where there is a snake, he screams. If we're looking through channels and come on one with snakes, he screams. If we're watching a show or a movie and a snake comes on, he screams. If a movie scene with snakes is long, he covers his face looks away and whispers, 'tell me when it's gone.' Which I do.

This has struck the girls funny ever since they learned of it. And them trying to scare him with a snake has become a kind of tradition. Joe loves it. So, when birthdays come, he knows that there will be a snake drawn in a birthday card, or his name spelled with the J being a snake, or something like that.

Getting the snakes.

We were going to put snakes, hidden under icing, in Joe's birthday cake. My mission was to get the snakes. The whole thing almost came to naught because I couldn't get to the toy store. The Dollar Store only had huge snakes that would never fit on a cake. The clerk, who had shown me where the snakes were, said, "You want it for a birthday cake?" with horror in her voice. "Yeah, cool, huh?" I said. So I went over to the mall that has the toy store and found my way blocked by construction, could not get from one side of the mall to the other. I had to go up, and out, and down to an entrance without a door opener and down to that elevator. This was the point at which it almost fell apart, the elevator over there is broken down  more than not, it was raining, did I want to go. I went. It was a struggle to decide, but I went. The toy store found me the snakes, the woman who helped me find them, said, "Snakes in icing, awesome!" I almost invited her to the party.

The Preparation

Mike is much better at doing decoration so he and the girls took over the kitchen. I had made a cake, but we had, for this instance, bought cans of icing, both vanilla and chocolate. They were in there working hard. Every now and then one of the girls would come out, look at Joe, and laugh. They'd go back in and go back to work. Joe looked at me like, "What's going on?" He was suspicious. The cake looked beautiful. The snakes were hidden in the brown icing that formed the heart.

Photo Description: Cake iced with brown and white icing with yellow candles and multicoloured sprinkles. Ruby's toes somehow got into the picture.

The Moment:

The cake was brought to Joe to blow out the candles and then cut the first slice. After the candles were done, he started to cut and the knife came into contact with one of the rubber snakes. He said, "What's this?" and touched it and pulled it from the icing, letting out a piercing scream! The girls, and the rest of us, found this very funny, as did Joe when he got over the shock. Suddenly everyone was talking and laughing about the cake. They told Joe that there were two more snakes hidden in there and every time one got pulled out there was more screaming and more laughing. Finally, the snakes are out and the girls are beginning to lick the icing off them. When ...

Photo Description: Ruby holding an icing covered snake up in front of Joe, predictably screaming and Sadie licking the icing off the snake in her hands.

What Sadie Said

The laughter and the talk of the snakes in the cake went on for some while and then finally, in a moment's quite, Sadie's quiet voice asked, "Is this real or is this a dream?" I turned to her and said, "It's real, Sadie, it's real."

I guess for her the moment was so perfect but so odd that she had to check it out. She was tired from laughing and the scene - one of snakes on a cake was the kind of scene not usually part of everyday life.

She was right.

It was one of those moments where life had interected between completely perfect and a bit bizarre and it was a bit dreamlike.

What Joe Said

"Between the snakes and the screaming and the laughing," that was, without question, the weirdest and best birthday cakes I've ever had."

A Gift from the Universe

I got home from work and we headed straight down to the grocery store. Joe had decided that he wanted bangers and mash for supper and that he wanted to eat them while watching either Poirot or Midsummer Murders on Netflix. Then. He wanted to go to bed. We're both really tired from the travel. It sounded like a perfect birthday for an elderly gent.

At the grocery store we quickly found what we wanted, picked out a very small birthday cake, a bigger one will be made today with the help of two little girls who have their own idea of what a 'Joe cake' should be like. He went this way in the store, I went that way, we met in the middle, with bangers in one hand and a bag of mash in the other. We were good to go.

We stopped and checked lottery tickets, picked up a few more, and then were on our way home. All the way there we chatted about our last trip, our upcoming trip and about things that were happening this weekend. We are all going up the tower on Sunday for lunch. It was an easy time.

As we sat down in front of the television to watch Poirot work his way through a mystery, it felt nice. To be home. To be together. And just to be having a relaxing time on Joe's first night of birthday celebrations.

I asked him if he was having a good birthday. He said that it was perfect, that he loved my gift, (lemon curd) and that just being at home, and us eating comfort food together was the best way he could imagine spending the day.

Later he said that he thought the universe had given him a gift. "Did you notice," he said, "we went shopping when it was very busy, we don't go on Friday because it's so busy, and there's no blog to write. Everything was just fine we were just like two people together shopping."

"That," said I, "is the perfect blog post."

We laugh a lot.

Joe!

Photo Description: A portrait of Joe Jobes.

What do you say when everything has already been said about someone else to someone else? What do you say when words, meant deeply, sound trite? What do you say when you want to say what Hallmark says but in a way that they haven't - and can't?

I am lost for words.

Today is Joe's birthday.

He turns 63 today. For a couple of months he is older than me. He the old man, me the arm candy. He who dotters and me who wipes dribble. I pamper the Pampered. Yep, it's a fine couple of months. Speaking a bit louder. Engaging more patience. We play on every stereotype that we see in ourselves in our transition from boys to 'men of a certain age.'

People who meet him know he is a kind man, with a ready laugh, and a genuine interest in elevating the mood and the feel of an interaction.

People who see us together can see that his care of me is both gentle and respectful and still, after 8 years of disability, loving. I add that in about disability because the change for me from walking to rolling was enormous. The change for him was equally so. Everything changed all at once.

I am lucky.

We are lucky.

We met at 16 and I was there for his 17th birthday party. A much different affair than we've planned for tonight. We've just got home from a long trip and about to leave on another. We're going to stay home and fall asleep by 7, maybe 7:30. Dinner? We haven't decided. It doesn't matter. It will get figured.

We're going out with the kids and family on Sunday for lunch up the CN tower.

But, I'm writing this because I need to be writing something. I want to write something about the man that Joe is ... the man I watched him become.

He is stronger than people think he is.

He is smarter than he ever lets on.

He is deeper than his laugh would let you believe.

He is just simply a fine and decent person.

Oh. Let me say that again.

A find and decent person who is way, WAY, older than me.