Friday, April 29, 2016

It's time!

Image description: Three suitcases wait while yelling happens above them.
We go back on the road today, a trip that will take us eventually to the Maritimes, and we're busy getting ready. Things are packed. We haven't ticked 'yelling at each other' off the list of final preparations yet but I'm sure we'll manage to get it done at some point. The stress of both making sure we are fully prepared with all we need combined with the worry about accessibility and, of course, the ability to pee when needed during our journey.

I've reacted to this 'leaving' differently than I have in the past. I always like going out for a bit after work in my power chair just to get some air and to wind down from the work day. It's also nice, after being in my manual chair, to have real, actual, freedom of movement. But, this time, I've chosen for the last three days (3) days to stay in. Once was because we contacted friends about going out for tea and they weren't able to make it, so seconds later, I was in my housecoat.

Maybe it's that I've burrowed in the the accessibility and predictability of my home. Here I don't have all the worries that I have about all the other environments that I will call home for a night or two. Maybe I just wanted to really enjoy things I can't typically do at a hotel, like sit in a tall chair, the low chesterfields are not made for me, or be in a bathroom with the grips set exactly right, or have the right amount of space for my wheelchair to turn when I'm at my desk. Those little things which make home home and which make my disability feel as at home as I do.

But, we've got challenges ahead of us, I'm doing, count them 4 new talks on this trip. Two for self advocates and two for staff. I've been hunkered down writing them, and now we'll see how that went. I felt it was time to challenge my brain and, let me tell you, it has been challenged. But that's all done now.

Today we leave.

We're packed.

All that's left is the yelling.

Thursday, April 28, 2016


Image description: Line drawing of a 'Certificate of Gimp Status' made out to Dave Hingsburger and dated 2016
We opened the letter from the government expecting my tax refund cheque. Instead, we got a letter stating that I had to reapply in order to continue in my tax status as a disabled person. I was directed to the form that the doctor needed to fill out and advised that if it cost not to expect the government to pay. OK. I guess perhaps they expected that somehow my disability disappeared and they wanted confirmation that the wheelchair under me was still real and if it was real it was necessary.

Now, let's be clear. I know I have a disability. I know that my status as a disabled person is real. I knew that my doctor would fill out the form and I would send it in and that all would, hopefully, be well. But even knowing that, going through the process, (spoiler alert: I'm still disabled) was intensely unpleasant. I'm not sure why.

I'm not sure the issue was even with the government asking me to send in new information from the doctor. Instead I think it's the atmosphere that I feel, separate from the government, from those who just assume things about me and those like me ...

... that I'm lazy.

... that I could walk if I had the motivation to.

... that I don't contribute.

... that disabled people like me are a drain on the system.

... that I need to live under the scrutiny of others to ensure my life has no fun or feasts or frills.

... that disability needs to mean poverty of mind, spirit and pocket so that it is duly punished.

... that I am a member of a community of fakers and cheats and scroungers.

I know who I am. I am proud of the disabled community. I know that these attitudes stem from bigotry and fear and even hatred. I know that.

I do.

But the pervasive attitudes towards disability, attitudes which have hardened over the years as people have identified those with disabilities as part of the problem, are so intense that I find myself feeling as if I need to explain to everyone, not just the government, who I am and why I am and how I am. I feel I need to defend myself in some vague way from some vague but deeply frightening adversary.

I now have my medical certificate certifying me as a real disabled person. I guess that's, for me, a signal that the battle continues.

Wednesday, April 27, 2016

The Skin of Children

Image description: a line drawing of a forearm receiving an electric shock

So there is finally movement in the fight towards the banning of the use of electric shock as a 'treatment' option for children with disabilities. I have read a lot of response to this announcement. A lot of, forgive me, shock. A lot of outrage. A lot of people waiting with bated breath to hear if the ban goes through.

And then there is skin.

Still being shocked.

The skin of children.

is being shocked.

While we wait. While people have meetings, with coffee and muffins, to decide if they will ban this 'therapeutic procedure' They will look at evidence and hear arguments, weigh public opinion and write reports.

The skin of children.

Is being shocked.

It astonishes me that proponents talk about the studies, evidence based reports, that show the effectiveness of shocking ...

... the skin of children.

And it astonishes me further that people can read a data chart and see every data point that shows exactly when and with what power a shock was given to ...

... the skin of children.

No one asks the right question. How could it be that we came to shock the skin of children? What kind of distorted thinking made the idea possible? A procedure that would be considered cruel to use with animals was acceptable to use with children. Who said, first, Hey, let's shock ...

... the skin of children.

The answer is easy. 'Children' never entered into the discussion. Because humanity is denied to the different the word 'inhumane' isn't seen to apply. You can not be inhumane to that which is not human. You can be inhumane to animals - but as you know there are bioethics professors who believe that killing a cat is a more serious crime than killing a baby with an intellectual disability.

They shock the skin of children.

And we're still talking about whether or not this is acceptable practice.

People are fighting in order to continue to be able to shock ...

... the skin of children.

This is the world we live in.

This is the world that the disabled know.

The one that would shock the skin of our children.

Monday, April 25, 2016

It Would Be Nice

Image description: a line drawing of a theatre aisle with one space marked in red with the wheelchair symbol. the word choice is written in capital letters followed by a question mark underneath.
We went to the theatre yesterday to see Disgraced which was playing just down the road from us. To get to the 2:00 pm show we left the apartment at 1:45 pm and were there in plenty of time. Really no excuse not to attend. We've been to this theatre many times before and know that they have exactly two wheelchair seating spaces. One on either side, right at the very back. Last row, aisle seat, that's it. Forgive me for saying what I know I should be saying, it's an old theatre and I'm grateful that there is any seating at all. Since it's a small house, the very back row isn't that bad a seat even though it's the worst in that particular theatre.

It took a bit to fight through the crowds to get past the ticket takers. It's jam packed with people lining up to pick up or purchase tickets blocking those who already have tickets. But we move slowly and steadily and suddenly, we're through the gate. We make our way into the theatre itself and an usher is standing handing out programs and telling people where their seats are located.

I approach him, he's very young and very friendly, and he takes my ticket saying, "Let's see where you are sitting." I start laughing. He looks at me quizzically. I say 'Did you really say that?" He's still confused. I explained. "You may be trying to create the illusion of choice and options but you know, don't you, that there's only one spot here in the theatre for me to be." He said, "Well, yes, but it would be nice if there were choices, wouldn't it?" I conceded, it would.

It would be nice if there were choices, wouldn't it?

The play was gripping and from the moment it started I was taken in by acting and the story and the dialogue and I reveled in watching what a daring script come to life. Joe and I spent a lot of time talking about the play, which we had managed to see only because they extended it's run by a week. But once I got home it was the question of the usher that stayed with me.

Particularly because I understand what it is to have limited choices and to become, if not used to that fact, less outraged by it. I worry about the fact that I can habituate to something that once caused me such stunning anger. I worry that that I've gotten worn down and now when I say, 'you've got to choose your battles' I realize I'm not choosing certain battles anymore, I've given up on winning.

But moreso, for those of us who are sometimes in charge of choices, parents, direct support staff, agency decision makers, do we always think about the importance of choices, real choices in the lives of the people we serve. Do we understand, like I have come to, the importance to having choices as a quality of life issue? Do our own vast number of choices become invisible while the meager choices of the people we serve, particularly the inconvenient ones loom large in our minds. Do we see 'choice' as something we give rather than something they have a right to expect? Do we see 'choice' as something that we need to control rather than something that we need to make happen? So we see 'choice' as a challenge to our right to rule?

It would be nice there there were choices, wouldn't it?

Sometimes the dialogue we need to listen to, doesn't come from the stage.

Sunday, April 24, 2016


Image description: A power wheelchair wheel encountering a stepplette.
I discovered a phenomenon yesterday that I don't think I've actually either seen or understood before. It had me thinking and rethinking about why people do what they do and act the way they act. We had gone out for some fresh air and sunshine. No particular destination, we were just in the mood to wander. As such we came upon a place where we thought we'd stop in for tea. I'd done the accessi-glance and seen that it could be accessible.

Could be only because the accessible door was blocked with stuff that had been pushed aside because people were coming in through the space left when a huge sliding window had been pushed aside. I couldn't go through the same way because, while the door was ramped, the window was not and there was a small step up for two-footers which was an impassible barrier for me in my chair. To make matters more complicated, we discovered that the accessible door had not been unlocked.

Someone from inside came, upon seeing Joe struggle with the door, and inform him, and me, that we could enter through the window. I chimed up and said that I couldn't get in through the window. I think they thought I meant that the space wasn't wide enough, the fellow assured me that there was plenty of room. I told him that I realized it was wide enough but I couldn't get over the step. He looked confused. So did a fellow standing with his wife out on the sidewalk smoking. He entered first, she second, they both informed me that there wasn't a step there.

OK, maybe 'step' was the wrong word because it certainly wasn't a regular sized step. It was a 'mini-step' or a 'steplette' perhaps. Nonetheless, it was perfectly obvious that a wheelchair couldn't get over the barrier, whatever it was called.

And that's when it hit me.

"Perfectly obvious."

I sat there, deep in realization, as now three people tried convincing me that the window was accessible and that I should just ride right in. They didn't see it, it wasn't obvious, to them there was no barrier and they didn't know how to look at a barrier as would be experienced by anyone else. This is why people always say, it wasn't until I 'had to use a wheelchair' or 'pushed someone in a wheelchair' that I saw barriers. They don't see what they don't need to see. Finally, Joe made a joke about my chair not being equipped to go 'off-roading' while pointing at the step-cum-lip that they saw it, as if for the first time.

Perhaps this is why they get so annoyed with us disabled folks because we keep talking about things they can't see. We keep pointing out obvious things ... I once wrote that we 'point out the obvious to the oblivious' ... but I think I may never have been more accurate. They actually can't see what we are talking about, they can't abstract our words into pictures. To them, who have access pretty much everywhere, it seems like carping and complaining and kvetching.

When they saw what the issue was, people were quick to help, and apologetic for being completely unaware of the barrier that was posed by the window opening. The manager promised that the door would always remain open and clear. They wanted to be accessible and had thought they were.

We got in, had tea, and exited through the accessible door easily. Getting out was a helluva lot less dramatic than had been getting in. And, I can do with less drama.

Wednesday, April 20, 2016

Around The Corner

As it happens with conversations, they take twists and turns, and suddenly I find myself talking about diversity and difference with Ruby on our way back from an afternoon at the museum. This isn't a topic we talk about a lot, but it's one that Ruby has clearly thought about. She started by saying pretty much what everyone says, "If everyone was the same, it would be so boring," but then she added a Ruby twist, "it would be like every time you came around a corner you'd run into yourself!"

That struck me funny.

I had two thoughts. First I wondered if that actually happened, if I went around a corner and ran into myself, would I like me? I really hoped I would, but can you ever be sure. Being able to see yourself, as external to yourself, would be an odd experience, and maybe not a pleasant one.

The second thought I had was ... oh, my, I think that maybe people do want that. Maybe that's why appeals to people regarding comfort with the familiar and discomfort and fear with the unfamiliar are such politically strong messages right now. Stranger / danger - an abuse prevention strategy that entirely misses the mark, has now morphed into an adult version for those who fear immigration, group homes in their neighbourhoods, changes in laws which expand our legal understanding of diversity.

Do people want to run into themselves and others like themselves around every corner? Ruby clearly stated she'd find that boring. But then she likes diversity and doesn't fear difference.


I do like turning the corner, every now and then, and running into another wheelchair user. I do like the experience of sharing experience with even a passerby.

But not always.

Not every time.

Because, it would get boring after a while. I mean walkers are walkers and always will be but they do add a different look what with their different way of loping down the street. So they eschew the elegant roll ... I'm OK with that. I tolerate their difference well.

So who do you want to meet around the corner?



Tuesday, April 19, 2016

When Mom Pushes

Image description: head and shoulder shot of someone sitting in a wheelchair wearing a tea shirt that says, "My Mom Is My Pusher"
Yesterday I wrote about speaking with a young disabled boy waiting outside the elevator from which I was disembarking. I made a comment about his mother not rushing forward but allowing the interaction to happen, I also said that I could write a blog about that alone but would not. Well, I changed my mind. I'm going to. When I kept coming back to that moment in my mind, I thought of him and his enormous smile but I also thought, every single time, about his mother. I had no interaction with her, I spoke only with her son, but my respect for her grows every time I tell the story.

I love the independence of my power chair. When I say that, I'm not just talking about getting to where I want to go without depending on the help of another person, I'm talking about the power to stop, the power to wander, the power to indulge my curiosity, the power to change course, the power to go back and check something out. Joe is very good at helping me when I'm in my manual chair and need a push. But Joe and I are different people, I am a shopper. He is not.

When we are out and in a store and he's pushing me, he typically is aimed at getting where we are going using the quickest possible route. It's hard to communicate with each other, I'm facing forward and he can't hear me easily, he's talking behind me and is difficult to hear. If I want to stop, I often have to grab on to the wheels and give resistance so that he knows to slow and stop. We still, after 8 years, struggle with how to do this well. Please don't see me as being critical of Joe here, I'm not. He's wonderful and helps without complaint. But the relationship of pusher and pushee is fraught with all sorts of issues.

For the boy in the wheelchair yesterday, speech didn't come easily to him, words took time to form and fill with breath. If he wanted to see something, he might be well by it by the time he spoke. For his mother, or anyone, to push him, and do it well, a partnership needs to develop and a clear understanding of expectations need to be laid out. I often run into people waiting to push someone onto an elevator, most often a baby in a minivan sized stroller, sometimes someone in a wheelchair. Almost always, there is the race for the door as soon as it opens and a foot tapping impatience as I get off. Then the rush past me as soon as there was room.

It's natural.

I do it too.

Elevators come, typically a few minutes after being missed yet people treat it like they've missed the flight to Cairo.

But when I first greeted the boy in the chair, everything changed. Mom must have fought the natural urge to get on the elevator and allow her son a moment to chat with another chair user. And the fact that I was another chair user means something too, that she saw me as part of his community, not something to be avoided because 'you are just like everybody else' and 'you should only have friends without disabilities.'

So kudos to good pushers, who know how to give support without taking control. And kudos to Moms who have learned early to see opportunities when they happen.