Monday, May 02, 2016

Early

Image description: The sun as the head on the 'wheelchair' symbol with the wheel turned into a clock showing the time 10:55
We are staying at a hotel directly across from a small mall that has a lovely movie theatre attached to it. When we got up we checked movie times and decided to go see Keanu, a comedy about crime and cats, which was playing at 10:55 AM. We love going to movies early, so we got ourselves ready and strolled over eagerly anticipating the day ahead of us.

We entered the theatre at a side door, I like the theatre and all but am always a little annoyed when the disabled access doors are not the same doors that everyone else goes through. But, at least they had the push button and the doors open wonderfully wide, so, thought I won't be grateful, I'm at least glad. We ride the elevator up and approach the doors that go into the cinema itself. Pushing the button, we find nothing happens. Perhaps we are a bit early, so Joe tries the doors and they are indeed open. He pushes the button on the other side of the door, we've discovered that sometimes one is broken and the other one not. It doesn't work either.

It's not hard to figure out what's going on. We learned from a store we shop in regularly back home that the accessible buttons have to be turned on. We've also learned that people often forget, when they are unlocking the doors for everyone else, to turn on the accessible door pushers. In fact, Joe knows where, in the store back home, the turn on switch is so now, instead of seeking someone to do it, he just does it himself. So, we figure, the buttons have been forgotten and need turning on.

I make this my duty, other disabled people will be coming, and the doors are heavy, I'll make sure the buttons are turned on. I would not be able to get through those doors without Joe's help when the buttons are off or down. I tell the guy selling us tickets but he's sullen to the point of hostility, and refuses to listen to my request. That's OK, he's young, he's not happy to be there, at that age I've been him. I seek out another person to tell.

When I tell her that the buttons have not been turned on she says the weirdest thing, "Yes, it's probably because it's still early."

What?

I said, "But I'm here. Doesn't that prove that disabled people come to movies at the same time as everyone else?"

She looked like I'd attacked her, I hadn't yelled, I was still in chat mode, then I recognized the tactic, turning me into a hostile, bitter, out of control, cripple. I said, then, softly, "If you could just ask that they be turned on because they are big doors and difficult to manage on your own."

She brightens, "I'll do that for you."

|Now it's a favour she is granting.

Whatever.

When we leave the theatre, the buttons are working and all is right with the world.

For the rest of the day whenever one of us said, 'I wonder why' or Why do you think' the other responded, 'because it's still early.'

The things they say to us.

The things they say.

Sunday, May 01, 2016

I'm Public In Public

Image Description: Person in power wheelchair with arms up embracing the space around.
Twice yesterday I had people grant me space that wasn't theirs to give and for which I needed no permission. It's an interesting kind of privilege when people feel that they are able to cede me the space I am currently using. It's interesting that those with privilege feel that public space belongs naturally to them and therefore they are the monarchs of all that is before them and can grant me entry into public space by their magnificent act of generosity. And. It irks me.

The first time it happened was on a broad, very broad, public sidewalk outside of a mall a several meters away from the door to a large anchor store. Joe had pulled the van up and set out the ramp. I was about to get in. We were using up maybe slightly less than a third of the space. A couple coming toward us, taking up, between them, a similar amount of space, and already, before seeing us, walking alongside the building, meaning they had no need to swerve or adjust their routing in any way, stops. They come to a complete halt as if waiting for me to get on the van so they can move again. I indicate that they can keep going, that there's lots of room. He says, "That's alright, we'll let you do what you need to do."

Let me.

They are going to let me.

They have the power to let me.

I didn't move. I wasn't in a rush. I waited, they passed by and said, "No problem mate." They acted as if I had thanked them for the generosity of their time and the granting of the public space that they had graciously given me. I hadn't thanked them, but they received it anyway.

I was in public space.

Public.

Space.

I am public. It's my space.

Then, later the same day, Joe and I are at our hotel. We are waiting outside the elevator. I've been in a wheelchair for 8 years and been alive for 63 years. For most of the time BW (before wheelchair) I knew how to wait for an elevator. I knew not to stand right in the door. It's a skill many have not yet learned, that people need to leave before one can get on. AW (after wheelchair) I move back so that people have plenty of room to move. I recognize that it's public space so I need to share that space with other members of the public. Again, a couple gets off, if they want too go left, they can, lots of room, if they want to go right, they can lots of room. They just get off and turn. But instead, they get off walk round behind me and then go left. They veered way out of their way, in order to say, "It's OK, we don't mind, take all the space you need." Then, at my silence, they said "No problem, no problem at all." They acted as if thanked. I didn't thank them.

I was in public space.

Public.

Space.

I am public. It's my space.

People with disabilities are not yet quite seen as part of the public, we are still visitors on outings. We are welcomed to space that's not seen as ours.

It's mine.

I claim it.

Space.

It's mine.

I claim it.

Belonging.

Saturday, April 30, 2016

BECAUSE

Image description: The words 'stupid' 'ugly' and 'pig face' surrounded by the colour of bruise place around a torso. The words 'no because' are pointing at the words.
Over the last week, culminating with a workshop I did with people with disabilities yesterday, I have noticed a phenomenon which I don't really understand and which frustrates me at the deepest level. It began innocently enough with a discussion with a colleague about issues which affect the lives of people with disabilities and as such the topic of bullying came up. In short order I was being told that I have to understand that bullies often have been bullied themselves and therefore, to an extent, their behaviour is understandable. Later, in the same conversation I'm told that bullies have poor self esteem and therefore put others down in order to build themselves up. Huh.

Then, in another conversation, this time with someone who is a trainer on the issue of bullying, I'm told that it's important to remember that the bully often expresses deep felt anger and rage through their behaviour because they have no other way of getting the excess energy caused by their feelings out. I must have looked less than convinced so I was further told that I had to learn to feel compassion for both the bully and the bully's victim. Huh.

Bullying is an interesting behaviour. We have somehow disconnected it from what it is, social or physical acts of violence perpetrated by one on another, and turned it into an understandable psychological phenomenon wherein compassion for those who hurt often seems to outweigh compassion for those who are hurt. In discussions about bullying, I realize, I hear so much more about the 'poor' bully than the 'poor' victim. Everyone seems to be racing to explain bullying by creating within the bully a psychological need to do harm.

Perhaps it's because we need the behaviour to make sense. Perhaps it's because we often talk about bullying in relation to children, conveniently ignoring that bullying happens throughout our lifetime by adults all around us.  We seem to want there to be a cause, which is why the word 'because' is so often attached to the word 'bully' ... he's a bully because, she engages in bullying behaviour because ... there must be a reason. We don't want to acknowledge the seductive nature of cruelty, we don't want to acknowledge that one person hurting another may happen simply because one person chooses to hurt another, we don't want to open our eyes to the fact that bullying may reinforce itself as a behaviour simply because it feels good. But none of this matters. None of this is what I want to say.

What I want to say is simple:THERE IS NO BECAUSE.

We need to stop explaining away the behaviour of those who commit violence and further we need to stop asking victims to feel sorry for their victimizer.

We don't do it with other acts of violence.

He beat his wife because work was really stressful and on the way home he got a flat tire.

She called her little girl an ugly fat slob because she was really upset when she learned that she didn't get the job she wanted.

He punched the waiter because he was tired of waiting, he'd spent his whole day on hold.

She kicked her dog twice, hard, in his chest because she was just tired of everyone being late for dinner.

THERE IS NO BECAUSE.

Violence is wrong. Full stop. I don't need to, I don't want to talk about it any more than that. I don't want to give those who hurt fall back excuses for their behaviour. I don't want people who are hurt by people who hurt excuses to make for the behaviour that they are experiencing. There is no because. Violence is wrong.

At the self advocate training yesterday, in discussing bullying, a lot of people independently brought up 'poor bully' statements about their self esteem, about their lack of education, about their past experiences ... What? Pretty much everyone in the room had acknowledged that they had experienced bullying and here they were saying what everyone says about bullying ... This what parents, shockingly, tell their children. This is what, astoundingly, staff tell the people they support.

IT HAPPENED BECAUSE.

But.

THERE IS NO BECAUSE.

A choice was made, hurt happened. I know lots of people who have horrible abuse backgrounds, I know that they would never, because of that experience, hurt another person. Having been bullied oneself isn't an excuse for bullying it's cause for enlightenment about bullying isn't it??

It saddens me that we ask those who are victims of violence. Remember bullying is violence, it's not a rite of passage for children, it's not a psychological phenomenon caused by stress, it's violence. It needs to be seen as a choice that someone makes, it needs to be seen as being, simply ...

WRONG.

Because there is no because.

OK?

There is no because.

And as a result those who are hurt by others who would commit violence have a right to be heard and have a right to be supported and have a right to have their feelings matter. Because, and here there is a because ... because they more than a punching bag for a 'because bully' ... they matter.

THEY MATTER.

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

Certified

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.