Saturday, February 17, 2018

Internal Alchemy

I was in a mood. Grumpy. Unhappy. Depressed. I think if Joe were describing it he may have used the word 'Unhinged.' He'd be right. Things that would have annoyed me simply enraged me. I felt put upon. I felt the world was against me. Me, a vegetarian, bit Joe's head off - that's how bad it was.

We got home. Instead of going in I asked Joe to pick up the gifts we picked up that needed to get wrapped and put in the mail to be sent off to birthday parties. He got them, along with scissors and tape and we headed over to the mall. I pushed myself up the slope into the place and then got to where we usually start our mall walks.

When Joe got in after parking the car, I asked if we could do a mall walk. We've been doing this a little less because I've changed in shape a little and now bruise my right forearm when pushing hard for long distances. But we both decided to go. My argument for going: I need to get my head right. Joe thereafter readily agreed. 

We had done our first kilometer, a full turn around the whole mall, and I wanted to do it again, I felt better, but no internal alchemy had turned feeling like shit into feeling like gold. So off we went again. It was about 2/3 the way through that the bruise that had formed on my arm in the first go round changed, the skin had now been broken. That's not happened before. But, I needed to do this, so I did. We finished the second kilometer and then headed down the elevator to do a lap of that level and stop at the store to mail the gifts.

First we had to pick the cards. then the wrapping paper. A group of young teen boys came round behind me and one of them, with shoulders wide enough to brace the door for a politician's ego, bumped into a display sending chocolate bunnies to the floor, and I swear they immediately started multiplying. I said to them, "Great you know they are going to blame the cripple right?" Then to their shocked laughter, I said, "Wait let me get my phone out and take pictures to prove my innocence." Now they knew I was really joking and they started a low rumble of the laughter of boys whose voices have only recently changed.

Then cards and paper in hand, we went to Timothy's for a tea and a table. There we wrapped the gifts, wrote in the cards, finished our tea and headed to put them in the mail. After that we continued the downstairs mall walk, it's much shorter than upstairs but by the time we were done, the break in my skin was really sore and I decided not to do a second round. But it was okay. I'd burnt out the flame. I was feeling better, both because of the push and because of the time focused on sending a gift far away with the wish of happiness and good will.

Turns out that for me at least, I can turn shit to gold through exercising the body and exercising the heart at the same time. Aerobics may make the heart beat faster, but loving makes the heart beat matter.

Thursday, February 15, 2018

VDAY

After work yesterday we parked at the grocery store and went in. It was time to do Valentines Day. This is a day that Joe and I used to call "Heterosexual Pride Day" as we watched commercial after commercial about men and women and love and adoration. "Nothing says love like a diamond," we were told in dulcet tones and I would quip, "well, nothing except a day treated with respect." Our love, then hidden, chafed at the manacles that chained us to the closet.

Over time, we just came to ignore it.

Completely.

If I am found dead one February 14th with a Valentines Card in my hand, lock Joe up for murder because surely he knew the shock would kill me. We don't do Valentines.

At least, until Ruby and Sadie came into our lives. We were transformed into pinks and purples and princesses, oh my god the princesses, and, of course, Valentines Day. They love it! The cards the chocolate the whole messy thing, they anticipate it and explode with Valentines excitement. There are some forces where resistance is futile and a child's expectant face is one of them.

So, we went shopping for a card and a gift. We decided to forgo the chocolate this year and instead bought them each a mango, it's healthy, it's sweet and they like them. We got one for their mother too, what the heck once you start Valentineing it's hard to stop. We picked up cards, ones that weren't creepy when given by old men who are relatives - which were hard to find. But we managed.

Then we were off to drop the whole mess off at their home and to wish them all a happy Valentines Day. We got there just after the bus arrived and when they saw us in the driveway they literally jumped with excitement to see us. They hadn't known we were coming. That was their gift to us. And the cards were handed over, okay one red wrapped chocolate in each card, along with the wrapped up bag of mangoes.

We drove away tired.

I was just about to say "Happy Valentines" to Joe when he said, "Don't, I'm driving, you trying to kill us?!"

Tuesday, February 13, 2018

Waiting

Photo description: a bright red welt on the inner forearm

I am waiting to be assessed.

I desperately need a new wheelchair.

I no longer feel safe in this one.

But who will the assessor be?

I've seen the wheelchair I really want.

I've tried it out and felt like I was floating.

It fit me instantly I felt secure.

But will they listen to me?

I know the chair I want is expensive.

It cost twice as much as the care I bought at 16.

It is light and easy for Joe to lifet.

But will they value my opinion, will it matter?

I get bruised from using this chair.

I rub my arm against the arm.

It takes only a kilometer before the pain starts.

But will that matter?

Who will my assessor be?

And I now I know how people feel

  when the assessor is me.

Monday, February 12, 2018

Unarmed

If we are all on the same side, why aren't we kinder to each other?

When I first became disabled, I knew of the disability community. From a distance it looked like a supportive community where it was safe to be different and safe to share struggles and safe to participate in the advancement of rights for ourselves and for those like us. From a distance it looked a lot like a Bette Midler song.

I have been attacked before, from within the disability community, for stances I've taken, for the way I've expressed myself, for holding divergent views. Some of these have been painful attacks seemingly motivated by anger and intent to hurt, but some others led to me learning and changing. I'm not opposed to debate and disagreement, I think they are healthy, but when laced with a kind of unfathomable hatred it's not debate and it's not disagreement it's emotional disembowelment.

I received one of those kind of attacks this morning about the post I wrote yesterday. I knew when writing it that the likelihood of success was somewhere below zero, but I also knew that because I was so touched and moved by "This Is Me" that I wanted to try. It costs nothing to try. It costs a lot to decide to lose before starting. So I wrote the blog and a number of people have, wonderfully, shared it. The chance of it being seen has moved up from less than zero to zero and that is a little victory in and of itself.

But, I was told that, "as usual" I was focusing on trivial issues with no chance of success and needed to face the real issues facing the disability community. Apparently I need to "focus my considerable energy" on what matters to the person who wrote me, who damned me, who ridiculed  my efforts. Firstly I was glad to find out I had "considerable energy" because it doesn't feel like it, day to day, in my real life. Secondly, I felt like I was being told that I was a bad disabled person doing meaningless things.

"Hold on," I responded, "aren't we on the same side?"

I learned then that I was a "shameless self promoter who does things for attention rather than for social change."

OK.

Thanks.

I've seen these kind of attacks happen on line to many disability activists from other disability activists. Infighting, it seems to me, takes time away from our job of making change. It gives an excuse for lack of action. I don't care what front you are fighting on, what battles you choose to pick, we are WARRIORS, and the battle is far from won.

I salute those of you who fight the fight in whatever way you choose to fight it.

You don't need to salute back, but maybe you could approach me unarmed.

Sunday, February 11, 2018

The World's Greatest Showman: An Open Letter

An Open Letter to Benj Pasekand Justin Paul, song writers; Keala Settle and Hugh Jackman, actors and singers; Lawrence Mark, Jenno Topping, Peter Chernin, producers.

Hello,

I went to see The Greatest Showman not knowing what the story was really about. We went because we had two children to take to a movie and this seemed like a good fit for time we had available. I took my seat near the front, in one of the spots for disabled people. I am a wheelchair user and my choices for seating are both diminished and often made for me. We, along with the kids mom, took up a fair number of seats and got settled early. We love movies. We love the pre show and the previews.

The movie started.

I have been stared at all my life. Almost every day of my life. I have never felt part of the world around me. The messages I have gotten about my right to be, here, now, have been harsh and exclusionary. From looks of disgust to open mocking, I do not meet welcome outside my door. You can imagine how this movie struck me. It hit too close to home and it felt ... wonderful. Then the song came on 'This Is Me' and I sat quietly in my wheelchair and wept. This was for us, the different, the disabled, the visually different. It was our anthem, written with us in mind. I didn't know, then who wrote it, but I loved them in that moment.

I have showed the lyric video to almost everyone I know. I wanted them to see in there what I felt in my heart. Acknowledgement. Welcome. Understanding. And they did.

Then I watched a performance of Ms Settle in Melbourne I think it was. The performance was impeccable but ... the chorus was made up of beautiful, thin, able bodied people. Instantly we, the disabled and different, were eradicated. I wondered who made that decision? I wondered if anyone cared about that decision.

We already know that people with disabilities are underrepresented in entertainment. Vastly so. Here was an opportunity to diversify a performance in service to the performance and it was cast away. It hurt. It made me wonder if you all learned anything from the roles you played or the songs you wrote. But I believe you did, you couldn't have moved me like you moved me in the theatre.

Here's why I'm writing. Maybe you could do something for the disability community, those of us who wear the differences that live at the other end of pointing fingers. Maybe you could insist that when the song is song there is someone in the chorus, someone on stage, who IS different. Who embodies the meaning of the song from the movie you worked on.

Maybe the Oscar performance could have at least one disabled singer or dancer on stage.(I can send you a list). Maybe you could push the boundaries of Hollywood, maybe you could increase the chances for disabled actors and singers and dancers to get work.

Why not just say this song requires one of us, a talented one yes, but one of us on stage?

Reaching you will be difficult. Getting this read by someone that matters will be difficult.

But we are warriors.

And because of that, I'm trying.

Respectfully,

Dave Hingsburger

Saturday, February 10, 2018

Lessons Learned

Lessons learned.

There is a fully accepted cultural myth about people with disabilities who live within service systems. That myth shows itself most clearly after an inquest or a newspaper report or a splash on social media about the often violent abuse or the deadly neglect experienced by people with disabilities by the people who are paid to care for them. To be fair, we live in a society that easily 'understands' the murder of a person with a disability by a parent, so society's expectation of care providers isn't a high bar to get over. But there are those situations where the abuse is so bad, the neglect so disgusting that it can't leap over the 'maybe better dead' bump in the road.

Then there is the faux outrage of the public. People say things like, those people who did that should be killed, or who could do that to a disabled child. "Child" is often used even if the reports are about adults in care. These are exactly the same words that people use about a puppy being beaten, or a cat being starved.  It's laudable outrage, but it's outrage waiting to move on.

People with disabilities within the system however, do not. They wait, those who have been given the opportunity to be informed, to find out what a report says. A bunch of people get together and craft written responses. There are the public relations kind of people who write something for the agency that housed, fed, and watered the abuse. There are the people who craft together words to appear in a report, each tacking a different angle from a different respect, people who are able to turn a rampaging elephant into a slightly pissed off bunny.

And then they all say it.

"There are lessons to be learned here."

"We have to pay attention to the lessons learned."

The public buys it. The media buys it. Lessons have been learned - good we're done.

The myth is that we as people with disabilities are so exceptional, so different, so unimaginable in our needs that it takes real, deep, thought to craft a system to support us. That our needs are 'special needs' and therefore we need 'special' people to provide for those needs. That our exceptionalities are so exceptional that only exceptional people are gifted with the ability to deal with the ugly realities of who we are.

Look at the public worship of those who assist us. You must be so patient - as if we are very trying people whose needs are burdensome even when paid to provide them. You must be so kind - as if it takes an extra bunch of kindness to spend even a little time with us and our bodies and our faces and our words. This is followed by "I could never do that!" The suggestion is that you with your goodness you go do that but me, keep the grotesques away from me.

The lessons learned? Pablum. That's all pablum. Easy to digest. Easy to find profound.

Provide medical care when necessary.

Provide the basics of life.

Don't slap or beat the shit out of them.

And if you do, please clean it off the floor.

Let me make this clear from this disabled man's point of view: There are no lessons to be learned.

THERE ARE NO LESSONS TO BE LEARNED.

WE ARE NOT EXCEPTIONAL IN OUR NEEDS.

SPECIAL PEOPLE FULL OF THE MILK OF HUMAN KINDNESS ARE NOT NEEDED TO PROVIDE CARE FOR US.

We need the basics. Food and water, shelter, clothing.

We need the basics. Good medical support from the health care system.

We need the basics. Respectful human interactions.

We need the basics. Opportunities to grow and develop.

Sure there are more, lots more. But they are all pretty basic. They aren't exceptional for anyone else so why are they called 'special needs' or 'exceptional needs?'

When will we have an inquest where the lessons learned about about the system and how hierarchy and power breeds violence and neglect. When will we hear about the system and not ourselves. When will the stories be about the dark dank places where we sit in our own feces and how they came to be? How did society allow it? How did management avoid seeing it?

Until then the lessons learned will use our bodies and our regular and ordinary needs as a way of justifying their actions and blaming us the victims simply for being.

Our being caused our abuse.

In a world that lauds our death on screen, in newspaper op eds about parents killing disabled children, in classrooms where children have to decide who to throw out of the boat, this makes sense to them.

This is how they see us.

Be grateful for care because, of course, you don't deserve it.

Friday, February 09, 2018

BS on the Corner

He was standing on a street corner waiting for the light to change. It was very cold. It was snowing. Walking on foot, or rolling in a chair, was dangerous for everyone. I had regretted taking the power chair out the moment I slid down the driveway. But, in true Canadian fashion, I just motored, on because we own winter.

After finishing at the mall I headed back and arrived at the corner along with everyone else. I noticed him because I'd seen him before. He has an intellectual disability, he is also completely independent, I've never seen him with a support person, sadly I've never seen him with a friend either. But there he stood waiting for the light to change.

There was talk around him, people assuming that if he has one disability he has them all including deafness. So the talk was loud and unguarded, he either couldn't hear them or understand them, so it gifted them with the right of commentary without considering him.

The commentary was about the weather and his lack of an 'escort' or 'you know, someone to make sure he's safe,' or 'a babysitter.' I looked at his face, he just looked weary. He didn't say anything.

I didn't want to step in for him.

I just said what I would have said if it was happening to anyone else.

"He can hear you, you know?"

They were all shocked. One leaned down and whispered, "Yes but I don't think he understands."

"And that makes it Okay?"

They looked at me the windy whisperers like I'd lost my mind.

"You're disabled, you don't understand that we're just concerned for him."

The light changed and all headed across, all I could do was shout out, "Bullshit!"