Sunday, September 21, 2014

Back

Gosh, it's been an unusually long time since I've written a blog. I apologize for the unannounced break. We are all fine here.

I thought, or believed, or bought into the stereotype that when you get older things slow down and you have more time to enjoy life.

Um.

No.

I had an extraordinarily long week. Working 10 or 11 hour days ... dealing with unmovable deadlines ... being asked to make big decisions on big issues ... getting on the bus at 5:45 am ... takes it's toll. Now I love what I do, but, and it's a big but, there are times that there's too much of what I do to do.

It may sound like I'm complaining. I'm not. I'm explaining. I simply couldn't fit the act of blogging in with all that AND having some kind of home life at the same time.

In reality, when I get overwhelmed like this, a part of me is grateful.

When I first became disabled, when the wheelchair was first wheeled into my hospital room, I had to actively fight off the worry that I'd never be as fully involved in my life and work again. I knew it wasn't true! I knew people with disabilities who's lives were full. In fact, when I thought about it, every person with a disability I knew had a life that fitted them well. Even so, the larger societal stereotype of 'disability' as 'disaster' and as 'disenfranchised' filled my head. I fought depression by pushing away fear with certainty. I KNEW different and, even so, it was a battle.

I never imagined, though, that what was coming was coming.

Instead, I have found that my disability has now informed my work and informed the decisions I make about what I prioritize.

And.

That has made me very busy.

Good busy.

But busy.

So, again, I apologize for being away, especially after the last post.

We are well.

Our lives are full.

And we go on because, of course, doing damns the darkness!

Wednesday, September 17, 2014

Oscar, Twinkies and Closed Doors

I had an experience, yesterday, that once again reminded me of the vulnerability that comes with having a disability. I mean, I know this, I've known it for a long time, but occasionally I am reminded, in real life, in real time, of the simple fact that there are dangers that are unique to my status as a disabled person. What happened yesterday is still too fresh to write about, I need more time and more distance, I need to be able to write about it without fear making my fingers type the wrong words with the wrong keys.

I've studied the research on violence against people with physical disabilities, with intellectual disabilities and those at the intersection of both. I know that people with disabilities are much more likely to be victims of crime - almost every kind of crime from physical assault to sexual victimization to financial abuse. I knew this, once, at an intellectual level. I know this now on an extremely personal level.

My experience yesterday made me want to write about my initial response when I heard the story of 'the Blade Runner,' Oscar Pistorius. The first media report simply reported that he was in a bathroom, when he heard an intruder and panicked and as a result of that panic he fired a gun through the bathroom door striking and killing his girlfriend. After this report much more came out about the case and there are all sorts of pundits, many gifted ones from the disability community, who are looking askance at the verdict and asking hard questions about the facts of the case.

I do not need to or want to do that kind of analysis here.

I just want to record my reaction to what I first heard.

My reaction beyond horror. My reaction beyond decrying guns and the myriad tragedies that happen when guns are readily available. My reaction beyond the deep sorrow of another woman killed at the hands of another man.

That very brief news report, that first one, only spoke of a man with a disability fearing intruders, feeling vulnerable, reacted with panic.

That's all I knew.

Then.

I immediately remembered my own first few days as a disabled man. We had moved to Toronto from the country, we lived in a place too small for mapquest or a GPS to find, and I was alone in the bedroom, sitting on the side of the bed, slowly getting dressed. My disability was new and everything was a new experience. It took me a very long time to get dressed. My legs simply didn't do what they had done only days before. I refused help with this task, I would relearn by doing, I resisted help. The same with walking. Today I can walk, short distances fairly well, but I have to be near a wall so that I can orient myself in space by touching the wall with my hand. I fall over in open spaces. My walking, that day that I sat dressing myself, wasn't something I did easily yet.

Joe had left and had anticipated being gone for an hour or two. I knew that just getting dressed and getting out to my desk in the office we'd set up in the dining room would take most of that two hours. I'd be fully occupied doing something that once would have taken me only five or six minutes. Suddenly I heard the front door to the apartment open. Or at least I thought I did. I sat there, listening hard. I called out Joe's name. We were new to the apartment and hadn't learned yet that voices don't carry from the bedroom to the front room. I kept hearing sounds. Movement. I began to panic. I knew that Joe was to be gone for at least another hour and a half.

Who was there with me?

Who had keys to this apartment?

Who lived here before?

I knew I couldn't run. I wouldn't be able to stand up and defend myself. I felt utterly lost, alone and vulnerable. For the first time in my life I looked for a weapon. I'd never done this before. All I could find was my reacher. I'd be able, if necessary, to reach out and tweak the nose of my assailant. Then I heard footsteps coming down the hallway.

"Who is it!!" I screamed, panic filling my voice.

"It's me," Joe said, "I forgot my wallet, I had to come back."

I dropped the reacher and felt relief flood my body.

I tell you all this not to justify in any way someone who fired a gun through the door at unknown persons. I tell you this not to make any kind of comment on the Pistorius case at all.

I tell you this because I'm worried about the commentary I'm hearing about the case. The dismissal of the idea of vulnerability and disability. The dismissal of the fact that with disability is tied to vulnerability at all. I would have loved it if, rather than it being used as an excuse or a defense, someone had begun to look at the very real dangers that people with disabilities face. I would have loved it if it had led to a discussion about violence against people with disabilities.

Instead I think the Pistorius trial has done damage, in the public mind, to the real life experiences of men, women and children with disabilities. Vulnerability and disability has been spoken about almost like the 'Twinkie Defense.' The real people behind the statistics of abuse have real stories to tell and now will tell them under the shadow of a man who reached for a gun and fired through a closed door. That closed door may now be firmly shut in the minds of many to the realities of the lives of those who live with violence and abuse and neglect solely as a result of their status as people with disabilities. 

Monday, September 15, 2014

Strawberries and Dilemmas

 
We were coming home, a grey and grizzly day, cold seeped into our bones. Yes, summer in Canada can include days that feel like early winter. As we were walking home I suddenly thought of our next door neighbour. We don't really know her that well. Just the usual neighbour kind of interaction - we'll take parcels for her, she'll take them for us.


Recently Joe ran into her and she told him that she was having more and more difficulty getting around and she was fearful of becoming house bound. I mentioned to Joe that we were not in a rush and asked him if we should call her and see if there is anything she needs or wants from the store.

Then began the discussion. We worried that she would feel our call intrusive. We worried that she would regret having said anything to Joe. We worried that she would think that we felt sorry for her. We worried that she would misinterpret our act in some way.

We were almost home when it was decided that we'd just ignore our worries and just make the call. If it annoys her, it annoys her. So, we called. Her voice was wary until she recognized my voice. I told her we were on our way home and wondered if she wanted or needed anything.

She paused.

I waited.

"Strawberries," she said, "and cream."

Another pause.

"I would love to have some strawberries and cream."

There was nothing else she needed. So we headed off and picked the finest basket of strawberries we could find. We got the cream. On our way home we called her with the amount, as she had asked, so she could get the money ready.

Arriving home, Joe helped me into the apartment and then headed over to her place to give her her little package.

It was such a simple thing to do. But we felt enriched by the whole thing.

I wish I worried as much about the things that come out of my mouth when angry or annoyed. I wish I worried about the feelings of others who are at the blunt end of my words and actions when I act from impulse not thought due to frustration or anger or annoyance. I wish I spent the time worrying and wondering and figuring then.

But no, I worry kindness.

And give harshness free reign.

I've got that wrong.

Do me a favour, buy someone strawberries today.

You know who would like them.

You know who needs them.

So just do it.

Executive Functioning: Deliberate Indifference


Today we release the second issue of Executive Functioning: A Newsletter for Senior Leaders in Human Services - the topic is 'Deliberate Indifference' - if you'd like a copy, or to subscribe, simply email me at dhingsburger@vitacls.org . Too, we are attaching NED talks to each newsletter (Network of Executive Directors) as you see above.

Saturday, September 13, 2014

Dance!

At the intersection of Yonge and Bloor there are three pedestrian crossing possibilities. North <-> South. East <-> West. And then there's 'all ways' crossing where traffic is stopped in every direction and people can cross from whatever corner they are on to whichever one they wish to go. It's kind of cool when you get there and it's 'all ways' because it still feels kind of wrong going both North and East or South and West both at the same time.

Yesterday we were one of the cars stopped right at the crosswalk when the 'all ways' crossing blinked on. We saw a woman in a wheelchair with bright red hair; brightly multicoloured stilettos on her feet; fashionably cool clothing and with the most amazing cape draped over the chair behind her back. She entered the intersection and then wandered in a lazy kind of lovely meandering route. She looked to be simply enjoying the chair and enjoying her ride out and enjoying the opportunity to do a wheelchair ballet in the intersection. Joe had classical music playing on the radio and it was the perfect soundtrack to her movements.

She made it to the curb and continued on her way, the light changed, and we were off. But I was so glad that we had stopped there. I was so glad we had seen even for a few moments. She managed, in front of an audience of cars and fellow crossers, to demonstrate that wheelchairs free us. Free us to move. Free us to travel. And more than that ...

... free us to dance.

Friday, September 12, 2014

Started As a Blog: Ended as a Rant

I do not like Rob Ford's policies or politics.

I do not like Rob Ford's interactional style.

I did not and would not vote for Rob Ford.

There.

That's clear.

Let me make something else clear.

I wish Rob Ford the best in dealing with his latest health scare.

I hope he does not have to drop out of the Mayor's race.

I send him and his family positive thoughts as they face a difficult time.

There.

Now that's clear too.

I follow Toronto politics fairly closely, reading most articles in most papers about the various candidates and their positions regarding issues that matter to me and to other Torontonians. I sometimes, though not often, stray down into the comments section of a particular article. I always do this with trepidation because, WOW, can people be brutal. With Mr. Ford, the comments veer from the very nasty to the outrageously nasty. Pro and Con - both sides tear at each other.

With the health scare, though, I see so many people who either say outright or pretty clearly imply that Mr. Ford deserves the tumour he has been diagnosed with because of his weight. "He didn't take care of himself, he's fat, what did he expect?" is the essence of these kind of comments. There are a lot of these kind of comments.

It's clear that fat people don't deserve sympathy, they deserve blame.

It's clear that fat people ask for every bad thing that happens to them.

It's clear that fat people ultimately deserve some kind of punishment.

A lot of these kind of comments are written as if the writer thinks they are funny. They are not.

Others think they are original. They are not.

People tell me that I shouldn't pay attention to these kinds of comments and dismiss them as 'written by trolls' or that people are just 'trolling' or that people under the cloak of anonymity don't need to be taken seriously.

I disagree on all counts.

I think these comments are a good way to get a sense of what people think but don't say and feel but don't reveal. I think anyone in any social movement needs to read these as kind of a free glimpse into the reality of our social world.

Racism - alive and thriving.

Sexism - bigger and badder than ever.

Homophobia - white hot anger continues.

Ableism and Disphobia - disturbingly violent.

Fat prejudice - completely ubiquitous.

Rather than ignoring these kinds of comments, these kinds of attitudes, I think we need to use them to prepare ourselves to live in the world as it's truly socially constructed. But I think we also need to use them as a means of understanding how to target appropriate pathways to social change.

In my work with people with disabilities I am always careful to teach about the world as it is, and how to live safely in that world. It isn't an easy world to navigate but it becomes safer when you understand that it's unsurprising that teens would dump feces and urine and slop on the head of an autistic kid. Don't you read the comments about autism? Don't you read the ignorance in newspapers? Those kids need punishing, kids with autism need to be better prepared to live in a world where that is entirely possible to happen.

Parenting, or otherwise supporting people, of any age, with differences means that an awareness of the intolerance, nay, hatred, of difference in our social world needs to be part of that training. Learning how to mistrust - trust and mistrust as skills as much as they are feelings. Learning how and when to be non-compliant - non compliance is a skill not a behaviour. Learning how and when to use your voice - we don't give voice, we suppress voice, it's time to help people discover the voice they've had all along. These are the jobs we need to do.

Just read what people have to say about Mr. Ford to be reminded that people who are different DESERVE PUNISHMENT ... and you know exactly what we have to do in order for people to live freely and safely in the world.

Thursday, September 11, 2014

Words Do What Words Do

I had a bucket of cold water thrown in my face the other day, and it was only partly because of an 'ALS' ice bucket challenge. I have watched a number of these and find them alternately funny, creative and moving. This one began with someone I know making a joke, wording approximate, about how someone had suggested he was a 'girly man' and that he was going to prove that he wasn't a 'girly man'. I stopped watching there. I grew up in a small mining town and tended towards what was called 'sissy' behaviour. I didn't like sports. I didn't like trucks. I didn't like rough and tumble play. I was called a 'girly boy' for several years and it is a term that, now I see, is offensive both to women and to gay men.

I left a comment, in the comment section, saying this. I felt it was a fair comment. After all the term was used, it was acknowledged that it was a negative term and there was clear need to prove that that term did not apply to the man in the video. Now, I know this guy, I know he would never intentionally hurt anyone, I know he doesn't have a homophobic nature, I know all those things. But. Words are words and words do what words do.

He was a total gentleman, and I mean that in the literal compound parts of the word - gentle man - about it. He called me up and apologized. Said he had no intent to hurt or to use terms that hurt. The next day the post was taken down. Simple.

Not so simple.

I have gotten, and still continue to get, messages on Facebook, where I saw the video, from people telling me to apologize and to ask for the videos return. I've politely said, 'no' and firmly said, 'no,' and am moving to an angrier, 'no.' I have been called thin skinned, I have been told that I'm over reacting, I've been told that I attacked this man and should apologize humbly and publicly and ask his forgiveness. No.

I told the fellow who made the video about this and he said that he was pleased to have had the comment and that he learned from it.

Well, clearly, others didn't.

What surprises me and disheartens me is that the people who are after me about this would be the same people who would be writing and commenting positively if I stood up to someone who used the 'r word' or someone who used a racial epithet. The same people. The very same people.

The same people who, if someone said, 'oh he didn't mean it that way,' about a star who used the 'r word' would not accept that as an acceptable reason for using the word. They know, in a different context, that words are words and words do what words do.

Why can't they simply see that it doesn't matter who a word hurts, it just matters that a word hurts?

It seems simple to me.

But, like a bucket of cold water in the face, I realized that for many, it's just not simple.

This all is especially sensitive to me right now, as I've written about, because I've had to see my doctor about ongoing pain that results because of my disability. As I wrote, a couple of days ago, all the 'girly boy' stuff has come back to haunt me and taunt me just for admitting publicly that I can no longer deal with the pain on my own, I need help. This morning, I received a message on Facebook about the incident with the video. I was a bit surprised because it's died down quite a bit and I thought it might be over.

Here is the text of the message: "Hey girly boy, where's the apology?"

Now this comes from someone, a professional woman, who does this without the cloak of anonymity. That's how deep the anger was towards me for having spoken up, and more probably because I spoke up to a particular person.

The intent of the message was to hurt me.

I am surprised to say, it didn't. It shocked me. It appalled me. It annoyed me. But it didn't hurt me. Over the last weeks dealing with physical pain, dealing with my own history of being taught that men don't feel or admit to pain, of being taught that only sissies need help.

Well, this sissy needed help, this sissy asked for help, and this sissy says, "sling your shit at someone else, cause you can't hurt me any more."

Wednesday, September 10, 2014

Oh. Shit. Sorry.

After a meeting, one of the women hung back a bit and then told me that she is dealing with a medical situation that is slowly leading to her needing the use of a wheelchair. We talked about that for a bit and then she asked me how I found my wheelchair. Her question was like pushing the button to launch a rocket.

I told her that adapting to the wheelchair would be much easier than she might imagine. Her world would get bigger not smaller, she'd be able to do things and go places that, right now, might seem unimaginable. Learning to negotiate around people and other barriers would become second nature to her. If you can manage to walk, you can manage to roll.

She looked at me, with what I thought was interest. So. I continued.

I told her about the social change. People would perceive her differently. I gave a few examples about 'disappearance' from the social sphere, about loss of voice. I told her that, for me, I had to really be ready to be assertive, not aggressive, so that I would be considered in interactions, that I would be 'seen' in line ups, that I would be 'heard' in placing my order at a restaurant. Managing a wheelchair was one thing, managing the social aspect was another. But, I reassured her, that she had all the skills necessary to assert herself as a person with a disability because she had learned to assert herself as a woman in business.

I was done but she still looked at me with interest. So. Of course. I continue.

I told her about choosing a wheelchair based on it's 'rollability' and told her the test I used when buying a chair. I talked to her about the various kinds of barriers the chair would face, carpet being a big one. Other physical barriers would also need to be considered, she needed to think about the width of the chair and the width of her doors at home. The wheelchair would open up her world but it would also close down some of it too.

I was running out of things to say, but she was still looking at me. So. I stopped.

She said, "I meant where did you buy it?"