Wednesday, March 01, 2017

When Nothing is Something

We had stopped for a cup of tea. I was comfortably in place and about to take my first sip when I was approached by a tall tired looking black man who asked me for some change in order to get a sandwich. I virtually never have change as I always pay by debit, but I do carry $5.00 Tim's cards so that he could go and get a coffee and something to eat when he wanted to. I told him where the Tim's was in the mall and he nodded a thank you and then continued along the tables.

Most people politely refused him, a few gave him change, but then he hit a table with two women, both white and both looking quite wealthy. One of them, and I know you will find this hard to believe because we did and we were both there, refused to give him change but then set about telling him how he could improve his approach to people for money. She instructed him on the etiquette of begging!!

She told him that he should approach with a friendly smile.

She told him that he should always thank someone who gave.

She told him that if someone refused he should just say 'thanks anyway' and move along.

She adopted the attitude of helpfulness.

This was all happening behind me and I had to turn. I watched him stand there patiently, knowing she was not going to give him any money, and let her lecture him on the basics of asking for change. His patience with her was extraordinary because I found myself wanting to butt in and say something but I also knew it would be unwelcome by both of them.

He was handling the situation.

He didn't need another person doing something for him when he was dealing with it himself.

When the lecture was done, he set off, went to a table or two more and then started down the elevator. He saw me and pointed with a question mark on his face, and I indicated that yes, Tim's was straight ahead. He nodded thanks.

I nodded back.

Sometimes doing nothing is doing something.

That goes for both him and me in that particular situation.

Tuesday, February 28, 2017

The Boy In The Tunnel: First Confrontation

So much happened in those few minutes that the boy with autism and his staff made their way through the short tunnel that I had to decide where to begin the telling. I chose to begin with the staff, I chose to begin with a positive statement about his support and the absolute respect with which he was treated and how that respect informed those who began with judgement as to everyone's right to public space. I didn't want to begin at the actual beginning, with the first confrontation.

As I said, we rolled towards the top of the ramp going over to the movie theatre, as we just entered into the tunnel, the scream happened. The young boy was in distress and all eyes shot towards him. But not just eyes. Two different people, beside me, pulled out their cell phones and began to set up to either video the incident or take a picture of the boy. I was stunned at their callous consumption of the moment and their clear intention to "share."

In order for me to be clear about my motivation, this has happened to me a few times. It would have happened more often but Joe and I are very skilled and very practiced in thwarting picture takers. I know how to turn the chair quickly to give them a shot of the back of my chair and Joe knows how to step in and 'photo block' any attempt to capture an image of me. I know that their are 'freak pixing' and that I'm going to be laughed at over a beverage, as the camera is shared round. I know I'm going to give someone, who lives without story, an anecdote to share.

I also know where to find the few stray pictures of me as 'fat man in public' that have made it onto the internet. I know the purpose of the pictures is to inspire disgust in the viewer and to grant those who look at it a moment of superiority because though I'm more, I'm obviously less. So, I hate seeing people take pictures of people for the sole purpose of humiliation one for the elevation of another. As such, I'm not silent.

So they had their camera phones raised. I swiftly turned and said, in my firmest, but certainly not loudest, voice. "Don't!" That stopped them as they glanced towards me. "Put those cameras down!" I said, assuming an authority that I did not have. One of the good things about being a lecturer is that I know how to use my voice and how to take control of a situation. Both dropped their phones and then put them away.

I had thought that this was because of my intervention but then I noticed that my voice had been loud enough to attract the attention of others in the mouth of the tunnel. They hadn't said anything but they were clearly in support of my demand. The stares had switched from the boy in distress to those who would exploit the boy in distress.

I don't often experience community in the community but at times like this, I sense what community could be like. Everyone having everyone's back.

The two picture takes did not stay to watch the boy make the journey through the tunnel. They left, deciding to go another way, or to simply go away.

Doing damns the darkness.

Monday, February 27, 2017

The Boy in The Tunnel: The Remark

I was just about to push myself over to the ramp, from which the young boy, with autism and in distress, had exited with his staff. The boy was calmer now, at the end of the tunnel than he had been at the beginning, due to the support given him by his staff. As my hands touched my wheels a woman coming up the stairs beside the ramp caught my eye and said, in a loud but conspiratorial whisper, "At least you don't do that!" Then, she was gone.

It had happened in the blink of an eye.

Yes, the boy with autism had been loud and yes he was in distress and yes his behaviour was different from all those around him at that moment. All that's true. But her comment seemed to imply that though I'm in the disability pool with that guy, I'm not in THAT deep. The disability hierarchy at it's worst, some are more valuable than others, some are more acceptable than others, some have lives that are more worthy than others.

"I didn't mean YOU," was a comment made when someone commented to me about how much in taxes are gobbled up by support for people with disabilities who, "take but don't give back." I'm always shocked to hear this attitude but I'm particularly perplexed when it's stated by a direct support professional. Really? I'm supposed to be glad that you exempt me from the general category of 'useless eaters,' to borrow a phrase from a former regime.

The woman probably thought that she was giving me a compliment. Letting me know that she saw me as 'different' and 'better'and, to a greater degree, 'acceptable.' But she was also saying that there are the kinds of differences that are worse to the point of being 'unacceptable' and therefore unworthy of ... what? ... public space? ... respect? ... life? I don't know.

I see this hierarchy sometimes within the disability community itself. I've had people with intellectual disabilities say they feel sorry for me because I use a wheelchair. I've heard people who use wheelchairs who really want it made clear that they don't have an intellectual disability. I've heard parents make it clear that 'at least my child isn't or doesn't or won't...' We're good with who we are but we really want people to know who we aren't.

I identify more with that young man with autism than I do with the woman who spoke to me. I know what it's like to have my body and my presence scream out my arrival at an event. The stares and the fear and the confusion that are resultant simply of me coming into the lobby of a theatre, the entrance way of a grocery store, or even rolling out of my building and on to the street. I get it.

I'm as loudly visible as a scream in a tunnel.

Which is why I spoke up when ... (part three to follow)

Sunday, February 26, 2017

The Boy In The Tunnel: Support

The scream was sudden and piercing.

We had come from doing laps of the north part of the mall and were now heading over to the movie theatre to catch a film. To do this we needed to go through the tunnel and, as always happens, my shoulder began to tense at the idea of the long ramps I needed to negotiate. Then, the scream. My eyes shot to the source of the sound. A young boy, with autism, maybe twelve or thirteen years old, was screaming and wildly punching at his head. Beside him stood, as they were stopped still at the moment, a young man in his early twenties. The sound, it's immediacy and urgency, had stopped everyone in their tracks. Everyone staring.

I did not stare.

I don't stare at people who are in distress. I figure it's a moment where what they need from me is privacy and space. I backed my chair up. They were at the top of the far ramp and would need to be able to get by me in my chair. I waited.

Not staring does not mean not seeing.

Only moments later, when on the other side and turning a corner I had to negotiate around a woman who, after seeing me, dropped her eyes, refused to look at where her path was taking her and where mine was taking me. Just refused to look up at me or the space around herself. Averting one's gaze is not the same as not staring.

So what I noticed was the fellow who was supporting the young man was a highly skilled and clearly compassionate guy. There were several things that he did that were of note:

He wasn't even slightly embarrassed by the situation. I don't know what he was feeling inside but to all the world and for all the world he just calmly did what needed to be done to keep the young man safe. This is at odds with how I've seen many of these situations with the staff panicking and becoming flustered and embarrassed and, sometimes, looking for pity (not support) from those around them. Staff can forget sometimes that, in these situations, they are supporting an individual and teaching the public how to respond in that moment. This guy just radiated respect for the young boy who was having a really rough go.

His voice, when speaking quietly, to the young boy, was soft and showed no sign of strain. Whatever he was saying, must have been helpful because the young boy, at one point looked to him, and paused to listen to him, and then struggled to regain control. The scream began to drop in pitch and in volume. There wasn't a trace of anger in the staff's voice. There were no commands being given.

His attitude, though, was the big deal. Attitude can be seen. This staff, he communicated simply that they were there, they had a right to be there, and that what was going on didn't change that. Again, this is at odds with how I've seen this handled by others. Anger and frustration and embarrassment combine to communicate exclusionary messages to everyone around, messages that suggest that behaviours eliminate citizenry.  Not this guy, he was a direct support professional, who managed to support an individual while supporting, by how he did what he did, the rights of that kid to be where he was and go through what he was going through.

Once I had space to move ahead, I put my hands to the wheels on my chair and a woman coming up the stairs that are beside the ramp, said ... (part two tomorrow)

Thursday, February 23, 2017

The Day after Pink

Did you wear a pink shirt yesterday? In Canada, yesterday was pink shirt day, a day which is dedicated to the fight against bullying. It's a day that raises awareness of bullying, is aimed at encouraging to fight against bullying. These are all laudable things.

I didn't wear pink.

I have a pink shirt, but I didn't wear it. Not in protest against the day, because the day is important. I didn't wear it because whenever I do the world becomes dangerous for me. A fat man in a wheelchair wearing a pink shirt is a target that few seem to be able to resist. Now it's not because I'm a man in pink, but because, I'm told, the pink enhances my "porcine" body. Nice.

For all of you who did wear pink. Let me tell you a little story. We had Dr. Dick Sobsey come to Toronto many years ago to talk about abuse prevention and people with intellectual disabilities. He gave a brilliant presentation, as was to be expected. He had a powerpoint presentation that outlined a list of things that we could do to reduce or even stop abuse.

One of those points was, and I don't remember the exact words: Don't abuse those in your care.

I remember sitting there shocked. He then talked about how we all think that abuse is what other people do and that we had to be aware of who we were the power we had and the way we managed that power. It as a direct challenge to those, sitting there, to listen about how to reduce abuse that was epidemic in the sector of disability services.

I thought it was one of the bravest moments I'd seen in any presentation, ever.

Putting on a pink shirt doesn't mean that you have taken off your social status, your ability to see others as less, the power you have to intervene - or not - at your will and it certainly doesn't mean that the shirt turns you into an anti-bullying super-hero.

The shirt can mean something.

The shirt can mean nothing.

What matters, isn't yesterday, being all fashionable with the others who joined in on the fashion statement of the day. What matters is the day after. What matters is what you do today.

Have you the courage to look deep into yourself and ask what degree of bullying of others do you just simply casually accept?

Are you good with the fact that the kid with an intellectual disability in your class is always sort of excluded at social events like birthday parties or 'parents away' bashes? Do you justify with 'he wouldn't want to (or be allowed to) come anyway.

Exclusion is bullying.

Are you fine with joining in with staring at a fat man in a pink shirt and giggling when someone makes a pig sound? It's just a stranger after all, and really, he shouldn't have worn pink.

Centring someone out based on difference is bullying.

Are you Okay with people using disability negative language or racial joking when it's 'just among friends' when it's 'just funny.'

Being just among friends who are all the same involves, of course, exclusion.

These are only a few of the questions you need to ask yourself.

Who are you in relationship to bullying?

Who am I?

I know, for me, this has lead to uncomfortable self examination. I know I don't always speak up when I see bullying. I know that I speak up more - but that's not really an acceptable outcome, is it? I know that I have to keep looking at how I define bullying so that I catch what it really is - social violence. I know that I am afraid of violence. I know that I'm fearful of intervening sometimes.

I didn't wear pink.

It dangerous for me to wear.

That's true.

But I also don't deserve to.

Wednesday, February 22, 2017


We are heading over to the United Kingdom in a few days and are slowly getting prepared. Joe has pulled out a steamer (to heat ready meals in our room) plug adaptors and our UK cell phone which hasn't been used in a few years. Me, I've been getting myself psyched up to do the travel, particularly getting in the rental car from the other side. My body has been trained as to where the passenger seat is and I need to be sure I've got equal flexibility when I face the car door on arrival.

The other thing that I've been intentional about is the pushing myself part. I know that I'm facing long distances and therefore I've been practicing long distance pushing.  More than that, I've been using the bus and my manual chair when we've gone out grocery shopping or the movies or the museum. It takes more organization and it reduces flexibility but, that's what comes with relying on wheels other than your own.

This weekend we went 3 places where typically I'd use the power chair and instead we went on the bus and under my own steam. Some of the pushing was hard, uphill slants and rough terrain but with every push I knew that I was prepping for a week and a half with no option but my manual. I want this trip to the UK to be different than any before it. I want to go, doing what I need to do, without assistance and that means, wonderfully, without waiting for assistance.

I keep waiting for my arms to show the results of a year of weight lifting and intentional pushing but, sadly, they don't - except where it matters, performance. I know I can rely on my arms to get me pretty much anywhere I want to go.

I'm actively looking forward to landing at Heathrow. All previous years, we've waited, sometimes very long waits, for assistance. If they are still using the same gate, it's a really long way to customs, I am looking forward to getting off the plane and getting into my chair and then having a good long run in the chair - getting the kinks out from sitting on a plane for all those hours.

So, I'm prepping.

And because of that, I'm full of anticipation for what the trip will bring!

Tuesday, February 21, 2017

He Is Smiling

Photo Description: Brendan Mason, wearing glasses and a brown tee shirt. He is smiling.
A friend of mine from Wales posted an article on Facebook about a man, Brendan Mason, who was beaten to death, while his attackers filmed him being tortured and humiliated. In my friends comments she mentioned the attack as one being based on hate. I went to one article and then another and then another and then finally, this one and I didn't see what I expected to see there, mention of hate being a motivator for the crime.

I messaged my friend in Wales to ask her a question but before she had a chance to respond, someone else posted an article that had the answer both in the text and in the headline. Yes, he had a "learning difficulties" which is what we call "intellectual disabilities" on this side of the pond.

We, as a community, need to be asking hard questions of the press and the justice system? Why was this not prominently mentioned in all the news articles about him? Why was it not made clear that his assailants manipulated him into thinking friendship existed between them and then conspired to beat him for fun? Why was the context of disability not discussed in these stories, and from the stories about the trial why wasn't a part of the court proceedings?

Isn't is responsible for the media to inform the public? Isn't it responsible of the courts to understand crimes against people with disabilities in the context of disability? I think both have failed Brendan and the community of others with learning difficulties (intellectual disabilities) and their families and support workers. We need to know about these crimes. We need to know how the perpetrators got to him, how they manipulated him and then the level of violence they sunk to in attacking him. We need to know these things, not to scare us, not to have us hiding in our homes, but to prepare us.

To prepare people with intellectual disabilities so that they know the dangers of 'pretend friends' and to watch out for signs of manipulation. To prepare parents and support workers so that they can do the teaching and the training necessary to live in a community where crimes like these are not only possible but distressingly common. Look again at the picture at the top of this post. Brendan Mason is looking out at us smiling. He was smiling. His life gave him moments like this. If his life with a disability was worth something to him then maybe it was worth a mention.

Proper reporting and proper judicial examination of motives and of hate alert us all. It makes us responsible for knowing and then for doing.

We know this can happen.

We know this did happen.

We know we must respond in some way.

We cannot sit with the knowledge of Brendan's life and Brendan's death and not be moved to DO SOMETHING. We can't just be silently outraged. We can't believe that Facebook posting is an effective tool for change. We can't emoticon our way out of this. We are responsible because, even if we don't know Brendan Mason, we mourn him. We are responsible because we know people like Brendan Mason who could be tricked in the same way, who could be manipulated by offers of false friendship, who would do what was asked because we taught them the ways of compliance without question.

We are responsible.

So action is the only way forward.

What can be done?

We can properly and responsibly inform each other about the tragedy of the murder of one of our own.

We can ensure that those who we parent or support have the opportunity to learn about bullying, social and physical violence, and develop strategies that work to keep people safer.

We can ensure that letters go to the media that hold courts and reporters to account for how they account themselves when crimes against people with disabilities come before them.

We can assert ourselves as a community in support of each other and in support of a world that takes violence against people with disabilities seriously.

Hate crimes against people with disabilities are growing more frequent (there is data on this) and the level of violence involved is also increasing.

Why don't we know about this?

Because, for some reason, who Brendan Mason was, and how he lived his life, was considered irrelevant. Well let me tell you this, for those of us who live our lives with disabilities, the context of 'disability' is never irrelevant and it's never shameful, and it never needs silence.

Silence = Death ... a slogan from the early days of AIDS, is one that should have taught the world that Silence = Complicity.

Don't be silent.

Don't consent.

Doing damns the darkness.