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.

Monday, February 20, 2017

Take That!

I had just found a table and taken my seat waiting for Joe and the kids to come, laden with trays of food, to join me, when the man at the next table caught my eye and then glanced over at two women and two children at the table across from us. I looked and saw a lesbian couple with their two children. In the briefest of moments I found it fascinating that both kids called both women "Mom" and both women knew which one of them was being referred to!

Satisfied that I'd seen them he gestured again to another two women sitting with one child a little further away. The two women were holding hands and chatting as their child coloured in a colouring book while distractedly eating fries from his plate.

I was now really curious as to why this man at the next table had brought me into his confidence and pointed out the two tables. I looked to him. I could see then, just by the smirk on his face, that he hadn't brought me into his confidence but rather he'd attempted to bring me into an alliance of sorts. The constant presumption of heterosexuality annoys the hell out of me and in this case it really pissed me off.

Then he leaned over and said in a stage whisper, "It's Lesbian Mom Day here today." Then he laughed. Like that was a funny observation and like I would agree that these two tables, amongst perhaps a hundred or more tables being occupied by lesbians was an indication that lesbians were out, in force, intruding in public space.

I admit.

I was prepared.

I had kind of sussed out what was going on.

I leaned back to him, making him uncomfortable with my proximity, and I whispered back, "Yeah, isn't it great! Way better than 'bigot day' isn't it?"

Perhaps he threw his back out the speed at which those words and my presence threw him back in his seat because suddenly he was uncomfortable sitting there and quickly got up and left.

Have to say: didn't miss him.

Sunday, February 19, 2017

My Rule Book

We headed over to the theatre with some real anticipation, we were looking forward to seeing "My Night With Reg" at a theatre just down the street from where we live. We are very familiar with the seating plan and, even though they insisted on taking us to our seats, we found our way easily. The theatre was filling quickly and people were pouring down the aisle. The accessible seats are at the very back of the house so after we were settled we just watched the crowd arrive.

Then beside me was a woman, a really large woman, with a really bid walker, appeared beside me. She got to her seat, which was at the end row, an aisle seat, just a little ahead and to the right of us. She got into her seat with some difficulty and an usher folded up and took her walker away for her. The seats are small and she looked uncomfortable, but she was in and seated, I knew what that felt like.

A moment later, the barest moment later, two women came who had seats in the same row as she was sitting in. She looked up at them with the question, "What happens now?" on her face. They pointed to where there seats were and she said, "Okay, but you'll have to climb over me." They abjectly didn't want to. After a long pause, she said, "Well, I could get up if that's what you want." 

The two women looked at each other and then gamely tried to slide by her without her getting up. She was very, very, big and there was no room. The amount of body contact between them all was considerate. I had to look away. When I looked back up, the two women were in their seats and it was almost time for the lights to go down.

I discovered, in myself, that I have all these rules for how to be fat in public and how to be disabled in public. These rules that I live by. Without question. I live by them. They exist to make me comfortable but also, to an even larger extent, to make people without disabilities feel comfortable with me being in their space.

This woman broke almost all of those rules.


I felt embarrassed for her.

I felt the shame that I thought she should feel.

I had empathy for those getting by.

I had, well I don't want to tell you what I had, for the woman at the end of the aisle.

I discovered, again, as I do over and over and over again, that I have deeply buried prejudices in my heart and soul. I have a judgemental vein that robs me of the ability to be compassionate or understanding or even a little bit forgiving.

When it was over, Joe and I waited until the aisle had cleared. Another rule I follow. She didn't, she got up as the usher unfolded her walker, leaned on it, stopped the flow of those exiting to join in and head out. Finally, it was our turn to go.

We turned north out of the theatre to head home and as we did I noticed the big woman walking alongside the two women who had climbed over her. They were all amicably talking about the play and what they had thought about it. Friendly strangers chatting about what was important, what they'd seen, not how they were seated.

Thank God those women had bigger hearts than I did.

Thank Heavens they had a softness in their soul that I lacked.

But me, I've still got my rule book. I can't help it, but I do. I'm not giving it up, I worked to hard to write it. I just want to realize that it's MY rule book.

And mine alone.