Saturday, November 22, 2014

Now That It's OK To Do ... Murder, That Is ...

I just completed an interview, as part of research into the effect that working with people who have been traumatized has on you in the role of helper, and am a little traumatized from the experience itself. To be fair, the interview was only done after a warning that the subjects discussed might cause distress, and I gave fully informed consent.

As the questions rolled by about how I, in my role, deal with various aspects of trauma as experienced by those I serve, I began thinking about a young man I met in an abuse prevention class about a year ago. Even though it's a long time since, I remember him, everything about him, and everything about the encounter.

We were well into the class when he stated that there was all different kinds of abuse. He asserted that he'd never been hit, that he'd never be touched when he didn't want to be touched. But, he said, when his mom told him that she wished she had aborted him, or, now that it was OK to do, killed him when he was younger, that was abuse too. The whole class stopped. He began crying.

This moment was so at odds with who I saw when he came into the training. He looked like a typical twenty year old, wore cool clothes, seemed comfortable in his own skin and flirted outrageously with the girls, who responded with jokes and affection. He was liked. By his peers. He was liked. At a glance, the picture of a young and happy man.

Afterwards, when we talked together, I discovered that he was a young and happy man, who's soul had been battered and bruised. He knows he's not wanted. He knows that his family wishes him dead. He knows these things. "Sometimes, when I'm having fun with my friends, when we're laughing and all, it comes. I go kind of numb and it feels like I'm alone in the dark."

"Why is it OK for parents to kill their kids with disabilities now?" he asked.

"It isn't," I said, and he looked at me as if I just didn't understand the world I lived in. I insisted several times in several ways that "It isn't OK."

We made several agreements. I was allowed to tell his support team that he'd like to have some counselling around suicide and depression. I was allowed to write about this, cause he wanted people to know what it felt like to know, absolutely know, that in another time and another place he would not have been allowed to exist. That his mother would have killed him, that society would have approved.

As I answered the questions in the interview, all I could think about was him. And about how hard it was for me to get on a plane and leave. And about how hard it was to have stood so close to his pain that I could feel it echo in my heart. And about how, sometimes, it all just seems so difficult. I see, increasingly every day, the value of people with intellectual disabilities and yet I see, every day, reports of violence and murder targeted towards them.

And I know it's not OK.

Really, I know it's not OK.

But that doesn' help him.

And it doesn't help me either.

I finished the interview, I was honest about the fact that sometimes the pain of others is difficult to hear and difficult to forget and difficult to move on from. I think I surprised them by saying that having a disability made it harder. I was asked why. All I could think to say was ...

"Because, I know, they'd kill me too."

"Can you explain what you mean by that?"

"That's the problem, I can't."

Friday, November 21, 2014

Choir Practice

Last night Joe headed out, right after supper, to choir practise. When we lived in Quebec Joe was a member of the choir at St. Paul's United Church. It was a big part of his life and he enjoyed both the practises and the performances. When we moved to Toronto, with the travel that we do, and, I hate to admit, with the extra support that I need, he has been unable to join a choir as a regular member.

As it happens, Metropolitan Community Church of Toronto, which has an amazing choir, on occasion needs extra voices and asks for volunteers to come forward. Joe did this last summer and is doing it again this year for the first Advent Sunday service. So, off to choir practise he went.

We're comfortable enough to make jokes about this kind of thing, just before he left, I said to him, "Are you comfortable with leaving a cripple at home with all the sharps and matches laying around?" Joe, which will not surprise anyone who knows him, fell against the door laughing. And then headed out, I could hear him giggling down the hallway.

I was so pleased that Joe was doing this. I know he loves it. For me, too, it was nice to be home and secure, disability and all, alone. We've arranged the apartment such that it is as accessible as it is possible for a non-accessible apartment to be. We know my needs and routines and everything was taken care of before Joe left.

I got time alone.

Joe got time with others.

I was in bed when he came home, but my light was on and I was reading. Joe came in to chat with me, telling me about the choir and the songs and the fact that they were attempting four part harmony. I don't know what that means but it sounds hard. It didn't matter what he said, it mattered that his voice was still full of the enjoyment of being in the choir and participating in something he loves.

Disability changed my life.

But disability changed Joe's life too.

Last night, as I thought about it, I realized - yes disability changed our lives, but as we progress as we learn how to be in the world our our new(ish) normal. It's changed our life less and less.

Thursday, November 20, 2014

NOTICE ME!!!

We were Christmas shopping, in a large, large store. The snowfall must have turned on everyone's need to get out and shop for gifts because the store, and the mall it was attached to was packed. Just packed. We'd not been to this mall or this store for a very long time and Joe and I found ourselves wandering around quite lost. We were looking for the entertainment department but seemingly could only find women's lingerie and men's boots. Finally, with help from two different store employees, we were going in the right direction.

I was about to turn a right angle that would allow me to go from one aisle to another. Predictably it was chaos. I saw a young fellow headed towards me, walking forwards while looking backwards at something that caught his eye. I came to a stop, I was unable to back up out of his way so I called out to him. Hearing me he turned and made a quick turn to his left which avoided a crash. He smiled and said, jokingly 'Ooops.'

Then, out of nowhere, came his mother, she had seen the near crash from a distance and she grabbed his arm and yanked him further out of my way. She then shoved her face towards me and said loudly, "He's got low vision, a disability you know, LOW VISION."

I was immediately offended. Firstly, he didn't run into me because of 'low vision' or because of disability, he nearly ran into me because he was distracted for a moment. This wasn't a disability issue. In fact when I spoke to him he turned and SAW me and then adjusted his path. I had no idea he had low vision or a disability until his mother grabbed him and yanked him the way she did. I suspected difference because I don't see a lot of mom's of men in their late twenties grab them like they are four. The difference was confirmed when she yelled out to me that he had low vision.

I said, "He may have low vision, but his hearing's fine, do you really need to yell out his personal information?"

As I said this I saw something in his face, something light up, "Yeah, mom, you always do that, I don't like it."

She was shocked.

And, of course, with tiring predictability, angry.

She grabbed him and they were on their way, she talking quickly and angrily to him.

Why do people do that?

I think it's an odd form of M√ľnchausen syndrome by proxy.

You know that syndrome where care providers get attention by creating or fabricating illnesses and disease in those who they are caring for in order to reap attention. I think this is a little like that. I say this because I see very, very, few parents who loudly proclaim their child's disability or diagnosis to the world in an almost random manner. But this has happened to me before, once or twice, and not always by a parent, sometimes by a paid care provider, and each time it seemed to me that the care provider was saying: HE IS SPECIAL AND THAT MAKES ME SPECIAL BECAUSE I AM CARING FOR HIM. I AM HEAVEN SENT TO CARE FOR A SPECIAL CHILD.

That poor guy handled the near crash with adeptness and humour. so much so that I would never have guessed that he too had a disability.

Yet the way he was treated.

The way he was spoken about - as if he had no right to privacy.

Disability shouldn't mean ill treatment or loss of boundaries - but it does, far too often, it does.  

Wednesday, November 19, 2014

A Robin in Winter

I am sometimes asked, with a bit of hostility mixed with pure disbelief, how I can write a blog every day regarding my experiences as a disabled man. This usually happens whens speaking to someone who also has a little bit of trouble believing my stories about the hostilities and prejudices I face from being different and disabled in the world. Accusations of being 'over sensitive' and 'hyper critical' regarding people who mean well and who have no ill intent in their interactions with me. Then, after informing me that disabled people suffer generosity spurred by compassion rather than prejudice spurred by hatred, I am dismissed.

Similarly, when lecturing, particularly about attitudes, actions and prejudices that people with intellectual disabilities face, I often face people who would really, deeply rather that what I was saying wasn't true. In order to facilitate that, I meet the same kind of accusation, I'm exaggerating to make a point. It's been suggested that my own disability has made me less able to be an accurate observer of such things. (Really!?)

In both situations, I am not speaking of MOST people, either readers here or those who attend my lectures. I am speaking of SOME people. Most get it because most see it themselves.

Well, then, sometimes when I lecture there is another person with a disability in the room. This is always wonderful. Like the other day in California, I saw a woman with a disability, using a wheelchair like mine, but hers was way cooler, roll in. She became my 'rock' for the presentation. I'd look back at her after describing something of the disability experience and she'd be giving me the thumbs up or nodding in that knowing manner. It's the kind of reassurance that you need now and then.

It's not just me.

I'm not what I'm accused of being ... and over sensitive, hyper critical poor observer of my own life.

I share these experiences with others.

At break she came to speak with me, Robin, she has given me permission to use her name, and I had a great chat as we shared experiences and just communed disabled person to disabled person. We had a conversation that could ONLY be had between two people with disabilities. She gave me the gift of confirmation and of true understanding.

It's not just me.

We people with disabilities have something to say about our lives.

I'm privileged to have an audience, mostly of willing listeners and willing readers - but for those who think I go to far and overstate the case, knock on the door of another person with a disability and have a chat. I'm not alone in this. Robin reminded me of that.

Tuesday, November 18, 2014

The Centre Seat

On our flight home from San Francisco, we were pre-boarded, as per usual and were warmly greeted by the flight crew. Our seat, as we had chosen, was right at the very back of the plane. We got there, put our stuff away, and got into our seats. Then the plane began to fill with other passengers.

A fellow came to the row ahead of us, and began putting things away in the overhead bin. I noticed, in the way that people do, that he was of a different culture, and colour, and faith than I was. I say this, because it's true, and because noticing doesn't mean anything. I saw that he noticed that I was fat, I wasn't offended by his noticing, because, well, people notice.

Aside from everything else I want to say here that I don't like or appreciate when people claim NOT to notice difference. "I don't see your disability," said someone to me a few weeks ago. It was meant as a compliment because, of course, disability is something best not seen. Well, I am disabled, I am fat, I'm good with that, I'm good with people noticing too. Staring, mocking, and other forms of social violence, I'm not good with ... but notice is just notice.

Back to what I wanted to write about.

As it turned out the fellow sitting in front of me had two empty seats beside him. Somewhere about a half an hour into the flight he moved over to the centre seat. I was on the aisle, Joe was by the window, the centre seat was free. He then turned back to me and asked if him putting his seat back would be in my way at all. I told him that it wouldn't be. He then reclined his seat and napped for much of the flight. (I wish I could do that.)

When we landed, as we were at the back of the plane and as we had to wait for my wheelchair to come up from the hold of the plane, Joe and I just waited. Acting to fulfil a resolution I've made to say thanks when thanks is due - something that should be automatic but, for me, isn't - I leaned forward and touched his shoulder to get his attention. He turned to me with some alarm in his face.

I said, 'Excuse me,' and I saw the alarm increase as he realized I was going to speak with him. A total stranger was going to say something and it caused him tension. I noticed this, in the way that people do, but continued.

'You are a kind man,' I said, 'I appreciated you moving over and using the centre seat to recline, it was really considerate and it made my flight better.'

Relief flooded his face, he said, quietly, 'My faith leads me to kindness.' He looked at me, like I might disagree.

'And mine leads me to gratitude, we're a good pair,' I said and he laughed.

As he gathered his stuff and readied to leave the plane, he turned and said, 'Thank you. Just, thank you.'

I am very aware of what it is to live different in a world hostile to difference. I am very away of the constant threat of conversations becoming confrontations. I am very aware.

For me.

I can forget that there are other differences. Other dangers for other people. Perhaps if more were moved to kindness and more were moved to gratitude our world can change. I'm not exactly sure how, but I know that I have been changed because of that brief conversation on the plane. I think my heart may be a little wiser because it knows it has to also be a little bigger.

Monday, November 17, 2014

Elevating Bizarre

Sometimes it's just bizarre.

Really. Really. Bizarre.

There are five people in this little story. Four of us want to use the elevator, there's only one, the others are down. The fifth person in my tale is the security guard. The guard is wearing one of those uniforms that when you first glance at him makes him look like a police officer.

It starts when the elevator arrives and the door opens. After the passengers depart the security office bounds over and puts his arm out to ensure the door does not close. He then indicates that I am to get on. I need to get on last. I tell him this. There is enough room for everyone, but I have to get on last. If I get on first no one will be able to get by me into the elevator.

He doesn't hear me, or won't hear me, he keeps indicating, with a big smile to show he's being nice, for me to get on. I look to the others waiting and ask them to please get on, I tell them I'll get on last, that way everyone will fit. They all, seemingly intimidated by the security guards insistence that I get on, tell me to go ahead and get on.

He's standing there grinning and waving for me to get on.

Everyone else is standing there waiting to get on.

There is only one elevator, it's being held up, others are waiting on other floors. We just need to get the fuck on to the elevator.

I've had it.

I KNOW HOW TO BE IN A WHEELCHAIR, I KNOW HOW TO GET ON TO AN ELEVATOR. NOW PLEASE GET ON SO I CAN GET ON AND WE CAN GET ON OUR WAY.

Everyone looks at me as if I've suddenly arrived from Mars, as if I'm incredibly rude. I don't feel rude, I feel assertive.

I look at one person, just one person, a pleasant faced woman who is one of the four. I say directly to her, quietly, 'please get on.' She nods. She moves forward past the protesting security guard who still wants me to get on first. The others follow her. They move to the right leaving the space I need to get on to the elevator. We all fit perfectly.

The guard, still standing there scowls at me when I get on.

I don't care.

I know how to be in a wheelchair.

I'm the expert.

Listen to me.

Sunday, November 16, 2014

Home and Ramped Up

First, let me apologise for disappearing for a few days. Our trip to California was packed, we stayed in a hotel in Emeryville and then drove to the three cities we worked in. It was great not have to pack and move every day but we had to leave early, because of traffic, and we got home to the hotel lateish also because of the traffic. By the time we were home, after driving and lecturing (while still coughing) and then finishing up all emails and questions from work, I was toast. There just wasn't much energy or room for much more.

But, I'm happy.

I'm happy because it all went well. I met wonderful people. Audiences were both receptive and appreciative. It felt, really felt, like the whole thing mattered. There's no better feeling than that of having made, even a slight, difference. And I had that feeling three days running.

So.

I'm happy.

The biggest challenge for me in air travel, now, is the ramp, in Toronto, at the end of the trip. Toronto airport is constructed such that there is a huge long ramp down to the planes. I know most airports have the same, but Toronto's is, in my experience, the longest and hardest ramp. At one time, if I took my time, I could walk the ramp up. I can't any more. My balance, my strength, just isn't enough.

As we checked in yesterday, I asked the woman who was helping us if she could get a message, somehow to Toronto, letting them know that I needed the 'pushing machine' with a wide chair.  She said that she would do what she could. I sat and watched her type in the request and she said, 'Well, let's see what happens.'

I didn't think about it much on the plane because I knew, whatever happened. I'd get up the ramp one way or another. If it took me a long time, it took me a long time. When we landed we waited to get up until we saw the wheelchair being taken out of the hold and pushed towards the front of the plane. I got up and got to the front of the plane to see both my wheelchair and the 'pushing machine' (it must have a name) with a wide chair.

I'd never ridden in one of these before but I got it, got settled and with a push of a button we began a slow but steady ride up from the plane to the top of the last of the three ramps, two short, one long. It was awesome. Just awesome.

From where we were left off, it was an easy push to security and then to baggage and out. My arms and shoulders are at full strength because I've been in my manual a lot recently and have been able to push, really push, myself longer distances. Even over rugs!

Part of me, for a few minutes, though, felt badly in asking for this new service. I've known about the pushing machines for a long time, but I've never used them. Oddly, I felt proud of that. So, if I was proud of that, how was I supposed to feel about using them now? I'd just finished a three city lecture tour, I'd rolled myself miles in my manual chair, and I was feeling guilty - like I was lazy or something. But then, I realized that I need what I need and that's the end of it.

I'm glad I off-loaded the guilt before I got on the chair and rode up the ramp. Because if it's the new normal for me when I travel by plane, I'm gonna enjoy it.

And I did.