Monday, November 24, 2014

The Path

A little girl is making art. It's a project that she is working on, along with a lot of other kids, in a school where I am going to be giving a lecture, in the auditorium, at the end of the school day. We arrived early, as Joe and I are in the habit of doing, and Joe stayed in the auditorium to set up while I went on a tour with the Vice Principle.

We come upon this group of kids engaged in the making of art. I roll into the room in order to watch. I'm told, proudly, by the Vice Principle that it's an opportunity for me to see 'inclusion in action.' And, it's true. There are kids with both physical and intellectual disabilities working right along side peers without disabilities.

Near me is a little girl, maybe six, maybe seven, with Down Syndrome, working on the project. She is laser focused on her work, it's wonderful to watch kids who are totally absorbed in what they are doing. The teacher begins to let the kids know that they'll be wrapping up in a few minutes. The little girl with Down Syndrome has a Education Assistant beside her now. This Assistant has been in the room checking in with other kids who have disabilities and now has sat down beside the little girl who is working on her project.

The aide, in a helpful voice, says, "I think you should colour in these spaces," and points to a few spots on the paper. The little girl looked at her and then continued on. The Assistant was distracted for a few minutes by a short conversation with the teacher. When she turned back and looked at the girl's work, she said, conversationally, "You didn't colour these spaces like I suggested."

The little girl continued her work but obviously wasn't going to take the Assistant's advice. When prompted again, the child turned to the Assistant and said, "It's my art."

The Assistant was brought up short but responded wonderfully, "You're right, it is your art, you need to do it exactly like you want to do it."

The child claimed her right to make art the way she wanted to make art. In doing this, the child signalled that she has the power to make her own decisions, to say 'no' to authority and to assert her will. She did all this calmly and strongly.

This little girl is on the path to becoming a strong woman.

Notice that though she has Down Syndrome, that descriptor isn't in the sentence above. You know why - because every little girl needs to be on same path.



Sunday, November 23, 2014

To The Red Headed Kid In Front of Me

Dear Kid In Front of Me in the Lineup,

Before I start, let me just assure you that I think you are an amazing kid. I know you aren't used to getting letters from strangers but this is the only way I can think of to express my admiration of the person you already are and the person you are still yet to be.

When I pulled into the lunchtime line up and saw that I was fifth or sixth in line behind a bunch of young teens, yes including you, I immediately tensed up. You see these are really unsafe situations for me. I'm fat, I'm in a wheelchair, I'm a pretty big target for really small hearts. But I noticed something right away. I saw that they were switching their gaze, and their open hostility to me, from you. Of course I saw your bright red hair. You already knows that in a world browns and yellows, bright orange red hair, makes you really, really, really easy to see. Like me, I hope you don't mind the comparison and somehow I don't think you will, I'm guessing that there are times you just wish for a moment or two of anonymity.

So, they switched their gaze and their comments from you to me. Do you know kid, that I was in this situation once, when I was your age, and I didn't handle it like you did. For me, I was so weary, and this is neither excuse or reason what I did was wrong, of being treated differently that when I had the opportunity, when another walked into firing range, I joined in. I became what I hated. It was only for maybe two or three minutes and I want you to know I am more wounded, in real ways, by what I did in those two minutes than I was from all the years of being the 'one'. The one that was easy to laugh at, to mock and to purposely hurt - I don't like the work bullying because it doesn't express what I experienced, I experienced violence, social violence. That means of course, that what I did in those couple of minutes was violent, purposeful violence. I won't minimize it by calling it bullying.

You, like me, saw them switch from you to me. I saw in your eyes, when you looked at me, a deep understanding. You stood there thinking, only for a second, and then you did one of the bravest, smartest, most compassionate things I think I've ever seen. You squared your shoulders and you pushed through the crowd of boys, the ones who had targeted you, before me. They parted, just parted, in the face of your determination. You picked up a tray, the kind you put food on, and brought it back. You stood for a couple of minutes, knowing they were watching you, then you turned and you said to me, "Would you like this?"

An act of kindness, in the midst of meanness and, yes social violence, you did something kind. You exploded the atmosphere with what you did. I thanked you loudly, Ruby, standing beside me, thanked you too. In those seconds it was just you and us. The rest were irrelevant. They were made bystanders to a moment of connection. And connection trumps disconnection in the way love trumps hate, every single time.

After our thank yous you turned back into place. And those that had been shamed, not by what you did but by knowing they did not do what you did, stood silently, not even looking at each other, as they waited their turn.

So, red headed kid in the line in front of me, thanks.

I wish there was a bigger word than thanks, but for now that's all I got.

And I give it to you with the deepest respect for who you are and who you will one day be.


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


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.