Saturday, May 27, 2017

The Boy, The Cruelty, The Toy

It surprised me when he stepped on the elevator with me.

It surprised me even more when I spoke up.

He was in his late teens, he had been with a group of friends, in the mall. I had turned towards the elevator and in doing so came into their view. They all, to a one, looked over at me. Then, predictably, they started laughing, and glancing over at me. My appearance sometimes doesn't meet a verbal response, sometimes it's just glances from me to each other and back. I've been in this situation before and there are several possible responses, I was tired, I chose the 'go by in dignity' response, which, by the way, isn't 'just ignoring it'. To make it obvious that you have heard and seen the actions of others and to proceed ahead unbowed, unwilling to give them more space, to go bravely by people who have identified themselves as enemy, is action.

I waited at the elevator with my back to them. This, for me, is an act of courage. I don't like having cruel people behind me. I feel really vulnerable. I don't know when the words will translate into action, for the glances had become words, said loudly, for my benefit. Sometimes elevators run on molasses time and this one when it finally arrived, I felt older.

I got on, and turned around, just as the door was closing, a hand shot out to stop it. One of the young men got on the elevator with me. This surprised me and scared me a little. Alone, in a small space with someone who thinks me less than human. I was going to 5, he to 6. At 3, I'd had enough.

"Does it bother you," I asked me, in a quiet and unemotional voice, "how easy it is for you to be needlessly cruel?"

He was startled and said, "What?"

Knowing he'd heard me, I asked an expanded question, "Does it bother you how easy it is for you to be needlessly cruel? Do you ever worry that as a father you will be abusive, that as a husband you will batter your wife? Cruelty comes easy to you. Does that bother you?"

He was shocked, so shocked he wasn't angry, "We were having a bit of fun, that's all."

"Does it bother you that you define humiliating a stranger as fun? Does that worry you for who you'll be in a few years. Will you humiliate you wife? Will you humiliate your children? I would think that at your age you'd be thinking about this? And so you know, that wasn't fun for me?"

Now annoyed, "Sorry." It was an apology with sarcasm.

"Does it bother you that you can't even apologize properly to someone that you have purposely and needlessly hurt? Don't you worry even a little about the effect of what you did on me?"

The door opens, I roll out and stop, before the door closes, "Maybe you should think about you casual cruelty and your inability to take its effects seriously before you ever marry or have children. I fear for them."

"Fuck off," he said, but there were tears in his eyes.

I don't know what those tears meant, but I meant what I said. I fear for those who find cruelty a toy, who will they become if they don't, one day, pack it away.

Friday, May 26, 2017

It's No Problem

We came into the lobby and were blown away. It was completely redesigned and really fresh and beautiful. It's a smaller chain known for room that are reasonably priced and for pretty good service. As we are in our 60s and as we'd been driving for hours our first request was for directions to the toilets. We were pointed in their general direction. There was a men's, a women's, and and all genders toilet, I was initially pleased to see the inclusivity until I noticed that none of them had the disabled symbol on them. I guessed that the all genders toilet would be the one and I guessed right.

Now I'm feeling a little bit bad for feeling a little bit annoyed. Why the loss of the disabled symbol? Knowing at a glance which washroom I can use is really helpful. Was I being petty? Was I simply tired and churlish? I don't know, but I felt that it was like the hotel saying, 'there's only so much diversity we can deal with so be grateful for what's here and hush up." When I mentioned the bathrooms to the clerk he went on and on about how nice it is to be welcoming to everyone. I pointed out the lack of disabled symbol and the guess I'd made. It was like talking to someone who cared a lot about what he already thought and didn't want to think any more thank you.

Then, after checking in, I wanted to go into the little shop beside the registration desk to get a snack for the room. It wasn't wheelchair accessible. They had these poles holding nicely designed curved frosted glass and at the bottom of the pole was a huge round disk. I suppose to others it would look pretty but to me it looked like a significant barrier. I tried and was right, I couldn't get in.

I remarked to the clerk that when doing renovations, which he had proudly spoken of while we were checking in, so I knew they were recently done, it would have made sense to have this area wheelchair accessible. He said, "But it's no problem, I can help get you what you want.?"

"That's not the point," I said, "I would like to go in and select myself, I can't even see everything from here."

He smiled at me like he would a child that didn't understand the way of the world.

I do understand the way of the world.

And the way of the web.

Yes, the letter is already written.

I should have kept count of how many of these I've written. I didn't realize upon becoming disabled that I'd become a prolific writer of letters documenting, to those who think we'd not notice, prejudice built and bigotry encountered. But they have to know we notice. They have to know.

Wednesday, May 24, 2017

#Disability Say The Word

It was a rainy and blustery day in Ocean City and our plans for going out for a walk along the bay or the ocean blew away in the wind. After getting to our room and meeting with organizers, Joe and I went for a tea in the pub. We managed to find a table by the window and sat comfortable and warm and watched the waves crash on the beach and the wind whip throw the palms. It was wild and wonderful and in all ways beautiful. We felt blessed to just be there.

Suddenly we were approached by a woman sitting at the table behind us, she assumed great authority and she placed one hand on Joe's shoulder and one on my wheelchair. She started chatting with us about what we do and why we were at the hotel. Then she turns to me and asked how long I'd been "differently abled." My spine stiffened. I'd never been called that before. I'd heard it used, of course, but never in direct reference to me.

She said that she was trying to be politically correct and asked if she'd got it right. I told her that she hadn't got it right that the term was simply "disabled" or, in my case, "wheelchair user" would be fine. She clearly didn't like either of those words but she accepted that that was my "opinion."

I know that some times I have trouble letting go of things, but the words "differently abled" rang in my ears for hours afterwards. I couldn't make them fit into any part of my brain, they seemed to mock me with a false sense of acceptance and a large dose of denial. I think that first we euthanize speech, when it comes to disability, and then we move from there. I want to remain spoken. Euphemism and euthanasia both begin with 'eu' from the Greek for well but the endings mean different things, well said and well dead.

Keep me alive in language.

"Differently abled" attempts to smother disability in shame.

Speaking plainly, fuck that.

Tuesday, May 23, 2017

Cropped Shame

After having taken a photo with Vanessa, a woman we've known for years, to put on Facebook, I got back to the room and set about editing the photo. I looked critically at it and then began to crop.

This is what the photo looked like:
Photo description: Vanessa and Joe behind me as I sit in my wheelchair. The photo shows us all, in a vertical shot, standing or sitting full bodied.
I then cropped the picture cutting out the bottom half of me, leaving only the top half of me, erasing the largest part of my body, my belly and my legs. This is what that looked like:

as described in text above
Then I began the process of uploading the edited picture to Facebook. As I was doing that I was thinking about my keynote speech tomorrow and about how part of it was how we all need to claim who we are and thereby push shame aside. I looked at the edited picture. I looked at the original picture. I suddenly saw how shame had become an unconscious habit. Shame was just something I did. When I realized that, without even thinking much about it, I had erased a part of who I was, the way I existed in the world, I felt such pain. Why? Why does shame live when I purposely don't water it, I don't set it in the sun, I don't nourish it. But, then maybe I do.

I erased the cropped picture and put up the original:


This is who I am.

Monday, May 22, 2017

"I'm tired," I Said

We arrived at a hotel, after two calls to confirm our accessible room, to be given a room that was not accessible. You can picture all that ensues, I just can't write that story again. We eventually find another hotel, load the car and drive over. We'd arrived late at the first hotel, after a full days work and a six hour drive, now it was 2 hours later and we were checking in to a different hotel that happened to have an accessible room.

That weekend some time I had to write the obligatory letter of complaint, sent to the company as well as the actual hotel where this happened. I tried to explain both the situation and what the situation had meant to me. I received an apology letter that I felt, as I said in my reply, was generic and that, while recognizing the situation, didn't seem to recognize the effect on me as a disabled traveler.

This all ends in a phone call between myself and the manager. We spoke and she said something that really angers me in these situations and I'd like to hear your opinions on this. She said, "I understand how you feel." I stated clearly that she could not and did not. In fact I ranted. I'd had enough of this kind of bullshit approach to empathy. "I'm tired," I said "of non-disabled people telling me that they understand how I feel when they simply can't, they don't know what it is to be offered a room that you can't poo in, they don't know what it's like to be suddenly, unexpectedly homeless, they don't know what it is to be on display in a lobby as others check in looking at you with pity and slight superiority because they can sleep in any fucking room in the hotel and you can only use the three or four that were granted you for us, they don't know what it is to have used up all your energy just getting there and not knowing where to pull more from to try and find another place, drive to another place, hope that the other place got accessibility right, they don't know that trust from a disabled traveler is different and deeper than it is for a non-disabled traveler, they don't know that our trust given is absolute and when it's broken it hurts, they don't know that disabled travelers move about the world in fear of arrival, in fear that their bodies will make them suddenly, like I was, homeless. You don't understand."

"I understand how you feel."

I do not understand what it feels like to be a person of colour being pulled over by the police.

I do not understand what it is to be a woman walking alone at night.

I do not.

I can only understand my responsibilities in the face of a world that devalues others and my responsibility to change what is in my sphere of influence, starting with my own attitudes and my own actions.

We hung up from the call each angry at the other. She had to control hers, it was her job to stay cool, and she did. I didn't have to control mine, except to not personally attack her and to stay focused on what happened and why it was important. But the "I understand..." statement pushed a button in me that unleashed a torrent that I couldn't stop or control.

Can the non-disabled 'understand' what it is to be disabled and not have access available? I'm curious, what do you think?


Sunday, May 21, 2017

life anyway


Photo Description: A bra made of crayons decorate a crayon box with large crayons, the quote "Broken crayons still color" is written just beside a broken crayon. Artwork designed and carried out by Thea Nelson
We were wandering through the mall in Salisbury when we came upon an exhibit of artwork done by various companies or artisans all which feature a bra incorporated into the work. You can vote for your favourite if you make a donation to the breast cancer foundation. Of all there I found myself really struck by the one that was made of crayons, with the "Broken crayons still color" tag line. In fact it was that line that stopped me in my tracks, I'd been pushing hard, not the bras themselves. I didn't even realize what it was until I'd stopped and noticed the crayon bra along with all the others on display.

There was something really powerful and really healing in those words, something that really touched me. I liked the idea that brokenness, even that which can never be mended, doesn't end usefulness. I liked the idea that healing isn't necessary for those who've been wounded in order for them to move on and still contribute and be of service and of value. I don't know that I've ever said out loud how I believe that there are some areas of brokenness that are simply never going to be made right again, but that isn't where it all ends. It doesn't end with being broken, or even the sense of being broken, it ends with being broken incorporated into a life anyway.

This is my experience. There are parts of me, shattered. There are parts of me forever tender to the touch. There are parts of me that are dealt with only by doing and being anyway - doing damns the darkness. I sat there in my chair reading this message over and over and over again. Simply said. My eyes moved from the words to the bra and I couldn't help but smile. The audacity of a crayon bra, last years winner in the annual contest, having raised money and consciousness and awareness pleases me.

What art and a few words can do.

"Broken crayons still colour."

Can I hear an amen?

Saturday, May 20, 2017

She Didn't Look

He approached me from the front. I was pushing myself to the rest stop up a slight grade in blistering heat. He drew near, said how hot it was and asked if I wanted a push. I told him that I was good and thanked him for the offer. He smiled and wished me a good day and headed on in ahead of me. I was a few feet behind and Joe joined me from parking the car, the disabled stalls were all full and he'd had to park a distance away, and we went in. After using the facilities we went to get a bite of lunch, it had been a long time since breakfast and we were both hungry.

In the line up, just ahead of us, I ran into the fellow who'd offered the push who was accompanied by his daughter, a young woman with Down Syndrome. Forgive me but my first thought was that this explained why he was so respectful about offering help and having it refused. Not a lot of people do that with the grace that he did. They stepped aside to let us go ahead because they went back to get something to drink. We were through and seated when they were back in the line up to pay.

I noticed that his daughter was ahead of him, holding her lunch tray. When she got to the cashier she pulled out her money and gave it over. Here's the amazing thing. It's a small thing. But it's a huge thing too. During the time she was paying, and accepting the change, and putting it back into her purse, she never looked to him. She didn't look for approval. She didn't look in fear of having made a mistake. She didn't look to him for a cue of any kind. She just did what was needed to be done and then picked up her tray and moved on, going ahead, while he paid, to select a table.

In the course of my years of work with people with intellectual disabilities I often see something quite different. I often see people who, being constantly taught and constantly critiqued, often look to parent or support provider for approval or reassurance or in slight fear of having made yet another mistake. She did none of those things. It seemed like she'd also been taught, because all of us, if we have it, are taught self confidence.

I realized then that when he approached me, to offer the push, he was alone. She was not with him. She must have gone ahead, not stapled to his side, and gone in herself to a busy rest stop. He and she were separate and independent people together by relationship and by circumstance rather than by desperate need. I don't know anything about this man, or this woman, but I do know that both of them respect each other and both of them love each other and both of them are comfortable with their own power.

There are lots of amazing parents out there. There are lots of wonderful support staff. The results of their very best work is often in what's not seen, like the absence of a glance, and small acts of complete confidence.