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.

Friday, May 19, 2017

As If I Am

It was already pretty hot when we hit the street yesterday morning. I lamented that I'd used up a lot of energy just getting to the start point of our trip to the museum where I would lecture. There was a long ramp from the hotel up to the street that requires a sustained and difficult push, I'd done it twice before, and knew I could, but with my shoulders already burning, I was worried about what was yet to come.

Crossed the street once and then again to get on the side of the street without construction and did okay, but just okay because the slant really put pressure on my right arm. Then we hit the bricks. The front wheels rebelled and hung up on nearly every one. It was impossible to push through. Joe offered to push but I didn't want that. I turned around so that my large back wheels would go over the bricks and used a combination of my arms and one leg to propel me backwards. It worked, I had to change which leg I used a couple of times, but I made progress.

Once back on regular pavement I turned around and did better. I felt a real victory when we made it to the venue and I had gotten there on my own steam.

I write this so far as if I was alone on that sidewalk. I wasn't. There were lots of people walking, in both directions, all in a hurry to get to where they were going. The sidewalks aren't wide and there were the occasional bottlenecks as people going one way and people going another had to figure out how to both get around me.

There were comments, of course.

There were angry stares, of course.

But I had no breath to say anything, all my energy was focused on making it down that sidewalk in any way I could to get to where I was going.

They were not the only ones with a destination.

They were not the only ones with both a purpose and the pressure of time.

Therefore they were not the only ones who had a right to be there.

I did too.

At the end of the work day it was blisteringly hot, and we'd planned for Joe to get the car because it was an uphill journey.

But, we took it slow, I'd figured out one the way down how to do it, I knew how to get back.

And I knew, and fully understood, that the sidewalk, the journey and the destination, were all mine too.

Why do I need to keep learning this or realizing this over and over again?

I'm still adjusting, 11 years later, to my right to be disabled and my right to be part of the crowd and my right to have a life to live.

I want to feel free, but until I do, I'll live as if I am.

Thursday, May 18, 2017

Hush Up Yoda

Joe, the explorer, mapped it out. I'm lecturing this morning in a museum just down the road from our hotel. Then in the afternoon, I cross the street and come back a bit to the offices where I'll be presenting for the rest of the day. I have decided that I'm going to push there and back.

Sidewalks are very hard for me, but the distance isn't long.

Last time I tried, I made it, almost the same distance, but it was hard.

I'm a little stronger now.

So, notes in my wheelchair bag, Joe beside me, we are heading out on this adventure. I hope I have enough breath to make it through the day. I hope I have the strength to make it there and back.

I am happy that trying is even an option.

Yoda said, 'try not, do or do not, there is no try' ... um ... I call intergalactic crap to that nonsense, of course there's try. I try until I do. Or, of course, do not.

And Nike, you never 'just do it'. Please, sometimes fit people think that achieving something happens by a magical act of willing and doing. Let me make this clear if I do it, there's no 'just' about it.

And to my gym teacher in grade 9 who gave me an F on my ability to run around the track. You shoulda put me on freaking wheels man

I'm anxious, it's an important lecture, they all are to me, and I don't want to mess up by over-exerting myself. But I also don't want to begin with disappointment about giving up before beginning.

So.

We shall see how it rolls.