Tuesday, October 21, 2014

Today

In moments we head to the airport.

In moments I have to put myself and my needs into the hands of others.

And sometime, noon, the day before.

I begin to pray, to hope and to will into being.

A day full of decent people.

I don't ask for kind people.

I don't ask for generous people.

Just decent.

I don't want humiliation.

That's all.

Really.

That's all.

Monday, October 20, 2014

Fury-ous

I lost it yesterday.

Just lost it.

In order to understand, for those of you who don't use a wheelchair, I need to explain the build up. I had to work Saturday until two and therefore didn't get home until somewhere after three. We got home and left immediately, planning to catch the four o'clock showing of Fury. Never realizing that it would be me who was unleashing fury even before getting to the movie.

The sidewalks were packed and after a block or two we regretted not just taking the subway. I drove steadfastly and carefully. I've never run into anyone, although others have run into me, and I fill my mouth with politeness - excuse me please, thank you very much, could I just get by you there. These are mostly directed at people who are standing in the middle of a sidewalk texting or talking or otherwise 'I-ing' with their phone. It gets tiresome using manners when your whole being wants to shout - get out of the freaking way!!!

I was pretty used up with my store of politeness and patience, therefore, when I got to the lobby of the building which houses the cinema on the fourth floor. We went to the elevators and were the only ones waiting. The building has a remarkable set of escalators giving those without disabilities and without strollers an excellent option. However, there are those, like the twenty-somethings, out together in a group, gathered behind us, who for some reason prefer the elevator.

We were clearly there first.

We were clearly in front.

This means that we were waiting longest.

The door opened to an empty elevator and they swarmed around me piling on the elevator. I was trying to turn around to back on when one of them almost ran into me. I stopped. I was furious. I said, "No, no, please go ahead!" Then I brought my chair to a complete stop. One of them told me to go ahead, I said, knowing that the elevator was full now, "No, you are so damned desperate to get on before the cripple does so get the hell on." They got on.

I turned to see Joe in the elevator holding the door open for me. The others were on, if they packed to each side, I could get on, but they stood there looking at me to solve the problem. Well, I did. "Joe, get off, we'll take the next one unless selfish prats swarm us then too. I guess being first in line means nothing to people who consider themselves above such conventions." Joe got off, the door closed on me saying, "I hope you very important people find someone else to teach your children manners."

We managed to get to the theatre on time. I asked Joe if he was looking forward to seeing Fury, he said, mocking me, "I feel like I already have."

Sunday, October 19, 2014

Spitting on Spite

I was reading an article today about sexuality and disability and the feature was about a woman with cerebral palsy. The subtitle of the article said something like (sorry I looked but couldn't find it again) 'She doesn't let cerebral palsy get in the way of living her life.' Now, remember, this from my remembering - I am sure I got some words wrong but what I didn't get wrong was the fact that she not letting her disability get in the way of her living her life.

This kind of thing annoys the shit out of me because it places 'disability' at the centre of the problem, it states that disability, itself, is the barrier, it telegraphs the message - DISABILITY DOES BAD THINGS TO YOUR LIFE. There is no question that having a disability adds a whole new wrinkle to living one's life but pretty much everyone with a disability learns pretty quickly that disability is the LEAST of the problem.

Attitudes.
Barriers.
Prejudice.
Barriers.
Hatred.
Barriers.
Ignorance.
Barriers.

There's a very short and not even slightly comprehensive list of what 'gets in the way' of living life fully.

Sexuality and disability - check the prejudices and the assumptions that people make of us as somewhat slightly less than fully human and only slightly below the 'icky' line of sexual attractiveness.

Employment and disability - check the attitudinal barriers that are bolstered by the physical barriers, shit if I had to make the work site accessible I'd have to work with 'those people' so I can pretend it's the stairs not the stares that are the problem.

Access and disability - check the frequency with which people with guide dogs are disallowed in stores and in churches and on transit. As was pointed out recently (Hi Amy) that no one in the Western World is unaware that guide dogs and other accessible devises are allowed in public spaces. Denying them is, then, not an act of ignorance but an act of hatred. Get it right.

I've even had people say to me that 'in spite of your disability, you've done pretty well,' I wanted to respond, 'And I must say that I think you've done well in spite of being a woman.' I didn't say it, I wouldn't say it because even to make a point I don't think that sexist language should be part of a discourse. Saying 'in spite of being who you are ... ' means 'who you are is a bad thing and you are coping well, poor dear ...'

If non-disabled people want to write about disability shouldnt' get have at least an inkling that we also may be the audience. That subtitle on that article was written, not for readers with disabilities but for readers without. It was written up to shore the idea that 'hey you don't have to do anything because what she faces she faces because of cerebral palsy none of it could be because you are a hateful ass who refuses to see people with disabilities as fully adult and fully human.'

This isn't an subtitle that suggests the article is about her at all, it assures non-disabled people that it's safe to read - the disability stands accused so you won't be.

And.

No.

I didn't read it.

I couldn't get by the subtitle, it was like the writer placed a staircase in front of the article barring access to those of us who live with disabilities and who think while we read.

Wednesday, October 15, 2014

Citizenship!

We voted yesterday.

And I had a thought.

As we arrived at the 519 Church Street Community Centre we saw signs indicating that this was indeed a polling station. Even though we've been there several times and knew where the accessible entrance was (thankfully not through the back door) it was cool to see that there were really clear directions for wheelchair users and others who needed a ramp placed strategically to catch those coming from either north or south. Once into the building, again there was clear signage fro both those who walked and those who rolled. Further there were those there to help out anyone who was even slightly confused about where to go.

Inside I was given clear directions, in plain language, for how to fill out the ballot. As it turned out I was glad of the instructions because I'd never seen a ballot like the one I'd been given and it needed to be marked in a way I've never done before. I'd have figured it out, but the explanation was clear, quick and easy to understand. They had a voting both for people with disabilities who needed adaptive equipment (I didn't see what the equipment was or what it did) but as I just needed a bit of space they simply pulled one of the tables out a bit further from the wall.

I voted.

I handed it in.

I saw it processed.

My civic duty had been done.

But, what I thought about, was that everything that was there for me, every single adaption, from the ramp to the building, to the door openers, to the disability signage, to the use of plain language, to the adapted booth, to the quick and ready assistance to move a table - every single thing represented a victory, represented a battle won for access and equal citizenship for people with disabilities. I was there voting because others fought, not for the right to vote but for the right to be able to vote - to access the electoral process.

I voted because others made that possible.

My citizenship and full participation, as a wheelchair user, was not granted to me by the simple fact I was born Canadian.

My citizenship is hard won.
My citizenship was established by battle not gifted by government.
My citizenship isn't to be taken lightly.

I owe a debt to those who fought for and won the ramp that takes me from passive recipient to active participant.

I owe a promise to those yet to come that what we have we will not loose and what we need we will continue to fight for - and voting is a helluva good place to start.

Tuesday, October 14, 2014

The Big Ask

So, we were out for a stroll. It was a cool but sunny day. We both noticed a fellow, about a block ahead, sitting in a wheelchair, holding out a cup to passersby. It is our habit to drop what change we have into hands, or cups or caps. But, this time, as we dug in our pockets, we didn't have any change to give. It is also our habit to smile at or acknowledge in some way those who are asking for money. I refuse to make invisible those who are, often, highly visible.

As we got close we could hear him speaking to others ahead of us. His was not a gentle or kindly ask. He badgered people. When we passed I smiled at him and before I could say we had no change he said, "I don't need your fucking smile, I need money." Then he held out his leg to show that there was infection on his ankle. Whatever he said, we didn't have change on us. We kept going. There was nothing more we could figure to do or say.

Two blocks later we heard our names called, we stopped and turned around to find the grinning face of a friend of ours. After greeting each other he asked if we had been accosted by the fellow in the wheelchair asking for money. We said that we had. He told us of his encounter. The fellow asked him for some change. He, like we, also is someone who gives out change, but he had none. When said this, the man paused and said, "Well, then, can you spare a Viagra?"

We all howled.

I took great joy in pointing out that the man didn't assume that I needed Viagra! Our friend shyly admitted that he hadn't had those with him either as he hadn't anticipated using them on his walk to the store.

"Hey brother can you spare ... "

Needs are needs.


Monday, October 13, 2014

The Mind's Heart

Yesterday, on Thanksgiving Sunday, Joe and I went to a movie. We are having a house full today and we will feast to our fill, so yesterday we ventured out to do a few chores and then catch a flick. When the movie was over we went to the elevator and waited for it to arrive. When it did, three times, it was packed full. Then on the fourth go there was one man on it. He was tall and thin and stood in the middle of the elevator holding on to his  walker. When he saw Joe he began to move aside but when I came into view he moved back to the center and said, "There's not enough room." I asked him to move just a bit to one side or the other. He angrily stated that "There's not enough room." His face set in anger. We didn't desire an argument so we let him go down alone.

Maybe it was just in the spirit of the season but my anger and annoyance at his attitude and behaviour turned suddenly into a spirit of thankfulness. Gratefulness.

I am thankful for those who willingly share space with me, I don't notice them often, maybe only when in the presence of someone who doesn't. Those people who willingly move to the side, or without even noticing create a little more space for my chair. For those who see others as worthy of sharing time and space, I am grateful.

I am thankful for those who live their lives in good humour. The angry set on the man's face, as the elevator door closed, told me that he spends most of his time angered. But there are those who greet me, who greet others, with great good spirits, with laughter and with warmth. For those who live with laughter on their lips, I am grateful.

I am thankful for those who speak to me, and to others, with gentleness. I believe that the welcome in the heart warms the soul of words. I have, at times of weakness, needed to be wrapped in the warmth of words. They say that at the big moments of life, when we experience loss, or disappointment, or rejection, that there 'are no words.' But the words don't matter, it's how they are fuelled with love and with warmth and with kindness. When that happens, every word is the right word. For those who speak with warmth and welcome, I am grateful.

I am thankful for those who's automatic response to the world they live in is kindness. I am speaking of the everyday kindness, the goodness not thought of as goodness but as decency. I am speaking of those who don't actively do 'random acts of kindness' but instead live with kindness in their heart and their heart at the centre of their mind. For those who live kindly, in a world that rushes by, I am grateful.

I am thankful, really thankful, for the people in my life, who fill my life, who provide for me a sense of belonging and of purpose. I am thankful, eternally thankful, for those who have blessed me with time and with welcome, those who are now gone but still present in my heart, who's words still comfort me. I am thankful, really thankful, for now, right now, for this moment and every moment thereafter that comes - the future will be and the past once was but it is 'now' that I own ... and right now my heart is full of thanksgiving.

Sunday, October 12, 2014

Chris Eden: A Thanksgiving

It's Thanksgiving Sunday here in Canada. I am up early, I look out the window beside me into darkness. I like the quiet of an early morning. I like the time it gives me to reflect. So much of how we live our lives is a distraction from how we live our lives. For me, moments of quiet, deep, dark quiet, allow time to take in, process and react to things that passed by me quickly, important things fly by. In the instant it takes to read a text message, to see a Facebook post, to read a line in a newspaper our worlds can change. But the next instant the millions of distractions can diminish the reality of living in a new and different world.

I've learned something important about working with people with disabilities. I've learned about contribution, about what it takes to provide support, about what happens which enables the whole system to do what it does. When I came to work for Vita, it had been a long time since I worked within an agency. Once there, I came to know, inside out, the work behind the work in front. I noticed that those of us who had, as part of our jobs, the incredible honour of being in the role of supporting people with disabilities received, to greater and lesser degrees, acknowledgement for what that work meant. I have said, and believe, that we provide support but also that we are always working to emancipate a people who have been captive to live freely. I believe that direct support staff are the key to making that a success. I celebrate, and am thankful, for the work that's been done, that needs doing and that will require commitment and focus and determination to ensure that what's been done, stays done.

Chris EdenBut I've learned something else. That there are those, equally committed and equally passionate that seldom get any recognition at all. They are the people who work in the finance office, in human resources, in office support. These folks may never really be recognized for the work they do and their contribution to the community living movement may never be fully, or even slightly, acknowledged. I thought of this on Thursday when I received a quick email telling me that a lovely man, Chris Eden, had passed away. The news hit Joe and I pretty hard. This is a guy who we truly liked and who we truly respected and who we truly enjoyed working with and having contact with. Chris was, for a very long time part of the support team that brought Joe and I to the United Kingdom to do training and consulting. He was the finance guy.

There were several times we had to call Chris, or that we'd call the office to get information and Chris would answer the phone. He always, ALWAYS, brought calm to a situation and ensured that things got worked out. He had a way of making you feel that you mattered, that your concerns mattered  and that everything would be fine. We face a personal emergency once when we needed to do some complicated things between a bank here and a bank in Canada. Chris helped us deal with that, giving advice and support, that made the emergency feel like, well, less like an emergency.

But more than that, it would be a massive oversight to see Chris' impact as simply from the point of view of those of us with whom he worked and those of us to whom he provided personal support. Chris' vision was much broader than that. He understood the very mission of Paradigm, the agency for whom he worked. He understood that his work, his support, through those of us who were consultants and trainers, touched the lives of people with disabilities. It mattered to him. It mattered that the vision, and the mission and the purpose of our work, was also his work.

There are those, maybe in the tens of thousands, whose lives were touched by Chris' work without ever knowing his name. He sat in his office doing what he did, doing it well, knowing that his work was important to the life of the agency and therefore the lives of those who received support or encouragement from the work done.

I know he knew this, because we talked about it once. On a long evening drive from Birmingham to Surrey when he answered instead of the answering machine. It wasn't long, it wasn't complicated, but it was clear, the work mattered and he was part of what made it possible.

It's Thanksgiving Sunday here in Canada, a perfect day to feel grateful that I ever got to meet Chris, ever got to hear how his accent somehow put an 'i' in Dave, ever got to know this kind, and generous and funny man. I am also reminded to feel gratitude for all those who, like Chris, work behind the scenes in making community happen, in making community change, in making lives better.

Though our contact, for the longest time, had only been over Facebook, time and distance hasn't even slightly affected our deepest affection for Chris and our deepest thankfulness for the support he gave us. We send our sympathies, our deepest sympathies, to Chris' family and friends. He will be missed, I know this because he already is ...

Farewell, Chris and thank you for the lives you touched, all of them, through all of us who worked for Paradigm.