Posts Tagged ‘disability’

tideAs the ups and downs of life are measured, I begin to think of them less as ups and downs and more like ocean waves, ins and outs; perhaps it is because I was lucky to emigrate from Alberta to the west coast at a formative age. Sometimes when the tide is way out, instead of appreciating the stretches of sand, the driftwood, the barnacles, the hermit crabs and such, I focus on the wrong things. But not so often… I know it’s a choice. Somehow, somewhere within, through luck, philosophy, good reading or good breeding, I can and do focus on the positive. A woman I recently met, having experienced just too much stress, remarked on my attitude and all I could do was give her a hug; was that an instinctual attempt to transfer some of this positive energy?

My mother thinks my sister is the lucky one. She has succeeded financially, has an abundance of health and healthy offspring, winters in Arizona and will settle next week in BC on waterfront property in Victoria. But I am lucky, I experience true joy almost daily. Last night I was moved to tears by the sweet, pure delightful voice of AMYlubikAmy Anne Lubik. It is hard to describe that feeling. Had I died that moment, it would have been just fine. In that warm, soft voice was definitely angels’ song. Not a lot of music nor a lot of art has this profound an effect on me, yet how lucky I am to actually know someone who breaks frequently into song AND can do this with her voice. I told Amy about a piece of art by Csaba Markus that had the same effect on me. My inner dog began guarding the piece; I didn’t like it when people looked at it in the wrong manner. I was offended when people, clearly wealthy enough to buy it, would remark that it would match their sofa. Were they interfering with this inner joy that I was lucky enough to feel…

And last night, after thinking Amy’s voice would sustain me for so long, dear friend and champion of change, Rick Glumac, played his guitar and sang a song he had written just for our Greendrinks, evoking another type of pure pleasure, laughter. We all laughed at his straight-faced genius talent. How lucky to not just be there, but to be able to call Rick a friend; to know him, to encourage him, to stand with him, to be wowed by him – constantly. And while we celebrated the talents of all our GREENDRINKERS, we saw comments from the ever-talented Graham Girard, from across the country, whose brain I had the luck to watch at work as we founded and refined the original Tri-City Green Council.

Lucky indeed, not to have lost so many friends and dear ones, but to have had the privilege to know them, to write about them and for them…who knew the bit of writing talent identified in my youth would lead to a large collection of eulogies…will I publish a book of them…one day? Each person known and lost is etched in my being. I am lucky because I know I have more than inhaled some of their molecules. I AM some of their shared experiences…some of that ocean tide.

I have the good luck of being someone who can help others. I am grateful for that. In an email I received this morning, friend Simona writes, “Thanks Elaine. You are exactly what I need when I’m hurt and also when I’m happy.” Does life get better than this?

And last night, the all too amazing young Sara Norman brought her mother, poet Renee Norman to Greendrinks, and she wowed us all with her poetry about motherhood. And while she watched and listened to others at the microphone, she fondly twirled bits of Sara’s hair.

Last night was very special for me, euphoric in simplicity. Amy was so right, we need to take some time to just enjoy, especially those of us passionately trying to make the world a better place. I was so lucky to be there.

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Yesterday I wheeled in the Port Moody Centennial parade from City Hall to Rocky Point Park (and back again). Our group, Mossom Creek Hatchery together with Noons Creek Hatchery joined displayed our our colourful fish to draw attention to the salmon and the streams. It would have been impossible for me to walk as I am too slow on my feet. I would not have been able to keep up the pace so I decided to join in and use my manual wheelchair. I am still, despite my sporadic use of it, in my opinion, fairly fast in my chair. Not sure of the hills and obstacles, I asked my amazing friend, Ruth Foster, to walk with me in case I should need a helping hand.

Asked if Rick Hansen is my inspiration to use my manual chair so independently, I have to answer honestly, “No!” Of course Rick is in inspirational guy. Personally I am inspired by Paul Gauthier, the man who kept me from being sent to a nursing home for the crime of being disabled; by Paul Caune, who fights with every mechanical breath to make sure that no one with a disability will ever be in that position; and Adam Frost and young Jessica Kruger, who managed to obtain me a sports wheelchair in weeks when a year of grant applications at G.F. Strong failed.

My hope is to continue to change the world in any way I can by helping others, through environmental stewardship, by advocating for people with disabilities, by working through government – one meme at a time. I am grateful for the opportunity.

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I am truly lucky. I have a job, again. My new position allows me to help people who are experiencing frustration with bureaucracy. Because I have been a person who has experienced so much of this type of difficulty myself, when I say, “I understand,” the words, I trust, never sound hollow. Sometimes I, too, have been very desperate – trying to find educational help for a relative; navigating the mental health system with a friend at his lowest; a life and death situation medically; a financial crunch as a young widow with two small children to support; victimized by a supposed “support” system for people with disabilities; suffered abuse as a disabled person in a medical institution…

Many times people have nowhere to turn or have run out of people to turn to because their emotions run high. How fortunate I am to have some training (thank you Selma Wasserman) and skills to assist people in a calm, soothing, rational manner. When people feel heard, they feel trust. With trust they can often move forward through difficulties with more strength. Empathetic responses can be learned. With practice they come naturally. Because the true passion for social justice comes both from my upbringing and my DNA, these learned responses are most fitting with my own character when crisis is in the voice of another human being.

I also find myself as advisor to friends and family. It is these same calm yet rational listening skills that are so helpful. I set firm limits on my time, but do so with kindness and care. No one, I hope, ever feels shut out by the limits. On the contrary, it is my hope that the limits keep me from being overburdened, yet also empower the individual to find some applicable options and take actions from our interactions.

BackgroundPearls3_1I write this after an interaction with a colleague for whom I have great admiration and respect. He is dealing with a person who has a particularly difficult personality. We had several conversations yesterday – some at work. I had to limit the time we spoke and yet my friend was very anxious to debrief with me and find some solutions to this terrible problem. I also found an email when I arrived home. Eliminating names, this is the gist of the content – I wanted to capture the pearls of my words, just in case they come in handy again!

“Don’t worry about the difficult person. He is not worth the stress. Stress is bad for your health. You need to stay healthy for your family.

This difficult person is poison to you. Don’t drink in his words. Poison is safe in a bottle – to be observed but never ingested.

My friend, there is always something good from every experience. Think of this is an opportunity. Every problem is just an opportunity in disguise. It is finding the opportunity that is sometimes the puzzle.

Enjoy life’s beauty.  Life is short.”

This morning he found his solution. Embedded in his email to me were some of these pearls.

Helping others is gratifying. We both gained happiness from our interaction.

Being completely open-minded is something I truly strive for, yet I struggle to keep an open mind towards the extreme authoritarian governments in power in my country and my province. In Nick Fillmore’s latest BLOG post,

Is Stephen Harper displaying
fascist-like tendencies?

he makes the case that although he doesn’t accuse Mr. Harper of being a fascist, one can easily identify elements of fascism from Harper’s actions when applying Dr. Lawrence Britt’s fourteen defining characteristics of fascism. It is compelling reading. I worry about the changes happening in a country once known for its collective social conscience.

Our province could be similarly analyzed. In a province where a campaign has been launched AGAINST opposition leader, Adrian Dix, before an election has been called; in a province where teachers enter an eleventh year with bargaining rights suppressed;  in a province where cuts to arts funding were increased (AGAIN!) and the Bible is raised in discussion by the Minister of Culture and the Arts, I begin to see fascist-like tendencies very close to home.

One can despair, shut them out or take action. Of course taking action is the obvious solution, yet that, too, can be difficult. What to do? What obstacles? What politics within the politics?

Which brings me to social conscience…

When you find someone with true social conscience with whom you can work, volunteer, collaborate…it all becomes so much easier. I found Dave McPherson. He is smart, funny, caring, dedicated, a great navigator but above all he has a true social conscience. And, he’s handling Joe Trasolini’s by-election campaign. Officially he’s the Campaign Manager, but that title seems minimal for what he does. Somehow I knew this was where I could make a difference, stop the creeping fascism, restore some balance and join a team of like-minded people. I am very impressed with the candidate and the myriad of volunteers who have arrived to make a difference.

Joe Trasolini has a public persona that one begins to identify through discussion, through the press, through living in a neighbouring municipality, but every day I like and respect Joe more and more. His values are the right values. He cares about people. He cares about getting things done.  This hard-working man has earned the respect of many, many people in the City of Port Moody. He makes himself available to anyone in the public for meetings through his open-door policy carried over from his 12 years as Mayor. He IS open-minded. He has the mindset of a person who comes to politics to make the world a better place for the many, not for the few. The environment is always in the forefront of his thinking. Scent-free office – OF COURSE. In fact, time to stop BLOGGING and get down to the office. Volunteers are welcome. The office including the phone rooms are wheelchair accessible. Come and join me. We can make a difference.

I very much enjoyed the experience of presenting. I realize, after the fact, just how much my left brain dominates.  Although I have a good understanding of how the artistic, right-brained individuals function, I am less tolerant of their function than I would like to be when it comes to what I perceive to be  “professional” events and functions. I am not sure if that is something I learned or if it is innate.

I wanted to (and was) on time for the meeting for the presenters. Part of me knew it would be foolish to worry about being on time for an “artsy event”  but that’s who I am (remember the left-brain dominance). The meeting did not occur and the person who called it did not arrive until forty-five minutes later. In fact the level of organization was just not the tight, structured,  Japanese, haiku-like form that is PechaKucha. So as I waited and watched for the show to begin, safely inhaling oxygen at 4 litres per minute (one of the presenters wore a LOT of fragrance), I experienced some cognitive dissonance. I so firmly believe that the production should be organized, should start on time, should be coordinated  professionally – after all people are paying to see the show. On the other hand the audience is happy, largely unaware that the media is not present, the photographer and film crew are absent, the meeting did not take place – they are more than happy.

Dissonance…tells more about me than the situation… “dissonance is reduced by justifying, blaming, and denying”.  I realize I have done all three. So while other people turn inward with nervousness, do I look outward…settling upon justification for the situation by noting that all went well despite the disorganization which I perceived?  The arts community pitched in and did what was needed. The audience was inspired. The focus was on the positive. The networking was amazing….and the feedback I received was great.

It seems that people were, on the whole,  inspired and motivated.

And when I reread “What makes a good PechaKucha” (it means chitchat in Japanese…) from the originator’s website, I know this whole thought process is something I need to continually work through…

“Good PechaKucha presentation are the ones that uncover the unexpected, unexpected talent, unexpected ideas. Some PechaKuchas tell great stories about a project or a trip. Some are incredibly personal, some are incredibly funny, but all are very different making each PechaKucha Night like ‘a box of chocolates’.”

It was a box of chocolates – there was something for everyone at PKN Coquitlam.

I returned from a weekend at the SEP (Salmonid Enhancement Conference) in Campbell River delighted to have taken a ferry and visited Vancouver Island for the first time this century. My friend, Ruth, who reminded me it was the first time this millenium, is constantly running into former students who shout after her, “Mrs. Foster, Mrs. Foster, remember me!!!”

I was delighted to find the following response to an older BLOG POST when I arrived home; more than heartwarming, it verified the theme of a recent post about advocacy. By choosing to become a teacher, I chose to be an advocate.When I entered teaching, I had no idea it would be a good fit or my natural calling, but I am lucky these things were true. To have a positive impact on anyone’s life is really all one can hope for…

Mikki, in my mind’s eye, you are still that young girl. Yet your writing is clearly that of an articulate, strong, young woman. The impact of your few words lived on for days…still does. I have met many former students, but none that has shared this experience of being part of the “disabled community”. My mother (who can’t seem to grasp that I am 57 years old) constantly asks when I am going to write and publish a book – she so believes my writing skills to be a marketable talent. Somehow, finally, I understand how she feels. Your ability to write well, to express your thoughts with a few powerful words is so apparent. Impactful… Delightful… I think that might be a bit of pride…like what my mother tries to express to me.

Mikki (Cowling) Chartier said May 22, 2011

Elaine Willis,

You were my 3rd and 4th grade teacher back in the 1980s at Grosvenor Road Elementary School. After all these years and wondering what’s happening today, I found your blog. You are a gifted teacher, who showed far more compassion to a very shy and anxious disabled child than our soulless system has demonstrated to you. I was stunned to find out you developed ataxia and chemical sensitivities, but from your blog and The Hindsight Years, it’s clear you haven’t let it stop you.

It was a privilege to have had such a wonderful human being as a teacher. You valued each and every student as individuals, genuinely cared about us and what we were learning. Nearly thirty years on, I still remember how you read stories to the class and didn’t underestimate our ability to understand the themes. How you played “Clouds”–Both Sides Now–by Anne Murray. I remember learning about technology in the computer lab with the Apple ][ and when you took the class on a field trip where we learned about computer programming at a real university! You made the experience magical to a nine year old child who never forgot your kindness, passion for teaching, and your patience.

I just wanted to say thank you.

Vancouver marked International Day for Persons with Disabilities with a ceremony celebrating their contributions to society. I marked it remembering…

Actually, the remembering was triggered by meeting Paul Caune in person last week on a very, very cold day. Paul is a man with focus. Focus is definitely what is needed to achieve goals. But Paul had something else, besides a wheelchair, which reminded me very much of my friend, Dr. Mark Dickson, who passed on, too suddenly, April 7, 2007.

Paul exuded a rare intelligence, combined with patience, and a genuine interest in others. I need to find a new vocabulary to describe these qualities which I saw in both Paul and Mark. I know that I would have taken great pleasure in introducing Mark and Paul…do I only pretend to live in the now? Wistfully I look backwards, because not only would Paul have enjoyed our very silly, intellectual games from Mark’s “Book of Difficult Words”, but the desperately needed social change for which Paul is advocating would not just resonate with Mark, it would have helped him; because even Dr. Dickson (BAMAPHD) was disempowered greatly by a system, that in the end reduced him to what was his body and NOT his mind.

The main reason for today’s post – to honour memories by taking action. Those people who have touched us in any way, small or large, become part of us, literally as we breathe in their air, and figuratively as we share their thoughts…

Mark’s eulogy, as spoken at his funeral… (thanks FIONA for still having it on your computer)

Mark Dickson…

Friend…philosopher…friend…..person with Friedreich’s Ataxia…friend….chess player….friend….gentleman…friend….DOCTOR….friend….mentor…
friend….son…friend… brother….friend…uncle….friend….friend….friend…friend…..

And so ran the theme of my thoughts about Mark…always a good friend…

Mark was very tolerant and modeled tolerance for me. When I spent time with him, I knew more what kind of a person I wanted to be,

This quote from Joseph Addison reminds me much of Mark’s demeanor:

It is only imperfection
That complains of what is imperfect.
The more perfect we are
The more gentle and quiet we become
Towards the defects of others.

I was proud of our friendship and as I thought about it I realize I had introduced many of MY FRIENDS and relatives to MARK.. the special ones..the ones who deserved to know him..because Mark was special and dear and kind and warm and thoughtful…and yes as our mutual friend Wendy said…very different in person than in his writing. Mark was NOT perfect but to me he was a perfect friend and I wish I had a chance to be a more perfect friend to him for a longer period of time as he was snatched from life before I had a chance to finish all the conversations and dreams I had for our friendship.

I was always fascinated by Mark’s ability with chess. Not so much that he could beat me as I am a mediocre chess player but I remember answering the phone at his house one day and someone saying into the phone Queen’s Knight to King’s Bishop Three or some such thing and I repeated the information to Mark who was engaged in earnest conversation with someone else at a social gathering…we held them regularly at Mark’s house in the good old days… He calmly replied with some other chess move which I repeated into the phone and he carried on with his conversation. I asked him later about it and he said he carried on several chess games with people…..his pieces only in his head. The others would phone in their moves every few DAYS! WHAT A BRAIN! WHAT A MIND! What a privilege to have had MARK DICKSON as a friend.

I have so many stories about MARK, but Mark would always choose to be fair and let everyone have a chance to speak and not let any one person be the only one to speak on a subject, so as my role model would have it, I will let another speak through my eulogy.

So the next memory is from Wendy O’Rourke.. She was living near Boston at the time and wasn’t sure she wanted to meet Mark but I dragged her to his house for one of these famous social gatherings. Wendy writes “On a visit to Elaine’s, she announced I was going to meet Mark, face to face, and I would see how wrong I was about him. I resented taking any of my time to visit a man I perceived as severely stuck on himself. I was SO wrong. Face to face, Mark was a warm and sensitive, sweet man, who loved a good discussion, especially one with opposing views. I learned his pride in his education was based on the inspiration his mother had provided. He told us, with his voice breaking, and tears in his eyes, that she had told him his body might fail him, but his education could never be taken away from him. He apologized for getting so emotional. As he spoke of his mother, her love for him and his for her, Elaine and I exchanged glances and knew how much it would mean, to us, for even one of our children to say anything about us, along the lines of what he had said about his mother. We would know we had done our job well!”

In closing, I would like to echo Wendy’s thoughts that Mark was a sensitive man. He was also a kind and fair human being. I remember well that soon after Rawnie Dunn announced that she could no longer attend BC ATAXIA SOCIETY meetings that if Rawnie couldn’t get to the BCAS then the BCAS would come to RAWNIE and we began having meetings at RAWNIE’S house in BURNABY. What a lovely principle considering how difficult it was for Mark to actually get to Rawnie’s place himself….

And the ultimate honour for me…Rawnie emailed after receiving news of Mark’s passing to tell me that Mark considered me to be one of his very dearest friends.

He is a perfect friend that will be dearly missed and fondly remembered….

So, for Mark, for myself, for the future and for what is right, I will work with Paul Caune to make Civil Rights Now!, his vision of political action. I will assist in the moving of disability rights from theory into practice, sooner and not later. Dr. Mark Dickson, BA, MA, PhD is with me still.

To learn more about CIVIL RIGHTS NOW!, read a speech delivered by Paul Caune on December 10th – click here.