Syphoning Hope

“When I was young my ambition was to be one of the people who made a difference in this world.  My hope is to leave the world a little better for having been there” – Jim Henson

I think most people are born with a certain amount of hope. I believe I was born with about a clay jug full of hope and sipped a lot of it in my 20’s, 30’s and 40’s.  I took the occasional swig of hope from the wine skin as I marched in anti-Vietnam protests, I took deeper draughts of it as I fought for equal rights and a level playing field for marginalized individuals. As a person with a disability I drank flagons of it throughout my life relying on it to create a more fair and just society.

Lately though I have been hearing a lot from my network of access advocated and those involved in disability activism.  Hope seems to be waning and that isn’t a good sign.  Effective advocacy is based on the presence of “hope”.  We all live with the hope that those making the decisions that affect our day to day life will do it based on integrity and fairness.  Unfortunately this Kavanaugh debacle south of the border has taken the winds of hope out of a lot of activists sails.

Kavanaugh’s track record on Obama Care is not great and he is now in the position of striking down the section that protects every American with a preexisting condition.   In other words if you have a medical condition related to your diabetes, you have a preexisting condition.  If you are a polio survivor now experiencing post polio syndrome, you have a preexisting condition.  If you have secondary issues to a cardiac issue you have a preexisting conditions.  Getting the gist here, changing this one stipulation could affect millions of Americans living with a disability.  Hope can be hard to hold on to when it appears the whole system is rigged against you. Continue reading

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Thanksgiving 59 Years Later

“The worst part of holding the memories is not the pain.  It’s the loneliness of it.  Memories need to be shared” – Lois Lowry, The Giver

CONFESSIONS – It is challenging to distinguish between a confession and whining however after two weeks of fighting for some hope it is time to lay out a confession.  There couldn’t be a better time than Thanksgiving.  The Thanksgiving’s over the years hold a lot of memories for me but also represent “hope”.

This whole Kavanaugh confirmation issue south of the border was quickly draining my chalice of hope and in light of the outcome I’m going to have to find a way to refill my cup.  It wasn’t so much as the accusations brought forward by Doctor Blasey Ford’s (and those shouldn’t be trivialized) but more the contempt and partisan behaviour he showed in the Senate hearings.

Personally I am getting tired of this type of mentality making it into positions of power where they can, on the whim of a personal belief, have life-long effects on other people.  I have spend my life as an activist and advocate fighting for rights and, in particular, disability rights.  Now that Kavanaugh holds the balance of power in the Supreme Court every disabled person in America is under threat.  He has already ruled on a court case against the current health care act which threatens anyone with a “pre-existing” condition.  I fear for my disabled friends in America but also see too many of these same practices seeping into Canada.  I spend the last four months in a battle with Alberta Health Care and just received my letter on Friday telling me they have reversed a decision in my favour which would have gone uncorrected if I wasn’t like a dog with a bone on these issues.

I am quite use to this two steps forward one step back when it comes to individual rights but I am personally pretty fed up with it.  I have spend a lifetime challenging policy administrators on decisions they have hoisted on me despite right or wrong.  I get tired of challenging but life goes on and if you don’t challenge you lose ground quickly. Continue reading

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Calgary 2026, Redefining Legacy

“Legacy is not leaving something for people, it’s leaving something IN people” –
Peter Strople

Calgarians will go to the polls November 13, 2018 for, what appears to be, a straight forward plebiscite on whether or not to pursue the bid for the 2026 Olympics.  True to form this has become a very polarizing issue with most polls (depending on whose you are reading) keeping things close to 50-50.  My problem with this is the lack of detail and the various ways facts are being presented.  I was a volunteer for the 1988 Olympic’s and they were (and continue to be) an enviable benchmark for every winter Olympics since.  However they were just as plagued with naysayers during the bidding process as these new ones are so lets move past that.

I find the lack of information on the “Return on Investment” (ROI) on the 1988 concrete legacy structures a little disturbing.  I know the Olympic Oval has been used many times for national and world competitions as well as a training venue for other national teams.  That’s almost thirty years of returns.  I know the bobsled/luge course is used winter and summer for a wide range of activities.  That has to be worth something.  I know the Olympic Plaza has been used for much more than “medal presentations” since 1988 so that has to be worth something.  However I am no accountant so that kind of ROI assessment should be done by people with bigger calculators and more in-depth spreadsheets than I have access to.

However an ROI on the legacy issue is a whole different matter.  Legacy is not only a concrete concept measured by structures but also an abstract concept measured by thought and memories.  An example of the abstract legacy of Olympic Plaza is held in every kids heart who has skated on the outdoor ice pond there, held in the memories of every parent who has taken their children there over the years and held in the realization of everyone who has attended an outdoor event there.  That legacy cannot be measured on the Olympic spreadsheet but can be measured in the joy of the Calgarians making use of it.

Since returning to Calgary I have listened or read the pro and cons of both sides.  The one area that seems to be missing is the abstraction of the living legacy created by the venues.  The grade ten class of today doesn’t remember the bobsled racing of 1988 but do recall the thrill of the class outing where they rook a ride down the chute.  That kind of legacy, again, cannot be measured on a spreadsheet but will provide a lifetime of value. Continue reading

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It’s the Not the Attention We Receive That Counts, it’s the Attention We Pay

“When you pay attention to boredom it gets unbelievably interesting” –
Jon Kabat-Zinn

I became a fan and follower of Jon Kabat-Zinn early in my career as a mental health therapist.  His teachings not only contributed to my job performance but blended well into my every day life.  Living with a disability while maximizing ones independence requires a “Mindfulness Based” approach.  I developed the habit at a very young age to scan and memorize every venue, room or situation I entered.  Walking on crutches made area awareness a necessity.  It has become like a muscle memory process for me and I honestly take if for granted.

Like so many things we often assume that other people use the same processes without realizing it is not as automatic to them.  I have found myself on too many occasions in a situation where a friend or acquaintance may have suggested meeting somewhere for some purpose (coffee, concert, theatre, etc) just to discover I couldn’t get in due to lack of access.  They had just never really noticed that “one” stair or the raised venue floor or, maybe, the bar type tables leaving me at eye level of the discussion.  Those are the little things I watch for but concepts that those not living the situation can so easily overlook.  They mean well, they just don’t understand the full ramifications of accessibility.

That Mindfulness Based Awareness is an ingrained part of my belief system and most of the time I’m not even aware I am using it.  Early in my career as a therapist, I worked with Aaron Beck’s cognitive therapy.  That’s a concept based entirely on belief systems.  I do a regular inventory of my beliefs (times change) and the Kabat-Zinn thesis was a natural fit for my own belief system.  To be an effective activist you have to have some understanding the belief systems around you and I do pay attention to that.  I wouldn’t walk into a biker bar out in the middle of the desert and order a martini.  That’s a definite conflict of belief systems.

My generation was very fortunate to have lived in the shadows of the pioneers of disability activism.  They paved the way for access and disability equality that we enjoy today.  I was lucky to have been exposed and taught by some of the great mentors of the independent living movement.  Now I realize that so many of those great ones are living in the shade of the pleasantries written on their headstones.  The influential guru’s of my youth have slowly been leaving us.  I have attended too many funerals and presented too many eulogies to really consider myself a “junior” player now.

It is a difficult to accept, in part, because of the nature of the baby-boomer habit of denying aging but also the acceptance of the increased responsibility that comes with the mantle of experience.  It is easy to accept advances made as being “fixed” while watching from the sidelines the erosion of those accomplishments pushed through by our pioneers.  Access and rights are never “fixed”.  They can always be undone or eroded when people fail to pay attention.  With that said it is difficult to pay attention when you don’t know what you are looking for.

Much of the current generation of activists have little insight into their past.  They are working, like my generation was, on hopefully creating a better future.  It now falls on my generation to provide that same shadow I benefitted from with my pioneers.  We are now the “official” historians and advisors for the next generation.  We know what wasn’t there when we started, the current generation is working from a different reference point. Continue reading

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Remembering Wilson

“A lot of you cared, just not enough” – Jay Asher, 13 Reasons Why

CONFESSIONS – It is that time of year again when the idyllic days of summer begin to fade and we re-immerse ourselves into  the early trappings of fall.  This particular year we went from a record breaking heat wave in Calgary to a sudden temperature dip resulting in an unexpected snow fall.  Not nearly as bad as the tragedy of the flooding and hurricanes on the east coast but I can only deal with my own region.  None the less my thoughts and hopes go out for the Carolina’s and other affected areas.

Kids are returning to school and for those children with special needs it is a particularly stressful time of the year, for both parents and child.  It is also a time where I relive a tragedy from seven years ago, a tragedy that should have never happened.  Mitchell Wilson was eleven years old on the last day of his life and I cannot generate the words to express my dismay over the situation.  Had everything gone to plan he would have graduated this past spring and making plans for the next part of his life.  He never had that opportunity due to the ineptitude of a crumbling system.

He was let down with false platitudes.  I didn’t personally know Mitchell but for some reason that one really hit me and I am overcome with the need to remind people of the worthlessness of this death.  Here was an eleven year old kid who should have been having eleven year old thoughts of the life ahead of him.  Instead he was quietly planning his own demise.  You don’t tight s plastic bag around your head at bedtime never to wake up again without some serious planning and thought.

He had been bullied for months at school and his bullies had been “reprimanded”.  A of of good that did Mitchell.  He had been bullied just a few days before his planned return to school over his dads iPhone.  The same phone he carried should he fall while on his walker and need assistance.  It was the known bullies greed over Mitchell’s lifeline that, I believe, finally convinced him that “things don’t get better”.  Continue reading

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Democracy is Chess, Not Checkers

“People shouldn’t be afraid of their governments.  Governments should be afraid of their people” – Alan Moore, V for Vendetta

I am blown away by the apparent pettiness of that sack of air the people of Ontario elected to guide their province.  I haven’t lived in Toronto for over 40 years and at the time I loved it.  I loved the downtown life style of Toronto as much as I loved the week long canoe camping trips in Algonquin Park.  I loved the culture of the Toronto theatre district as much as I loved spending weekends at my roommates parents corn/dairy farm up by Peterborough.  All in all it was a good time in Ontario.

Picture of me in 1976 preparing to move from Toronto back to Calgary

Toronto 1976

I remember the sighs of relief of so many Ontario citizens when Bill Davis and the Ontario Progressive Conservative won their tenth consecutive government but tempered it with a “minority”.  People were tired but frightened by the thought of change.  It was a different, and many say much simpler, time.  Change was slow but Ontario was booming.

This was the early days of learning to vote for the lesser of the evils rather than the best for the province.  The Charter was still six years away and Toronto proper was still Toronto.  It wasn’t an amalgamated super city yet.  For me, it was a time of fun and life was just beginning to take on a more serious turn.  I was living my life accordingly and the absences or presence of rights meant nothing to me.  It wasn’t fully in my sphere of interest at the time but the shadows were creeping into the recesses of my mind.

I left Toronto in 1976 to return to Vancouver and never got past Calgary.  I landed my first job of any real consequence with the Canadian Mental Health Association and entered the world of advocacy.  I had, in my past, participated in some anti-Vietnam war protest marches, took some stands for early gay rights, been quietly involved in promoting a more comprehensive building code to acknowledge accessibility but had always seen those as activities that were a vehicle to meet women (yes I was pretty shallow when I was younger).  Regardless I matured. Continue reading

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Advocacy 101 – A Basic Introduction

“Get up, stand up, stand up for your rights.  Get up, stand up, don’t give up the fight” – Bob Marley

I wrote a brief “rant” a couple of weeks ago regarding social justice.  I had a lot of feedback and a common theme was the request for steps on “how” to be a social justice warrior.  I have made a lot of attempts to capture the process on paper since then but was never satisfied with what I was writing.  It looked more like a plate of spaghetti than a coherent logical description.  I began to realize I couldn’t do it in one sitting.

It was like expecting a kindergarten student to have a grade 12 learning level.  I have spend close to 40 years fighting for social justice, learning, developing, adjusting, adapting and applying.  How do you take 40 years of experience and condense it down to an 800 to 1000 words article?  The reality is you don’t.  I cannot justifiably provide a comprehensive explanation to a process I have been learning for over 40 years.  However, due to the reasons listed below, I have to do something.  It’s not in my nature to turn my back on those who need some help.

In the past week I have had five families contact me looking for an advocate.  Families whose children have just entered the world of inclusion by starting schools.  Families that have spend the last five years being overwhelmed by the complexities of the world of special needs (hate that term but will use it for now).  Families who by their own admission hadn’t given any thought to terms like “social justice” prior to the crisis they now find themselves in through no fault of their own.  Families who admittedly held to the belief that there was a social safety net there to assist families in need.  Families who, in a minute of childbirth or a five minute medical emergency, entered a world totally alien to them.  Families who prior to the situation they now find themselves in had never realized just how lacking or confusing our system is.  So for those families I believe that a I can provide a simplified overview of the tools and language they are going to need to know.

There are two mains ways to pursue social justice and that is as an advocate or an activist.  These two terms have different meanings but shared values.  An advocate tends to focus on one issue, an activist challenges concepts.  That’s a very simplified overview but I don’t want to confuse this article by being exceptionally over-detailed.

However I do need to clarify the difference between a Charter Challenge (federal) and a human rights complaint (provincial).  A Charter challenge is a federal issue and usually focuses on protections laid out in the Canadian Charter of Rights and Freedoms.  That is a federal level process but may, as the need requires, be the final step following a provincial human rights complaint.  For the sake of this article I am going to focus on the provincial human rights complaint. Continue reading

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