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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No Bulb in the Socket

“Life is to short to drag a trunk of suppressed negative feelings around, dump that crap and travel life’s road with an overnight bag.  The trip is much more enjoyable when not weight down with old baggage.” – Terry Wiens (2018)

CONFESSION – ALERT, if course language and angry outbursts affect your sensitivities you should stop reading now.

"It is easier to fight for one's principles than to live up to them" - Alfred Adler

#SpeakOut

Every now and then I just feel the need to lose it.  I get tired of the “political correct” approach, I get tired of worrying over others sensitivity when it is very apparent they don’t give a damn about mine. I get tired of swallowing my feelings to the point where I’m a festering volcano of emotional sludge ready to blow just to avoid hurting someones ego.  This is one of the moments.

I thought the light had come on last night until I woke up this morning and realized there is no longer a bulb in the socket.  The “flickering” of the light was simply the shorting of the power running through the empty socket.  Society has unscrewed the light bulb.  I am fucking tired of this.  I am not just tired of how society can overlook so many aspects of inclusion I am also fed up with many in the disabled community who want everybody else to do all of their advocating.

I’m sorry but just because you broke your back doesn’t mean you don’t have a spine.  Start standing up for yourself and quit waiting for the next thing to screw up before you take a stand.  Grow a pair and start to #SpeakOut before you lose something else, rights are not guaranteed if you don’t fight for them.  You can choose to be the doormat of societies compassion or you can choose to be an agent of change.  If you want a system that is fair and protective then be an agent of change.

I have been an activist for 50+ years.  Over the last ten years I have been attending the funerals of my mentors and role models.  That generation that laid the foundations of so many of the rights I enjoy today.  Sadly they are gone and it is now my generation that is fighting to protect and strengthen the work they did.

Fifty fucking years of fighting for access, services and recognition.  Fifty fucking years of fighting for the right to employment, the right to live where I want, the right to self-determine and, when you add all of these things up, the right to be a contributing member of my community.  And still I get calls from people or organizations asking for help.  I’m an activist, not an enabler.  I’m fucking tired of it, I helped set the table, I’m not going to cut your meat.  The tools are there, make use of them. Continue reading

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The Building Blocks of Youth

“To take children seriously is to value them for who they are right now rather than adults-in-the-making.” ~ Alfie Kohn

We all like to see our kids enjoying themselves.  We all want to protect our kids however there is a big difference between “protecting” and “hiding” them from the realities of the world.  Too many parents have little understanding of the subliminal learning that is continual in that time of our life.  What looks like fun and games forms the foundation of future belief systems.  This is why we cannot underestimate the importance of what we role model to our children while maintaining, at least, a modicum of understanding of what they are being exposed to.  They are our future who will be the accelerants of change.

My childhood, in retrospect, was anything but normal.  To me it was normal (hate that word) but by societal standards it wasn’t.  The foundational pillars of my belief system were developed in an institution.  It was an era when hospitals offered polio kids the best chance to thrive.  The communities of the 50’s and 60’s were not designed for inclusion and access.  There were no programs, policies or regulations that demanded community supports so hospital life was my norm.

Bedrest with leg and back splints with head immobilized to maintain neck strength

Stretching tendons and strengthening neck muscles by maintaining head position (circa 1955)

Hospitals provided polio survivors healthcare, education and an active social life, something not available in the general population of the time.  At four years old I was encased in enough metal bracing to qualify me as a “knight of the realm”.  The technology of the day resulted in that equipment weighing more than I did.

By age sixteen I had spend eights years in a hospital, had over a dozen surgeries, completed ten years of schooling, had been a cub, scout, etc and had a very active peer-based social life.  By sixteen the only equipment I was using was a pair of crutches while having achieved my dream to wear tight blue jeans.  My needs were much simpler back then so the foundations of my belief system were developed based on experiences gained in a hospital.

Growing up in a hospital provides a very different perspective on life.  We were the petrie dishes for advancements in healthcare and technology.  We were excellent test subjects for the modernization of healthcare.  And technology (medical or otherwise), as we now know it today, was the substance of sci-fi books.  TV was a relatively new technology and a limited luxury in the hospital which meant one communal TV with limited access time.  We were experiments and I mean that in a good way.

Our mental stimulus came from books, comics, talk, imagination and each other. With the amount of time you spend in bed (classrooms were often half beds and half wheelchairs) you had a lot of time for reading.  We learnt by talking, questioning and reading.  The last two were very important because, as polio survivors, we had to be adaptable and open to adaptive solutions to potential barriers.  We were learning to be our own advocates without even realizing it.

I understood, early in life, that adaptability and compromise were essential while not even knowing what the words meant.  They were part of my belief foundations minus my self-awareness.  Our access to books was like living in a library, anything we wanted to read was made available to us.  By the time I was ten I was in love with anything focused on philosophy, communication or science fiction.  They often melted and, as Proust would say, “I was seeing with new eyes”.  My perception of the world was very different from that of my siblings.  Growing up as a polio kid at the height of the social change movement of the 50’s and 60’s made for some very impactful life lessons, I just didn’t realize it at the time. Continue reading

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The “Yes, But” Person

“Compromise is not about losing.  It is about deciding the other person has just as much right to be happy with the end result as you do.” – Donna Martini 

I am sitting here engulfed in the fall out of the BC forest fires, thick smoke heavy enough to taste and that’s from five hundred miles away.  In the background I am listening to Danielle Smith on CHQR Talk Radio which has become part of my morning routine.  Now those that know me will have a hard time with that because she and myself are at opposite ends of the political spectrum.

It is difficult to say “opposite end” of the political spectrum considering I profess myself to be a “centrist” which is a segment of the population that is being stretched thin due to the wild swings of the far right and left.  However the centrist, that segment of the electorate most open to compromise, is slowly being eroded out of fear of speaking out.  I think one of the things I appreciate about Danielle is that she at least appears to want to examine issues in more detail which is a good starting point for compromise.  It’s been my experience that the more entrenched a person is in a far right or left belief systems the less likely they are to compromise.

I'm only responsible for what I say, not for what you understand

If you don’t understand, say so!

When you grow up with a disability you deal with a lot of “yes but” people.  The “but” is often an indicator of how entrenched they are in a belief.  An early example of this, in my life, was my desire to get my drivers licence.  I had a lot of “yes but” types of responses.  The “yes but” always comes with a justification like “there’s a handi-bus service to get you around”.  Dependence on a system like that is self defeating to someone who really values their ability to be independent.  My ability to be independent is the foundation of my beliefs, I have a drivers licence and for the record I have a car.

You also learn (or you should) that communication is more than just words.  Good intentions for the disabled are a form of racism hidden behind nice words so you learn everything you can about effective communication.  That involves things like intonation, body language, cultural aspects, current situation and so many other things that come into play.  I learnt early to pay more attention to that aspect of communication rather than just the words.  How somebody interprets what is said is often based on their “cognitive filters”.  And those filters are usually created by their belief bias. Continue reading

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The Road Forward, The Path Behind

“One can talk good and shower down roses, but it’s the receiver who has to walk through the thorns, and all its false expectations” – Anthony Liccione 

I just read an article by a Chris Lenart describing the involvement of fathers in the lives of their disabled child.  I don’t know Chris personally and there is a 20 year difference (basically one generation) between us.  That is important to note because it does make a difference on perception and parental involvement.  I read his article through the lens of my own background.  Initially I was a little pissed off until I put it into a generational perspective.

I wasn’t upset with the focus of the article but my hackles do go up when I perceive more emphasis on “dis” than “ability”.  I didn’t grow up as a “disabled child” but I did grow up as a child with a disability.  My polio created some physical challenges but my disability was created by those around me, society.  I live by the philosophy that “my disability doesn’t define me, I define my disability”.  I have a life time of anecdotal evidence showing societies attitude defines disability.

My disability makes up about 20% of who I am but impacts a 100% of a persons initial exposure to me.  The 80% defined by my ability means I have to work a little harder to get that first impression a workable relationship.  How I present myself will be based on how well I am able to demonstrate my abilities to move past the “dis”.

I grew up in a time where institutional living was the norm.  Polio kids were hospitalize (some call it institutional) for numerous reasons.  Schools nor communities were accessible.  Medicine was no where near where it is today and seldom was the term “healthcare” even used.  There were few, if any, family support programs in the early baby-boomer days with surgical procedures being the primary treatment of the time.  This made institutional living easier for everyone.  Hospitals became households and your family were the other polio kids.  Growing up in that environment the emphasis was always on ability and we were encouraged to be self-sufficient individuals.

In today’s society there is a stigma attached to the “institutional” approach (which I can understand) however it allowed me a lot of opportunity in a generation where I would have otherwise missed out on so much.  Things like basic education, treatment or inclusive involvement in my community.  We didn’t all have “The Secret Garden” resources so the hospital became a community.

For the majority of my childhood my parents were nurses and the hospital was my home.  This was a generation when parents had little involvement in the medical aspects of their child’s life.  Parents had limited visitation opportunities, Wednesday after school for one hour (3:30 to 4:30pm) and again on Sunday for an 1.5 hours, siblings even less.  Between school, surgeries, various therapies (physio, OT, etc), activities like Scouts and Guides, arts and crafts, Friday movie nights, Saturday night teen dances, etc the hospital offered all of us the opportunity for community involvement that wasn’t really available in the mainstream community.

That was a normal life to me.  The traditional foundations of the basic developmental milestones and cognitive advancements that happened in any child’s life were established in that environment.  The concept of disability wasn’t there, in our eyes we were all the same.  The focus was on out ability, not a disability.  Continue reading

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The Precipice of Aging

The Precipice

For sixty years they had been wed,
In thirteen seconds they would be dead,
She is frail and oh so ill,
But to live without her he has no will.

Perching on the precipice high,
Holding her close with a smile they will die.

The love they have shared for all of these years,
Keeps them together shedding their tears,
He’s watched her strength drain from the illness inside,
But living without her he cannot abide.

Perching on the precipice high,
In love’s embrace they soon will both die.

He wrapped her warmly in her hand knitted shawl,
Then walked her slowly to the elevator stall,
From the fourth to the twelve the lift it did rise,
Then one flight of stairs to reach their demise.

Perching on the precipice high,
Hand in hand from a fall they will die.

Arm in arm to the edge they do walk,
Holding a gaze that held silent talk,
Just one final kiss that tasted so sweet,
To their death they did plunge on the dark silent street.

Lying all broken from precipice high,
Their love has transcended as their bodies do die.

Terry Wiens – Jan 2005

Summer is flying by faster than the speed I am able to get things done.  Life is like that, at 20 we think there is lots of time then all of a sudden fifty years has flown by and we start to realize how many of our agenda items are still waiting for our attention.  I have too many things left on my agenda that I have continually put off for time management sake.  What that “putting off” has taught me is that using time management as an excuse to avoid dealing with agenda items in the here and now leads to “crisis management” later in life.

As someone who has spend his life believing he was a social justice warrior I come down hard on myself when I see something I “put on the back-burner” having reach a crisis proportion.  Life can be crazy that way, we wait until we reach a crisis point and are forced to confront those issues we “tabled”.  We are now in the midst of that crisis and it has nothing to do with opioid’s.

The crisis I am referring to is the rising homelessness and suicide rates confronting the current generation of seniors.  I could provide an endless list of articles, news stories, reports and studies but I shouldn’t have to.  People just have to step outside their personal silo’s and open their eyes.  It’s all around us.  We shouldn’t have to be reading news headlines like those surrounding the Wettlaufer case or cases like Fran Flann (an 82 year old discharged from a Vancouver hospital to a homeless shelter) for us to recognize the crisis.  This has been going on for years.  We shouldn’t need private studies like the recent BC Seniors Poverty Report Card to understand the aging crisis. Continue reading

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Opening Your Own Door

Friends and Self

Our life has many ups and downs,
We question why we’re here,
But deep inside we know ourselves,
Loss of friends is what we fear.

Is it our expectations?
Or the way that others act,
That makes us really doubt ourselves,
Over how our friends react.

We put our faith in people,
And trust in all our friends,
So when our world does crumble,
We justify the ends.

But friendships can be fragile,
And often not so true,
True friends are more accepting,
Of all the things we do.

We do not need a preacher,
Or friends that leave us high,
The truest friends are those,
That stay when the others fly.

So recognize what’s in you,
You are the only one,
You truly can depend on,
When all is said and done.

Terry Wiens – Feb 2005

I wrote this in a very black period of my life, a time when I was surrounded by negativity and toxic people.  I have since moved on but was reminded after reading an article by a Dr. Perry that focused on toxic relationships.  It captured most of the components that went into the creation of this poem.  This was my experience and a strong example of what can happen when you wrap yourself in a blanket of love made up of toxic materials.

I have over twenty years experience as a mental health therapist both in a hospital environment and community agencies.  My sense of empathy was always my strength.  I even had it tested by participating in an 80’s study measuring empathy and I scored very high.  I attribute my empathy to having spend most of my formidable years in a hospital.

By the time I was sixteen I had spend eight years in a hospital full of polio survivors.  That has an effect on various developmental milestones and one of those was the affect on the anterior insular cortex, that section of the brain that enhances, among other things, empathy.  When you are 8, 9 or 10 years old verbal communication is as limited as the vocabulary you have developed and as a kids there are limitations.

A picture of the brain using different colours to highlight different areas of the brain.

The Insular Cortex makes up part of the limbic system

Many of us developed better skills at body language and, believe it or not, the emanations rising from ones body, often referred to as “body auras“.  This is an issue that many people just write off as “new age metaphysical crap” but as a ten year old entering puberty our minds were not littered with the filters of adulthood.  I became very good at reading the mood of a room full of people early in life.  I am convinced this contributed to my effectiveness as a therapist.  It also helped with my ability to study neurolinguistic programming (NLP).  A skill I formally studied in the early 80’s and use to this day.

For an abstract thinker spoken language is only about 25% of the communication process and the other 75% is based on a wide variety of cues.  Just a quick simple example, if someone is spinning you an untruth look at the hairs on their arms.  If they are standing up, you’re being spun.  It’s an anatomical reaction.  If the hair is smooth against the skin there is truth.  Anyway I’m explaining empathy, not teaching NLP.

These are concepts that don’t sit well into rigid cognitive beliefs systems, a natural trait of “concrete” thinkers.  I only raise this part because when I left the counselling professions I entered the world of policy analysts surrounding myself by concrete thinkers.  To most policy analyst’s the world is pretty black and white.  It’s difficult to write a “grey” policy.  The very nature of government policies is to eliminate those grey areas.  Transitioning into that kind of groupthink proved to be more difficult than I had initially given it credit for.  It caught up with me later.  I was a better therapist than policy analyst. Continue reading

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