The Santa Shadow

“The bond that links your true family is not one of blood, but of respect and joy in each other’s life” – Richard Bach

CONFESSIONS –   In preparation for the suggested snow that may be coming I did a quick roll over to the mall to grab the last “essentials” I may need for the next couple of days.  It was a sunny day here but cold as a witches…well you know the saying and a strong wind was blowing.

Got to the mall and it was chaos.  There was what looked like a line up for the munchkin characters auditioning for a remake of The Wizard of Oz.  This was the first crowd I had encountered that I could actually see over.  It is that time of year when I am eye level with more people and they don’t all have pointy ears.  As I got closer I realized it was the line-up for the photo with Santa.  I haven’t given it much though recently because everything I need to do is done.  All that is left is to get the gifts over to my son and grandson.

Christmas for me has become very simple.  I kind of prefer it that way.  Takes me back to part of my youth.  When you’re spend more Christmas’s in the Children’s hospital than in your families home then you may have a different perspective of Christmas.  A lot of kids would get “hospital leave” over Christmas and go home.  However those who weren’t well enough or mobile enough stayed in hospital and the staff made it very festive.

I was from a working class family, the “middle class” was in development.  I had five siblings at home so a good Christmas would produce three or four gifts plus a stuff stocking (which were usually one of our own socks back then).  Stocking’s tended to be filled with nuts (screw the allergies, nobody talked about those), maybe a Christmas orange, maybe something chocolate and little things like collectable cards, some marbles or some small toy (like Jacks, don’t even know if that game is played anymore) but you get the idea.

polio splints
You weren’t going home for Christmas in these things

Plus a Christmas at home came with it’s own inherent dangers.  At the time I walked with braces on both legs and they weight about forty pounds.  They didn’t have the materials then we see in today’s healthcare.  This was a time when you would lie down on a large sheet of industrial paper, the “crutch guy” would draw an outline of where the braces were going to go and then into the maintenance shop to be made.  Steel and leather, they were heavy.  So it wasn’t uncommon for me to take them off at home and scoot around the floor on my butt.  Scooting around on the floor at Christmas with at least five adults and ten kids held a high risk of being stepped on.  I have a personal appreciation for how Ivar would feel at a Vikings gathering.

The energy and excitement of the day would eventually work into a rambunctiousness the adults would no longer stand for so off they would send us to the community centre across the gully.  There were two outdoor skating rinks so the older kids would skate or play a bit of stick hockey.  The younger (and usually smaller) ones would use the toboggan hill.  Needless to say I wasn’t a skater so… Continue reading “The Santa Shadow”

Unto Thyself Be True

“Truth is nothing but a formulated perception of experienced reality” – L. J. Vanier

Something every advocate/activist has to be very aware of is perception.  When it comes to disabilities perception is very much attached to the impairment.  Access to someone with a visual impairment would be very different to a person in a wheelchair.  How society in general “perceives” someone with a psychiatric disability (invisible) may be very different from how they see someone with a mobility aid (visible).

Individual perceptions can differ based on scenario or cause.  How you perceive perception will change based on the situation or cause you involve yourself in.  If you fail to recognize where the perception is coming from you will lose your flexibility in resolving the issue.  If you are relatively new at activism then put a check list together for yourself to provide a template of assessment.

I participated in a conference call this morning with “Dying With Dignity Canada“.  Now I am not going to argue the pro’s and con’s of end of life decisions however  I will say we need to put as much serious thought into the compassion for end of life care as we show in fighting for the life of a new born.

To me end of life planning is very much a personal decision however since Bill C-14 the process for resolution of end of life planning is a muddled patchwork of systems across Canada.  Dying With Dignity Canada approached me to be part of this organization, in part, because of my background as an  effective and informed activist.  They are working with individuals who have an understanding and appreciation for the complexity of this issue.  Since my days of traveling to places like Standing Rock are behind me I now advocate through social media which is how I found myself on the call this morning.

I have knowledge and ability that some like minded individuals are interested in, people I don’t really know but share a common goal.  They are spread all over the country so their locus of influence on me is very limited but driven by a cause I can participate in.

I had a discussion last week with someone from Alberta regarding human rights issues.  A couple of days before that Barrier Free Manitoba had been in touch with me.  These groups sought me out because of a perception.  They didn’t look me up in the phonebook.  They responded to someone else’s perception of me.  Lately I have begun to question that perception.  I have doubts… Continue reading “Unto Thyself Be True”

After the Poster Child…

Two things have come together in the past week which has encouraged me to write a bit more.  Steven Bertrand, a younger advocate acquaintance of mine in Victoria, send me a note telling me he has been asked to write an operational manual for a service the City of Victoria provides.  That speaks well to his ability as a writer and his profile within the disabled community.  Here’s a kudos to him and it is good to see his generation becoming active.  I hope to discuss that further with him (historical perspective) but well done Steve.

Poster child

The second thing was a very good article from the The Star.  It spoke to an issue I have argued to all of my life, that of the cute inspirational poster child needing everybody’s help.  As a teenager with an attitude fuelled, in part by society’s attitude to disabled children, I spoke through my actions.  Acting out became my early form of activism.  I wanted to be seen as a person (even if that meant being a juvenile delinquent) rather than a cute disabled poster child.

As I aged, and matured, I discovered the power of words.  I began joining committees, getting involved in causes (this was all pre-Charter time), take part in protests, work for non-profits, started becoming a more verbal activists with techniques learnt through the anti-Vietnam protest days.  These were all transferable skills and I used them.  According to some, very well.  According to many others it just became “white-noise“!

However the article isn’t white noise and is well presented by Doctor Barbara Gibson.  Having a disability isn’t necessarily tragic.  You know what is tragic, the thousands being killed in Aleppo.  That’s tragic so lets get our priorities straight.  Every time you tell a child with a disability how “tragic” it is (and it gets whispered to parents more than one likes to believe, I’m in a wheelchair, not deaf) you lay seeds that can later sprout into a lot of self-doubt. Continue reading “After the Poster Child…”

The White Noise of Activism

“Our lives begin to end the day we become silent about things that matter” – Martin Luther King Jr

That quote has been a mantra of mine for over forty years.  It was eight years after his death before I discovered it.  The essence of that sentence became a way of life for me much to the chagrin of those closest to me.  I am not known for my quiet servitude.  I pride myself on my ability to assess a situation through a number of lenses and then take action.  If it is something I consider an injustice I am never “silent”.  Activism is in my DNA.

Speak Out
If those closest to us don’t get why will anybody else?

I was 14 years old when my activism career began. It was a combination of internal development ignited by external events.  Fourteen is a difficult time in the developmental process of a teenager.  With puberty happening and the Limbic System kicking in it is a precarious time for the development of a psychosocial persona.  This isn’t restricted to kids in a hospital but something every teenager faces.  In the community an angry teen can act out in many ways but you have limited options in a controlled environment like a hospital.  You have to become creative.  I chose activism without even knowing it.

I wouldn’t have called it activism at that point but I was definitely speaking out.  I was an angry kid in an environment that allowed me little control over my own life.  So I found reason to speak out against change.  The first was a simple policy change but proved to have far reaching effects on so many levels.  For years the Children’s Hospital had had little dining rooms on each unit where we went for our meals.  This was all part of the process to normalized life for the polio kids by establishing that family meal scenario.  But by the early 60’s polio patients were beginning to age out of the hospital and a different demographic of patient was starting to arrive.

With that changing demographic, the delivery of healthcare was also evolving.  One change resulted in the loss of the dining room.  This split up my team of peers while steam carts if food began arriving on each unit. For a young impressionable mind like mine I saw this as an adverse effect on the camaraderie of my social circle and an awakening to how little control I had over my life choices. Continue reading “The White Noise of Activism”

A Mentorship Moment…

“I am not a teacher, but an awakener” – Robert Frost

wheelchairsports
Ross Robinson (standing), Keith Werry (javelin) and me with the discus 

I have had some excellent mentors throughout my lifetime.  One of the most influential was a gentleman I met at age 13 Keith Werry.  He was 20 years my senior and became my first and most influential mentor.  Keith introduced me and so many of my generational peers to wheelchair sports.  I was fortunate enough to have had a fifty year friendship with Keith and was honoured to do the eulogy at his funereal.  He will always be missed.

In Vancouver I was exposed to the influence of many pioneers of the disabled movement.  Keith had been living in Vancouver at the time of his accident and part of his rehab was to be very active with the wheelchair sports community.  When I headed for Vancouver he connected me with some of his contacts, an action I will never regret.  As a teenager struggling to be “normal” having mentors like  Doug Mowat, Stan Stronge and Doug Wilson was invaluable in my early development.

Considering I was 16, active as hell in the midst of the Vancouver 60’s movement I shutter to think where I could have been without the influence of these mentors in my life.  I was all ideology and exuberant youth who believed a good time was the right LSD and a night-time of coffee houses while lamenting the loss of Lenny Bruce.

My wheelchair sports mentors helped provide a balance between my brashness while helping develop some social conscience.  Looking back and seeing the effect I cannot understate the importance of mentors.  They are the historians and pioneers that laid the groundwork of so many of the right we enjoy today.  Those rights didn’t always exist and to this day I never take them for granted.  These mentors not only taught me their history but they helped mold me as part of the history that we have today.

These same mentors helped lay the groundwork in me for my part as an activists and an advocate.  They also taught me the difference between the two terms.  In today’s world those terms appear to have become almost interchangeable but they shouldn’t be.  This is where the importance of words and semantics come into play.  Simply put an activist tends to stand up for an idea while an advocate stands up for a person or collective.

Talking Positive by the Beach
Taking an environmental stand as an activist in Kelowna on Earth Day

I was taught that as an activist I should be aware of any issue that may affect an entire community.  It is a collective effort.  For example, as an activist I could join Jane Fonda and others at Standing Rock to take a stand.  That is what activists do.  Activists are the public relation managers of community issues that nobody else really wants to tackle.

By definition an activist is a person who campaigns for some kind of social change. When you participate in a march protesting the closing of a neighbourhood library, you’re an activist. Someone who’s actively involved in a protest or a political or social cause can be called an activist.  Activists work together and they tend to be passionate about their work.  That passion is one of the things that separates an activist from an advocate.   Continue reading “A Mentorship Moment…”

Let’s Talk…

“In the world of words, the imagination is one of the forces of nature” – Wallace Stevens

An epiphany can happen at the oddest times even when you are lying on your back watching your wheelchair scoot away.  Now bare with me for a moment while I throw out a favourite topic of mine but I will withhold my rational for a future thought.  That topic is “words”.  Words are power.  Words are crucial when it comes to shaping the direction or fostering beliefs in society.  I think we just saw that in the Presidential election.  If Geoffrey Chaucer walked into the world today there’s a good chance he wouldn’t understand most of the words we speak.  However words, like power, change and we need to pay attention to those changes.  We have to be aware of how we are using words and the impact they can have on our society.  More on that to come but for now let’s return to my epiphany.

The weather has been a little on the rainy side for the last (well many) number of weeks and I needed to get out to get some water.  There was a time in my life when kidney stones were a persistent and painful issue for me.  These went on for eight years before my doctor suggested I try drinking filtered (not bottle) but water that has been through a reverse osmosis process.  I’ve been doing that for almost 30 years now and haven’t had a kidney stone since.  Maybe a coincidence or luck but it’s working so why screw with it.  Regardless it was a nice coincidence when my son texted me to say they would be dropping by for a short visit and was there anything I needed picked up.  Very timely considering I was just waiting for a break in the rain to go pick up my water.

The store I pick my water up is in a mall about five minutes north of me.  It’s $2/six pack cheaper than the local store right next to me.  If I’m just picking up a few groceries I will wheel over to the local mall and grab them however since I have to use my car to pick up water I will drive to the other mall and pick up a couple of dozen at a time.  I may be a little OCD but I generally get the 500ml bottles since three of those will provide my usual 1500 ml of water intake plus they work perfectly for the configuration I use in my fridge to enhance access.

Two dozen will last me at least 8 days so three or four water trips a month with, on average, a savings of $10/month.  Other factors include reachable space to store the water,  empty bottle disposal (generally hand off a crate full to one of the local dumpster drivers), etc.  I don’t know if that’s my OCD or my propensity for metacognition but on a subconscious level I rapidly analyze the potential outcomes and detail every aspect of a situation including purchasing water.

I asked him if he was coming from the north because I know my grandson goes to school in the south.  A bit of Island philosophy is that if something is more than ten minute drive away, it better be pretty special.  The idea of doing a three hour hike up Mt. Benson or even the five day trek along the West Coast Trail is fine and great physical conditioning which I find very admirable, however driving is a different matter.  I wasn’t sure he would want to go that extra distance based on the limited information I had shared with him.  With that said he told me no problem.

Great not having to go out in the rain is a plus but does remind me why I miss my underground parking in Calgary.  I could get into my car without dragging my feet through puddles and I didn’t have to sweep snow off my car (something that is almost impossible to do from a seated position).  These are the little things you really don’t think about until they stare you in the face.

Another example that even I didn’t recognize until I encountered it, garbage disposal.  I had always lived in buildings with garbage chutes on each floor.  Go down the hall to the garbage closet and drop a bag down the chute.  Much different from carrying out a bag of garbage and trying to maneuver it over the top of a closed garbage bin (traditionally higher than my wheelchair).  I wouldn’t have given that much thought until I encountered it the first time.  In this discovery process you develop “work arounds” and just incorporate it into your daily activities then never think of it again. Continue reading “Let’s Talk…”

Moving Forward with Focus

Speak Out
If those closest to you don’t understand, why will anybody else?

My last writing proved very cathartic for me.  The numbness of the American election is beginning to wear off and the reality is settling in.  As a life long activist I spent almost three weeks questioning my purpose while letting doubt seep into the crevices of my mind.  Some of that doubt comes amidst a sudden spike in hate crimes following the American election which is very reminiscent of the 60’s civil rights movement.  This is a huge step backwards and goes unchallenged by the new President-elect who is not speaking out and in many cases actually fanning the flames.  Unfortunately this is not restricted to south of the border.

Canada is experiencing its own explosion of hate attacks so now is not the time for activists to suddenly go quiet.  I have fought many battles over the past 40+ years and my purpose was always that of an advocate.  Lack of purpose can result in the loss of hope and not being one who wants to lose hope it’s time to redefine and refocus my purpose.   I fear scary times ahead with a huge amount of responsibility being handed off to the activists of today which would make my best role that of a mentor.

Sadly, based on my experience of dealing with the new generation of activists, I am not convinced they are truly prepared for the level of activism that will be required to confront the threat we are facing.  A threat to an open and free democracy goes way past battling homelessness or opening food banks.  It requires a strong network of advocates who are watching for the ripple affect of any change that impacts an individuals freedom and safety.  Now my hope is that I can be a good mentor rather than a semi-productive advocate.  It’s time to pass the torch but in a teaching way.  Why re-invent the wheel when the blue prints already exist?

Life long advocates know how insidious the erosion of rights can be.  I spent a good part of the 70’s and 80’s helping to guide legislation and community education on access for all.  However over the years a little regulation change here, another one over there, etc and they begin to add up usually resulting in the loss of a right.  Traditionally you don’t lose rights in Canada but regulations can be created in such a way as to make the application of those rights almost unattainable unless you are prepared to go though the human rights complaint process.

So now is not the time to be silent.  I have spend over 40 years speaking out about injustices in our society.  I have invested a life time into the promotion of human rights for all.  As I matured, the system we know today, was also maturing however many things were becoming unsustainable and people have moved away from “compromise”.

As someone who helped develop this system it’s like losing a piece of my soul every time I see a hard fought for solution ignored or denied.  The history behind the development of human rights, as we know them, has been a long and complicated affair.  It didn’t just happen and I cannot, in good conscience, decide now is the time for me to stop. Continue reading “Moving Forward with Focus”