My New Reality…

“The ultimate test of man’s conscience may be his willingness to sacrifice something today for future generations whose words of thanks will not be heard.” – Gaylord Nelson

Not sure what woke me up this morning, the construction, the heavy pounding of the rain (will this winter ever come to an end) or the sharp pulse moving up and down my arms like a 12 string classical guitar with all 12 strings out of tune.  Today is definitely a three pill day, narcotics be damned.  Growing up in a hospital you adopt the philosophy of better living through chemistry early.  On the upside I’m waking up.

Got a lucky break late morning with a few hours of sunshine so used the time wisely and hit the Save-On.  So I am well stocked in anticipation of the next four days of rain.  I have started paying more attention to the weather reports and less attention to the news (with the exception of the BC election) these days.  I know during the rainy time my body behaves like a badly tuned and out of sync garage band.  But again at least I woke up which is more than two good friends did in the last week.  Rest in peace Liz and Lance, your time is done and your suffering has past.  My condolences to their loved ones.

I have been putting a lot of thought into the CBC story I had shared recently.  I put so much thought into it I contacted the author, CBC’s Donna Carreiro.  More on that contact to come…meanwhile her article actually woke me up.  I started thinking of my own situation and did a bit of my own research.  My descent into wheelchair dependence was gradual with the biggest part happening after moving to BC.  A whole new set of medical professionals to get to know and me working from the assumption that the fallout of polio was understood.  For the record, I do not have polio.  Polio is a virus that runs its course, does its damage and then it’s gone.  The damage done is the outcome of polio, the residual is not polio.

No medical professional ever mentioned post-polio to me.  I was aware of it but with limited knowledge.  The closes medical rational I ever received for increasing wheelchair dependence plus symptoms like quicker to fatigue was the “strains of a life time of walking on crutches”.

gainpainThe idea that my medical team (I call it a team but it’s really a pathway of referrals so that health “administration” can call itself a system) wouldn’t understand polio never entered my mind.  When you’ve lived your entire life with polio you think everyone knows, you know the saying “can’t see the forest for the trees”.  This is the problem with assumption rather than critical thinking.

When I think about it I knew few people of my generation in 1967 who were aware of the devastation caused by Spanish Flu.  Fifty years later why should I expect those generations behind me be anymore aware of a disease we basically eradicated in Canada fifty years ago.  Some realizations can be painful but needed to avoid future pain.  I have now come to grips with the idea that post-polio has played a role in my advancing decrepitude.  After over forty years of fighting for inclusion and acceptance the posts have been moved and I have to adjust.  Welcome to the my world of accommodation…unfortunately I have watched while the BC Liberals have slowly eroded a good chunk of the advances made. Continue reading “My New Reality…”

Crappy Way to End the Week

“If you don’t know history, then you don’t know anything.  You are a leaf that doesn’t know it is part of a tree.” – Michael Crichton

Happy Easter or whatever celebration you celebrate at this time of the year.  My Easter morning experience involved extricating myself from between the wall and the toilet in my bathroom.  Using the potty can be a delicate discussion and usually involves just as delicate an action but I’m going to throw this out there.

Made a poor judgement on momentum this morning so between the landing and a very lose screw (one of two that hold the seat steady) I overshot the landing zone taking time for a face to face with my toilet plunger.

It seemed like a good time for a mental distraction as I wiggled physically to regain a vertical rather than horizontal perspective of the room.  That distraction turned into an epiphany involving physics.

I’ve broken my fair share of toilets in my life but baste on what I hear (or don’t hear) I don’t think it is an occurrence for most people. Getting myself dislodged gave me some time to reflect on it.

toiletThis is the bathroom in my “wheelchair” apartment.  There is no way a wheelchair is getting in beside that but whatever code interpreter was issuing the permit seemed to think this would work.  What the hell, I’ve been here almost three years and made it work.  So please don’t start on me about accommodation.  I’ve done my fair share.

I’ll bet you have never thought of this but the next time you go to sit on the toilet pay attention to how important knee motion is to lightly sit on the commode.  That knee movement allows for a much more controlled PSI landing.  It’s nice equal weight distribution which is what a good toilet is designed for. Continue reading “Crappy Way to End the Week”

I’m Coming Back…

“As you remove toxic people from your life, you free up space and emotional energy for positive, healthy relationships” – John Mark Green

I thought I was done and was packing up the keyboard.  I was just going to shut the site down, rearrange my life and keep my opinions to myself.  I was feeling increasingly like “white noise” and I thought it would be easier just to shut down.  Two months of biting my tongue has shown me it is to difficult to blindly accept the level of societal negativity going on around me and be quiet about it.  It is increasingly difficult to maintain a stiff upper lip while the chasm between right and left ideology continued to deepen.  I am not so sure now is the time to shut down.

I have reread my last article a number of times now and have had time to reflect on where that anger was coming from.  I don’t like anger if for no other reason than it fucks with my feng shui.  During this period of reflection I came to the realization that I owned some of the responsibility for this anger.  I had started personalizing issues and that traditionally leads to lost of control.

I usually pride myself on my ability not to personalize issues, comments or give up control of my emotions but I slipped.  It wasn’t any one event, it was information overload, too much negative news and complicated by social isolation.  And as a political junkie, it’s difficult not to be a little negative these days so it just seemed easier to shut her down.  When you don’t golf, hike, cycle or take long walks on the beach you don’t have a lot of venting space so shutting it all down seemed like the path of least resistance.

ThoughtsThe last two month has been spend reflecting going through my year end activities.  Things like shredding old pay/staff records.  Seven years and this is the last year of records I have to shred.  Getting my own taxes done, working some policy issues through with the local health authority, trying to stay on top of access problems in my own town and the list goes on.  All of this has given me time to reflect on a wide variety of issues and things keep coming back to government policies.  It’s not that they are not there, it’s just that they are not policed.  We defend rights by speaking up for them, not adjusting them on the fly.

Reflection also gives you time to recharge and I did need that.  During this period of reflection I kept receiving my news alerts and they were screaming for a comment.  When someone can lecture a young lady who has been on crutches all of her life about the dangers of using stairs people have to speak out.  Up until the late 70’s persons with disabilities could be refused rent on anything above the second floor and I do not want to go back to those days.  The bigger issue here is why that particular night spot didn’t have an accessible bathroom…  Continue reading “I’m Coming Back…”

Still Marching…

I am extremely concerned over the events that lead up to yesterday’s Women’s March and disgusted over the need for it.  I thought my days of participating in civil rights marches were over but I was wrong.  I can’t quit now and watch all that I fought for disappear.  This March is not just about women, it’s about protecting the civil rights of everyone.

America has elected a president, one of the most powerful positions in the world, who will say, do or denigrate whoever he deigns to at that moment to advance his ego.  I say his ego because he has been very light on policy except to undo all the “damage” he states the Democrats have wreaked since Obama’s Presidency.  America elected a President whose platform is based on how great he believes himself to be.  Asked many times on the campaign trail about his platforms the best he seemed to be able to do was reassure everybody they don’t need to worry because he’s so great.

My breaking point, mind you I was stretched pretty taut by that point, was his denigration of a disabled reporter.  Yet so many people initially ignored this.  I got so pissed off my own family were prepared to disown me for making that big of an issue at the time.  It now appears that many more were watching than I realized and yet there are still deniers.

newsawarenessI made a brief mention of the incident on one of the Facebook pages I am connected to only to receive an immediate backlash.  I have no idea who this Tom Palmer is however as someone who worked as a therapist for almost fifteen years I recognize the syntax he is creating.  When a simple comment regarding a single action can be seen as “you jump on this post sewing your venom like rabid cats. first off with terry and the disabled reporter mocking facts before you come on and look like you’re still stuck in the quagmire of lies surrounding that incident“.  I don’t respond to those people because they are like Trump, total denial and blinders to actual facts.  I have spend close to fifty years as a disability activist and I’ll be damned if I’m going to sit back at the expense of every rights advancement that has been made in my community, the disabled.

My experience has been comment’s like that are based more on a rigid ideology than fact and anything one says to this type of person is just going to feed the narcissistic nature they share with the new President.  When someone can take an innocuous comment and turn it into “sewing your venom like a rabid cat” they are not looking for discussion, they are in search of verbal dominance at any costs.  Can’t waste my time on that. Continue reading “Still Marching…”

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”

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

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…”