The Fiefdom of Bureaucracy

“In any bureaucracy, there’s a natural tendency to let the system become an excuse for inaction” – Chris Fussell 

 

A couple of weeks ago I was interviewed by a BC reporter, Melanie Green, regarding the conundrum of aging with a disability.  This was done, in part, because of her interest in the recently release B.C. Seniors Poverty Report Card.   One of the common themes of the interview, as well as the report card, was the increasing dependence on a complicated bureaucracy which got me to thinking, so let me spin you a little tale using my sense of romanticism.

When I was younger, and I’m sure this hasn’t changed, I would traverse the urban and rural fields of the outland of our society while avoiding the baron’s of bureaucracy as much as possible.  That is one of the benefits of youth.  The only times I would wander into the wasteland of a baron was when I had no option.  If I needed a drivers licence I would have to enter the fiefdom of the transportation baron.  If I needed a birth certificate or marriage licence I would slowly slink into the fiefdom controlled by the baron of vital statistics.  When forced I would enter the fiefdoms with the stealth of Strider (Aragorn) rather than the tumultuous entrance of the Nazgûl otherwise I traversed the hinterland in an attempt to be as unnoticed by the baron’s as possible.

These baron’s of bureaucracy were all appointments of a much larger institute made up of our elected officials.  The elected officials were really the only gatekeepers of the modern day serfdom.  And whether you choose to believe it or not we are all serf’s in our own way.  Our life’s are governed and controlled by bodies of appointed baron’s of bureaucracy.  We have some control which is called a “vote” but that is a control that almost a third of the population ignores.  In other words you choose to be a serf and then complaint when a baron of bureaucracy puts barriers in front of you.

The walls of the baron's of bureaucracy

The walls of the baron’s of bureaucracy

Again, in youth, we just jump over that stone fence and keep traversing the area while avoiding the cottage of the baron.  As a young man I didn’t let the vagaries of regulations get in my way.  I wasn’t about to let some baron tell me (or charge me) to pitch a tent in some picturesque valley to enjoy an evening camp-over.  And I would be damned if I wasn’t going to drive ten K (sometimes more but I did have a bit of sense on self regulation) over the posted speed limit.  And forty years ago I wasn’t about to let some baron of bureaucracy tell me I couldn’t smoke a joint based purely on their regulations and ideology.  Now here we sit just weeks away from the legalization of marijuana in Canada arguing over which baron’s the control will be given to.

I have little faith in a group of baron’s who will spend $15,000 of Canadian tax dollars to keep some marginalized family from receiving $2000 worth of speech therapy for their disabled child.  These are the baron’s that do that, not the elected overlords.  The baron’s keep that kind of thing to themselves all in an effort to maintain their own fiefdom using the funds grant to them by those we elected to collect our taxes.  In other words these baron’s use our money to suppress our freedoms and rights.  Common sense never enters the picture until serfdom outrage reaches the ears in the houses of power, when we by-pass these baron’s. Continue reading

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Introspection on Perception

Reflection or Refraction

I look in the mirror and what do I see,
The reflection there, that can’t be me,
Others see what they want me to be,
From the reflection that’s there I want to flee.

Who can say why Anthony Bourdain took his own life when a perceived success was knocking on his door?  Most of us have an idea of what others see in us but very few know how we see ourselves.  This had to be true of Anthony.  I enjoyed his adventures and his perceptions of the world however there was something Anthony saw differently.

His life wasn’t easy by his own admission.  He lived with our perception which can make it easy to avoid talking about the inner machinations we have to live with.  It is very difficult to survive the trauma’s of life Anthony went through on his way to success and then express your true feelings to those who admire your strength.  I believe this was Anthony’s curse. Continue reading

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The Winding Road of Life

“Let us never know what old age is.  Let us know the happiness time brings, not count the years” – Ausonius

With the exception of some birds twittering outside it is very quiet however it is only 5:30 in the morning and for some reason I am awake.  It’s grey but refreshed.  It rained sometime in the night and natures water cleansed some of the earth.  We need some rain to help cut back on the threat and presence of the summer forrest fires.  Water can be so cleansing and represents life or renewal.

Many years ago today my mothers waters also ran and I came into this world.  It was the day of my birth.  May 31, Gemini through and through.  I celebrate this as my “arrival day” however in true Gemini style I celebrate my birthday in another four weeks.  Four weeks following my third birthday is when I was diagnosed with polio and the person that was became the person who was to be.

I have no idea who that little person that came into the world may have been if I had not contracted polio but I am well aware of the person I have become.  I am very good at deductive reasoning and all I have to do is compare my personalty to that of my five siblings to recognize the differences.  They are all very concrete, linear thinkers while I am very much an abstract lateral thinker.

Small black and white personal picture of me as a baby with a tiny curl of hair on the top of my head

Baby Terry

I can’t say with a 100% certainty how much of that difference is attributable to nature versus nurture but I grew up in a hospital (nature) while my siblings grew up in a family setting (nurture).  I suspect my development is partly from growing up in an environment (hospital) where there were no real definitive answers to so many issues while in the family setting it was basically yes or no.  So my upbringing by so many standards (except mine) was anything but normal.

I arrived early in the morning so maybe that’s why I am up so early today.  Perhaps on some sub-conscience level the sound of mother earth’s water released during the night triggered some memory of my mother’s water breaking announcing my arrival.  I do know the person I started out as arrived early in the morning many years ago but the person I became was born three years later.  It was almost like having been in a cocoon for three years.  I could ask myself why, with three other siblings at the time, I was the only one to contract polio but that is really irrelevant.  Most of my family became other polio kids in the hospital.

By the time I was 16 I had lost five peers who would never see 16 while all my siblings had to deal with was the death of a family pet.  That goes a long way to the nature versus nurture developmental philosophy.  Somewhere deep down I made a commitment to each friend who never got half way through their teens to squeeze a bit of fun and experience into my life for them.  I believe I did that.  I don’t count my life by years but by the experiences I have enjoyed and there have been not only many but also very diversified.  My life experiences were never simple but always varied. Continue reading

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Back Home and Back to Basics

History never really says goodbye.  History says “see you later” – Eduardo Galeano

Between dealing with the “normal” aging process of a non-conventional body and watching the erosion of disability rights I have been withdrawing into a numbness.  I feel like I have been fumbling around a dark tunnel for the past three years while searching for a light at the end of the tunnel by feeling along a wall that seemed never ending.  It is a slow process pushing a wheelchair while continually stopping long enough to reach out and touch the wall.  The ability to feel that wall was the only anchor to hope one had in the darkness.

Each time I perceived some light at the end of the tunnel a mist would creep in to blanket out that light.  Often that mist was the creation of the erosion of rights or the neglect to access.  Systems that were established thirty or more years ago to make life easier for a segment of the community, those with disabilities, had slowly evolved into a wall of stress that turned those needing the supports to a product for a system of jobs for administrators.  By keeping those needing the supports the most in the dark these workers were protecting their futures.

I stopped writing, I stopped socializing, I was overcome with darkness and met nothing but further rejection whenever I attempted to speak out.  I had entered the twilight of depression and allowed the mist of solitude to envelope me.  I was questioning my purpose continually.  After over 45 years of fighting for rights I was taking on the mantle of failure.  I was personalizing the failure of the social safety net and creating a vicious circle of entrapment.  I started to realize I had to adapt or succumb.  I am not good at succumbing or quitting so I took a lighter out of my pocket and shone the light forward.

I was beginning to see a light at the end of that tunnel but it required me taking action I had been denying.  It meant giving up on others and focusing on myself.  As a life-long advocate I have always been very good at finding solutions for others while ignoring the personal barriers I may have faced.  I had always overcome my barriers by opening doors for others.  That was my strength and that was the light I needed to see.  I had to return to the beginning and get back to basics for myself.  That meant me leaving the situation I was in rather than trying to make the situation fit me.  There was no option for “fit” so I had to remove myself from the situation, I moved.  Continue reading

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What Is Family?

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

It is one of those days and the frequency is increasing.  I have been experiencing a new sensation that can best be described as a hive of bee’s crawling over my legs collecting pollen.  The sensation is not of stinking in a painful way but annoying in that way the last moments of the freezing leaving your jaw causes following your dental visit.  Between that and the grey weather outside this makes for a good writing day.

I received an article in my news alerts a couple of days ago which was very timely.  It was from an Ottawa news source but hit on a topic I had been discussing Saturday evening with a friend, what is family.  I think the importance of family is directly proportional to the type of disability you have grown up with.

If you have the ability to self-determine and manage your own affairs you can get by with less family involvement.  Persons like myself or Glenda Hyatt are very capable of fighting for our needs, even the ones we shouldn’t have to.  We have become use to a world where we have to take certain positions or stances that require a level of cognitive sustenance lacking in many other types of disabilities.  The benefit of family support is nice but we can live without it if we have to.

If you live with a disorder that impairs your ability to self-determine the importance of a family cannot be understated.  An aging population with developmental factors are dependent on family to compensate for the lack of ability to self-determine.  The aging parent care-givers traditionally handle this.  Those same families are also recognizing the erosion or privatization of the services they fought so hard for.  Who will manage their child’s care once they are gone?

In the 70’s and 80’s there was a massive push by governments to cut back institutional living and involve families in home communities.  This decentralization of large institutional care centres to a community based approach put the responsibility on the family.  I know too many parents from my mother’s generation who have been the primary care-giver or service supervisor for their disabled child.  With that said that “child” is now close to or in their 60’s themselves and that family involvement has been a life time of service.

The conversation I had on Saturday evening revolved around “what is a family”?  I have wrestled with that concepts for most of my life.  I did a Google “What is family” search and received over 370 million responses, way too many for my purposes so I quickly scanned twenty of the best rated ones to see if I could see a pattern.

1960 Picture of the Alberta Children's Hospital in Calgary

The Alberta Children’s Hospital circa 1960 (my childhood home for almost eight years)

One of the consistent themes used in describing a family were the words “home”, “house” or “place of residence”.  Interestingly the idea of “blood relative” was absence but the importance of “mutual respect and support” was used a lot.  That I could relate to. Continue reading

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Who Is Responsible…We Are

“The best argument against democracy is a five-minute conversation with the average voter” – Winston Churchill

I have been watching some of the online news coverage of the March Across America movement and one of the words that is providing a common thread is “hope”.  I find a certain sadness in that.  These kids should have “aspirations” play a bigger part in their lexicon than “hope”.  Unfortunately tragedy brings on the need for hope while smothering aspirations.  I find it difficult to call these kids “kids” since the reality is they are young adults quickly approaching voting age.  Today’s policy makers had best take notice of that.  A tsunami of a new informed, engaged and now enraged electorate is beginning to swell.

This new wave of young voters has access and knowledge to technology never seen by the generations before.  The March Across America has gone international due, in part, to this technology but also fuelled by a generation who want true control of their lives.  When you are confronted with school suspension simply for participating in protest that’s intimidation.  Todays young people are fighting for the right to self-determination and will no longer tolerate blatant intimidation as a norm.  After all they are the ones being shot or killed.

They are no longer content with big money lobby groups like the NRA or huge money Political Action Committees (PAC) or Super PAC using the democratic process as a “casting couch”.   They may be living under a Presidency who has turned democracy into a reality TV show however the March Across America is focused on changing that.

I have had people from my own generation (baby-boomers) make disparaging comments about these young activists being just kids and not knowing anything.  I beg to differ.  I have watched much of this coverage on the very technology the baby-boomers lacked.  When you watch eleven year olds speaking with more maturity and common sense than our politicians you start to realize the change on the horizon.

When I listen to the likes of Cameron Kasky speak out I hear wisdom and conviction.  When I hear the likes of Emma Gonzalez speak out I am reminded of another young person dragged into the spotlight due to gun violence, Malala Yousafzai, the youngest Noble prize winner in history.  Age is irrelevant when it comes to maturity and insight. Continue reading

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The Aging Challenge

“Aging is not lost youth but a new stage of opportunity and strength” – Betty Friedan

Having spent all of my life with a disability I have learnt never to take anything for granted.  If I accepted every “assumption” that had been thrown in my direction I probably wouldn’t be where I am today.  With that said I often find myself making assumptions regarding aging or more accurately I take certain things for granted.

The four generations of one limb on the Wiens family tree, Mom, me, my son Sean and my grandson Taylor in mom's apartment

The four generations of one limb on the Wiens family tree, Mom, me, my son Sean and my grandson Taylor in mom’s apartment

Baby-boomers have entered retirement while redefining aging.  Demographically we have more four generation picture than anyone before us.  We now live in a time where there are two generations of seniors making it easier for boomers to deny aging.  This whole “60 is the new 40” attitude is changing the whole concept of retirement.

Most of the boomers I know still have at least one, in many cases both, parent alive and well.  We grew up believing grandparents were “old” people which creates some cognitive dissonance when we are also grandparents.  We have different expectations of retirement than our parents do.  We still help our parents, support our kids (who are really adults) and wrestle with the reality of being a grandparents ourselves.  After all being a grandparent is an admission of age.  We are also confronted with a system of retirement support that hasn’t caught up to the needs of boomers.

My grandmother’s generation spend their last days either at home or in a nursing home.  That more institutional approach was common to the societal norms of that time and would have been considered “collective care”.  Their children, our parents, idea of retirement was focused on a safe and secure environment while still providing a level of independence, “communal care”.  Physical needs met but autonomy promoted.

This required a shift in societal thinking from the nursing home approach (care as service) to assisted living facilities (care as business).  That is a concept that slowly started to evolve in the 80’s.  It was a by-product of the approach to deal with injured Vietnam veterans.  The societal norm had shifted to a more independent aspect of life than previous veterans.  This was a major shift in the belief systems of an entire generation, the baby-boomers.

Picture of small rocks with the inscription "Inside every senior citizen is a young person wondering what the #$%# happened!!

The rock garden of age

Any major shift in belief systems can be very challenging.  Today technology and social media is pushing belief systems at a very accelerated pace.  Recently I have come to the conclusion that the biggest challenge facing baby-boomers and retirement is not the aging process but the threat to their belief system.  We all have tools that help us adjust ourselves to the “age related” issues.

I have friends that use a cart more than they use to to continue their golfing hobby or have added “grab bars” in the shower to help with balance.  These are natural transitions aimed at maintaining physical safety but do nothing to alleviate a belief imbalance.  How flexible are your beliefs? Continue reading

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