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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The Sun Doesn’t Cut It

“The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge” – Stephen Hawking

I was quite shaken by the death of Stephen Hawking which has surprised me.  I knew of the man (you would have to be living under a rock not to know who he was) but I didn’t know him personally.  I have read some of his books but he has never been on the top of my reading list, the closest I get to “theoretical physics” is watching The Big Bang Theory.

I do take more of an interest in basic physics these days due to the functioning impact it has on my life.  As I have aged I have become increasingly aware of things like mass, motion, angles, lift and it goes on.  A transfer from my wheelchair to my car involves basic concepts of physics.  A height difference of one inch in my wheelchair seat to my car seat can have a major impact on the angle of propulsion I need to calculate for the transfer to be successful.  A successful transfer is the difference between finding myself on my car seat or lying on the road.  I try to find parking spots with the equivalent angles I’m use to.

A two degree difference on that hill I’m approaching may require a slight increase in motion speed to make it to the top.  The topography of a curb-cut angle may require a seating shift to create a different angle of balance or a directional angle in approaching the curb can mean the difference of getting up the curb versus laying on the road.  These are all basic physics and done without a lot of thought.  I don’t sit there calculating those things, I just know from experience and do it.  However these are the little things of daily life most non-disabled don’t recognize, why would they.  There is always a purpose I do many of the things I do my way.  The more advanced applications of physics I will leave up to Stephen Hawking.

The commonalities I share with Professor Hawking are generational and disability.  He has a few years on me but we were pretty close age-wise.  It wasn’t his achievement in physics, as impressive as they were, that created the affinity I feel for the man but the quiet advancements he made for disability activism.  His death has stirred up a wide assortment of thoughts I have been suppressing for years.

I will never regret getting older. I know too many people who never had that privilegeProfessor Hawking was diagnosed at a very young age with ALS (21 was very rare).  He was told at the time he would never see his 25th birthday but went on to become one of the longest living survivors of that deadly disease.  He surpassed that age by fifty years but he was dealing with the healthcare information of the 50’s and 60’s.  Advancements happen and times change.

As a polio survivor (1953) I was told I would probably never see my 30th birthday.  Well guess what, I’m still here and going strong.  Not sure that’s a good thing but it is reality however there is a world of difference between the issues I faced at 30 and what I am confronted with at 67. Continue reading

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Forgetting How Tyranny Grows

“All tyranny needs to gain a foothold is for people of good conscience to remain silent” – Thomas Jefferson

It is kind of a dull grey day here which is very much the way I am feeling right now with a tinge of anger.  I try not to write from the perspective of anger but in light of the Tillerson departure and the national students protest on March 14 I really need to get this out.  I will, however, keep it short.

A series of recent events (all within a week) leave me feeling like we are really losing our way.  My generation, the baby-boomers, as well as a good part of the Millenials have allowed their “good conscience to remain silent” by ignoring our history.  We have become the equivalent of examples of colonization in a technical world.  We now live in a world where information abounds but truth remains hidden.  And, as the students of Marjory Stoneman Douglas High School are showing us, the outrage is decimating our youth.

It is no Vietnam but just as destructive to young minds of those commonly referred to as “Generation Z“.  Those are the victims of tragedies like Sandy Hook in Connecticut, the Parkland, Florida victims, the Pathway Home victims, the murder of 80 youth at a summer camp in Norway and the list could go on.  These kids have every right to be angry.  We, “the people of good conscience”, have dropped the ball seriously through our indifference and the bubbles of awareness we have created for ourselves. Continue reading

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Is Home Where You Live…

“Perhaps home is not a place but simply an irrevocable condition” – James Baldwin

Have you ever had one of those mornings where you wake up and the first thought out of your head is “damn it”.  And you start to question why you had to wake up?  Well that was how my day began and that is generally a sign that I need to purge some thoughts so here goes.

I have started the process of moving.  I have moved many times but each move had its own distinct rhythm.  From Winnipeg to Calgary to Vancouver to Calgary to Vancouver to Montreal to Halifax to Toronto to Calgary to Vancouver Island to Calgary to Kelowna to Nanaimo and now back to Calgary.  The one constant seems to be Calgary however when someone asks me where “home” is I just shrug and tell them in my head.  Home, as James Baldwin so succinctly said, is a condition.

I quoted him because of the impact he had on my young mind.  As an 11 years old, restricted to bed due to surgery for almost four months with limited access to TV I read voraciously.  Comics get old pretty quickly so my reading was very eclectic.  I had just finished an Edgar Cayce book so it was an easy transition to Baldwins “Go Tell It on the Mountain” which I gobbled up.  Another brick in the foundations of my belief system.  So to me it is easy to relate the concept of home as a condition.

The first time I moved myself was from Calgary to Vancouver, I was 16, it took me fifteen minutes to get a backpack together and hit the road.  I was running away from the Alberta Eugenic Board letter that awaited my parents to get home from work.  It took me another sixteen hours to hitchhike to Vancouver but I was on the run so didn’t care.  I was moving and I made many moves in the next ten years.

When I left Toronto in 1976 I made up my mind at midnight and was on the highway by 6am.  I had been driving a taxi in Toronto at the time but had slipped in the bathroom of the SRO I was living in and broke my foot.  Couldn’t very well drive a cab with a cast on my gas pedal foot so it was a good time to head back west.  I had a backpack, a sleeping bag, a suitcase on wheels tied to my belt-loop with a rope and $90 in my pocket. Continue reading

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