Preparing the Garden of Privilege (edited)

“Privilege is when you think something is not a problem because it’s not a problem to you personally.”

A single jpeg with the wording "I'm only responsible for what I say and not for what you understand" surrounding a butterfly
Like election promises, we hear what’s convenient

Coming out of this (maybe) pandemic nightmare, I believe, is going to leave some unexpected “long hauler” effects on a society in general. Personally, having been through this before, albeit I was only ten years old, but with the benefit of six decades to look back on, it is easier to see patterns. 1960 was really the year when polio kids began being accepted into the community, five years after the introduction of the polio vaccine (1955). Prior to that there wasn’t much acknowledgement of disable in the community.

Prior to WW2, western Canada had primarily been an agrarian society while developing the natural resources economy. At the same time central Canada was mainly commerce and manufacturing with some natural resource in the northern parts of Ontario also extending into Quebec. Understanding the history of the wide variety of economic “restarts” Canada has experienced should provide some important lessons on “recreating” an economy when the parameters have changed so drastically in the last hundred years. The biggest difference this time around is “social media”. With five generations now eligible to vote the importance of a generational “union of thought” requires dialogue and compromise between t he numerous generations. We will just continue to slide backwards if we can’t, as a society, get past “generational shaming” to discuss “solution based” compromise.

Prior to WW2 Canada was recovering from the “Great Depression” which had created a major migration from farming towns to major urban centre. Economic changes needed to fully transition from the pre-war economy to a post-war changing labour force contributed to a growing “middle class“. The returning injured veterans were no longer content being stuck in an institute as their “reward” for their sacrifice to their country.

The services and supports needed where all in “the City” so many stayed there, in 1946 they saw no future for themselves on the farm. Returning home with war induced injuries, these same veterans were not fully prepared for the battle for independence facing the disabled of the day. They were seen as “broken”, after surviving a disabling issue (spinal cord injuries, amputees, etc), fighting for their country just to get home and find themselves being offered an upscale prison camp. It wasn’t a planned cruelty but reflected a reality of societal thought of the day, provide a nice extended care centre and house everybody there rather than restructure communities to be more inclusive.

Veterans of the day were not about to simply comply with the current conditions and accept the “warehousing” facilities disguised as “extended care” facilities of that time. What quickly became apparent was that these veterans were not going to go quietly into the night, they wanted “options” for living independently in the cities.

Veterans, and by extension, polio kids only had a 25 to 30 year life expectancy post injury. It generally wasn’t the injury that contributed to a shorter life span, it would be any infections. The advancements made in antibiotics extended the life expectancy of so many disabled while demanding communities be more inviting and thus began the development of todays. However this life expectancy was based on data from a completely era. WW1 was a very different period but this was the data the assumptions being made post WW2.

The life expectancy of WW1 injured vets was less than two year (on average) so government could, and often did on a short term basis, basically make promises knowing the clock would run out. However, with the advancements being made in healthcare (particularly with antibiotics and orthopaedics), the sheer numbers of WW2 veterans, a growing media and the emergence of peer directed care was beginning to have an affect on the politicians of the day. Antibiotics drastically changed the anticipated life span of the disabled.

The history behind “antibiotics” is young (around 1930) but the importance of antibiotics had long lasting effects. It wasn’t the trauma that shortened their life, it was infection and who were generally the first people to recognize infections in a patient, the nurse. Healthcare is a slow moving process but it is moving forward at a rapidly increasing pace. Right now, in this pandemic crisis, what we need is just some good old “common sense”. It doesn’t take a rocket scientist to recognize the folly in demanding Alberta nurses take a pay cut in the midst of a health pandemic. It may sound too simple however my belief system tells me to work “collaboratively”, not dictate conditions. The last I check Alberta is still a democracy however democracy, like healthcare, requires hard work to maintain. It was this same type of political dithering that wasted the ten days with my mother trying to get me seen by the hospital. That ten days at age 3 now has me in a wheelchair at 70, thinking I’m 35 but a body telling me it’s… well considering I’ve lived almost 40 years past my “best before date” I can’t really complain.

My belief system is very important to me and should be to everyone. All of our major life decisions are based on our belief’s with many of those are more subconscious than conscience. Beliefs are your moral compass and, like any compass, true north moves so every now and then you have to adjust your beliefs to match up with current societal thinking. I do that regularly.

This sad discovery of these unfortunate unmarked graves at these residential schools really stirred up some memories while creating a huge epiphany to me. Societal compassion in the 50’s, generally, created some very fulfilling hospital environments for polio kids. Unfortunately the same couldn’t be said for residential schools. Polio kids had “privilege”, as a 5 year old what did I know about “privilege”. Nada but that was one major difference between a children’s hospital and a residential school.

I can’t just sit back, “enjoying my privilege”, while so many unmarked graves are being discovered in residential school properties. What I find even more disgusting is the feigning of surprise from so many people, in particular politicians. I grew up under the influence of the wisdom of Edgar Cayce, “The Sleeping Prophet” and the conscience of a Jiminy Cricket type character. After all his primary purpose was as a “conscience” for Pinocchio or “courage” for Dumbo. What may start off as pleasurable but end with the reality of Old Yeller. This isn’t new, Disney wasn’t wrong.

When I was first diagnosed with polio (1953, 3 years old) I spend a lot of time in Winnipeg’s King George Hospital. At that age ones mind is like a fertile field for the mulch on a garden of thought. The amount of cognitive growth in that 3 to 5 year range really lays the foundation for one’s future belief system. I don’t have a lot of clear memories from those two years but compared to the kids in the residential school system, polio kids housed in a hospital were shown something that never seemed to be mentioned with residential schools. Fifty-seven years to get an answer, yes I would be fed up as well.

We were survivors, we were shown some dignity in the hospital, a concept not even recognized in the residential school system.. Sadly, watching the Alberta UCP roll back supports for the disabled, it’s not a big jump to see Alberta sliding back to the day of institutional living, AGAIN. We are slowly sliding back to situations that created many of these issues.

AMBIVERT – a person whose personality has a balance of extrovert and introvert features

I can tell you as a survivor of polio, no vaccine is ever going to be 100% the same way a condom is never a 100% certainty that you won’t get pregnant. It was this same type of dalliance that delayed (ten days) my childhood opportunity for an earlier diagnosis but why worry others during a pandemic.

Well the tech just called to say he would be here in about ten minutes and I want to finish this. It may look like a simple thing but one can’t really He’s going to reach the cords I can’t (I know “connecting” electronics looks straight forward, and is, until you are looking at those cords from a wheelchair. So my next article, and there will be more, will be done on my new laptop. I think I’ve mentioned this but seeing this old desktop (served me well for over ten years) is like watching your first born move out. Later and stay healthy plus everybody, understand your common sense and reestablish your relationship with “critical thinking“…

I’ll be back, meanwhile I can tell you personally, as well as professionally but I read more than Kafka novels (I enjoy Kafka but his is not the only world, try some Jules Verne). Different perspectives can be good for your health and I never, nor should you, create a belief system that is so rigid it moves more into the area of propaganda. Later

A Disability of Convenience

“A people that values its privileges above its principles soon loses both” – Dwight D. Eisenhower

I have been trying to remain non-political for a number of months now due, in part, to the sad state we find ourselves in politically.  More so south of the border but also creeping into Canada yet again.  When some Americans find it more acceptable to vote for an alleged sexual predator rather than a Democrat then you know it is a sense of privilege running a country, not a democratic process based on principles and ethics.  Roy Moore’s push for the Senate and his refusal to acknowledge his alleged sexual offences towards teenage girls is a prime example of how the sense of privilege comes from a position of authority.  It has nothing to do with skin colour, gender, religious affiliation or place of origin.  It is purely attributable to his position of power which reportedly was during his role in the district attorneys office.

We saw this same type of privilege coming from Michelle Stilwell then the BC Minister Responsible for Persons with Disability.  She used her accomplishments as a Paralympian to denigrate the very people she reportedly championed.  The disabled and the marginalized.  The fact the she was also living with a disability quickly became irrelevant.  It is difficult to hear a politician talk about the difficulties of finding a secondary place to live on government rental allowance of $1000 a month while those on provincial disability benefits are expected to exist on $375/month rental limit.

Picture of September 2016 income assistance disability ratesHer suggestion that if more disabled got off of their sofa’s and pursued other activities they may also be able to achieve Paralympian success was pure privilege and not based in the realities of life.  The bulk of disabilities are not in wheelchairs but with that said 70% of the rental market in Nanaimo is not available to me.  The affordable (kind of) units tend to be basement suites which don’t lend themselves to wheelchairs.  And it could be argued that I am one of the fortunate ones having never been subject to the abject poverty trap known as “disability benefits”.  How many people out there can live on $906 a month (now just over a $1000) while contenting with the life difficulties of a disability?

And now enter Kent Hehr, the federal Minister Responsible for Sports and Persons with Disabilities.  I have reviewed his Mandate Letter and one line, “identifying ways to find solutions and avoid escalating conflicts unnecessarily”, jumped out at me.  I had the opportunity to meet with Kent while living back in Calgary.  We had coffee together on numerous occasions while he was a Liberal MLA in the Alberta legislature involving in-depth discussions regarding living with a disability.  He talked a good talk.  As a pioneer of disability activism with mentors like Doug Mowat, Doug Wilson and Keith Werry I truly felt Kent was a member of the next generation to pick up the mantle of fighting for the rights and dignity of todays disabled.

Imagine my disappointment with Minister Hehr’s recent controversy now that he is in the ruling federal Liberal party.  His denigration and back-walk from the Thalidomide victims turned my stomach.  I have personally been reaching out to Minister Hehr regarding the status of approximately 25,000 baby-boomer polio survivors to no avail.  Not even an acknowledgement.  I suspect it is easier to engage in feel good rhetoric when you are in opposition at a provincial level than it is to actively “walk the walk” when you are a Minister in the ruling federal government.

Infographic chart on disability types)To fall back upon the excuse that “as a person with a disability myself” while denigrating a segment of the disabled population is deplorable.  It is just another example of a position of power exercising their “privilege”.  I have heard Minister Hehr use that “person with a disability myself” on every explanation he has put forward on this issue.  That is not an apology, it is simply using your disability as a matter of convenience.  That is like comparing a wolf to a rabbit, yes they are both mammals but with very different perspectives of life.  It just doesn’t wash Minister Hehr.  It does little to demonstrate how supportive those speaking on behalf of the disabled has become nothing more than an exercise in privilege. If you truly understand then perhaps you would like to disclose what kind of financial supports (over and above your base pay) you receive to cover the costs of your day to day disability related expenses.  The kind of benefits denied to so many.

There is a whole generation, like the Thalidomide victims, that fought hard for the rights you take for granted today.  It is difficult for me to justify the vitriol younger activists like Steve Bertrand go through when they raise their voices while the behaviour of those elected to represent us keep pushing us down.  I cannot, in good faith, stop my political advocacy while the kind of “sense of entitlement” demonstrated by Minister Hehr goes on.  So yes I am back and will continue to fight for the dignity of life that is denied so many living with a disability…I still believe in social values and ethics.