Is Being a Pioneer Worth It?

“In a word I was a pioneer, and therefore had to blaze my own trail” – Major Taylor 

There’s a light fog out there today, maybe better described as a mist but enough that you know the horizon is there but you can’t quite make it out.  That same fogginess has been clouding my mind of late which has stymied my writing.  So today I have to get some thoughts to paper before I go completely ballistic.  This misty mind is very depressing and when you are socially isolated the only form of expression is my writing.

People have been telling me for most of my life that my activism made me a “pioneer”.  That may be true but in my mind a pioneer has a destination with the plan of arriving at a destination.  My destination has always been an inclusive community which involves minimizing barriers, a society build on policies and regulations designed to eliminate any type of physical, attitudinal or systemic barriers.  A community that protects and supports all members otherwise known as an “inclusive” community.

To fully understand inclusion one needs to recognize three basic concepts.  Inclusion can have numerous forms but are generally defined by three parameters.  Some individuals may need more hands-on supports, which is interdependence.  Some may simply need protections provided through some policy or regulations that just even a playing field, independence.  Those two states are different but related.  The connecting concept, which often gets lost in translation, is the ability of self-determination.  That ability to self-determine contributes deeply to ones dignity and self-esteem.  How important is inclusion if you have to live it without dignity?

If you can’t differentiate between those three concepts you will never really grasp the importance of the “independent living movement“.  Those three terms are the trifecta of an inclusive community.  Without acknowledging all three you are simply creating a “product” for a healthcare system.

As a young polio survivor I was in the perfect demographic to be a pioneer in the coming independent living movement.  I grew up in the shadows of the likes of Robin Cavendish, Doug Mowat (one of the founding members of the BC Canadian Paraplegic Association and first elected disabled MLA), and Judi Chamberlin.  These are but a handful of activists whose mantle I picked up in the late 60’s and forward in my life.  They prepared the pathway that my generation began to pave.

I did my first activist march as an 18 year old hippie in Vancouver.  I got involved, as so many hippies did, protesting the Vietnam war.  It wasn’t due to my crutches but it did introduced me to the world of activism.  I was in Vancouver as a way to outrun the Alberta Eugenics Board.  Sterilizing the disabled was still allowed in Alberta so when I saw that letter show up I was out of Calgary and on my way to Vancouver before my parents even got home from work.  So the seeds of activism were already there, they just hadn’t been nurtured yet.  Vancouver did that and gave me a process.

Picture of a person walking through a field of high grass with caption
Never let them see you bleed

After retuning to Calgary I enrolled at Mount Royal College in 1970 at a time when schools didn’t have to accept students with disabilities.  The old Mount Royal in Calgary was far from accessible and again I was told I was a pioneer.  The students union nurture my activism gene even more and it took off faster than a Japanese Honeysuckle vine. Continue reading “Is Being a Pioneer Worth It?”

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.