The Lasting Legacy

Full body braces 1955
The Hare 1955

I often joke that I grew up with about 30 mother figures and one father.  The hospital’s of my childhood was the employment domain of the female worker which contributed to so many mother-figures.  With the exception of your doctor, who you may have seen an hour or two a week (unless he was hanging over you with his surgical mask on) or a janitor somewhere, everyone in positions of influence were women.

Physio’s, nurse’s, teachers and any other staff that had direct care duty with us would often entertain us with a story like “The Little Engine That Could” while we were undergoing treatment.  I was nine years old and my physio had made my mantra “I know I can”.  We were surrounded by nurses, saw our physio two or three times a day and teacher four to six hours a day.  Even with surgeries you couldn’t escape those teachers.

Polio unit
The numbers were so high they required dormitories.

It was not uncommon to have a nurse on one side of my bed giving me a shot of demerol and my math teacher on the other giving me my home work for the day.  We may have laid around but we didn’t just LAY around.  We were expected too produce and that was the strategy to build survivors.  The numbers were just too high to ignore so there was a lot of effort put into making us adaptable and independent.  It might have been a hospital but, in those days, it was also our home.  We were expected to be part of the “treatment” team.

Like any home we all had our weekend chores.  I spend more weekends, outside of recreation time, scrubbing black wheelchair tire marks off the hallway floors after racing up and down all day.  Or you spend a couple of hours sterilizing bedpans and urinals with a nurse and there was always a story.  After all a 25 year old nurse couldn’t sit there and discuss their wild weekend (if) with an 11 year old and small talk can be difficult with a questioning 11 year old.  Instead  they would tell you a story.  The stories weren’t just distractions but themes meant to instill confidence and survival. Continue reading “The Lasting Legacy”

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…”

Moving Forward with Focus

Speak Out
If those closest to you don’t understand, why will anybody else?

My last writing proved very cathartic for me.  The numbness of the American election is beginning to wear off and the reality is settling in.  As a life long activist I spent almost three weeks questioning my purpose while letting doubt seep into the crevices of my mind.  Some of that doubt comes amidst a sudden spike in hate crimes following the American election which is very reminiscent of the 60’s civil rights movement.  This is a huge step backwards and goes unchallenged by the new President-elect who is not speaking out and in many cases actually fanning the flames.  Unfortunately this is not restricted to south of the border.

Canada is experiencing its own explosion of hate attacks so now is not the time for activists to suddenly go quiet.  I have fought many battles over the past 40+ years and my purpose was always that of an advocate.  Lack of purpose can result in the loss of hope and not being one who wants to lose hope it’s time to redefine and refocus my purpose.   I fear scary times ahead with a huge amount of responsibility being handed off to the activists of today which would make my best role that of a mentor.

Sadly, based on my experience of dealing with the new generation of activists, I am not convinced they are truly prepared for the level of activism that will be required to confront the threat we are facing.  A threat to an open and free democracy goes way past battling homelessness or opening food banks.  It requires a strong network of advocates who are watching for the ripple affect of any change that impacts an individuals freedom and safety.  Now my hope is that I can be a good mentor rather than a semi-productive advocate.  It’s time to pass the torch but in a teaching way.  Why re-invent the wheel when the blue prints already exist?

Life long advocates know how insidious the erosion of rights can be.  I spent a good part of the 70’s and 80’s helping to guide legislation and community education on access for all.  However over the years a little regulation change here, another one over there, etc and they begin to add up usually resulting in the loss of a right.  Traditionally you don’t lose rights in Canada but regulations can be created in such a way as to make the application of those rights almost unattainable unless you are prepared to go though the human rights complaint process.

So now is not the time to be silent.  I have spend over 40 years speaking out about injustices in our society.  I have invested a life time into the promotion of human rights for all.  As I matured, the system we know today, was also maturing however many things were becoming unsustainable and people have moved away from “compromise”.

As someone who helped develop this system it’s like losing a piece of my soul every time I see a hard fought for solution ignored or denied.  The history behind the development of human rights, as we know them, has been a long and complicated affair.  It didn’t just happen and I cannot, in good conscience, decide now is the time for me to stop. Continue reading “Moving Forward with Focus”

Pissed Me Off, Again

“A right must exist independently of its exercise,” – Rory O’Shea Was Here (2004)

I usually try to be polite and mature in my writings.  I try to be as factual as I can and hopefully eliminate as much of my own bias as possible.  Then there are days like today where I run across a story that just really pisses me off and I need to RANT.  These types of stories are showing up with increasing frequency and they all have a related theme.

12042646_10156796145460571_1826686942731217207_nOver the years I have watched as “words” have been redefined simply by being used out of context.  The context the word usage derived from may have changed altering the understanding of that word.   Definitions from thirty years ago may no longer be valid and yet we continue to build a legislative framework on those words.  I contributed fifty + years of my life to build an inclusive society and I know what the intent of all that work was.  I can no longer sit here like a “politically correct puppy dog” simply because I may benefit from some of these programs while my history is erased.

RANT – A story came to me today about a mother in Smith Falls, Ontario.  She has been tied up in the Human Rights process fighting for the rights of her son with Down Syndrome.  I have included the link to the story but here’s the long and short of it.  Her son is a 52 year old individual who has lived in the community most of his life.  He receives a certain level of support in the community to sustain his independence.

I am guessing mom is in her seventies so not really the stress she needs in her “retirement years” (for the record for some parents of children with disabilities there is no such thing as retirement).  Plus she was absorbing (and she admits a good bit of financial support from friends) that $1500/month additional cost that the government wouldn’t cover.  The governments own standards stated the son could have a home visit from a nurse four (4) times a day but not the fifth time.

To screw around a family for something as simple as the difference of one visit pisses the hell out of me.  A standard needs to be balanced with intent before being denied.  Behind every standard is a “legislative intent“, people tend to forget that.  A standard is simply a way to provide measurement or activity but intent is a way to adjust for circumstances.  Over the years I have watched as “intent” slowly disappears from decision making.  The intent behind home care for independent living is to allow people to stay in their community and that intent should hold some weight when determining needed hours of support. Continue reading “Pissed Me Off, Again”

A Day at a Time

“A right must exist independently of its exercise,” – Rory O’Shea Was Here (2004)

Throughout my life I have been asked more times than I care to count, “What’s it like living with a disability?” Depending on my mood I would utter some flippant comment or make some kind of feel good statement. To me that question was like me asking someone “What’s it like to live with a big nose?” Or “What’s it like to be fat?” Basically we are who we are.  I grew up with crutches.  I never know anything else. To me, this was normal.

You're a person, not a product
You’re a person, not a product

People are multi-faceted and a disability doesn’t change that.  There were many things that contributed to who or what I am, the disability is only one of that factors.  I believe what shapes us is how we handle events in our lives and what we do with the knowledge we glean from those events. I started off a farm kid and became a poster child. You know, one of those cute little kids that are used to separate you from your money.  Now I’m a pain in the ass life long activist!

The journey begins
The journey begins

I was five years old and one of the first poster children. It didn’t take me long to discover that you had to be more than cute to survive in this world but more about that later. For now let me tell you what it’s like to live with a disability and, hopefully, by the end of this read you can tell me if it is really any different from your own experiences.  This story is about the life of one poster child.

We come into this world with no guarantee except some kind of future.  What that future is will be dictated to by many events but in the end its how we deal with those events that helps shape our future.  Regardless of what anybody tells you we are ultimately responsible for our own futures.  In the end all we have for ourselves is our story.

If one has lived their story can be one of fascination, disbelief and, if one is lucky, inspiration. If one has only existed then the story tends to be pulp fiction. This is my story so you can decide.  Mine began long before the laws of today and I was lucky to have journeyed that developmental highway of todays regulatory system. Continue reading “A Day at a Time”

Providing Detail is Not Attacking

I grew up with a disability in a very different time.  There were no programs, no regulations, etc. there was just you, your family and your community.  There was no socialized medicine, accessible building codes or educational inclusion.  From a societal point of view we were just coming out of that age of “The Secret Garden” created so well in Frances Hodgson Burnett‘s 1911 novel.

Unfortunately my parents didn’t have a British estate fully staffed so I, like many of my polio peers, had to rely on our personal creativity, persistence and flexibility.  If you were lacking in those skills your “Secret Garden” often wound up being an extended care centre at age 19.  If you wanted to live in the world you had to take charge and be creative.  In the 70’s government started regulating access and how the disabled were treated.  Prior to that it was a matter of you did or you didn’t.

When architecture is a barrier, you use that creativity and learn to improvise.  If you couldn’t improvise it is easy to end up in that shadowy area of existing rather than living.  When you are just existing you deprive yourself of experience which is why a $77 a month increase can sound so good to some and completely insulting to others.  Those with the experience are insulted, and should be, but those quietly accepting are just trapped.

What Does Change mean to you?
Change is continual and should never stop

We get trapped because somebody has convinced you that that is the way it is.  My experience has been that just because someone tells you something doesn’t make it so.  Look at some of the issues that have gone on while the average Canadian thought everything was just fine.  In this new world of social media fact checking is imperative.  The recent “detailed” review of the Canadian Disability Pension is a prime example of a bunch of people in positions of authority telling us one thing while the complete opposite is going on.   To quote an old TV show Just the facts Jack. Continue reading “Providing Detail is Not Attacking”

Revictimization

I haven’t posted for a while due to business.  However I can’t use that as an excuse and I can’t put this off any longer.  This week has been extremely aggravating and epitomizes the challenges I have been helping some clients with.

Refuse to remain silent
Silence leads to the erosion of rights. pay attention and speak out!

There has been a lot of news this week on the subject of harassment and abuse.  We have heard about some MP’s who felt they were being harassed in Ottawa and raised the issue “privately”.

I emphasize the word “privately” because I don’t believe this is a subject to be kept locked up in a closet somewhere.  It is my belief that if someone brings an issue like that forward in a very public venue there is a good chance they are quietly asking for help.  The person who was approached was the leader of a national political party, Justin Trudeau.  The people approaching (to date unidentified) were members of a completely different party.

This is not a scenario where you are having coffee with a friend and share a serious concern while asking that friend to “don’t say anything”.  This was two of our national politicians speaking with the leader of a different political party.  In my humble opinion Justin Trudeau did what any responsible person should and confronted the accused.

I also believe he did it in a way that respected the confidentiality of the victims.  Mr. Trudeau never mentioned victim names or party affiliations.  He dealt with with the reported perpetrators of the events.  Since that time the leader of a different party has come forward and introduced the concept of “re-victimization”.  My problem with that, well if our politicians, the people we elect to represent us, don’t feel comfortable coming forward on these issues than what message does that send to every marginalized Canadian out there who has been subject to harassment and intimidation.

When those we elect to protect our rights won’t stand up out of fear of being “re-victimized” why the hell would that single mother trying to support her two kids feel comfortable coming forward when she feels she is being subject to those same workplace behaviours?

A couple of year ago I wrote a training module for the Alberta Human Rights Commission on dealing with the toxic workplace environment.  It is a very difficult and complex issue however the employer is the one in the power position.  Changing the nature of a toxic workplace starts at the bosses desk.  If our nations Parliament has become that toxic that even our elected officials are afraid to step up then what chance does that single mother have?  Personally I am more disgusted with the two victims for not standing up to their abusers.

These are our national representatives and role models.  What kind of role are they modelling?  And for people to now be hiding behind the term “re-victimize” after years of victimizing veterans, then Canada has become a harbour for political hypocrites.

And now we have the situation in Calgary where a former member of the Canadian Forces is facing charges for “plotting to attack a building housing an office of Veterans Affairs“.  I don’t condone this action however if the word “re-victimization” was to be used appropriately, this is the case.  By all reports this gentleman, simply referred to as GG, had been reaching out for help for well over a year and Veterans Affairs just kept putting up more barriers.

I find it ironic that while our Prime Minister is reportedly confronting the Chinese government regarding human rights issues we have MP’s who won’t stand up for their own human rights and services that are stripping the human rights of our veterans away.  And all of this with less than a week from Remembrance Day.  Think about that when you put on your poppy this year!

Just one man’s opinion!