Reliving the “Dream”…Access

“A wise man can learn more from a foolish question than a fool can learn from a wise answer” – Bruce Lee

Well let’s start off with the good news of the week.  The new BC government is re-instating the BC Human Rights “Commission” and it is about dam time.  The Liberals closed it down in 2002 leaving BC, a province that in the 70’s and 80’s was a beacon of human rights solutions, the only province in the country with no Commission.  The Tribunal process in itself was a discriminatory barrier, I know, I did one.  Having left government from a policy analyst’s position I was familiar with the paperwork required but god help those people that didn’t understand the system or knew how to interpret the process.  Anyway, congratulations Premier Horgan, good start.

Now to the other side of the equation and I am focusing some of this at the new generation of activists, particularly those activists involved with the disabled.  Please, please learn about your topics, don’t let “access” slide because you believe someone or someplace is “trying”.  They’ve been trying nothing but my patience for the past fifteen years.  Every time you, as a young activist, “settle” for a lesser than what should be you trash every right the previous generation helped mold. Continue reading

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The Analysis of an Ad

“We become what we behold.  We shape our tools and then our tools shape us” – Marshall McLuhan

Change of pace for today, I need a break from the world of news, disability and access.  As a political news junkie, tuning out is difficult but metaphorically it is my fentanyl crisis.  Due to the toxic nature of the news these days I need to tune out and just chill.  So today a change but related to my passion in it’s own way.  Let’s see what 60 years of finding distractions has taught me as a person, not an activist.

Baby-boomers were the first generation to grow up in a world of television.  However many of us went the first 4 to 10 years of our life without the distraction of television.  It is important to note here that those are the same years you are in the “imprint phase” of developing the core of your belief system.  The experiences and behaviours you are exposed to will set the stage for your beliefs but how they are applied starts during the “modelling period”.  It was during that modelling period when TV first made its presence known in my life.

This year marks the 60th anniversary of my parents first TV in 1957.  Television was a growing industry and to own one meant you had moved into the growing “middle-class”, historically a new norm in Canada.  It sprouted from the “working class” of the 19th century and the purchase of a television was one measurement that marked middle-class status.  There was a reason for the “keeping up with the Jone’s” saying.  But again I digress and my point was to demonstrate how a quickly a new technology can impact us. Continue reading

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Creeping Acceptance

“The first step towards change is awareness.  The second step is acceptance” – Nathaniel Branden

I took a few days off following Canada Day, in part, to avoid the current heat wave but also to rest the body.  Increased fatigue seems to be the flavour of 2017 and it does take a bit longer these days to reenergize.  The stroll along the ocean walk is very relaxing with gorgeous wild life (from seals to eagles) which is a good way to gather my thoughts and reenergize.

The olfactory action caused by that tinge of salt in the air is natures aroma therapy.  That aroma says home to me which contributes to my renewal.  Needless to say it doesn’t take a lot of encouragement to hang around the water front albeit from the paved walkway (sandy beaches are not designed for wheelchairs).  It is a nice way to spend a sunny afternoon.  The down side are the crowds and the reminder of what I can no longer do like walk on the beach.  When I was still able to walk with my crutches I could go on the beach, put my feet in the water or just lie on the sand.  Can’t do that from a wheelchair.

The other downside is that one cannot wheel from one end of the ocean walk to the other due to poor accessibility planning.  There are a number of spots where it just becomes to tedious or dangerous to try and maneuver safely.  There are a number of spots where you have to either use a stairway or the path is at such an angle it’s dangerous.  I’ve tipped my wheelchair more than once.

Foot bridge in public park

Maffeo Sutton Park, along the Nanaimo Harbour, very steep

One of the minor example is this little pedestrian bridge which comes no where near to meeting accessibility code.  To make it to the top, not a long way but a steep way, I have to do a good run at it to crest the bridge.  It is as much about gained momentum as wheeling strength but that action is predicated on people stepping out of your way during the run.  If I have to stop because some inconsiderate idiot lacks the critical thinking ability of an amoeba to block my ascension then I forfeit my uphill momentum.  That is difficult to accept because there was a point in my life where I would just push through but the strength isn’t there anymore.  Another acceptance issue… Continue reading

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Canada Day 2017 – Embracing Change

“We don’t develop courage by being happy everyday.  We develop it by surviving difficult times and challenging adversity” – Barbara de Angelis

Full body braces 1955

1955 Winnipeg newspaper

What does Canada Day mean to me?  Well according to my mother it is the 64th anniversary of my polio diagnosis and the beginning of the 1953 polio induced summer of silence so to me it is a day of rebirth.  1953 also marked the end of the Korean War resulting in a second round of wounded veterans returning to Canada for rehab.  This was the largest influx of wounded veterans since the end of WW2 and the community was ready.

Programs and supports had been put in place following WW2 to help disabled vets move back into their home communities.  National legislation and regulations were being put in place to assist wounded veterans return to the productive life’s they knew prior to fighting for their country.  These policies and programs would ripple from veterans to the child survivors of the last polio epidemic prior to the vaccine in 1955.

In 1945 the Veterans Rehabilitation Act (Canada’s equivalent to the American GI bill) was introduced in Parliament and became law.  The Family Allowance Act was introduced in 1945, in part, to assist those vets with children but also as an acknowledgement that Canadian values were changing.  Rehabilitation services and supports for wounded vets were available through facilities in larger centres and kept them from returning to the farm.  Between the influx of European war refugees and wounded veterans settling in cities to access services Canada was on the road to leaving an agrarian society and becoming a country of urban dwellers.  The face of Canadian demographics was changing.  The need for national regulations to accommodate the massive urban migrations while acknowledging the universality of Canada became the new rally call of politicians.

This was also before socialized medicine so my family moved to Calgary from Manitoba to access the polio treatment being offered through, what was then, the Red Cross Children’s Hospital.  The next ripple on the growing tide of affordable health care was the introduction of the Hospital and Diagnostic Services Act in 1957.  This was a major step forward in the development  that we, as a society, began to recognize the need for universal healthcare.  This became part of history with the introduction of the Medical Care Act of 1966.  It took twenty years of the ripples created by a variety of legislation aimed at assisting veterans to achieve a universal healthcare system. Continue reading

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A Birthday

“Children are the anchor that holds a mother to life” – Sophocles

90th BirthdayToday, June 15, is my mothers 90th birthday and she is surrounded by family except me.  I am 400 miles away but I am there in spirit.  A couple of my siblings flew out from Ontario and a couple from Alberta however between the nieces, nephews, grandchildren and some great-grand children attending Kelowna means she will be surrounded by love today.

My physical absence is very reflective of our life long relationship.  I have often stated I grew up with thirty mothers due to hospital staff but this is my birth mother, the one who brought me into the world and the mother that pushed a doctor in 1953 to look past the flu into identifying my polio.  This is the mother who carried the weight of my childhood hospitalization with a concern hidden behind a smile and today she turns 90.  Not a bad celebration to be having.

Mom had six kids with one being a polio survivor.  In the 50’s and 60’s six kids kept a person busy.  She always had a garden, made her own bread, did her own canning and pickling but always found time, on Wednesday’s, to come visit me in the hospital.  This was a period in medical history when hospital visitation restriction included parents.  Polio kids were isolated, in part, out of fear of the polio and, in part, to allow life to go on in the hospital.  Parents were allowed to visit Wednesday from 2:30 to 3:30 and Sunday’s from 1:30 to 3:30.  Dad would be working and my siblings would be in school so every Wednesday mom would take the Killarney bus to come and visit so much of our time together was spend with just the two of us.

It was only after I moved to Kelowna in 2012 that mom told me she would never miss a visit because of a guilt she had carried around for most of her life.  It was actually quite dramatic and initially I was a little worried over this “serious talk” we had to have.  She sat me down to tell me the guilt she had carried because it had taken her three weeks before she could come to see me following my initial polio diagnosis.  She was actually “happy to get that off my chest”.  I had never been aware she felt that way so I reassure her no damage had been done and shared my belief regarding the dumping of guilt inducing memories even when they are over 60 years old.  But back to mom’s birthday.

Time was limited so every Wednesday I would go straight from our classrooms to my bedside.  From my bedside, on the 3rd floor, I had an unimpeded view of the walk from the Killarney bus stop on 17th Avenue to the front door of the hospital.  I would sit there, summer or winter, sun or snow and watch my mother trudge up that walk from the bus.  Sunday she would arrive in the car with my dad/siblings.  Siblings weren’t allowed to visit without a pre-arranged authority so for much of my life I was simply that face up in the third floor window which was as close as I got to being part of the family.  The window I am looking through today is called the Internet.

My mother has recently discovered the joy of an iPad and a Facebook account.  I called her this morning on Skype to wish her happy birthday.  Reaching 90, to me, is pretty pivotal and due to the dissociative nature my childhood I try to be a part of as many important moments as I can.  Growing up in a hospital you miss a lot of the important moments of life and those things can be so pivotal role in our emotional development.

Mom has influence my ability to be appreciative, patience, and respect.  She has been a pillar of strength when it comes to over coming her own adversity.  She had her first cancer diagnosis 45 years ago and has had bouts of chemo ever since, the most recent I’m aware of was three years ago.  In 1990, while camping in Saskatchewan, she got up to make the morning coffee and their fifth wheel exploded.  Methane build up in the collection tanks and she wasn’t aware resulting in burns to 80% of her body.  Following three weeks in Saskatoon they got her transferred back to Calgary where she spend three months plus in the burn unit.

In 1998 over a period of two weeks she lost her son-in-law to cancer, the next week it was her brother in Chilliwack (she flew out for the funereal) and within a day of getting back from that service my father succumbed to his cancer.  Mom showed an amazing amount of fortitude in dealing with one crisis after another in a very short period of time, a strength I had never seen before.

LastFamily 1

The last complete family picture

A couple of years following dad’s passing mom decided to move to Kelowna where she has been ever since.  She met a very nice gentleman shortly after moving there and remarried at age 76.  Unfortunately dementia took John but not before ten good years as a couple.

Mom has dealt with a lot in her life and she is still going strong.  I know there were a lot of activities planned for today so I am hoping the Kelowna flooding didn’t interfere with anything.  Mind you 90 candles could require a water down to put out the flames.  Mom I hope you had a great birthday and that you had sufficient time to get in a good visit with all of the out of town visitors.  Happy birthday…

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Six AM

“The major difference between a thing that might go wrong and a thing that cannot possibly go wrong is that when the thing that couldn’t possibly go wrong goes wrong it usually turns out to be impossible to get at and repair” – Douglas Adams

I was awake at 4am this morning which is really unusual for me.  However I was awoken by what felt like a bunch of Smurfs playing tug of war with the distal bicep tendon in both arms.  As an added benefit Papa Smurf was busy applying a cattle prod to the tip of Arm musclesmy little and ring fingers sending sharp currents from my finger tip to the palm of my hand.  This has happened before but never in the middle of the night so after twenty minutes of uncontrollable hand spasms I decided to get up.  That’s a good three hours lost of my usual sleep pattern which has been very good since getting the new bed.

Over the last couple of years I have been getting a better nights sleep in my LazyBoy than my bed so decided it was time for a bed with a recliner function.  This plan was also supported by my doctor who told me it should help with my sleep apnea issues.  One of the community health workers suggested I go to a medical supply house and pick out a hospital bed.  She maintained that would be the easiest even though I was absorbing the total cost.  No programs for this.

Hospital bedIt may be vanity or my own pride but I grew up in a hospital and have no desire to turn my apartment into a hospital unit.  The optics of independence and self-determination are important so I stubbornly hang onto them.  Having something like what is pictured is just the beginning of turning one’s home into a medical unit.  I went to Sleep Country.

I hadn’t been in a Sleep Country in years and had forgotten how they configure their showroom.  When all of your floor stock is arranged with about a foot between each mattress or frame there is no room to pull a wheelchair up so you can lie on it to see how it feels.  Kind of like buying a new car, they don’t have hand controls so you buy with no test drive.  The same with beds.  You can’t get beside it so you can’t lie on it until it is in my home.  For that reason I get pretty concise on measurements, etc.

I had a 16″ pillow top queen size mattress on a 7″ box spring lying on the floor of my bedroom.  That gave me a total height of 23″ which worked well.  I can’t get undressed or dressed in my wheelchair so I park by the foot of my bed, get out of my chair, undress and then knee it over to the bed and jump in.  I did a few calculations and measurements to realize I could go as high as 30″ without too much difficulty.  Going over 30″ makes that jump from my knees up onto the bed much more difficult with a higher risk factor.  I’m planning for the future so I don’t want things to be more difficult, say, three years from now.

As I said I did all of the measurements and by the time you eliminate the boxspring I would need an electric bed frame that was no more 15″ off the ground.  I even went back to the store with tape measure in hand and all the measurements from home.  The bed I was looking at would need 7″ cut off the legs (which would still leave room under the frame for the tilt function to work).  What was delivered was way beyond that and after a week of back and forth I finally have what I paid for.  That was after taking in a video.

I can live with that.  The store worked with me to make things work.  What really twisted my underwear into a knot was an Island Health workers refusal to hold my camera phone while I made this little video.  I wanted to get a video of me getting out of my chair and moving around the bed.  Not a difficult thing to do except the home care worker didn’t want to get “caught up in controversy” and refused to hold my camera-phone.  It’s pretty straight forward and I assured her no one would know who was holding the camera plus she didn’t have to say a word so no way to identify her. Continue reading

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Adapting to Change

“Inside myself is a place where I live all alone and that is where I renew my springs that never dry up.” –  Pearl S. Buck 

I have lost my direction and with that my purpose.  Purpose has always been important to me and without it one can easily become selfdeprecation.  I am finding myself looking at things I use to enjoy, like nature, but all I see is how I can no longer participate in the enjoyment.  Rather than marvel at the beauty of the forest, delight in the vibrancy of nature or close my eyes to recall that wonderful aroma of the composting cedar creating new life, I see my life’s work for equal access rotting.

I no longer see a beach where many pleasant moments were spend in quiet retrospect filled with ocean smells and the quiet gentle lapping of the water on the shore.  I see a landscape I have to look at from some sidewalk seat (worse yet from the front seat of my car in the parking lot) while others enjoy walking hand in hand or with their dogs leash in hand happily enveloped in the solitude of the moment.

Better not bitterI have spend the last month putting a lot of thought into this.  I have always been a “glass half full” kind of guy but find myself quietly and over time becoming more of a “glass half empty” thinker and I was not raised that way.  I remember an impactful article by Edgar Cayce where he spoke of how challenges help define our character.  That challenges were there to make us better, not bitter and I find myself crossing that bitter line more often these days than I like to admit.  I think social isolation does that to you.  I don’t like being bitter so it is time I started weeding my own garden and eliminate those weeds that are over-taking my purpose.

The only person who can nurture that purpose is me.  Making other people my purpose has become a recipe for stagnation.  Stagnation is a form of defeat that slowly eats away at one’s confidence.  I have never been one to recognize defeat so it is time for naval gazing and stumbling around like a drunken Brit in a heavy fog to end.  Only I can do that…

Picture

Winnipeg 1955 March of Dimes Timmy with dad beaming behind me…

I successfully survived polio as a three year old and that has to count for something, many of my peers didn’t.  The picture (with my father behind me) was taken in 1955 at a Winnipeg March of Dimes fund raiser.  The foundation of my commitment to activism was built on the attention gained as a poster child.  For most of my life my purpose had been the advancement of access, not only to buildings but to attitude as well.  I am not my disability, my disability is part of me but it is not me and I have to convince people of that everyday.  It can be difficult to stay positive when so much I have fought for is being eroded today. Continue reading

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