Public Safety over Fiscal Responsibility isn’t Really Responsible

Home is where the heart is, home is where believe we are safe” – Terry Wiens (2019)

I love Calgary. Calgary is my home. I’ve left it many times, sometimes for career purposes and a few times just to go on a crazy adventure. However every time I leave I eventually find myself returning. And each time I return I see new cracks and fissure taking place in the fabric of what Calgary was. I am slowly coming to the realization that the Calgary I loved may not exist anymore. The question I keep asking myself is “Can it be turned around?”. Can it continue to grow while maintaining that vibrant sense of community which is what I have always loved about Calgary, that sense of community.

Turning on the lights 1953

I still have childhood memories of family picnics and romping through the wading pool at Riley park. Or the annual employees picnic and BBQ held yearly at Bowness Park. All of the adults gathered around the picnic shelters, men playing games like horseshoe while mothers kept the younger kids entertained (no electronics back then) and the older kids swam or canoed around the lagoon. No fecal issues then.

It was a very different City then and civic pride was strong. The City was more united while being determined to grew and prosper. The urban sprawl began and Calgary has been prospering for the past sixty years. Sure there have been a few up’s and down’s, every City has those periods but Calgary, overall, has done very well for itself. That’s what keeps me coming back.

What does concern me is that every time I return there appears to be a new fracture. I think you have to have been gone every now and then to notice, you see things differently when you are looking through refreshed eyes. A lot of that change occurs, in part, due to regulatory change. To really understand that one has to know the history of regulatory change, like the downloading of jurisdictional responsibilities.

A lot of this began in the late 80’s (a period I refer to as the dawning of the age of regulations ending the “Age of Aquarius“) and into the 90’s. The various levels of government used “fiscal management” as a way to dump the responsibility that goes with regulations. As an example the federal government couldn’t keep up with the cost of rising health care. In an attempt to maintain the “universality” guaranteed in the Charter they adjusted the federal transfer payments system. This meant giving provincial jurisdictions the authority to decide how healthcare could be administered and what would be covered. From that simple adjustment the concept of treatment by postal code was born. Many disabilities were treated differently based on what province you were in.

The ripple effect of this resulted in the provinces, as their own way to avoid costs, to begin downloading to the municipal level. It was only in the mid 90’s that the Ministry of Municipal Affairs got out of the inspection business. The inspections that use to be provided by the province were either transferred to local government or, in some cases, created “inspection authorities”, a form of privatization. What local government didn’t factor in was the cost of that “responsibility” which is why, in part, we are seeing such an erosion to our infrastructure. A number of those programs are now being reversed, an example of that is returning driver licence testing back to government from the private sector.

Now, in any attempt to cut cost, municipal governments are abandoning the responsibility of inspection services. I live in the Beltline and all you have to do is walk around the pathways to see how much deterioration has gone on. Without regular inspection erosion just gets worse. Being wheelchair dependent a well maintain walkway is important to me. All it takes is a small crack to come to an unexpected screeching halt and do an airborne out of a wheelchair if you are not paying attention.

I spend a week in the Rockyview Hospital this past February as a result of one of those wheelchair flying patterns due to a poorly maintained curb-cut. The City’s response (cut and pasted from the e-mail) “We were able to mill the road on the NE corner of 14th Ave and 7th St SW on Tuesday. However, after reviewing the location and the wheel chair ramp it needs more attention than what I was able to provide. I have forwarded this location to our Construction department and they have said they will look at it and will do their best to have the grade redone in the 2019 construction season so that the wheel chair ramp is not so steep.” Even the City’s Central District Manager, Roads Maintenance has no idea how bad the walkways are in the Beltline.

I have over 70 e-mails that I have send to the City describing or supplying pictures/videos of unmaintained sidewalks. We are paying the price for the City’s inability to inspect or maintain road safety in a very high density community. Meanwhile I pay the price with my body but most recently a major setback for my wheelchair.

Lightweight Titanium wheelchair

Now I’m facing a $6000 cost to replace a bend frame due to a pothole the size of a small volcano. This was during Stampede week and I was left on my ass with a bag of groceries strewn around me. Thanks to the kindness of strangers who helped me back into my chair and helped me rearrange my groceries things got resolved. I took the video, send it to the City and, on the trip home, realized my frame was bend. When all four wheels are no longer touching the ground you know something has happened to your chair (and my chair is Titanium so it doesn’t bend easily),

Calgary is subject to some pretty intense rain falls and small lakes are not uncommon around curbs. Had of that been the case here it wouldn’t have mattered if you were in a wheelchair or walking, you would have toppled.

As I have mentioned numerous times, I love Calgary so I can live with this. I contact the City regularly reporting bad walkway situations. I do that believing I am being a responsible citizen and trying to do my part to make Calgary the best City it can be. It would be nice if my elected Ward rep would return one of my notes but that never happens. Doesn’t matter, let’s just get the repairs done.

But this latest has pushed me beyond my limits. It is very personal to me and the City’s lack of regular inspections has the potential to create issues for many of our kids. When the City allows the public splash pool on Olympic Square to get to the point where the health authority makes them shut if down due to dangerous levels of fecal matter, that’s my limit.

As a polio survivor it’s personal to me because the polio virus lives in fecal matter. We are living in a time when people are avoiding vaccines, where international visitors are coming from countries that have NOT totally eliminated polio and the virus can live for a long time in a persons gut. How long do you have to go to get to a point where the coliform count can get that high. Calgary, I love you but you still have a level of responsibility to maintain. If the level of fecal matter can get to 7 times the acceptable level you have failed. There are budget cuts but that doesn’t justify increasing the level of danger that threatens our kids.

Colour me pissed off…

Burning Through Tax Dollars

“It is worth our passions as it is with fire and water; they are good servants but bad masters” – Aesop’s Fables 1692

I am really upset with this most recent suggestions from our local government to cut $9 million from our fire departments budget. This is no way to manage a progressive city, public safety should never be used as a cost saving measure. I find this particularly upsetting considering it has recently been identified that Calgary owned golf courses have lost over $2 million in the past two years while being subsidized by the City. Now I have no issue with golf or City involvement in assisting recreational facilities success but I do take issue when programs that threaten public safety pay the price for political expediency.

Calgary 1964, 9th Ave before the Tower, Palliser Hotel standing tall

I love Calgary and have spend 40 years of my life here. I have also taken time to live in other cities in all parts of Canada while few of the people I grew up have. They have spend their entire life here and really have no idea just how well off Calgary actually is comparatively speaking.

Many still think of Calgary (or like to) as that sleepy little cowtown of 45 years ago. I don’t. Having left and returned five different time I have observed the difference between sleepy town and thriving metropolitan. It is like those relatives you see every three or four years, you are much more aware of the changes because you haven’t seen them every day. The relatives have so they don’t recognize the change as much, they have been part of the evolution. To me, every time I have returned to Calgary I have noticed the changes and they really have been massive, mainly in a good way

Since returning to Calgary I moved back into the inner city 17 floor condo building I lived in ten years ago. I consider where I live to be a microcosm of the City around me. There use to be a sense of community in this building that just isn’t here anymore. It’s still a nice building (about 30 years old) but the demographics have changed and some of that sense of community has changed. That is something that is reflected in the “city sprawl that has gone on over the past fifty years.

I experienced the effectiveness of the Calgary Fire Service just recently. For the first time since I first lived in this building (now or back in 2009) we had the fire department respond when the alarm went off. The fire department was excellent and arrived very quickly, under five minutes. Unfortunately all of the tools that should have been available to them wasn’t. When the alarm went off (7:50pm) I didn’t really do much, I knew there were suppose to be emergency plans in place and that nature would take its course.

I couldn’t smell smoke and I couldn’t see flame licking away at the building so I just stayed in my recliner. As a retired policy analyst with the BC Office of the Fire Commissioner I know the standard and regulation relatively well. Being in a wheelchair I knew the elevators would lock down so it is always best to just wait in my condo.

The fire department was kept here for almost an hour with the alarm being shut off at 8:45pm. Traditionally, and based on fire regulations, the fire department immediately check the status of the alarm. They then go to a lock box that is suppose to include a “list of vulnerable residence” (in other words people living in the building that wouldn’t be able to use the stairs). If required they will respond to those on the list that may be trapped for any number of reasons in their suite. Basically people like myself who wouldn’t be able to manoeuvre the stairs due to wheelchair or mobility. If the threat wasn’t serious the fire department would shut down their operation and move on to the next call. Traditionally the condo staff person would then check on those on the list to reassure them all was well. That didn’t happen. I discovered the next day there was no list in the lock box and condo management company wasn’t aware of the regulations (which I have now send them copies of).

Last year Council voted to change the fire response time from seven minutes to ten minutes despite the fire chiefs recommendations. Why is public safety threatened whenever we need to reconcile budgets while we subsidize golf courses? I have no issues with supporting community sports or other community programs but I do take issue when funding for public safety is threatened. I find it even more insulting when developers, property managers and condo management companies download their responsibility onto tax payer public safety services.

The first time Calgary burnt

In 1886 Calgary was almost destroyed due to fire and lack of services. This opened the door for written standards and a demand for sandstone buildings. That’s part of our history. Whenever we undo part of our public safety system we move backwards. My message to City Council, we don’t need management by crisis. We need proactive planning, not reactive knee-jerk actions based purely on optics.

Calgary is full of some beautiful old wooden construction. Take a walk through the Inglewood-Ramsey area, as an example. We cannot afford to threaten areas like that as a means to save money. Nine million dollars removed from an already over taxed public service is the crux of my opening quote. We want fire and water as good servants, not masters of disaster. Let’s work as a community and get away from that silo management style. Keep our fire department strong, show out fire fighters and first responders that you have their backs, not their wallets.

Return to Sender

“A lesson learnt and not shared is destined to become a lesson lost on wasted time” – Terry Wiens (2019)

I stopped writing about six weeks ago thinking my publishing days were over. In part because one just gets tired of writing the same thing over and over by finding different words but also in part that most people just weren’t getting the message. For over forty years I have tackled the issue of “access” from every conceivable angle, ramps to curb cuts, alternative formats to audible signage and then a light went on. Access wasn’t the real issue, access was simply a tool.

The real issue lay in building an inclusive community, access was a way to ensure everyone in a community could be part of that community. The disabled activists of the 70’s and 80’s had spend years defining “accessible” as physical. In todays world accessibility is simply one tool to an “inclusive” community that is welcoming to everybody. You can put all the ramps into a library you want but that doesn’t mean it is accessible to someone with a visual disability. So now we have to undo terminology that took thirty years to establish and for me, I’m tired, that is the battle for the new generation. Time to step back and let the next generation take over.

This kind of re-enforces my reasons for stepping back. In the midst of file purging I came across some of articles from my day as a columnist with the Alderlea Magazine. They served as a physical reminder of how long and hard I had been beating this drum while questioning if it was all worth it. As a polio survivor I have dedicated much of my life fighting for disability rights and community inclusion while identifying it as access. I don’t want to get involved with an old process using new language. Words are important but they keep changing. It is difficult to walk away from what had been a big purpose in my life but at some point we all have to accept certain realities.

Historically, for half of my life, I was considered a “non” citizen. Even the right to vote for anyone with a disability was based on the whim of the voting poll manager up to the mid 70’s. There was no Charter in those days so there were no regulatory protections. I could be refused a job interview based purely on me identifying my use of crutches. I could also be refused rental units based purely on my disability so we have made some major moves forward but the world of disability has changed. So it is time to step back.

With that said I have also returned to Calgary to retire in. Calgary has always been my “comfort city” and has always been where I identify as home. So it is nice to be back home. What I find disheartening since my return is how fracture and divisive Calgary has become. I love this city and it tears me up to see how the city is tearing itself apart. So I may stop pushing access (“inclusion”) ands start speaking out on Calgary issues. I want this city, and believe it can be, to get back to the days where it was a city full of people who were proud of Calgary. Right now I am seeing fractured and polarized citizens that want to keep blaming others for issues rather than being part of the solution to keep Calgary the welcoming city it use to be. For now…

Life Long Memories
As I look back down my path of life,
The up’s and downs, rewards and strife,
What have I learnt? I ask my soul,
Was I helpful or was I drool?
Did I do right by all my friends?
Who will gather when my life ends?
Have I left my son a legacy clean?
Have I left him foes, spiteful and mean?
The questions we ask as we move through the years,
Reflections of memories, love, joy, and tears,
Memories that make us what we are today,
The love we have gathered from all those that stay,
The joys of experience of a lifetime abound,
The tears we have shed for those all around,
We are what we do; we are what we’ve made,
Hold onto your memories, let them not fade.

-Terry Wiens May 2006

When Will We Learn, a Life Lesson

” A people without the knowledge of their past history, origin and culture is like a tree without roots” – Marcus Garvey

I must admit this current measles outbreak has me a little concerned. What has me even more concerned is how quickly people forget the past and from what I have observed history seems to get lost after about one generation. Measles had been considered eradicated in North America in 2000 and here we are in 2019 with the largest epidemic since CDC declared it gone. History didn’t begin in 2000 and I have my own life lessons to recall. As a polio survivor (before the vaccine was even heard of) I was a very young child and I have a few very vivid memories which help me keep perspective these days. I want to share one so no kid ever has to go through this again.

Day 1 – The Spinal Tap

It was just a month following my third birthday.  I had been exhibiting signs of the flu for almost ten days and was getting increasingly sicker.  My mom had taken me to the doctor twice and each time been told if was just the flu. I was that little boy and I was three years old. I have very few memories of ever having walked but that day is one of the few.  I had started walking down the hallway between from my bedroom (a bedroom shared with two siblings) to the kitchen.  I was whimpering and telling my mother that I didn’t feel well when I collapsed.  I couldn’t get back up and I felt like crap. That was the last time I ever remember walking without crutches.

This particular day also holds one of the most vivid memories I have involving the early days of my adventures with polio.  My mom came running out of the kitchen to see what the problem was.  My siblings, both younger, were down for their nap.  At that time in my family I had one 6-year-old brother, a younger sister and an even younger brother.  Mom had three of us at that point less than three years old so it was no easy task to run off with a sick child.  My dad was at work. He was a streetcar driver in Winnipeg so one couldn’t just walk off the job.

I don’t know for sure but I suspect my aunt came over to take care of the other kids while my mother took me to the hospital.  She had called our family doctor and made arrangements to meet him at the hospital thereby eliminating the step of having to go through emergency.  After all there was a major polio epidemic happening in Winnipeg in 1953 so there was no sense in playing around with the idea of flu anymore.  I was only one of over 2300 reported cases in Manitoba in 1953.

Bar chart showing number of polio cases per province from 1927 to 1962

Winnipeg can be a very hot city in the summer and this was July 1 so it just compounded my fever. I remember being carried into the hospital hallway and feeling how cool it was compared to outside.  We wound up in some hallway somewhere.  I can still almost smell the antiseptic in the air. I was feverish but the hospital hallway was cool.  The floor was dark forest green linoleum and the walls were dull beige.  There were no windows so the hallways were rather dull and shadowed.  It was mid-afternoon so the lights hadn’t been turned on yet.  It is that same type of optic effect you experience when you drive from a sunny highway into a short tunnel.  It’s not really dark but it is not as bright as it was.  This was kind of nice because I do remember a headache and light sensitivity so the dullness was appreciated.

A nurse in a starched white uniform took me from my mother and carried me down to an examination room.  The nurse had removed my clothes and laid me on the exam table wearing only my underwear.  The exam table had dark brown Naugahyde upholstery and felt cool to my feverish skin.  There was a small table beside it with a silver metal tray on top of it covered with what appeared to be a towel.  I was sobbing more than crying and the nurse was doing her best to keep me calm.  I didn’t know where my mother had gone.  The nurse had also taken my temperature rectally using the thermometers’ that use to have mercury inside them.

When the doctor entered she mumbled a few things to him that were beyond the comprehension of a 3-year-old.  While he removed the cover from the metal tray next to the examination table the nurse unfolded a very starched and stiff green sheet.  It had a nicely stitched open square right in the middle which she positioned over the small of my back.  It really held little interest for me except it was cool to the skin when she placed it over me.  She had also position me so I was facing the wall on my side with my back to the doctor.  I had no idea what was going on but I did keep asking for my mother.

I had no idea what a spinal tap, medically known as a lumbar puncture, was or even that it was about to happen.  I do remember how cool it felt when the doctor used a gauze strip to wipe a red antiseptic over the lower part of my spine.  I later discovered it was called Mercurochrome and I would see a lot of that red stain in the next fifteen years.  At the time it just felt good because it was cool and I was quite feverish. I wasn’t quite sure why at that moment and I probably didn’t really give it much thought however the nurse leaned over, pushing her body against my upper torso, pinning me to the examination table and just started telling me to relax.  In that instant it felt like someone had driven a railroad spike into the small of my back.  I’m not sure what a railroad spike would really feel like but this pain just took me out of this world and into a realm I would wish on no one.  I screamed!

A picture of a large bore spinal syringe needle
1953 Large bore spinal tap needle

This was 1953.  The idea of flexible needles was still sometime in the future.  These were still the day where nurses carried little files and sharpened their needles.  All I know was that I had just been stabbed in the back with the equivalent of a railroad spike.  It probably didn’t last as long as I though however in my mind it went on forever while the nurse kept me from squirming with her body weight.  They had to drain as much spinal fluid as possible in order to get as much as the virus as they could.

I know my mother still talks about how she could hear me screaming from her seat at the other end of the hall.  She was in tears and there was nothing she could do about it.  I never did make it home that day while the person that had been never left that table.  I now mark July 1 as the birthday of the person I am today.  The person who was born May 31, 1950 ceased to be on that table.  Polio does that.

In closing this segment, no child should have to go through these things when a simple vaccination could help avoid. In 2017 the World Health Organization reported 110,000 deaths of children internationally due to measles. After a 20 year absence in North America how many deaths become acceptable because people have forgotten their history.

As usual if you liked what you read or found this to be a worthwhile life lesson then feel free to hit the donate button on the sidebar. Donations buy more food than dignity does and when it comes to my life lessons dignity is nice but it doesn’t pay the bills. Have a good one and please don’t ever underestimate your history…

Classifications and Coding

“A man should never be ashamed to own that he has been in the wrong, which is but saying in other words that he is wiser today than he was yesterday.” ― Alexander Pope

I had been invited to be the keynote speaker at a conference this past Friday being put on by the March of Dimes. The theme of the conference was “Opening Doors for Accessibility”. Having been a polio posterchild for the March of Dimes when I was five and having spend most of my life as an advocate for access I could hardly say no. As Friday arrived I was quite looking forward to the day due, in large part, because of a hell of a week.

I had spend 17 hours last week preparing documents for three different Alberta government departments to help them adjust my “coding” so they could establish where I fit in their “classification” systems. Three reports for three departments to prove I was actually a senior with a disability. Now this may sound a little picky but I get a little tired, after 65 years, of still having to “prove” I’m disabled. I hate that term “disabled” because it has become quite consuming. There’s a world of distance between a person with a disability and individuals with “special or complex” needs.

Unfortunately we have a health system that now relies on coding and classifications so they can group services. The individual has become redundant. It’s your classification or coding that counts, not your individualism. As an example you can take a look at the Alberta Health Services “Alberta Coding Access Targets for Surgery (ACATS)“. They work from a number and not an individual.

That was one report, not for surgery but for service. I live independently and like anyone who ages there are certain things that become more difficult with aging. There are some things, like light housekeeping, that are harder to do from a wheelchair. For example washing floors, it is impossible to not leave tire marks all over your floor after washing it. You can’t step over the wet spots. So it was suggested, and I did, apply for some light housekeeping through the “Better Off at Home” program (I say facetiously). Paying $120 a month for two visits gets costly when your income is fixed and there are certain costs (like rent) that you can’t avoid. Accessible basement suites are not that available so you pay the going rent for something that comes close to accessible.

It turns out, based on my “coding”, that to access two hours of light house keeping per month I need to be in receipt of homecare services. What are home care services you ask (I did)? Well the closest we could get to “home care” was having somebody come by every morning at 8AM to “help” me get out of bed and dressed. Things I do on my own but to qualify for that two hours of light housekeeping I also had to accept the morning care. Since these caregivers are not allowed to lift (part of the agreement) they would arrive every morning, stand there and watch me get out of bed, get dressed then get into my wheelchair. Not a lot of dignity in that scenario but dignity is not a quantifiable concept so it doesn’t enter into the equation.

Plus I had to have a keypad door handle lever installed so they could have a code to access my apartment in the morning to “help”. The timing of their arrival was arbitrary but set for roughly 8AM. Now I am often up by six AM working away on my computer so on numerous occasions I had a few aides show up and basically admonish me for not having waited for them, that it was their responsibility to help me get out of bed. I dealt with that quickly.

Now I know there are many people who need this assistance, I am not one of them. It bothered me not only ethically but fiscally as well that I was taking a service from someone else. Why should I be using 10 hours of tax dollars services every four weeks I didn’t need so I could qualify for the two hours of service I could use? Other people need it more but there are no codes for that. The concept of “individualized care” is just a term and, again, not quantifiable. However as a retired policy analyst I had a pretty good idea what they would be looking for but there were no codes for that. Sorry the sum of all of my parts are more than a set of numbers, service cancelled and back to my own thinning wallet.

That brought me to the next set of documentation, Alberta Seniors and Housing. They supply “low income” seniors with some rental assistance and for me that’s a whopping $72/month. I had already had a long discussion with one of their “service assistance” who was quite capable of reading the manual but didn’t seem to be strong on the critical-thinking side of things. She kept coming back to why I didn’t find a “affordable basement suite”. I kept repeating what part of wheelchair accessible do you not get. To live independently in a wheelchair brings additional costs. Plus I invested almost $8200 to have the bathroom in a condo I don’t own renovated to accommodate a wheelchair, don’t even get me started on the kitchen. Anyway I now have a five year fixed lease and don’t plan on moving anywhere in the near future.

Statistically about 30% of a disabled persons income living independently goes to disability related costs. Anyway the long and short of that was to submit a financial report (including my income tax return, something the province already gets) and they could determine if there were any other “codes or classifications” that may be applicable.

One of my personal conditions upon retiring was to ensure I was debt free, had no credit cards and nothing owning on my car. I have had the same vehicle for 13 years and it still runs like a dream. I don’t drive a lot, which is why I like the Beltline, everything is close so I use my car sparingly. Thirteen years and I have less than 95,000KM on my car. There is a sense of comfort with an added dignity it adds to my feeling of independence with my vehicle so I keep it. Last year required some major upkeep (new tires, brakes, etc) so I withdrew $4000 from my Lifetime Retirement Fund. Sadly that withdrawal put me $3000 over the Ministry’s poverty level and there are no reclassification codes that can change that so I now kiss that minimal rent subsidy goodbye until same time next year.

The third front was with Alberta Blue Cross for Seniors. I take about $300 a month in prescriptions. Some of that is pain meds. Polio, and other long term physically disabled individuals, will ravage ones body. We have body parts working overtime to make up for the inadequacy for others.

One of my main issues, and the reason I am now wheelchair dependent, is worn out shoulders. Shoulders were never meant to be a weight bearing joint but they didn’t understand the physics of that 40 years ago. Some of those things eventually wear out, shoulders being one of them. Mine started to deteriorated in the mid 80’s and by 1996 I was totally wheelchair dependent. You can only have so many rotator cuff repairs before that is no longer an option so they are now beyond repair. It becomes a vicious circle where not enough use and they become weaker, too much use and they tear even more leaving you weaker. I’ve been discovering recently it is even difficult to lift my good cast iron frying pan but it is nicely seasoned so I won’t give it up.

That also means you live with a lot of discomfort. I frame in my mind as discomfort because I believe that once you start calling it “pain” it takes over. I worked as a pain/stress therapist for almost three years at the Holy Cross Hospital so I have some actual therapeutic substance in that. So between meditation, balanced activities and drugs I maintain a level of quality I can live with.

For the last ten years I have managed my discomfort with a slow release long acting codeine. Moving back to Calgary and going on the Alberta Blue Cross Medical plan for Seniors helped cut the monthly prescription costs by about $250. However they would not cover the cost of the the Codeine Contin using opioid crisis as the reason. They didn’t want to run the risk of “feeding an addiction” but, if I were agreeable, they would fund a different drug called Hydromorphone, an even heavier narcotic. Now what I am doing has worked for ten years so I declined and would pay the price myself but not first without appealing it. So, again, I had to put all of my paperwork together, present my argument to Blue Cross, won my case and they now fund the prescription as long as my doctor issues an annual “letter of dispensation”.

When given the options of “possibility” being an addict or a functional human being living with some dignity, I will go with the dignity every time. I get tired of this medical argument over addiction versus quality. It is a very weak argument but again my coverage “coding” doesn’t allow for individual needs. Coding and labels win every time until you interject yourself into it and become a person to them. This means contact. Once you are across the desk from them you are real, not just a codified file system.

So my point of all of this rambling is that despite the polio the real disability is the system and the hard work one has to put into it to be independent. This brings me back to where I started, the conference. I am very lucky in having the where with all to be my own advocate. We group all kinds of disorders under one “disability” umbrella and code rom there. This type of statement doesn’t make me popular with other members of the community living with some type of condition but there is a wide chasm between being disabled and having special needs. As I scanned those consumers in attendance at the conference I realized so many of them had no idea what was available to them.

They are a commodity or product for the health industry. They are job creators for community support workers and government funded agencies. I had attended that conference hoping to expand the concept of community partnering with the business sectors of the city. I don’t think I did that. As I was speaking I was reviewing in my mind (I’m a hardcore Gemini and need to be mentally multitasking) all of the detail I had tackled over the four days leading up to Friday. A voice in the back of my mind was questioning how many of the consumers at this conference would be able to be their own advocate. The answer was very limiting. You can’t fight for something if you don’t know it exists. There is very little incentive to be truly independent unless you know the codes or classifications.

Ending on a high note I did secure a short term contract on Saturday afternoon that will at least cover my housekeeping costs for the next six months. Life is based on one step at a time, independence is based on knowledge of what is. Tiger Woods taught us that today. He faced his adversity and as Alexander Pope’s quote above said, Tiger came away a wiser person for it by capturing his first Masters since 2005. My preference is knowledge but I also accept how it can alienate you from those that take so much for granted.

Thanks for listening and if you really like there is a donation button in the right hand side panel. More to come…

Syphoning Hope

“When I was young my ambition was to be one of the people who made a difference in this world.  My hope is to leave the world a little better for having been there” – Jim Henson

I think most people are born with a certain amount of hope. I believe I was born with about a clay jug full of hope and sipped a lot of it in my 20’s, 30’s and 40’s.  I took the occasional swig of hope from the wine skin as I marched in anti-Vietnam protests, I took deeper draughts of it as I fought for equal rights and a level playing field for marginalized individuals. As a person with a disability I drank flagons of it throughout my life relying on it to create a more fair and just society.

Lately though I have been hearing a lot from my network of access advocated and those involved in disability activism.  Hope seems to be waning and that isn’t a good sign.  Effective advocacy is based on the presence of “hope”.  We all live with the hope that those making the decisions that affect our day to day life will do it based on integrity and fairness.  Unfortunately this Kavanaugh debacle south of the border has taken the winds of hope out of a lot of activists sails.

Kavanaugh’s track record on Obama Care is not great and he is now in the position of striking down the section that protects every American with a preexisting condition.   In other words if you have a medical condition related to your diabetes, you have a preexisting condition.  If you are a polio survivor now experiencing post polio syndrome, you have a preexisting condition.  If you have secondary issues to a cardiac issue you have a preexisting conditions.  Getting the gist here, changing this one stipulation could affect millions of Americans living with a disability.  Hope can be hard to hold on to when it appears the whole system is rigged against you.Continue reading “Syphoning Hope”

The Building Blocks of Youth

“To take children seriously is to value them for who they are right now rather than adults-in-the-making.” ~ Alfie Kohn

We all like to see our kids enjoying themselves.  We all want to protect our kids however there is a big difference between “protecting” and “hiding” them from the realities of the world.  Too many parents have little understanding of the subliminal learning that is continual in that time of our life.  What looks like fun and games forms the foundation of future belief systems.  This is why we cannot underestimate the importance of what we role model to our children while maintaining, at least, a modicum of understanding of what they are being exposed to.  They are our future who will be the accelerants of change.

My childhood, in retrospect, was anything but normal.  To me it was normal (hate that word) but by societal standards it wasn’t.  The foundational pillars of my belief system were developed in an institution.  It was an era when hospitals offered polio kids the best chance to thrive.  The communities of the 50’s and 60’s were not designed for inclusion and access.  There were no programs, policies or regulations that demanded community supports so hospital life was my norm.

Bedrest with leg and back splints with head immobilized to maintain neck strength
Stretching tendons and strengthening neck muscles by maintaining head position (circa 1955)

Hospitals provided polio survivors healthcare, education and an active social life, something not available in the general population of the time.  At four years old I was encased in enough metal bracing to qualify me as a “knight of the realm”.  The technology of the day resulted in that equipment weighing more than I did.

By age sixteen I had spend eights years in a hospital, had over a dozen surgeries, completed ten years of schooling, had been a cub, scout, etc and had a very active peer-based social life.  By sixteen the only equipment I was using was a pair of crutches while having achieved my dream to wear tight blue jeans.  My needs were much simpler back then so the foundations of my belief system were developed based on experiences gained in a hospital.

Growing up in a hospital provides a very different perspective on life.  We were the petrie dishes for advancements in healthcare and technology.  We were excellent test subjects for the modernization of healthcare.  And technology (medical or otherwise), as we now know it today, was the substance of sci-fi books.  TV was a relatively new technology and a limited luxury in the hospital which meant one communal TV with limited access time.  We were experiments and I mean that in a good way.

Our mental stimulus came from books, comics, talk, imagination and each other. With the amount of time you spend in bed (classrooms were often half beds and half wheelchairs) you had a lot of time for reading.  We learnt by talking, questioning and reading.  The last two were very important because, as polio survivors, we had to be adaptable and open to adaptive solutions to potential barriers.  We were learning to be our own advocates without even realizing it.

I understood, early in life, that adaptability and compromise were essential while not even knowing what the words meant.  They were part of my belief foundations minus my self-awareness.  Our access to books was like living in a library, anything we wanted to read was made available to us.  By the time I was ten I was in love with anything focused on philosophy, communication or science fiction.  They often melted and, as Proust would say, “I was seeing with new eyes”.  My perception of the world was very different from that of my siblings.  Growing up as a polio kid at the height of the social change movement of the 50’s and 60’s made for some very impactful life lessons, I just didn’t realize it at the time.Continue reading “The Building Blocks of Youth”

The Road Forward, The Path Behind

“One can talk good and shower down roses, but it’s the receiver who has to walk through the thorns, and all its false expectations” – Anthony Liccione 

I just read an article by a Chris Lenart describing the involvement of fathers in the lives of their disabled child.  I don’t know Chris personally and there is a 20 year difference (basically one generation) between us.  That is important to note because it does make a difference on perception and parental involvement.  I read his article through the lens of my own background.  Initially I was a little pissed off until I put it into a generational perspective.

I wasn’t upset with the focus of the article but my hackles do go up when I perceive more emphasis on “dis” than “ability”.  I didn’t grow up as a “disabled child” but I did grow up as a child with a disability.  My polio created some physical challenges but my disability was created by those around me, society.  I live by the philosophy that “my disability doesn’t define me, I define my disability”.  I have a life time of anecdotal evidence showing societies attitude defines disability.

My disability makes up about 20% of who I am but impacts a 100% of a persons initial exposure to me.  The 80% defined by my ability means I have to work a little harder to get that first impression a workable relationship.  How I present myself will be based on how well I am able to demonstrate my abilities to move past the “dis”.

I grew up in a time where institutional living was the norm.  Polio kids were hospitalize (some call it institutional) for numerous reasons.  Schools nor communities were accessible.  Medicine was no where near where it is today and seldom was the term “healthcare” even used.  There were few, if any, family support programs in the early baby-boomer days with surgical procedures being the primary treatment of the time.  This made institutional living easier for everyone.  Hospitals became households and your family were the other polio kids.  Growing up in that environment the emphasis was always on ability and we were encouraged to be self-sufficient individuals.

In today’s society there is a stigma attached to the “institutional” approach (which I can understand) however it allowed me a lot of opportunity in a generation where I would have otherwise missed out on so much.  Things like basic education, treatment or inclusive involvement in my community.  We didn’t all have “The Secret Garden” resources so the hospital became a community.

For the majority of my childhood my parents were nurses and the hospital was my home.  This was a generation when parents had little involvement in the medical aspects of their child’s life.  Parents had limited visitation opportunities, Wednesday after school for one hour (3:30 to 4:30pm) and again on Sunday for an 1.5 hours, siblings even less.  Between school, surgeries, various therapies (physio, OT, etc), activities like Scouts and Guides, arts and crafts, Friday movie nights, Saturday night teen dances, etc the hospital offered all of us the opportunity for community involvement that wasn’t really available in the mainstream community.

That was a normal life to me.  The traditional foundations of the basic developmental milestones and cognitive advancements that happened in any child’s life were established in that environment.  The concept of disability wasn’t there, in our eyes we were all the same.  The focus was on out ability, not a disability. Continue reading “The Road Forward, The Path Behind”

Hodge-Podge and Little Things – Revision

“Eclectic yet classic with a playful bohemian twist is how I would describe my style” – Alice Temperley   

A revision, they happen in life all of the time. In some of my reviewing today I came across a number of articles that I could be presenting today and they would be just as valid. This was one of them but with a twist. First of all, for those who have been paying attention, I did sell my car with very little emotional turmoil. Second, and this is to those overpaid skin sacks in our legislature. Things like “natural disasters” or a major “health crisis” can be thrown at us. It is during events like COVID19 that we learn if what we voted for was right. How well do they manage the crisis? Is it a “political tool” to be wielded as a way to strip rights or is it a challenge to strip the rights of “people”? My life is based on planning and reacting. I can cut down on reacting by including as many scenario’s in my planning as possible. The more I plan for the less I have to react to. Some of the things I plan for will probably never happen but at least I have given them some thought. With that said the biggest changes since I initially tossed this out regarding micro inequities two major changes, no more car and a major health pandemic which, I can tell you from a personal perspective, this province had not planned for.

I will borrow Alice’s quote posted above to kick off this little write up.  It’s five o’clock in the morning and I’ve been awake since 4:30.  It is not uncommon for me to wake up once or twice a night but that is generally to deal with one of those aging things (increased nightly urination bouts) or to reposition from an uncomfortable position.  However I generally get back to sleep quickly.  I am not one to toss and turn for a long time before I get out of bed.  I find it mentally frustrating and that is what was happening tonight.

The sky is still dark and one of the things about living 3500 feet above sea level is longer sun days.  Usually, this time of year morning light comes early.  However we are 6 weeks into the summer solstice and have begun the slow crawl towards the fall equinox so later sun rises can be expected.  I’ve been up almost an hour and the blue is (actually a little grey) just starting to appear in the sky.  May be an overcast day, I haven’t checked the weather yet.

Two potential culprits to be awake this early: 1. my chronophysiology needs adjusting or 2. the tautness of my shoulders are at a level of discomfort that is counterproductive to restful sleep.  Years ago, when I was doing some sleep therapy, I often had to explain chronophysiology to my patients and how it impacted their circadian rhythm.

This changes as we age and often we have to adjust our body clock.  It’s like a personal leap year, adding an extra day to realign time.  Very few people function on the traditional 24 hour clock we are so use to.  Some are on an 18 or 20 hour system, others a 22 hour system but very few people actually have a body clock that matches up to our traditional concept of a 24 hour day.  Every now and then we have to reset that clock which may mean a change in sleeping patterns for a night or two.  Just a scientific tidbit however I don’t want to bore you with science so lets to get to the meat of my early morning tirade. It is now 6AM and the sky is bright enough that I could probably turn off my computer desk lamp if I wanted but I might still stumble on the keyboard so I’ll keep it on.

The second options is my shoulders.  The rotator cuffs in my shoulders are so shredded from years of misuse that I almost have Popeye arms.  I have tendons that are bunched up more around my elbows and forearms than my shoulders.  I notice this more when I have a lot of running around to do and have to transfer my wheelchair in and out of my car repeatedly.  The video below should help you understand what I mean by transferring my wheelchair into my car and the impact on, primarily, my left shoulder.

The parents of a 19 year old wheelchair user had asked me if I could teach their son how to go about learning techniques so he could get his drivers licence (another small thing, try and find a driving program that has hand-controlled cars).  So I had a friend help me make a short YouTube video on one way to load your chair into your car (I don’t use a transfer board).  The more things we learn to do for ourselves the less dependent we are on others.  However the more transfers I make into my car the more my shoulder reacts.  That is the one this morning with shoulders/arms very taunt and feeling like what I imagine an out of tune piano chord would feel like. Continue reading “Hodge-Podge and Little Things – Revision”

Chapter 1 – Part 2, The Foundation

Let It Come
Lying alone in your solitary bed,
The arrival of death you do not dread,
You’ve lived a different but confusing life,
Accepting pleasure and the occasional strife,
And had such joy with your now dead wife.

You are alone and feeling ready,
Your soul is clean and your mind is steady,
You have behind you so many years,
Death does nothing to raise your fears,
For your passing on there will be tears.

Those who love know it’s time,
Awaiting fate to ring its chime,
So let the Reaper creep down the hall,
You have no fear of him at all,
From life’s sweet breast you now must fall.

Terry Wiens – March 2005

I began this chapter with what I consider to be my introduction to the outside world based on my first personal experience to the Calgary Stampede at age 12.  That age was really my coming out in the world.  Prior to that my existence had mainly been in a protected medical environment focused on physical development with little thought to cognitive development.  All of those developmental milestones we have come to understand following the introduction of Dr. Spock (and for the trekkie fans this is Dr. Spock, not Mr. Spock) theory’s of childhood development were unintentionally nurtured in a garden tended by nurses.

I raise this due to the fact that the blossoming of my limbic system took place in a very control environment, an institution for polio survivors known as the Alberta Children’s Hospital.  My adolescent years, that period in your development where logic and respect for consequences, are based on the recognition of risk factors took place in a protected environment.  I never had to look at risk factors since they were managed by others.  Something as simple as teaching your child not to bolt across the street before looking both ways was, in fact, introducing risk management concepts to the foundations of belief.  These were seeds never planted in a hospital environment.

My adventures as a twelve year old was like taking a newly opened flower from the greenhouse then dumping it in the wilds to let nature have its way.  You went from nurture to nature quickly with a very distorted concept of risk.  Risk, for me, was epitomized by a surgical suite, not a behavioural action.  I had no concept of personal risk formed by childhood memories.  My understanding of risk came much later in life based on action and consequences.

That brings me to the second concept I wanted to discuss today, memories.  Needless to say growing up in a hospital memories take on a very different look.  I recently read a study regarding early memories and what they are calling “childhood amnesia“.  I can relate to that due to the large holes of time I have in my own memory banks.  I also differentiate between childhood “realizations” and memories.  To me a memory is something that is very clear in my mind and generally triggered by some tactile or olfactory reaction.

A memory is an event.  A realization, on the other hand, is the culmination of a variety of memories that contribute to a belief system.

My one memory of pleasure was as a two year old “walking” through a path of snow higher than I was to get to the outhouse (no indoor plumbing then).  I suspect I hold onto that particular memory because it is the one memory of actually walking before I contracted polio.

I have very few memories of the 1953 move to Winnipeg or much of the four years spend  following that move.  I do have a vivid memory of my spinal tap.  I was just a month past my third birthday.  I can even smell the antiseptic nature of the examination room.  They say memories created by tragedy are the ones we retain the most but also the one’s we tend to modify the most.

I recall how dim and dreary the hospital hallway was despite a warm sunny June day outside.  Olive green was a popular hospital colour back then and those are the colours I remember.  I was put on a rigid wooden examination table padded with the usual Naugahyde covering of the day with cotton stuffing by my mother who was then asked to leave the room.  The nurse, after removing my clothing, brought out a rectangular green, crisp sheet to cover me. It was stiff with starch, cool against the skin and hemmed all the way around with a three by three hemmed square in the middle.

The doctor had laid me on my stomach.  I was crying, in part, because I felt like shit and, in part, because my mother had left the room. I laid there, sobbing, feeling the coolness of this sheet being spread over me. A nurse was holding my hand attempting to comfort me while I stared, through misty vision, at a cold sterile tray holding a large syringe, some gauze and a bottle rubbing alcohol although I had no idea what they were. The crisp sheet was placed over me with the open square over the small of my back and I felt a coldness being rubbed over that area. I saw the doctor’s hand reach for the syringe while he told me to be very still.Continue reading “Chapter 1 – Part 2, The Foundation”