Christmas 2019 – Memories of Christmas Past

My life isn’t a book, it’s a collection of short stories” – Terry Wiens

Christmas, a day of family, friends and memories. It is a day that can be loud, boisterous and full of activity. It can also be a day of quietude, reflective and personal relaxation. I have experienced both and find myself, maybe due to aging, with the preference for quiet reflection and memories of things long time past. As a child I experienced both however most of my memories come from the Children’s Hospital.

A black and white picture of me at age 7 with my dad behind while Santa presents a gift during the Calgary Transits Annual family Christmas party
Calgary Transit Family Christmas party, my dad behind me, I’m 7 and getting a gift from Santa

Growing up with polio I spend 8 years in the Children’s Hospital so most of my Christmas memories are hospital related. In the 50’s and 60’s many polio kids grew up there. It was much easier to “collectively” handle the needs of a 100 polio kids in the confines of a hospital than it was to try and integrate into a community not yet familiar with the concept of inclusion. Hospitals were one way to accomplish that.

From 1958 to 1963 all of my Christmas were spend in the hospital. Christmas at home involved my parents, five siblings, an aunt and uncle with their four kids plus my grandmother (a well meaning but cantankerous stroke victim). At the time (I was only 7) I had 40 pounds of braces on me so whenever I got home they came off and I scooted around on my ass. With ten kids running around being hyper, a grandmother balancing on her cane, adults cooking a major turkey supper who really wanted the kids out of the way I felt like the soccer ball dodging the hyper-activity of the future Manchester United team. The hospital became my place of choice for Christmas, it was quiet and nobody was stepping on me. So most of my Christmas memories involved the quiet nature of the hospital.

1959 Black and white picture of the Alberta Children's Hospital with a nurse in the foreground taking a young patient for a walk while a landscaper in the background prepares to lay turf
The Alberta Children’s Hospital 1959 with a student nurse taking someone for a walk while the landscaper began preparing the turf

There were two types of “hospitals” during my childhood. They were residential or institutional and there was a difference. The institutional ones, the Mitchener Centres of the day, were basically long term care facilities. With the exception of sexual sterilization there was little medical practice that went on in there. The social thinking of the political parties of that day was, “why have 20 group homes in the community servicing ten residence at a time when you can have a warehouse style centre and manage a 1000?” No dignity but that really wasn’t relevant at the time. They were part of a sad history that we try to forget except we now have an Alberta political party that are slowly eroding all of the gains made in the last 40 years of the 20th century by recreating policies that were used in the 50’s. I think that is why I find myself revisiting memories of those days. That was three generations ago and we are now surrounded by new generations that see this (if they see it at all) as history that could never happen again. Well to me it is more than history, it is lived experience and if you have been paying attention to the things that the Kenney government has been stripping away, yes we can return to them.

I was in a hospitals that was residential. It was build on the philosophy to accommodate the needs of those individuals who couldn’t quite make it in the general community. Needs like education, socialization, community involvement, programs that were not quite ready for the challenge of inclusion. Kids with conditions like polio. cerebral palsy, Perthes, complex medical issues, issues that required more attention than a general hospital could provide. These hospitals were designed to be a home for the kids that lived there to rehab from surgeries, attend schools and be part of a bigger community. They were isolated, parents could visit twice a week (Wednesday’s for an hour and Sundays for 1.5 hours, siblings only by special arrangement once a month). My “family” was the other polio kids.

These hospitals provided schooling for K to 12 education, daily physio, community (albeit hospital community) activities, scouts, guides, cubs, brownies, arts and crafts night, movie night on Fridays, the occasional teen dance in the Solarium on Saturday evenings, weekly chores (like cleaning up the rubber marks off the linoleum left by screeching wheelchair tires). So we were kept busy and visitors, honestly, got in the way of our activities. Then, of course, there were surgery. I had over a dozen of them and it wasn’t uncommon to have a nurse on one side of your bed shooting you up with morphine while your math teacher was on the other side of the bed giving you your homework for the day. But within two days they would be rolling your bed to the classroom and life went on.

We were ideal the patient type for student nurses (there was a small nursing residence attached), doctors doing their residency in any number of current or emerging specialities (orthopaedics was a big one), the growing field of physiotherapy, rehabilitation medicines, etc. We were practice cases for a modernizing healthcare system. A place to discover healthcare, to try new techniques, an extension of the identified needs of the many returning veterans of WW2. The explosion of polio epidemics that followed the war provided a wonderful opportunity (and patient pool) to try or develop new techniques that had never been recognized before.

The massive post-War migration from the agricultural community to urban living required developing services on much larger scales. We were transitioning from the “little school room on the prairies” along with the visiting family doctors to a society that required services (like education) on a much larger scale than previously seen. Healthcare was also evolving, pushed in part by the needs of the veterans, and the new society was beginning to see enormous gains in infant mortality rates and huge steps forward in life expectancy. There were trade offs but we would see those in later generations. As someone who has run the gamut with polio I see more of those trades off now so the memories that keep coming back often catch me by surprise until I delve into them.

Many of these memories had laid dormant for years, if not generations. Most of them I thought I had dealt with and they were behind me. Oh how naive that was. My generation didn’t pay much attention to was the milestones of “cognitive development“. Of all of the services provided at the Children’s Hospital, social work and psychology never arrived until the mid 70’s. Prior to that “issues of crisis” were just buried. I build my belief system on shallow ground without even realizing it. The teaching and philosophies of Dr. Benjamin Spock (no not the Star Trek guy) never really hit the mainstream until the 60’s so developmental milestones were never a focus in polio survivors.

I raised the last point for a reason. So it is that the ghost of a Christmas past has been fermenting in the cauldron of memories leading up to today. In my hospital Christmas days (no technology, etc back then) I would receive lots of books, games, puzzled, models and boxes of little things. The hospital would be half empty because many kids were able to make it home for at least the day.

I was eleven and had sort of a younger brother relationship with a 7 year old named David. David was being treated for Perthes and I was like his big brother. David wouldn’t go to sleep at night unless I came by to read him a quick story. When you are 11 years old you don’t really put a lot of thought into this kind of thing. What I didn’t know was that David had also survived a bout of rheumatic fever a couple of years prior which had weakened his heart muscle. David was in a frame from his waist down, standard Perthes treatment, so he wasn’t able to get home either. I had received a copy of the kids book “Old Yeller” for Christmas so I was sitting beside Davids bed reading it to him at about 2 in the afternoon. He had become very quiet while I was reading so I glanced up and know right away what had happened. I reached over for the nurse call bell and pulled the string. There were no intercoms then, just a string that alerted the nursing station that someone needed something and a light that went on outside your room door. I went back to reading until the nurse came in to see what was wrong. I looked up at her and said “I think David died” and went back to my reading. She immediately got things going while she pushed me (I was sitting in a wheelchair) out into the hallway.

I pushed my wheelchair down to the Solarium (a very big room where so many activities went on from movie night to scout meetings) and continued reading “out loud” like he was still listening. That was the way we dealt with those kind of things then. At our age, in those times, we were very concrete in how we saw things. There was no crisis counselling, there was no referral to a social worker but it was a hospital and, like it or not, people die in hospitals. We usually knew during the day because nurses would go down the hallway, ushering everybody into their rooms and then close all the doors. We didn’t have to talk about it, we just knew when the doors opened again there would be an empty bed somewhere.

Kids relate differently. When you go into a Children’s Hospital today and a crisis is happening, the child is generally reacting because a parent is so upset. Nine times out of ten, it’s not the incident that is upsetting the child, it’s mom or dads reaction. I knew as a child who grew up in that environment that my world then was pretty black and white. If somebody passed away (and I lost a few good friends) that was part of the life cycle and the rest of us went on. Anyway that is my Christmas past memories and I would implore any Albertans reading this, don’t let the premier take us back to those days…with the most current steps to curtail education to the disabled and now to introduce barriers to healthcare professionals in regards to “complex needs” patients I would say #SpeakOut before it’s gone

Activist or Advocate?

Advocacy is often seen as working “within the system” whereas activism is seen as working “outside the system” to generate change. I think this is really useful, as clearly the role or issue can shift from one to the other.Author unknown

A meaningful meme basically black and white with the exception of a young child staring down a long hallway wearing the only coloured item in the picture.  The meme reads "There comes a moment when you realize that what you are advocating for is more than just accommodations.  You're really advocating for someones quality of life.  That's the moment you realize that you won't give up"
#SpeakOut, make your voice heard, silence only supports injustices

I have fifty years experience as an activist with another 25 years of advocacy experience built in there. The advocacy was a fight to ensure the successes gained as an activist were maintained. There is a difference between the two. Activists organize, advocates initiate. This difference is lost on a lot of people and it frightens me.

As a polio survivor I grew up in a time where there were not a lot of protections enshrined in any form of policy, regulations or legislation. I grew up in a time when I wasn’t guaranteed an education due to my disability. I grew up in a time when you “warehoused” the disabled in institutions. I grew up in a time where I wasn’t guaranteed a a vote until I was just about 26 years old. I grew up in a time when I had to have people of “sound mind and body” co-sign any contract I may enter from a rental lease to a credit card application. To me this isn’t ancient history, it was the experience of my life and it turned me into an activist. I fought hard for legislative change and protection.

I discovered early that, as an activist, words matter. Words like “should”, “try” and “consider”. When the word “should” shows up in a piece of legislation or regulation, that’s not a directive, it’s a suggestion. Legally should, as a noun, holds a different value than “will”, a directive. This understanding of language (semantics) are important lessons for any activist and they provide the groundwork for advocacy.

One of the words least understood is that of “public”. The Canadian Charter of Rights and Freedoms is build on a specific understanding of the word “public”. Social programs such as “public” education, “public” health, or “public” service account for a substantial part of public spending however this is “public” as an adjective and has a legal bearing.

Public, as a noun, is simply the whole body politic, or the aggregate of the citizens of a state, nation, or municipality. Public as a noun has little legal ramifications when it comes to legislation, public as an adjective is where legislative protections come into play. What is happening in Alberta these days is a complete erosion of gains made by activists in the 70’s and 80’s because so few people understand the semantics around the word “public”.

Even fewer people understand the legislative process so people appear willing to let their rights be eroded rather than study the details of how we got here. Right now “public education” is a primary example. The Alberta Education Act does NOT supersede the Charter. The Charter is recognized as Primary legislation, which consists of Acts of Parliament or statute that hold a higher ranking and can supersede other legislation. Provincial legislation, like the Education Act is secondary legislation (delegated legislation) which grants additional law-making powers to other branches or jurisdictions of government. This is also part of the federal transfer payment arrangements designed to maintain “universality” in programming This is the types of knowledge an activist develops but not a necessary tool for an advocate. It provides the support an effective advocate needs but the detail can be irrelevant for their purposes.

A screen capture of Calgary business development advocate Jason Ribeiro reading "We cannot let the last thing the remaining members of the Greatest Generation see be the betrayal of the values and principles they fought so hard to protect.  We ignore neo-fascism at our own peril and dishonour their service".  Captioned "Defending and promoting change
Defending and promoting change

An “advocate” works hard in the community. An effective advocate is someone who is adaptive, open to change and can react quickly as new information unfolds. When I returned to Calgary a couple of years ago I was plagued with concerns over the future of Alberta. I initially bought into a generational myth that Millennial’s didn’t care about governance.

They lacked the historical context while seeming to show little interest in the detail of todays political system. However after meeting and getting to know Jason Ribeiro I was able to dispel that generational myth. It is not disinterest in the political system but a desire for modernization of the political system, something I fully agree with. We can no longer conduct 21st century business based on a system build over a 100 years ago. There is a reason for their frustration which many baby-boomers see as “generational indifference”.

There’s a large contingent of Millennial’s in Calgary working hard to keep the City moving forward while transforming into a more progressive environment. Jason is one of those leading that charge. It is difficult to check the local news without seeing Jason involved in something from business development to immigrant aid support. He is very multidimensional which is a major factor in being an effective advocate.

Knowing their are people like Jason out there advocating for the City does help me validate my years of activism. Jason’s remarks on this video remind me that my generation of change-makers can’t take what we know for granted. We were there and we lived it. The Millennials weren’t and will be dependent on us to be the story tellers, the sharers of knowledge. Don’t ever take “mentorship” for granted. We have a historical perspective that is of value to the policy makers of tomorrow. Regardless of your role or background, activist or advocate, be a mentor, don’t let the years of your accomplishments fall off the rails because you’ve given up.

Watching what Kenney is doing to Alberta had me close to “giving up” but I couldn’t bring myself to let my life’s accomplishments go down the drain because of a false belief. There are advocates out there that want to pick up the torch, like Jason, so pass that torch and keep a free democracy alive. It may look like it’s on life-support but it is not dead. As long as there are people like Jason working at the grass level and the Greta Thunberg on an international stage it’s looking like a flame of freedom is still there. Be informed…