Systems Come and Go but the Child is Always There

I received a Christmas card last month that contained a few old newspaper articles with me in the early years of my polio.  As an early poster child they tended to take a lot of pictures of you for the local newspaper but I had no idea these ones existed.  It really brought home the advances that have been made in equipment and health care.  The braces I am wearing were made mainly from heavy leather trusses with metal inserts to provide the rigidity required.  They also weighted almost as much as I did at the time  If you look closely at the ankles you will notice a metal bar connecting the shoes together.  This created a swing through walking situation.  And that isn’t a belt but a leather hip band connected to the braces to hold me straight up when standing.

My family moved to Calgary in 1956 so I could receive treatment at the Alberta Crippled Children’s Hospital later to become the Alberta Children’s Hospital.  There was no socialized health care in those days so the hospital was structured as a non-profit organization and provided free service to polio survivors.  At any given time about 70% of the patient group were polio survivor’s and anyone who were there for less than six months were like ships passing in the night.  Six months would be a short stay.

I spend almost eight years in that hospital and usually spend my summers at home.  Orthopaedic surgery as a specialty was exploding in the fifties and sixties, in part, because of returning war vets from WW2 and the Korean War.  Polio kids were the ideal candidates to try new techniques on and there were lots of us.

Since my driving ambition was to get rid of the braces so I could wear tight jeans my orthopaedic surgeon loved me.  I was always willing to try something new if it meant getting to tight jeans.  Believe it or not but denim jeans were relatively new at the time and considered by many to be rebellious.  In fact many schools of the day outlawed jeans initially.

The Children’s Hospital was what you would call today a full service system.  School was provided in the hospital. I’m not even sure the word “inclusion” existed but I am damn sure as a concept it was no where to be found in the 50’s.  So it was quite common to be admitted late August for a variety of surgical procedures in order to attend school for the year.  We were more like kids at a boarding school where medical procedures went on.  The times were very different (parents could only visit twice a week, Wednesday 2:30 to 3:30 and Sunday’s 2 to 4 with no siblings).  Parents could come post surgery for about the first day or two after that it was back to daily hospital life.

It was not uncommon for a nurse to be on one side of the bed giving you a shot of Demerol while your math teacher to be on the other side of the bed going over your homework for that day.  By day three your bed was being pushed into the class room (there were six classroom divided into grades) or you were back in a wheelchair by then.  Either way life went on.

And like any hospital kids died.  By the time I was fifteen I had lost four roommates who had passed away in the bed next to me.  It wasn’t what I would call common but to be woken up occasionally in the middle of the night because they were bagging the body in the next bed did happen.  During the day we all knew because the nurses would go down the hallway closing all of the room doors while they moved the body off the unit.  There really was no equivalent to an ICU in those days so it wasn’t like a child could be secluded.

Although we were all aware we never really discussed why Peter or Sam weren’t there the next day.  There were no grief counsellors and seldom did you hear a nurse make reference to the passing of a child.  One thing you did hear whispered around the nursing desk was how unfortunate it was that many of these kids would not enjoy a long life.  As I have indicated before the average life span for someone with a physical disability back then was 25 to 30 years post disability.  It wasn’t so much the disability as an infection that would eventually get you.  Advances in antibiotics through the late fifties changes that drastically as I sit here thirty years past my initial “best before date”.

So as I indicated there were no big deals made over the passing of a fellow patient and these fellow patients were like family members.  The polio kids were my family.  The powers that be in those days didn’t publicize the deaths but they didn’t go out of their way to hide them either.  At least we didn’t think they did but it has become obvious now that they did.

The latest figures presented at the Truth and Reconciliation Commission has shown us that.  With over 4000 deaths previously hidden away one has to question the wisdom of those days.  Oh excuse me did I say “those days”?  That makes it sound like history doesn’t it.  People today react with shock and dismay while patting themselves on the back over how their close minded attitude would never allow that kind of thing to happen in the modern open society.

Oh excuse me again but did I just say it couldn’t happen in todays society?  Wrong and wrong because so many people wall themselves off from some of the realities of the world.  These issues are happening in todays society, in part, because to many people prefer to adopt the attitude that as long as it doesn’t impact on my life it’s not happening.

The Alberta government has recently been caught with their pants down and under reporting the numbers of child deaths while in foster care.  It may not sound like a large number but there is a big difference between 56 deaths and 145 ACTUAL deaths.

When people like my friend Velvet Martin can lose her disabled daughter while in foster one needs to ask questions.  When that ability to question is taken away due to a government imposed gag order for over five years that prohibited her from discussing the 2006 death of her daughter one has to question motive.  Here is a mother who was convinced by a system that her daughter would get better medical care in the foster system than the parental then one needs to question.  Being the type of women Velvet is she has been able to take this tragedy and turn it partly into something positive by introducing Samantha’s Law.

So to those sanctimonious individuals that prefer denial I ask, were we better off in the day where a hospital was a home, school and community but parents were only allowed visit for three hours a week, where death was part of a natural process but your parents knew they would see you again?  Or do we want a system where unsuspecting parents are convinced to put their children with special needs under the care of the government in a strangers home and the truth gets swept under the rug?

Thursday Jan 9/14.  As of today the Alberta government has adjusted the numbers for children to die while in care has reached 596.  That is a big jump from the original 56 then 145 amended figures.

Just one man’s opinion.