Wednesday, March 9, 2011

Thinking About Inclusion and Paradigm Shifts

I was honoured to be one of the panelists at the screening of the incredible documentary, Including Samuel at the University.  There were four of us sharing our responses to the film and our hopes and fears about inclusion for our children.  I was invited because Aidan is just beginning his journey into the system.

Photo courtesy, Dan Habib:

What stood out for me the most was the answer to the question, "Where does inclusion work?" 
The answer, drumroll please.....
"In the family." 
Whole heartedly. 
As I watched the film I kept thinking of my father in the 1970's and how he wasn't included.  He was sent off to a hospital where he wore his pajamas all day while watching television in the sitting room. Our family watched as the paradigm shifted.  As patients began to be dressed for their day.  Still watching television, but given some dignity while doing so. 

Things changed at the hospital, so my dad's entire ward  was re-located to an institution.  The Funny Farm - people in our town called it.  A different ward than that for the insane or mentally challenged: this ward was a chronic-care ward which housed mostly very old people. Dad was the youngest one there, at first, until a teenager who had been in a car accident and was paralyzed, and speechless was admitted and shared a room with him. 

Over time, as the paradigm continued to shift, people in the chronic-care ward were taken out into the community to do "regular" things.  Bowl, with a trough-like plank on their knees to push the bowling ball down the alley from their wheelchair.  Shop at the mall, and eat in the food court.  They were even taken on the Chi-Cheemaun ferry cruise from Owen Sound, up to it's summer spot in Tobermory. 

For those outings, I skipped school and went along too.  It was fiercely important to me.  You see, Dad had been a Captain and Pilot on the grain ships before his illness stopped him in his tracks.  So, the trip on the ferry was very important to us.
Tobermory, Ontario_2486
Photo Courtesy:

I would go along as a helper, and during one of the earlier trips I pushed my dad's wheelchair to the bough of the ferry so he could look out the window and enjoy the scenery of Georgian Bay.  A group of "typical" people were sitting nearby, and when they saw us coming, they looked disgusted; like we were going to ruin their ferry-cruise experience.  They ended up moving seats to be further away from us.

I remember being so hurt by that.  I didn't know how to handle it, I just felt it like I'd been kicked in the stomach.

Fast forward fifteen years.  The trips continued - but I was living out West at the time; so I didn't go.  Mom always told me about it, and sent photos.  On one occassion, the Captain of the ferry invited my Dad up to the wheelhouse to visit with him.  It took several workers to lift dad up the narrow stairs; but they did it. 

That's something else I'm fiercely proud of.  That times change.  That attitudes change. That individuals like my dad were finally given a fair shake and the respect they deserved. 

I've got more to say on the Including Samuel documentary and Aidan, but that will have to wait for another post.


Becca said...

This made me cry today, Carol. Can't really put into words what I'm thinking, but while I'm glad things shifted for the better, I'm so sad for what he went through. You are part of the change. Things will continue to evolve, inclusion, understanding and RESPECT will continue to push their way to the forefront, changing lives.

Carol N. said...

Becca asked in an e-mail what my dad's illness was. So, I thought I'd put it here in case any other readers are wondering.

My dad contracted Encephalitis in 1972. The virus gave him a brain injury which resulted in a slow(ish) degeneration of his ability to walk and talk. But, he could still play cribbage and beat us; almost right up until the end.

He held Kieran and Liam, and looked proud as any grandpa could. Dad passed away in 2006 from cancer. He knew Aidan was on the way, but didn't get to meet him. He would have been fiercely proud of him too; I'm sure of it.