"It's called the institution shuffle," Win explained to my question about why the people I worked with on the ward walked with such an odd, listless gait. I noticed it right off when I started work at Glendale, a small institution in Victoria which offered me my first job in the field of disability. I saw a woman making her way down the hallway walking slowly barely lifting her feet. She was the first of many who I saw over the years creeping down hallways, wandering from dayroom to dayroom. It was my first hint of the weight of captivity on the souls of people with disabilities who lived in the land of the long corridor. It deeply saddened me.
That's all I could think of, sitting there on the podium waiting to do my prsentation. It is Saint Louis and the Missouri People First conference was about to start. The room was packed full of 300 people most of whom had a disability. There were a few facilitators sprinkled through the room, but the room was not theirs. It belonged to the 'others' ... those who had tred institution hallways, those who have always walked at the edge of societies acceptance. I had asked permission to get up onto the podium before the ceremonies begun so that when it came time to start I didn't have to struggle with my wheelchair to get up the long and somewhat steep ramp. Thus I had the perfect view.
They began with a flag cerimony, different People First groups from around the state prepared a banner or a flag to represent themselves, each region did the same. The vice president of People First sat beside me and announced each group as they came in ... "People First Saint Josephs" he called out in a loud and commanding voice. The room erupted in cheering and applause, "People First Columbia" more cheering more applause. They entered the room through a door that was directly opposit the podium and came down the center of the hallway.
Each banner had artwork and symbols that each group had made to symbolize who they were as individuals, who they were as groups. The cerimony was simple but oddly powerful and incredibly moving. I felt myself tear up as I watched people with disabilities proudly, so very proudly, carry their banners into the room. Into a room full of welcome and acceptance and sameness. There was such dignity of each flag bearers face. They understood the honour afforded them. They wanted to carry out their task with dignity.
And they did.
It wasn't until near the end that I noticed. The institution shuffle was long gone. They walked in as powerful men and women. They walked in as representatives of their group. They walked in as citizens. They walked in proud. Suddenly I couldn't hear the cheering any more. All I could hear was the soft 'shufffft shufffft shufffft' of her shoes as she made her way down Glendale's hallway.
Impossible ... it was impossible then to imagine that she was slowly walking towards a different destiny. That she would walk past institutional living and into the community. That she would walk past the edges of society towards the center of belonging. That she would walk past shame and into pride.
It's been a long journey.
And it's not over.
But my, oh my, how far we've come.
4 comments:
Sad thought that came into my mind: the people walking so proudly stand for the fact that "we" as a collective are out...but the institutions continue to run, and people are still being locked up in them. "She" might still be in one, provided she has lived this long.
(For anyone curious, you might read the firsthand "Conversation On Institutions"...it's interesting in a rather disturbing sort of way.)
I honestly can not imagine. It sickens my heart. Dave, you would love my daughter's sassy walk. It is her own. Her knees go up when she runs and she looks like a little inverted triangle from the waist down. I would not trade her confidence and determination for my own life. Thanks for making me appreciate today!
Moggy, as a 'fat' reader from British Columbia, I thought I'd let you know that "she" is free because all insitutions for people with cognitive disabilities in BC closed several years ago. Your point is well taken, though, that other "shes" are still locked up in large buildings. But the woman in this story would no longer be in Glendale or any other large facility.
Just dropping a line here to say that the link moggy provides above to "conversation on institutions" is well worth reading. One of the participants in that conversation (Amanda Baggs) has an excellent blog of her own at ballastexistenz.autistics.org
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