A Requiem for a Lost Summer and a Broken Spirit.
In relative recent history many people with developmental disabilities have been subjected to the tyranny of behavior modification. How many of us who have done this work over our life time are familiar with terms like extinction, shaping, hand-over-hand etc.
The following piece is a deeply personal account of work I did at the beginning of my career. I have never been brave enough to publish it before, but in the spirit of embracing both power and love it seems appropriate. If we fail to recognize the mistakes of the past we are doomed to repeat them – I don’t think the people we support can bear for us to have to do any re-learning. Let me explain…
As a University student in Ontario one of my first experiences working in this field took place over a particularly hot and seemingly endless summer working for a behavioral therapist in a small Northern Ontario town. My job was simple. I was to implement a behavior modification program for a fourteen year old student whose labels included, non verbal, aggressive, non-compliant, and severely developmentally delayed. The behavior protocols where to be implemented both at his summer school program and at home. I was charged with the task of instructing Jamie’s teacher and family about the “best approaches” for soliciting the most appropriate (read compliant) behavior from him.
On any given weekday you could find Jamie and I locked in some form of physical altercation on the quaint, main street of the small rural, mostly farming, village that Jamie and his family called home. It is with horror and deep regret that recall sitting on the ground with Jamie, applying “deep pressure” to his torso. I spent hours locked in this position, sitting behind him, arms crossed over his chest in an attempt to “help” him regain his composure. It helped neither him nor I regain composure or anything vaguely resembling dignity.
It is only due to the fact that I out weighed Jamie by 15 pounds that I survived that summer. I was bitten, scratched, punched, and knocked over, I was a regular in the ER ward in our community hospital.
AND IT WAS NO LESS THAN I HAD COMING.
The injuries and scars that I sustained over that summer have faded over the years leaving only dark recollections, and shame.
My greatest fear is that Jamie’s have not.
I know with great certainty that Jamie’s wounds ran deeper, and that they likely remain with him to this day. I hurt him more significantly and with a more profound legacy than any blow I had sustained.
With the endorsement of a system that believed that broken people need fixing and that fixing is best achieved by force, we doggedly broke Jamie’s spirit that summer, and changed forever his perception of his value in the world. We set out to prepare Jamie to better “fit in” to his classroom and community. What we achieved was to further entrench Jamie’s isolation in the world. By introducing a program which would control and eliminate Jamie’s only means to communicate his sadness and frustration we eliminated much that defined him. I am confident, any student or community member who observed our interaction on the street or in the classroom would NEVER consider inviting Jamie to participate in anything, anytime. I made sure that folks saw Jamie as broken, sick, and in need of restraint, control and professional intervention.
I don’t know what has become of Jamie. I could probably find out but shame keeps me from it. I guess in some ways the shame has become deeply embedded in me. It is never far from my reach as my fingers try to piece together the fabric of a body of work I can be proud of.
I reach for the sickness and shame I feel about it often, it sustains and re-focuses my efforts.
Countless hours and immeasurable resources have been designated to the practice of providing training in the fine art of teaching people with disabilities to act less disabled.
We have learned that success in facilitating relationships and meaningful connections with and for people with disabilities often comes as a result of a conspiracy, a conspiracy to ignore that which is most often perceived as a deficit, to ignore that is most likely to be seen as broken.
Can we bring ourselves to invest the same amount of energy and focus to changing the way community welcomes it’s members with disabilities as we have in teaching people to act less disabled? Are we prepared to face the inevitable truth that citizens with disabilities are only as fractured and broken as the social construct dictates?
It seems as though we must begin to conceptualize our work differently. Every day, every dollar spend on attempting to fix that which is not broken is a criminal waste of precious and scarce resources.This realization has been a long time coming and the journey has come at a terrible expense. A debt that Jamie paid that summer and probably continues to pay to this very day.
Forgive me seems woefully inadequate, but Jamie, everything I write, speak about or work towards is in some way a part of the atonement you so deeply deserve.