In the summer of '92 before my last year of high school, my friend Tara told me about a summer job that she would be returning to. Shadow Lake Camp was a residential summer camp that serviced all ages of people who had an intellectual disability. I jumped at the chance to move away from home for the summer to work there too. What an eye opener.
That summer changed my life. I worked as a residential counsellor to people with varying disabilities from brain injuries to Down syndrome. I learned to see people for who they are and never underestimate their abilities. I developed a fierce protectiveness for my new friends and could no longer accept people's casual jokes or disrespectful use of the word "retarded."
After my summer at camp, I came home with the desire to work in the field. I worked my way through my last year of high school doing the overnight shift and weekends at a group home with five residents who had developmental disabilities. I believed that it was my role to "care" for them. None of the residents were verbal and most of my time with them was spent providing support and tending to their needs.
In all of my training for the job, I don't ever recall being trained on how to teach or engage them in any truly meaningful activities. Their days were pleasant enough but very routine. Every day seemed like the one before, revolving around physical therapies, eating, bathing, sleeping, some crafts and some chores that were assigned based on their level of ability. There was the occasional field trip or outing, and random visits from family members.
I moved on to university and not long after, took up another job in a larger residential group home that housed 20 residents. I think back to their vacant faces and remember the line-ups at the med room door where everyone waited for their daily prescriptions. I remember one young man, "Sam," that I had such a soft spot for. I can see him in my mind now. He always wore sweats and we had to cut the tags out of all of his clothing. We had to shave his face with a straight razor because he couldn't tolerate the electric anywhere near his head.
He had the most beautiful, gentle, sky blue eyes that you'd only see in little darting glances because he would rarely make eye contact. While everyone else was engaged in a group activity, he would be in one of two places in the house. Either standing against the wall in the common room, rocking from foot to foot while lightly tapping the heel of his hand against his temple, or he would be standing at his bedroom window, staring outside.
I don't remember hearing the word autism in those group homes and if it was used, it was a dismissive label that was used secondarily to a diagnosis of retardation. I felt deep compassion and care for them all, but if I'm being totally honest, I fell into the trap of believing what they instilled into me: that all of the residents were developmentally delayed and could probably not learn and most likely didn't care about what was going on around them. This may have been true, but I would argue that the medications they were on significantly contributed to this fact.
People with autism are not all violent, unthinking, unfeeling or uncaring, incapable of progress or love.
This brings me back to my friend, Tara. She has gone on to continue being a remarkable woman with four children of her own with complex special needs. Facebook reconnected us several years ago and she has continued to inspire me with messages such as this one:
"I was reminded that 20 or 30 years ago, our children would have been institutionalized as the norm, they would not have been schooled and, in the not too distant past, they would have just been left to idle. As we fight for the best for our kids, I sometimes need to be reminded that 'the best' just does not exist for our kids right now. Society is changing and our generation is the one pioneering the way for our children. It does not help the frustration on a daily basis but I believe that, one day, the services will be there because we fought for them."
Her message made me cry. How true this is? I have thought the very same thing so many times. Our children are in a limbo generation. We are kicking and screaming to prove all the old stereotypes wrong.
People with autism are not all violent, unthinking, unfeeling or uncaring, incapable of progress or love. When supported in a loving environment and by people who believe in them and their potential locked within, most of the kids can go on to be very successful and lead fulfilling lives with loving relationships.
It breaks my heart when I think about all of the Sams that I have known, or that are out there or who have come before my children. It is a tragedy of epic proportions that the Sams were left to idle, as Tara says. I feel sick with sadness when I let myself think about all the thoughts, desires and emotions that were locked inside their heads, unable to be expressed. The rocking, the shrieking, the head banging.. could they have been signs of pain or frustration and not simply '"autistic behaviours"? And if they were signs or expressions of pain, how can we live with our shame in knowing that we did nothing to help alleviate it?
I thank God that my kids have more opportunities than they would have had 20 years ago, that I have tools, resources and strategies available to me to teach my kids, that parents would not have had decades ago. I am grateful for what I have and I have shed many tears for those who have not had these same opportunities. But that doesn't mean that I don't want more for them.
I will not be satisfied with putting my children in institutions and perpetuating the cycle of stereotypes. I don't care what people think of me, because I don't matter in this. One day my kids will thank me, the Taras and the rest of us "pioneers." I know they will.
Author's Disclaimer: this was my experience with the group homes I worked for. This is not to suggest that their descriptions are representative of all group homes at that time.
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