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Monday, March 17, 2014

My Brother Teddy: Artistic Indulgence

I sent a link to the below six minute film to a friend. I did not know how to react--I could not grasp the significance of the film. And the film is significant. It is part of a larger project being undertaken by Kelly OBrien an independent film maker that lives in Toronto. The short film has been critically acclaimed and given its appearance in the NYT it will be widely seen. It is an impressionistic film made by parents of two children--Teddy has cerebral palsy and has a significant physical and cognitive deficits. Emma just turned ten years and is a typical child. The film is told through the eyes of Emma who talks about her life and love for her little brother Teddy.

My friend in a mere two words characterized the film perfectly--artistic indulgence.  The film is undoubtedly captivating. Emma is sweet and kind. She has a lovely voice and the imagery is nothing short of wonderful. It captures a set of Emma's memories of childhood and her relationship with her brother. Teddy's disability is an integral part of their lives. Emma loves her bother unconditionally. There is no doubt in my mind the film will be well received by a wide range of audiences.  I can readily envisions some viewers will shed tears. As a parent I get this. Childhood is all too short and as my son approaches his graduation I am often taken aback--I got old somewhere along the line and spawned an adult.

If the film is so captivating why am I troubled--and deeply troubled I am.  The film is beautiful. Far too beautiful and entrancing. It is hypnotic in fact. It perfectly captures the beauty in sibling relationships and the innocence of childhood. What is utterly absent is reality--the grim reality of what life is really like for a child like Teddy who has severe physical and cognitive deficits. Absent is the fight for appropriate adaptive equipment. Absent is the fight for a quality and appropriate education. Absent are the barriers to good health care. Absent is the lack of accessible housing and mass transportation in the form of school buses with a lift. Absent is any semblance of the reality involved in raising a child like Teddy. Absent is what will happen to Teddy when he turns 21 years old and transitions into meager adult services.

I do not like to write the above. It makes me feel hard and cold; cantankerous for sure. Should I not be happy a film maker finally produced a short film that portrays the beauty of disability and the relationships it fosters? Should I not celebrate the obvious love Emma feels for her brother? I should but I just can't. The day to day life for people like Teddy is just unacceptable. Worse, the reality for Teddy once he becomes 21 years old is even more circumscribed and limited. This is a decision made by society that assumes life with a disability is inherently limited. We decide not to provide or value the needed social supports for people like Teddy. The fact is the timing of the film is bad--these are hard times for people with a disability. The lack of resources and energy directed to enhance the quality of life for all people with a disability is woefully lacking.  So here I sit and feel like Scrooge.  I am sorry but as lovely as the film is I live in a world where my existence is not valued. Collectively we have created a draconian system that is based on a form utilitarianism that literally destroys lives. I am at risk but with the support of others manage to live a full and rich life. I hope Teddy and his parents can create a similar set of significant social webs. Without this,  I worry about Teddy's future as well as mine.  Social isolation is a terrible thing can and does kill the human spirit.