Monday, September 27, 2010

Inspiration is Power: Part 2

In the years immediately following Charlie’s diagnosis, I was passionate and driven to succeed in my search to understand and perhaps even cure my son’s autism. While the term ‘lay’ normally operates within a religious setting, the certainty provided by the search for a cure and hope for my child empowered me with the moral authority, if not spiritual zeal, to boldly engage with this foreign literature. Like most religious orthodoxies, biomedical science operates within a similarly rigid setting of jealously guarded specialized knowledge, whose alternative readings are usually strenuously opposed. 
This literary pursuit was the beginning of what has become a personal quest narrative of hope and recovery. There are three dominant strategies in medical narrative.  The first is the restitution narrative in which health is regarded as the normal state to which the ‘sick’ person will be ultimately restored. The second is the chaos narrative where the illness lacks causality, sense and predictable trajectory and subverts the expectation that one event leads to another. The third and final narrative is the quest narrative. Loosely based on the writings of Jung and Homeric recollections, the quest narrative follows the narrative arc of a hero who suffers, acquires knowledge and then returns triumphantly to make that knowledge known.
In addition to the biomedical texts that articulate every aspect of the disorder’s symptomatology, pathology and prognosis, I encountered a body of ‘illness narratives’ chronicling the experience of parenting a child with autism. Books such as The Siege and Exiting Nirvana by Clara Clayborn-Park, Let Me Hear Your Voice by Catherine Maurice and Facing Autism by Lynne Hamilton are benchmark texts in the genre and required reading for any parent of a child newly-diagnosed with autism. Temple Grandin’s Emergence Labelled Autistic and Donna Williams’ Nobody Nowhere deliver fascinating insights into the autistic experience. The narratives of these human lives, unlike the socially neutered biomedical hosts, were rich in emotion, inspiration and personal experience.

Twelve years have elapsed since I asked myself, ‘Will everything be normal again?’ but the answer must remain an open question. For the journey of grief, discovery, advocacy and healing upon which I was an unwilling traveller has transformed both the passenger and the destination. I have retraced the steps in this journey in a memoir titled The Other Country: A Father’s Journey with Autism. The title, The Other Country, in this context refers to the largely invisible parallel society inhabited by anyone who lives outside the mainstream. This ‘other country’ I encountered is inhabited by the families of children with disabilities whose shared identity is as defined by their culture, their language, and their dreams as any migrant population. Unlike the festive public celebrations of difference that multiculturalism champions, however, this community celebrates its identity and aspirations in more private spaces. These are spaces from where even those progressive champions of support and advocacy retire respectfully, leaving the disabled and their families to their private lives.

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