18q-, A Different Kind of Normal: Re-imagining Representation of Disability and Human Potentiality

Abstract

18q-: A Different Kind of Normal: Re-imagining Representation of Disability and Human Potentiality is a very personal project that evolved out of love and respect for those of us born with physical and intellectual impairment – made more precious when they happen to be our children. As a practice-led research project, a feature-length autobiographical documentary film has been created as a mechanism to explore the challenge of re-presenting the fullness of the lives of persons born with genetic difference on screen. The film introduces to the screen a group of individuals born with rare genetic conditions occurring on the 18th chromosome. It uses my family‟s story as a vehicle to traverse the new and unknown terrain brought by intellectual and physical impairment. In a bid to usurp entrenched, stereotypical storytelling devices that continue to marginalise, demonise and dehumanise persons of difference, the film balances the sharing of challenges with the joy and delight expressed in our lives. As a mother, filmmaker, advocate, student, academic and subject within the film, I have charted my process within the exegesis and ,in the absence of a formalised code of ethics for documentary filmmakers, I have explored ethical approaches across a number of disciplines in an endeavour to construct a framework to inform my work.