"I wonder what we normopaths lack to live with you, to accept you as you are?" asks Claire Doyon at the end of a long documentary and experiential journey in which the "you" represents autistic people, and more specifically her autistic daughter Penelope living with Rett syndrome. After the devastating announcement of the diagnosis ("you must mourn your child"), the director takes on a singular mission: to save her daughter by waging war on the disease, which manifests itself, among other things, in a rapid regression of learning. Convinced that her child could be cured, the director, accompanied by her daughter, met a host of experts: behavior specialists, reflexologists, osteopaths, hypnotists, sound therapists in France and the United States, and a shaman in Mongolia.

In this respect, Pénélope My Love is a "clinically documented point of view" on disability, to paraphrase Jean Vigo. In this neurotypical agonistic approach doomed to failure, in which the fight against illness takes precedence over the well-being of the individual, the camera acts as a weapon of resistance for the mother and a mirror reflecting an illusion. By peppering this reflexive work with painful and violent memories, notably those of ABA (Applied Behaviour Analysis) therapies, the filmmaker raises crucial documentary and anthropological questions: "What is the value of a life? What is the value of love?", what is filmic consent for an autistic person, and how do we move from a clinical model to a social approach to disability?

 

Mouloud Boukala
Professor at the École des médias, UQAM
Chairholder of the CRCMHA
 

 

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