Patrick, a gentle Italian teenager with autism, cannot speak but he can use a computer to communicate his thoughts. How I Am, a documentary by Ingrid Demetz and Caroline Leitner, shows him spelling out his need for the harmony and tranquility of nature and his yearning for friendship and acceptance.
The film was screened in March at Thessaloniki Documentary Festival in the “Challenging Perceptions” tribute of thirty-one works from around the world featuring people with developmental disorders and other conditions. The tribute was intended, in the words of festival director Dimitris Eipides, “to help us cross the distance from prejudice to understanding”.
That distance can be formidable when society ignores or excludes anyone different. “If we respect people who are different, they will do us the honor of allowing us into their world,” argued Yanna Kalogeraki at a panel discussion during the festival. She has seen the absence of respect in a system starved of qualified staff, infrastructure, and ideas. What’s Eating Dimitri?, directed by Valerie Kontacos and Yannis Missouridis, tracks Kalogeraki’s pursuit of a fair deal for her son, who has an intellectual disability. Access to real education in appropriate buildings and a chance at employment and independence seem unattainable.
Dionysis is a paraplegic with a mild intellectual disability. At the age of thirty-four, he lives with his mother. Addressing the camera in Marina Danezi’s short film The Trap, he knows that the alternative, and perhaps his future, is in a catchall facility where people with vastly different needs are bundled together without trained help, attention or stimulation.
The quality of policy and infrastructure differs from country to country, but one constant is the reliance on family as carers and advocates. British Columbia now offers better services than Greece does, but progress only came after persistent pressure from parents, explained Canadian director, Marianne Kaplan. She speaks from experience. Her film The Boy Inside is about her son Adam, who has Asperger Syndrome.
The same applies across the border, according to Daniel Habib, who made Including Samuel about his son who has cerebral palsy. He explained how the disability rights campaign started in the United States “when people crawled out of their wheelchairs and up the steps of the Supreme Court”.
Families are also, increasingly, documenting their stories. Parents, siblings and other relatives made many of the films screened in the tribute. They have exceptional access, which can clinch funding, explained Kaplan. They are driven by other concerns as well: the need to make sense of what is happening and to record the joys as well as the struggles. And, crucially, they give a voice to people who are too seldom heard.
While officialdom casually offloads responsibility onto families, inspired teachers and arts practitioners often step up with creative outlets that promote social integration.
Elias Lafuente, director of Danza Down in Madrid, gently draws out the best from performers in Elizabeth Wood’s documentary Dancing with Down. He explains why dance is so important to the participants: “it is a tool that helps them feel integrated in the world. It gives them emotional tranquility, enables them to feel more sure of themselves, helps them not to feel invisible, to open up.”
Nikos Alevras reveals the pleasures of rehearsing and putting on a play in Performance, while children at the Special Vocational education and Training School of Alexandroupoli use myth to explore difference in We the Cyclops, directed by Maria Economou.
The band leader in Jim Bigham and Mark Moorman’s documentary For Once in My Life cajoles, encourages and leads musicians with a variety of physical and mental conditions to a resounding triumph at their first major gig.
If the arts foster personal fulfillment, so activism can improve external conditions. Habib sees inclusion as the answer. Insisting from the get-go that his son attend mainstream school, Habib and his family fight every barrier. They enlist technology: Samuel’s super high-tech wheelchair enhances mobility and activity. They bring teachers and classmates on board: “to his classmates Samuel is somebody with interests, not ‘that kid in the wheelchair’,” Habib said.
When he asked a group of twenty kids to come up with a campaign, “in two days they had produced a mission statement”. The fruit of their proposal is a campaign that challenges the idea of normality by redefining what’s normal.