Non-speaking man with autism co-produces film to promote inclusion

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David James “DJ” Savarese has accomplished far more than the average 25 year old. Not only did he graduate Phi Beta Kappa from Oberlin College in 2017 with a double major in Anthropology and Creative Writing, but Savarese also co-produced Deej, which highlights the obstacles he faced as a non-speaking student with autism.

On Thursday, Jan. 18 Deej debuted at Webster in the Winifred Moore Auditorium. The documentary followed Savarese over a span of six years, from his experiences in high school to his college graduation.

Savarese co-produced Deej in attempts to show the world that inclusion is a necessity when it comes to non-speaking individuals.

“I’m trying to start a dialogue about disability, interdependence, and autistic civil rights from the inside out, not from the vantage point of neurotypicals,” Savarese said. “Redefining assumptions and narratives about disability is at the crux of my conversation about inclusion.”

Filmmaker Robert Rooy co-produced the documentary with Savarese. Rooy initially envisioned the project as a short film, but the subject matter inclined him to extend the film’s timeline over a much longer span.

Over the filming process, Rooy followed Savarese through the peaks and valleys of his personal life. Rooy captured the most intimate moments of his life: his high school graduation, his relationship with a woman who had cerebral palsy, and his struggle for interdependence.

“I originally wanted to work with DJ because I realized he was an exceptional person,” Rooy said. “I ended up working with him because despite outward appearances to the contrary, he shouldn’t be regarded as an exception.”

The film showing was sponsored by Missouri Families for Effective Autism Treatment (MO-FEAT). Board President Katie Hotard shared the personal connection she felt in regards to Savarese’s story.

“I, myself, have a daughter who has limited verbal skills, and she is learning, slowly but surely, to type independently,” Hotard said. “We have learned that she has a rich inner life that we’re just now beginning to understand at age 11.”

Non-speaking individuals typically use Facilitated Communication (FC), or supported typing, to interact with others.

Matt Hayes responds to questions using facilitated communication in a Q&A session after the film.
Matt Hayes responds to questions using facilitated communication in a Q&A session after the film.

According to non-speaking advocate Matt Hayes, one of the most common misconceptions is that people assume they have nothing to say, when in reality, it is the polar opposite. People often fail to see beyond their preconceived notions of mental competence.

“Communication is a work in progress,” Hayes said. “If you can give these methods of communication a chance you will change lives.”

One of the obstacles Hayes and Savarese face is not always being able to control their muscle movements. During a Question and Answer session following the documentary, Hayes explained what is usually going on in his mind when he waves his arms.

“I want to say I am generally happy, but I could need to move, or I am exploding with a new idea,” Hayes said. “I have a rich life of the mind that people can not see because of my silence.”

Savarese, who wrote his first poetry anthology in fourth grade, agreed. Today, his poems and prose have appeared in various publications, including The Iowa Review, Seneca Review, Disability Studies Quarterly, and Voices for Diversity and Social Justice: A Literary Education Anthology. His lyrical essay “Passive Plants” was also nominated for a Pushcart Prize by The Iowa Review, according to his personal website, djsavarese.com.

Deej featured four of Savarese’s poems, all of which were set to animation by British director Emily Cooper.

“Just because I have difficulty coordinating my breathing and vocal chords to make sound has nothing to do with my ability to communicate in written language,” Savarese said. “In the film, the poetry and oil animation seek to offer the viewer the insider’s perspective, something very different from the outsider’s.”

Deej aimed to capture this insider’s perspective. The film asserts that “inclusion shouldn’t be a lottery,” that every individual has right to participate in life, despite any limitations.

Although Cooper never met Savarese face-to-face, she felt as though she knew him well and understood his purpose.

“[Deej] is not just a film about someone with autism, but a film made in part by an autistic young man whose perspective is incredibly important in the world right now,” Cooper said. “The film feels to me like a step towards a flowering of connection and inclusion across all forms of disability.”

With the goal of “inspiring hope” in mind, Savarese will continue on his Deej Inclusion Tour, which is comprised of film showings around the country. His next showing is on Jan. 27 in Fairfax Station, Va.

“There’s the old adage: you have two eyes, two ears and one mouth, and you should use them in that ratio,” Hotard said. “When you’re not able to speak spur-of-the-moment, you tend to use your other senses to compensate. What I have found from most less verbal people is they have an incredibly rich set of observations about the world around them that many neurotypical people miss completely.”

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  1. Facilitated communication is a sham, a lie, a misrepresentation of autism. It is the single most discredited method in the history of developmental disabilities.

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