Deej is the story of DJ Savarese (“Deej”), a gifted, young writer and advocate for nonspeaking autistics. Once a “profoundly disabled” foster kid on a fast track to nowhere, DJ is now a first-year college student who insists on standing up for his peers: people who are dismissed as incompetent because they are neurologically diverse.

In the following UNFILTERED blog post, Deej director and producer, Robert Rooy shares what he is learning from the autistic community.

DJ Savarese, my fellow producer on Deej as well as the film’s subject, and I are midway through a three-month screening campaign we’re calling “The Deej Inclusion Tour,” visiting close to fifty colleges, universities and community groups. Inclusion, in fact, is what Deej is all about; our “tag line” is: “Inclusion shouldn’t be a lottery.”

Film still of Deej walking up stairs at Blue Bell, PA screening.
Spectators at Montgomery County Community College in Blue Bell, PA watch DEEJ. Photo: Robert Rooy.

“Inclusion” changed DJ’s life, almost miraculously–from one of abandonment and abuse at an early age to one filled with love and literacy. As he writes on the Deej website: “I won the lottery when my parents adopted me from foster care; I won it again when they included me in regular education. Now, I seek to help kids much less fortunate than I by showing people what a nonspeaking student with autism can do.”

But who should tell DJ’s story?

There is a saying within the disability community: “Nothing about us without us.” Over the years, people with physical and neurological differences have grown weary of other people, often well-intentioned, speaking on their behalf. In response, DJ and I ventured into new territory with Deej: we agreed to share editorial control. This was by no means easy. We had many disagreements, and the editorial process took much longer to complete than we had anticipated.

Gradually and arduously, we carved out the final film. The issues we encountered in our collaboration are too complex to wade into here. But let me say at very least that accurate representation of disability is an elusive target. Even as our relationship matured, I as a neurotypical person, with all the limits of understanding that can come with that, sometimes found myself misunderstanding DJ’s thought process and his intentions.

Now that the film is completed, the goal of self-representation poses new challenges–and opportunities. Whenever possible, DJ is appearing with the film. But so far, there have been enough screenings to keep us both busy. DJ has urged that in his absence, Autistics, especially those who don’t speak, be included in the panel discussions that often follow screenings. For the most part, we’ve been successful in doing just that.

Poster at Millersville University’s Ware Center in Lancaster Pennsylvania announces screening of Deej. Photo: Robert Rooy.

As I’ve moved from screening to screening, it’s been striking to me just how the nonspeaking advocates, and their words spelled out one letter at a time, have resonated with each other. They’ve all spoken of frustration in being misunderstood. Benjamin McGann, appearing at a Washington, DC screening, volunteered: “It is refreshing to hear this kind of discussion. I am an adult; however, many view me as a child because I cannot speak. But I can think and learn and love and work.

Washington DC
Discussion panelists at the Atlas Performing Arts Center in Washington, DC include nonspeaking Autistic Ben McGann. Photo: Christie Vosseller.

Jack Alnutt, a high school student who joined us in Germantown, Maryland shared that “it took years of perseverance” to learn to communicate. His mom, Amy, added that he only succeeded four years ago, and that the first thing he typed was “I am trying and I’m really smart.

Germantown MD
Post-screening panelists at the BlackRock Center for the Arts in Germantown, MD include nonspeaking Autistics Jack Alnutt (third from left) and Gordy Baylinson (second from right). Photo: Tauna Szymanski

Every one of the nonspeaking advocates underscored how gaining the ability to communicate was a game-changer.

When asked what inclusion means to him, Brent Sullivan, a 48-year-old Autistic near Wilmington, Delaware, replied, “It is the feeling of being wanted.” Like Jack, he first learned to spell just a few years ago. When asked what growing up without communication was like, he said, succinctly: “It was unpleasant. Real communication,” he continued, “has given me more options.

Brian Foti, in the greater Philadelphia area, said, “It’s wonderful to hear you talk about Autistics as capable intellects. This is my mission.” With regard to his own recently gained access to communication, he added, “It is allowing me freedom to express my thoughts without [others] assuming what I want to say…

The youngest of our nonspeaking participants to date, Charlie Taylor in Waynesboro, VA, said, simply, “DJ is my hero.” His story, though, highlights the barriers to inclusion that exist in many places. His mother, Patricia, home schools Charlie because she feels their school district is not accommodating to Charlie’s needs.

It was striking how many audience members and panelists look upon DJ’s experiences of inclusion in middle school, high school and college with envy. Not all school systems and not all school administrators go the second, third, and fourth miles to make sure that every child has access to language and to communication.

It also became clear just how important funding and overall availability of resources are in helping people of all disabilities to gain access to a full, connected life. A member of the audience from a poor neighborhood shared her story—largely one of misdiagnosis, and lack of information and support in helping her care for a disabled son and in managing her own disability.

Philadelphia PA
Discussion Panelists at the Annenberg Center for the Performing Arts in Philadelphia, PA include nonspeaking Autistic Nick Pentzell (second from right). Photo: Caroline Leipf.

In central Philadelphia, I asked nonspeaking advocate Nick Pentzell for his thoughts on the most important ways by which to advance and expand inclusion. His first response: “Wow.” He then followed with, “Number one, attitude adjustment; two, adequate funding; three, not having to prove oneself over and over again.

Robert Rooy (Producer, Director, Videographer, Editor) is an independent filmmaker who has worked in more than twenty countries, creating media with and for international development, human rights and environmental organizations. His encounter with Muhammad Yunus, founder of Grameen Bank in Bangladesh and winner of the 2006 Nobel Peace Prize, led to producing and directing To Our Credit, a two-part PBS series that aired in 1998. In addition, he has worked as an assistant director on more than forty films, including Lonesome Dove, Honeymoon in Vegas, Minority Report and The West Wing. He holds an MFA degree from Yale School of Drama, a Distinguished Alumnus Award from Calvin College, and a National MediaMaker Fellowship from the Bay Area Video Coalition.

Deej by Robert Rooy is the story of DJ Savarese (“Deej”), a gifted, young writer and advocate for nonspeaking autistics. DJ Savarese is himself the commentator and co-producer of Deej. Deej will have its national television broadcast premiere on AMERICA REFRAMED Tuesday, October 17, 2017, at 8 p.m. on WORLD Channel (check local listings) followed by free online streaming between 10/18–11/16/2017. 

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AMERICA REFRAMED
AMERICA REFRAMED curates a diverse selection of films, highlighting innovative and artistic approaches to storytelling portrayed from the lens of emerging and veteran filmmakers. Viewers are immersed in personal stories from towns big and small, to the exurbs and through country roads, spanning the spectrum of American life. The documentaries invite audiences to reflect on varied topics including culture, healthcare, politics, gun violence, religion and more. UNFILTERED is a new space where AMERICA REFRAMED filmmakers can share their experiences and reflections about the documentary filmmaking process. The views expressed in UNFILTERED are solely those of the author/filmmaker in his/her personal capacity, and do not in any way represent the views or policies of AMERICAN DOCUMENTARY Inc., POV, WBGH, the WORLD Channel, or AMERICA REFRAMED.