Deej: A non-verbal autistic man raises his voice for inclusion

When I take my 18 year-old son, Malcolm, to movies they’re usually cartoons, because sitting quietly isn’t expected from an audience that is sure to include small children. But I took him to see Deej, a new documentary directed by Robert Rooy and co-produced by Rooy and the film’s subject, David James “Deej” Savarese, anyway. I figured people would have a lot of nerve reacting negatively to my son’s occasional vocalizations while watching a movie meant to encourage full integration for Deej’s autistic brethren.

Rooy depicts Deej’s quest to become the first non-verbal autistic person in the US to live in a dorm at a four-year college — Oberlin, which he chose partially because of its long history of inclusion. Deej is unable to speak in the conventional way, but he is a gifted communicator; his profound, intensely lyrical, evocative poems, set against a swirling musical and visual backdrop, are the highlight of the film.

Deej tells the story through his own eyes and in his own words, using a computer-generated voiceover that Savarese painstakingly types via assisted communication. I say painstakingly because in order to type, Deej’s arms have to be steadied by someone else, usually his adoptive mother. Watching the process, it’s impossible not to wonder if the person providing the assistance inserts his or her own thoughts into what results. (For a negative assessment, click here). A woman in the audience who has, by her count, helped at least 100 people in this way clarified that her sole purpose is to enable people whose lack of motor control necessitates her involvement in finding the keys that they, themselves, are seeking. I have no doubt, in Deej’s case, that the words are his own. As a sometime poet, I was left in awe of his unique writing style.

One poem I found particularly moving, given my Afro-Caribbean descent, was about slaves fleeing bondage. To Savarese, autistic people, and undoubtedly others with disabilities, are an oppressed group. Deej’s feelings of oppression have additional layers: once his unstable birth mother, Rhonda (about whom he writes eloquently) lost custody of Deej and his sister, his father chose to raise only one of them. This left Deej vulnerable to the sexual abuse inflicted on him while he lived in group foster care. His childhood nightmare ended while he was still very young, but the film shows us that the wounds and scars remain. While Deej is grateful to have been raised by adoptive parents who gave him every opportunity they could, he knows his survival and the acceptance he received in public school are unusual. They shouldn’t be. A quote from Deej from the movie’s promotional poster states his mission clearly: “Inclusion shouldn’t be a lottery.”

My son talked to himself softly at some points during the film, but was generally quiet. Afterward, I asked Malcolm if he liked it. He said, “Yes,” but couldn’t say why. This is typical of my son, who is verbal and has such exquisite fine motor control that he sells his art online (with help from his family). Malcolm also participates in a range of activities, from playing a drum set in church to taking classes in Zumba and tap to private voice lessons. On the other hand, Malcolm struggles to compose grammatically correct sentences, rarely answers “how” and “why” questions, and needs constant prompting to stay on anything resembling a schedule. He gets mainly “A’s” on his multiple choice tests and other assignments in school, but shows no evidence of being independently aware of his homework assignments. His strengths are many, but his struggles make college unlikely.

A few days after the film, a brochure from a local post-secondary art school came home in Malcolm’s backpack. I wondered if it was a sign. I’m still not sure: Deej has a lot more initiative than Malcolm, despite what I think are my best efforts. Seeing the movie is making me revisit some things, a development I characterize as positive.

Malcolm’s father and I wanted our son to have models of “typical” behavior, so Malcolm has been in inclusive environments, to some extent, since preschool. That said, some of the things neurotypical kids do are hardly anything to emulate. Also, early in my journey of mothering a kid on the autism spectrum, I came to the conclusion that many of the behaviors that cause some people to stare at Malcolm — repeating passages from Disney movies, creating shapes with his hand or occasionally squealing — are harmless, and should be accepted rather than eradicated. I try to keep Malcolm out of situations where those around him need quiet to fully immerse themselves in the experience, such as a classical concert. (This means he almost never hears me play the piano anywhere but in our house). That said, the current standards of recital decorum weren’t always the case. Besides, we all “stim” in some way — biting our lips or fingernails, jiggling our legs. I agree with Deej that society needs to expand to embrace people on the spectrum, not avoid and lock them away.

As marginalized groups continue to demand the right to be accepted without changing who they are to fit mainstream expectations, Deej (who graduated from Oberlin summa cum laude) and his beloved “people” will continue to emerge from the shadows. I pray that those who underestimate autistic people because of their trivial idiosyncrasies will find Deej a revelation. I pray that my fellow caregivers to those on the spectrum will find Deej a confirmation of the value of giving autistic people enough challenges to discover their own limits, rather than adopting the limits society assumes for them. And I pray that autistic people will find in Deej inspiration to seek their own voices, as the film’s namesake has found his. And while David James Savarese is relentless in his drive to speak for his people, the very diverse group of individuals who comprise the puzzle that is the autism spectrum, I sincerely hope that this film will be seen widely enough that Deej’s voice in the wilderness will soon be preaching to the choir.