What the Autist Poet and Filmmaker, DJ Savarese, Taught Me About Neurodiversity

Katherine Berko

Though it is a truism that no two minds think alike, not all differences are treated equally.  This discrepancy is what has led austists and other activists over the past several decades to coin the term “neurodiversity,” which the Oxford English Dictionary defines as “the range of differences in individual brain function and behavioural traits, regarded as part of normal variation in the human population.” With such a capacious definition, don’t we all fall somewhere different on the spectrum of human difference? And yet “neurodiversity” is also a reclamation of autists’ power: rather than pathologizing people on the spectrum, this phrase encourages their celebration.

Exploring the nuances of what it means to be neurodiverse, the Duke University Health Humanities Lab at the Franklin Humanities Institute hosted its two-day Neurodiversities Symposium, co-sponsored by the CHCI Health and Medical Humanities Network, on October 26-27, 2018.  The symposium showed the Peabody Award-winning film Deej, created by non-verbal autist DJ Savarese; held a workshop on poetry and autism; led a roundtable about resiliency on college campuses; taught people to “think differently” via a comics workshop with Nick Sousanis; hosted a panel with Duke faculty on “Brainhood, Self-Concepts, and the Perils of Neuroconformity,” and more.

Deej, a documentary detailing the life of nonverbal autist DJ Savarese through his experiences navigating Oberlin College, is an individual portrait of the richness neurodiversity can bring to the world. DJ, who was abused by his mother as a young child and, later, in foster care, was deemed “incompetent” because of his autism. But after being adopted by Emily and Ralph Savarese, DJ has not only grown up to become one of the only non-speaking autists to have graduated from college, but also published a book of poetry, A Doorknob for an Eye, and produced a documentary about his life. The film includes a number of DJ’s poems accompanied by oil-painted animation, which the poet describes as a “cinematic companion to words without illustrating or overpowering them.” DJ has written on the film’s website that “because the camera can’t help but stare, another visual medium might better align with the autist’s point of view”—a fitting aesthetic decision, since DJ himself does not like to look people in the eye.  Though DJ is nonverbal, viewers do get to hear him speak, not by mouth but through a text-to-voice synthesizer using the audio feature on his laptop. The film shows that just because someone is labeled “non-speaking” does not necessarily mean he cannot speak; it may simply mean that he speaks a different way from the majority. Just because we are neurologically different from each other does not mean we cannot communicate and share our stories.
 

DJ at film
DJ Savarese takes questions following the screening of the documentary film Deej at the Neurodiversities symposium.

The morning after the film screening, DJ held a poetry workshop titled “Perspectives, Poetry, and Personhood.” At the start of the workshop, DJ played a video clip of the autist Stephen Wiltshire. In the video, Stephen sketches New York City’s skyline purely from memory. After a short 30-minute helicopter ride above New York, Stephen can remember the city as if it were photographed and permanently stored in his brain. This autist’s mind once again sheds light on the value that neurodiversity can spread to the world, when we give it the chance. After showing the video clip, DJ passed out a poem he had written in honor of Stephen, titled: “Blanch-Ink-Jet-Maneuver.” First, participants took turns reading aloud from the poem until we had read the entire work. Then, DJ asked us about the poem, using pre-typed questions on his laptop, which he had the computer repeat through its speakers. The poem starts:

He has two days to bring

all of London to life

two days and thirty pens.

The lines depict Stephen as he sketches a city while crowds of people watch him, fascinated. They deem him, “The human camera” (4), a “savant” (12), and an “automaton” (13). Many people perceive Stephen to be robotic, or machine-like, due to his uncanny ability to memorize the layouts of cities.Yet, DJ’s poem shows that Stephen is not a robot or some technical object devoid of emotion. Rather, in sketching, Stephen acts as a cephalopod, protecting himself from the prying eyes of the crowd:

To elude predators

the inking cephalopod releases

a diffuse cloud

of dark pigment, which it then disperses

with a jet of water.

Stephen’s pen works like this –

call it hippocampal subterfuge. (17-21)

Stephen, like the cephalopod, uses ink as an escape, acting like a “spectral Houdini” (32).

That Saturday, after we read and analyzed the poem with DJ, he had us flip the paper so that his poem lay on its side. Lo and behold, the jagged lines in their varying lengths, took the form of a city skyline.

Through this poem, DJ showed us how misunderstood an autist such as Stephen can be. Neurodiversity is not something to be pathologized, but rather, it should be appreciated for the array of creative capacities it makes possible. Remember when in the Wizard of Oz Dorothy emerges from her house’s gray interior, into the kaleidoscopic land of Oz? Imagine the world and its neurodiversity as the colorful Oz, and the world without it as the bleakness before Dorothy opens the door.

Katherine Berko is the Duke Health Humanities Lab at FHI manager. A recent graduate of Duke (’18), Katherine aspires to become a published author and a licensed clinical social worker, so that she can employ aspects of narrative medicine and health humanities with her patients.

Katherine Berko