“My senses always fall in love: they spin, swoon; they lose themselves in one another’s arms.”
These lines of DJ Savarese’s poem ”Swoon” are heard at the beginning of ”Deej,” a documentary directed by Robert Rooy that was screened at Hood College last week in honor of National Disability Awareness Month. The screening was hosted by the Disability Services department at Hood.
Savarese, affectionately known as “Deej,” is the subject of Rooy’s documentary, as well as the film’s producer.
“Deej” will be available on PBS’ America ReFramed website for 30 days after tonight’s premiere (unfortunately not in the D.C. area) at 8 p.m. on the PBS World channel.
As “Swoon” is read in the film, oil painting illustrations by Em Cooper blend together, creating new images. This effect is similar to what Savarese experiences as an autistic young man whose senses merge and morph together from synesthesia. These moments can enthrall him.
Savarese, who was filmed during his high school and college years in Iowa and Ohio, partnered with Rooy on the film’s editorial direction to make sure Savarese was centered as a young man, not a child, wanting inclusion and access for every person with disabilities.
Unfortunately, the poetic language Savarese types one keystroke at a time is not what some strangers see in him. Savarese deals with anxiety, physical coordination issues and is non-speaking, though he occasionally vocalizes. His thoughts are expressed through a dictation device that is connected to a keyboard. His rich intellectual world could have been untapped if his adopted parents, Ralph and Emily, had not put him in mainstream classes beginning in kindergarten.
“DJ loved kindergarten, and he still has a couple of adult friends in his kindergarten class,” Rooy said in a phone interview. “I know DJ has remarked on how unprejudiced little kids are. Prejudice is learned. He felt immediately accepted in his kindergarten class perhaps in a way that a high school class would have taken more time.”
Savarese was close to 10 years old, Rooy said, before the sounds around him could be recognized as words to be read and written. Savarese’s parents, especially his mother, made visual aids to help Savarese connect photographs with words.
Rooy, during the Q&A portion of his Hood College screening, said Savarese cites his early years of solely listening to the sound and rhythm of words as the reason he can craft language into poetry. Savarese also developed skills in playwrighting and assistant directing. His high school peers performed a play of his experiences.
Through much of the documentary, Savarese was driven by a mantra: “molding free.” He used this phrase, Rooy mentioned, to capture the way Savarese wanted to create and shape his freedom. At first, Savarese imagined a key component of this freedom as independence from his parents.
“DJ’s language, when I first met him, he was still only four or five years from when he first started to be able to write and read. His language was much more sort of evocative, but not necessarily as precise. So this is something that I would say is of that earlier kind of vocabulary,” Rooy said of “molding free.”
As viewers watch Savarese flourish academically and apply for college, there are moments when past foster care trauma haunts him. Savarese’s biological mother neglected him at 3 years old, and once he was in foster care, he was abused. Savarese expressed some of this pain in another poem that is illustrated in the film.
“We pretty much respected DJ’s wishes to not dwell on it,” Rooy said of Savarese’s early childhood trauma. “We felt it was important that it be there because it is something that is a part of DJ’s life but in general DJ didn’t really want us to deal too much with his past.”
Instead, Savarese focuses on the freedom he wants for himself and people with similar conditions. This freedom includes mainstream educational access, the ability to freely communicate and be heard, and advocacy for autistic people, by autistic people.
Savarese completes a major milestone in the film as he ventures closer toward his dream of living in a college dorm. He first lives in a town house with his mother near campus and hangs out with friends in the dorm.
But gradually, Savarese changes his pursuit from independence to interdependence rooted in self-determination and compassion.
“Interdependence is the kind of thing where he depends physically, at this point, on his mother or an aide but at the same time, the people around him who are neurotypical or other disabled people need him because of what he can bring by force of his own personality to the social dynamic,” Rooy said.
Rooy still stays in touch with Savarese, who is now in his mid-20s. Rooy shared at Hood that Savarese is also promoting the film in his first year after graduating from college. Savarese is a published poet and writer with an Oberlin College degree in anthropology and creative writing. He also presents at conferences to advocate for non-speaking people.
“We didn’t want the audience to write DJ off as the exception,” Rooy said. “We wanted to really leave people with a sense that all non-speaking autistics and other people of disability all need whatever it takes to give them access. Access to communication. Access to opportunity. And that has to be a fundamental precept for everybody, especially educators.”