Deej. 2017. 72 min. Directed by Robert Rooy. Executive
Producers: Steven Ascher and Jeanne Jordan.
High school and college classrooms around the United States were offered a free virtual screening of the movie Deej for Disability Awareness Month in October 2020. The film was marketed as a Peabody Award–winning, Emmy-nominated film on autism, adoption, and inclusion that was excellent for the virtual classroom. This might seem like a great opportunity to learn about the struggles and triumphs of living with autism, but unfortunately Deej—along with Autism Is a World (2004), A Mother’s Courage: Talking Back to Autism (2009), Wretches and Jabberers (2011), Far from the Tree (2017), and The Reason I Jump (2020)—is an uncritical promotion of a discredited technique called facilitated communication (FC).
Popularized by Douglas Biklen of Syracuse University and founder Rosemary Crossley of Australia, FC is marketed as a way to help people with severe communication difficulties tap into previously locked in language and literacy skills. To get FC to “work,” a facilitator provides emotional and physical support, plus prompts and cuing, to help the person with disabilities type out letters on a letter board or communication device. However, dozens of controlled studies and eight systematic reviews reveal there is no empirical evidence that shows FC messages independently represent the thoughts of people with disabilities. Rather, facilitators—not the people with disabilities—inadvertently influence and control the typed messages. Most major health and advocacy organizations, including American Speech-Language-Hearing Association, International Society for Augmentative and Alternative Communication, and the American Association on Intellectual and Developmental Disabilities, accept the science and have position statements opposing FC’s use.
Deej follows DJ Savarese, a young man with autism, through his final years of high school, as he visits prospective colleges, and into his first two years at Oberlin College. DJ’s appearance on screen is tightly controlled. Despite claims that he has learned to read and write “freely,” DJ demonstrates a limited ability to communicate independently. Most of the time, his adoptive mother accompanies him to facilitate. In one brief scene he uses sign language, but the people around DJ are not shown encouraging him to verbalize or use communication devices independently. He has the gross and fine motor skills to turn on a voice activation device by himself (after typing via facilitation), so it is difficult to understand why he needs anyone to hold his arm while he types.
The movie’s editors chose to leave out some vital information. They show evidence-based methods for developing language, reading, and written language skills on the screen, but the viewer is led to believe DJ’s ability to read suddenly “clicked” in the fourth grade. These unexpected literacy skills appeared to coincide with his introduction to FC in 2001. His adoptive father, Ralph, has written extensively about facilitated communication. During a college entrance interview, DJ is asked if he plans to type with his mom, an assistant, or by himself when he attends class. It’s a fair question; colleges want to provide the necessary support to individuals with disabilities and, in the case of FC, know who is actually completing the coursework. The facilitated answer is that he will be typing independently, but scenes showing DJ in the classroom with a facilitator by his side 100 percent of the time do not back up this claim. Answers to questions are pre-programmed, leaving open the possibility that the facilitator, not DJ, typed in the responses.
There is a disturbing animated scene through which DJ’s childhood is discussed—one that alludes to neglect and abuse by his birth mother. Words attributed to DJ are spoken by the narrator: “I see scary people who want sex” and “I am very afraid.” False allegations of abuse cases have plagued FC from its inception, and if these thoughts and feelings expressed in the documentary were facilitated (rather than expressed independently by DJ), then how much of the story is real and how much is fabricated by the facilitator?
One sentence stands out in reference to DJ’s adoptive mother: “No assistance device can do what she does.” This, perhaps, says more than the producers of the film intended. It is obvious that DJ is surrounded by people who love him and want him to succeed. No one embodies this more than his mother, who quit her job and moved to Ohio to make sure her son has the 24/7 care that he needs. But as devoted and well-meaning as she is, his mother is most likely authoring the messages. She—not DJ—is doing the hard work of communicating. FC is built around trust and not questioning where the messages come from (that is, presuming competence). That FC “works” only with his mother is a convenient way to explain why FC doesn’t work in other contexts, equivalent to psychics who claim to be able to “read” only those who already believe in their powers. FC supporters (or as his family is described in the movie, “fresh thinkers”) view skeptics as being unfairly biased against FC and people with disabilities. This could not be further from the truth. Critics are concerned that the practice of FC is exploitative, because facilitators, knowingly or unknowingly, substitute their own voices for those of people with disabilities. Evidence-based communication methods and technology exist today that allow individuals to express themselves independently and without interference from a facilitator.
While Deej brings up valid issues of accessibility, independence, freedom of speech, and disability rights—as well as the need for care and support for people with disabilities and their families—it is a missed opportunity to teach people about what living with autism is really like. The story told in the documentary is one sided and built on facilitator-authored messages. A more honest look into DJ’s life, not a projection of what people around him want him to be, would better honor him and others with disabilities in the promotion and acceptance of who they are as valuable members of society.