“What the character of Rain Man can do with math, I can do with music” Tony DeBlois
By Nils Skudra
On a recent occasion I had the opportunity to watch the 1997 television film Journey of the Heart, loosely based on the real-life story of Tony DeBlois who is a blind autistic savant and musician.
The film revolves around Tony’s mother Janice (portrayed by Cybil Shephard) who lives with Tony and his brother Ray in a small Texas town and struggles to make ends meet as a bar waitress and as a housekeeper. Tony is first introduced as a child (portrayed by Jeremy Lelliott) whose blindness and autism is taken advantage of by bullies who trick him into dancing naked in the street under a running water hose, which he takes to be rainwater. This incident results in Tony being picked up by the police and brought home to Janice for indecent exposure in public, which adds to her frustration after dealing with the pressures of work. As a single mother of two, Janice finds it extremely difficult to manage Tony’s issues as a blind child with autism, although he enjoys the close emotional support of his brother Ray.
It’s an important moment for Janice when Tony starts playing “Twinkle Twinkle Little Star” on the piano in the bar where she works. Although he is blind, he displays a remarkable musical talent and soon becomes a regular sensation at the bar. Janice realizes that Tony should go to a special school for the blind where he can further develop his unique talent and the skills necessary for leading an independent life. Consequently she decides to move to Boston, Massachusetts in order to enroll Tony in the Perkins School for the Blind, despite the initial opposition from Ray who is averse to the idea of leaving familiar surroundings and somewhat resentful of doing so for his brother’s benefit. Upon arriving in Boston, however, they find their new accommodation less than satisfactory, as it is a rundown apartment, and the prospects of Tony’s admission to the Perkins School for the Blind are much more difficult than Janice expected.
Janice finds an unexpected ally in the person of Thomas DeBlois (portrayed by Stephen Lang of Gettysburg and Gods and Generals fame), a music instructor at the Perkins School for the Blind who is impressed by Tony’s talent and agrees to work with him as his piano teacher. Through DeBlois’ influence, Janice manages to get Tony enrolled in the school, where he makes steady progress over the years in refining his mastery of the piano, while at the same time Janice develops a romantic relationship with Thomas (eventually leading to marriage). As a teenager (portrayed by Chris Demetral), Tony comes to the attention of specialists who take keen notice of his status as a blind autistic piano prodigy. Following a series of consultations with Tony, they inform Janice of their conclusion that he is a savant, explaining that people with Savant syndrome display certain abilities that are far in excess of the average individual. In Tony’s case, they insist that he is one of very few people with such a unique mastery of the piano at his age, and they propose to take Tony with them to New York for a piano trial period.
The idea of letting Tony go out into the world independently is an immense challenge for Janice. Although she made the sacrifice of moving to Boston and enrolling him in the Perkins School for the Blind in the hope that he would learn to lead an independent life, she cannot bear the prospect of giving up the musical genius she feels he has become through her efforts. Consequently she declines the proposal and insists that Tony attend the Berklee College of Music so that he can stay in her vicinity. During his time at the college, he is partnered with a female student named Julia (portrayed by Cassidy Rae), who regularly heard his piano music from his apartment window whenever she would walk by, and an attraction develops between them. Janice is less than thrilled by this development, not only because of Tony’s increasing assertion of an independent social life but also because of her fears of having his heart broken due to his vulnerability as a person with autism.
The film takes a unique perspective in its examination of autism through portraying a protagonist who is both blind and autistic. Most autism-themed films tend to focus only on protagonists who are on the autism spectrum and do not have any other disability. However, through the depiction of Tony DeBlois, Journey of the Heart sheds significant light on the dual challenges that blind individuals on the autism spectrum face. Not only do they struggle with the social and developmental difficulties of autism, but at the same time blindness inhibits their ability to make their way around the world in a physical sense. Consequently, blind autistic individuals must acquire the necessary training and social support fitted to both their visual and developmental challenges so that they can lead successful independent lives.
Well-crafted and featuring sensitive performances from its leading cast members, Journey of the Heart offers an intriguing look into the life of a blind autistic musical prodigy and the challenges that he navigates in order to succeed. Furthermore, it gives profound insight into the struggle of his mother to ensure her son’s success as a piano student and her subsequent challenge of letting him go so that he may pursue his dreams. Many parents of autistic children find it extremely difficult to make this sacrifice due to concern that autism will inhibit their ability to function independently, and in Janice’s case this is complemented by the fact that Tony faces the additional challenge of blindness. But through giving the necessary support and mustering personal willpower, parents can ensure that their sons or daughters on the spectrum will make this transition successfully, and Journey of the Heart articulates that message in a powerful and moving manner. Hopefully parents who watch this film will take its message to heart.
Meet Tony DeBlois
I am an artist on the autism spectrum. I received an MA specializing in Civil War/Reconstruction history at the University of North Carolina, Greensboro, and I have been drawing hundreds of Civil War-themed pictures since the age of five and a half. As a person with Asperger’s Syndrome, I have a very focused set of interests, and the Civil War is my favorite historical event within that range of interests. It is therefore my fervent desire to become a Civil War historian and have my Civil War artwork published in an art book for children. I am also very involved in the autism community and currently serve as the President/Head Officer of Spectrum at UNCG, an organization I founded for students on the autism spectrum. The goal of the organization is to promote autism awareness and foster an inclusive community for autistic students on the UNCG campus. The group has attracted some local publicity and is steadily gaining new members, and we shall be hosting autism panels for classes on campus in the near future.
