Robert Rummel-Hudson, author of “Schuyler’s Monster: A Father’s Journey with His Wordless Daughter,” gave a talk on Tuesday evening in Gault Recital Hall.
Rummel-Hudson is the father of a girl with a rare condition called Bilateral Perisylvian Polymicrogyria, a complicated disease characterized by a certain amount of small gyri (convolutions in the surface of the brain). Among several developmental delays and other symptoms, it’s most observable weapon is that it renders the patient unable to speak.
Rummel-Hudson’s book tells the remarkable story of Schuyler’s (now 13 years old) early childhood. The book explores when he and his wife slowly became aware that Schuyler was different, and how they were thrown into a terrifying world of many barriers and passionate advocacy.
Schuyler uses an Alternative and Augmentative Communication (AAC) device in order to communicate. While the range of types and functions of these devices is quite expansive, the most conventional model is a tablet-sized device with picture menus that people with speech and language impairments navigate in order to express what they need to say. The device then typically pronounces the input words and sentences. With the current technology, it is possible to access thousands of concepts with two to three strokes.
Of course, this type of device is only functional if the user has fine motor abilities and typical language skills. Thousands of variations exist for many different patients to accommodate convenient ways to make selections in order to communicate efficiently.
Schuyler and her parents have experimented with various devices to find the one that is right for her—currently, she uses a first-generation iPad with the “Words for Life” app that was designed by Prentke Romich, a large AAC manufacturing company located here in Wooster.
Rummel-Hudson’s talk focused on the changing worldviews that are vital—with the old views being the only real remaining obstacle – to Schuyler’s ability to function normally.
He hopes and expects that the day will come in his lifetime when children and adults with disabilities “aren’t just tolerated and pitied” but become “part of the fabric” of the functional world.
Rummel-Hudson mentioned specific issues such as the use of the word “retard” and its effects on expectations for Schuyler’s progress. He also discussed his political views and his religious identity (or lack thereof) in an emotional speech.
Finally, he expressed an optimistic attitude for a “generational shift,” which is already in motion, thanks to the integration of children with disabilities into mainstream classrooms and an emphasis on interaction with their peers. He believes that the “primary beneficiaries” of Schuyler’s school system are the neurotypical students who get to know the children with disabilities. According to Rummel-Hudson, the next great civil rights movement will focus on the rights of children and adults with disabilities.
Rummel-Hudson admitted that the passionate advocate that he has become would not have surfaced if it weren’t for Schuyler. Nevertheless, he is an immensely devoted father and talented writer and speaker, whose impassioned arguments have the potential to enlighten even those with no previous exposure to people who don’t fit into social norms.
His articulate, hilarious blog, Fighting Monsters with Rubber Swords, is available online at http://www.schuylersmonsterblog.com. His book, Schuyler’s Monster, is currently available in the Florence O. Wilson Bookstore.