The Dignity of Expectation
My first experience associated with what would become known as “assistive technology” was in 1972. While an undergraduate biology major at Humboldt State College, I responded to an appeal on the local radio station for volunteers to assist in a rehabilitation program being conducted for a young boy named Freddie who had suffered brain injury as the result of a prolonged high fever. Freddie was left with no control of his body, no reliable means of communication, and an unknowable level of cognitive functioning.
Freddie’s mother had recently found information about a novel therapy program that she hoped might help her son. The program was based upon the Doman-Delacato Patterning method. A patterning table was used to guide repetitive motions that were supposed to provide Freddie with the sensory input related to crawling. That stimulation was theorized to produce improvements in neuro and motor functioning.
Freddie endured motion sickness and physical discomfort from moving limbs that had not moved in a long time. There were some benefits in terms of his passive range of movement and his tolerance for being moved and positioned, but there were no miracles for Freddie. (The theory and method have long since been discounted due to the absence of any empirical support and the American Academy of Pediatrics has issued warnings about the technique.)
Looking for another way to help, using the limited tools and materials available to me in my college dorm, I constructed a mobile of Sesame Street characters to hang over his bed to provide Freddie with some visual stimulation and encouragement to reach or move.
There was no knowing whether Freddie even perceived this stimulation and there was never any motor response. My time as a volunteer ended, but Freddie’s mother’s dedication to his care and treatment was ongoing. Nine years later I graduated with my MA in Psychology and a School Psychologist Credential. Over the course of my education at Humboldt State I periodically observed Freddie and his mother arriving at on-campus OT, PT, Speech Therapy clinics.
My silly Sesame Street mobile and Freddie’s mother’s heroic efforts to find him therapy and treatment served to instill in me a fundamental belief in ensuring that programs for Individuals, even those with the most profound disabilities, must provide them with the dignity of expectation, expectation that progress may be elusive but may also be possible.
Many times, across my now 50 years of experience, I have had the privilege to experience events in my own life, in the lives of students, and across programs that have continued reinforce my belief in the “Dignity of Expectation”.