Nationally, more than one million Americans are living with aphasia. Aphasia is more prevalent than Parkinson’s disease, cerebral palsy, or muscular dystrophy, yet public surveys show that only one in 100 people know about aphasia. If aphasia is so prevalent, why are so few people aware of this condition? The answer is simple. How can people with aphasia advocate for themselves and increase awareness when their central problem is communication?
Fortunately advances in technology are providing new opportunities for people with aphasia to speak up. Individuals with aphasia who attend the Snyder Center for Aphasia Life Enhancement, a community treatment center in Baltimore, are dispelling the notion that they are unable to advocate for themselves. Members who attend the center use an array of technologies to enable their ability to express their thoughts and reveal their competencies and during Stroke Awareness Month they were, indeed, heard.
Forty members with aphasia who attend SCALE decided to increase awareness about aphasia in Baltimore through the arts. On May 4, SCALE hosted a play about aphasia entitled “Nightsky.” The SCALE community partnered with the Hugh Gregory Gallagher Motivational Theatre, a non-profit organization that raises public awareness of disability issues and discrimination in our society through dramatizations of real-life and fictionalized experiences. SCALE members invited the group to perform “Nightsky” to their friends, neighbors and folks from the larger community. Despite severe communication impairments they sold tickets, wrote presentations and presented to more than 135 guests.
Some members read their written messages orally. Those who have limited spoken output used programs such as WordQ, and Lingraphica to formulate their messages. Several SCALE members used the Vast Program to enable them to fluently produce the materials that they had written. The Vast Program is an innovative research-based application of video technology designed to facilitate and improve communication abilities for speech-impaired individuals. Following close-up video of mouth movements combined with visual and auditory cues allows individuals to readily produce speech. SpeakinMotion LLC has made this approach available to individuals with motor speech disorders such as aphasia and apraxia through its speech therapy apps and custom recording service.
SCALE participant, Howard Snyder, presents information about “Nightsky” to an audience.
Learning to use these programs, creating their messages and practicing what they intend to say required weeks of preparation and hard work by stroke survivors with aphasia. But, the hard work paid off when they were able to deliver their unique messages themselves to advocate for themselves and to educate the public about the effects of stroke on communication and quality of life.
Denise McCall, MA, CCC-SLP, is the director for SCALE in Baltimore. She can be reached at firstname.lastname@example.org.