By Judith Maginnis Kuster
Recently I received a request: "I am in a Special Education class where we are learning about communication disorders and how they affect people. Do you have any stories about someone with a communication disorder? I believe something like that would help all future teachers." Stories about people challenged with various disabilities were important resources that drew me into the field of communication disorders in the first place. I read, and re-read, books like Virginia M. Axline's Dibs in Search of Self, Joanne Greenberg's In This Sign, Richard D'Ambrosio's No Language but a Cry, Mary MacCracken's Circle of Children-- and many more..
Stories from our clients are valuable tools to help clinicians build partnerships with clients and their families. They also serve to inspire us and others on our caseload, and provide healing power to those who tell them. Ellen-Marie Silverman wrote, "If we want to know our patients and to partner with them, we will invite them to tell us their stories of pain and hope in their own way and in their entirety" (The ASHA Leader, Feb. 12, 2008, "Applying Narrative Techniques", p. 46.).
Personal stories can be found in books, journal articles, popular magazines, movies, and on the Internet. I often assign my students to read personal accounts written by consumers, or to watch a movie depicting a person with a disability. David Greenhalgh's "Films Involving Disability" (www.disabilityfilms.co.uk/) is an excellent site, listing over 2,500 feature films, annotated and grouped by disability.
Many books feature consumers of speech-language pathology and audiology services. Ray Kent published an interesting article "Renewal and Rediscovery: Insights From Memoirs of Illness and Disability," (.ASHA Summer 1998, p. 22) that included an annotated bibliography. Kent allowed me to let me put many of the annotated references online and continue adding to it -- "Our clients and their families speak: Bibliography of Books Written by Consumers Served by Speech-Language Pathologists and Audiologists" (www.mnsu.edu/comdis/kuster2/library/mybibliography.html).
The award-winning French film, The Diving Bell and the Butterfly, based on Jean-Dominiques Bauby's autobiography by the same title, was published in 1997, two days before Bauby died. The book and film tell Bauby's story of Bauby's brain-stem stroke, which resulted in locked-in syndrome. Dictating his remarkable story, letter by letter, by blinking his left eye when his assistant came to the correct letter of the alphabet; it provides lessons and inspiration to others, and provided purpose and healing for the author. (Check the movie trailer and the prologue to the book online at http://www.thedivingbellandthebutterfly-themovie.com/).
Two additional stories of brain stem stroke survivors first published in the British Medical Journal are online:
A few examples of Internet accounts written by consumers
Judith Kuster is a professor in the Department of Speech, Hearing, and Rehabilitation Services at Minnesota State University, Mankato. Contact her at firstname.lastname@example.org. All of Kuster's Internet columns are available in HTML format with active links (www.mnsu.edu/comdis/kuster4/leader.html), although URLs change and there is no guarantee that links from previous articles are still functional.
Kuster, JM, Client Stories: A Valuable Tool for Clinicians, ASHA Leader, March 25, 2008, p. 38-39.