Our clients and their families speak
The following includes selections from an annotated bibliography by Raymond Kent (see ASHA magazine, Summer 1998, p. 22, for Kent's article, "Renewal and Rediscovery: Insights From Memoirs of Illness and Disability,") as well as additional books I've found, by persons who may one day be our clients or their support system. Choose one book you haven't read before, in the area of your presentation/paper. If you find a different book you'd like to read this semester, talk to me about it and perhaps we can substitute it. Provide a two page review of the book and summarize it for the class during your presentation.
Stroke and Aphasia
Bauby, Jean-Dominique. (1997). The diving bell and the butterfly. New York: Alfred A. Knopf. Bauby suffered a massive brainstem stroke that left him with locked-in syndrome (nearly completely paralyzed). He composed this book by using eye blinks to signal the letters one by one. His book is testimony to the powerful drive of communication.
Berger, Paul E. and Staphanie Mensh, (1999) How to Conquer the World with One Hand. . . and an Attitude Positive Power Publishing (can be ordered online at http://www.positivepowerpublishing.com/)
Ewing, Susan Adair, & Pfalzgraf, Beth. (1990). Pathways. Detroit, MI: Wayne State University Press. The authors, two speech-language pathologists, retell incidents in the lives of six families who must cope with stroke and aphasia.
Hodgins, Eric (1964). Episode: Report on the accident inside my skull. New York: Atheneum. Following a stroke, the author experienced aphasia and other sequelae. This book describes his depression and frustration with various treatments.
Johnson, Fred K. (1990) Right hemisphere stroke. Detroit, MI: Wayne State University Press (1990). This is apparently the first published account of an individual who experienced a right-hemisphere stroke. The author discusses personality changes and disorientation. He also considers the possibility that some language functions are based in the right hemisphere.
Knox, David R. (1985). Portrait of aphasia. Detroit, MI: Wayne State University Press. Knox writes about his wife's aphasia, especially treatment and recovery. He offers a detailed account of the emotional and physical challenges that aphasia can present.
McBride, Carmen. (1969). Silent victory. Chicago: Nelson-Hall. A personal narrative of a person with aphasia, written by his wife.
Moss, C. Scott. (1972). Recovery from aphasia: The aftermath of my stroke. Urbana, IL: University of Illinois Press. A personal account of aphasia and the recovery process.
Neal, Patricia, As I Am: An Autobiography, (1988), NY, New York: Simon and Schuster. The story of a movie star who survived a serious stroke.
Parr, Susie, Byng, Sally, and Gilpin, Sue. (1997) Talking About Aphasia. Buckingham: Open University Press. An account of the experiences of 50 people with varying levels and severity of aphasia.
Wulf, Helen Harlan. (1973) Aphasia, my world alone. Detroit, MI: Wayne State University Press. Wulf describes her recovery from aphasia, giving a vivid account of her frustrations and victories. Speech-language treatment figures prominently in her recovery, and the speech clinician is gratefully acknowledged.
Traumatic Brain Injury
Bryant, Beverley, (1992) In Search of Wings : A Journey Back from Traumatic Brain Injury, Wings Press (review from Brain Injury Association of Maine "Wings is an intimate, poignant and inspiring look at one woman's courage and determination to face and conquer the challenges of disability. . . . Nothing I have read in my time has moved me as much as this book."
Crimmins, C.E. (2000) Where Is the Mango Princess? Amazon description, "This is a book that Cathy Crimmins never hoped to write: the story of how a tragic accident nearly destroyed her family; of how in a split second their lives were changed forever. In 1996, Cathy Crimmins, her husband, Alan, and their daughter, Kelly, were on an idyllic lakeside holiday when a boating accident left Alan in a deep coma, with severe damage to the frontal lobes of his brain, the area that controls speech, memory, movement, and personality. Where Is the Mango Princess? is the story of what happened to Cathy and her family after Alan woke up."
Luria, A. R. (1972). The man with a shattered world. Cambridge, MA: Harvard University Press. The eminent Russian psychologist A. R. Luria recounts the efforts of a brain-injured soldier to overcome impairments of memory, vision, speaking, reading, and writing. The soldier, named Zasetsky, considered as his most serious disability a loss of "speech memory"--words for him had lost their meaning altogether or had only fragmented meanings.
Osborn, Claudia L, (1998) Over My Head : A Doctor's Own Story of Head Injury from the Inside Looking Out, Andrews McMeel Publishing. Amazon review, "an inspriring story of how one woman comes to terms with the loss of her identity and the courageous steps (and hilarious missteps) she takes while learning to rebuild her life. The author, a doctor and clinical professor of medicine, describes the aftermath of a brain injury 11 years ago which stripped her of her beloved profession. For years she was deprived of her intellectual companionship and the ability to handle the simplest undertakings like shopping for groceries or sorting the mail.
Quinn, Deborah, (1998) Conquering the Darkness : One Woman's Story of Recovering from a Brain Injury, Paragon House
Swanson, Kara L, (1999) I'll Carry the Fork! : Recovering a Life After Brain Injury, Rising Star Press. Review by Marian Bayoff Ilitch. "Kara Swanson's remarkable story provides a very meaningful glimpse into the life of someone who has been changed by a head injury. By sharing her personal triumphs and challenges she gives us a new sensitivity for the countless people and families who focus each and every day on their recoveries. Both Kara and her book are special.
Jezer, M. (1997). Stuttering: A life bound up in words. New York: Basic Books. Despite his participation in several forms of treatment, Jezer did not achieve fluency. His memoir tells of his experiences with dysfluency but also of his successes and satisfactions in professional and personal life.
Love, Robert E (2000) The Bob Love Story: If It's Gonna Be, It's Up To Me, Chicago, Illinois: Contemporary Books. The story of a professional basketball player who stutters.
Murray, Frederick P. (1980). A stutterer's story. Memphis, TN: Stuttering Foundation of America. The experiences of a severe stutterer are retold, together with an account of what is known about this disorder and what is now being achieved by adults and children who stutter.
Shields, David, Dead Languages: An autobiographical novel about a young man who stutters
St. Louis, K.O. (2001) Living with Stuttering: Stories, Basics, Resources, and Hope, Morgantown, WV: Populare. A collection of 25 person stories by people who stutter along with "Some Basics" about stuttering.
Steele, Lise G. Cloutier, (1991) Living & Learning With A Child Who Stutter: From A Parent's Point Of View, NC Press Limited, A Collection of Short Stories written by the mother of a dysfluent teen who has stuttered since the age of 3, with a chapter on recent scientific research into stuttering by David Forster.
Child Language Disorders
Dorris, Michael. (1996). Broken cord. New York: Harper Perennial. A father's story of his adopted son, who has fetal alcohol syndrome. The book is a powerful journal telling how a child's life was affected by his mother's consumption of alcohol. It doesn't offer much in the way of personal redemption or victory, but it honestly shows the legacy of alcohol, a neurotoxin. This book received the 1989 National Book Critics Award and the 1989 Christopher Award.
Grandin, Temple, & Scariano, Margaret M. (1986). Emergence: Labeled autistic. Novato, CA: Arena Press. The first author was diagnosed with autism. She tells the story of her emergence and her adjustments to the nonautistic world.
Grandin, Temple. (1996). Thinking in pictures: And other reports of my life with autism. New York: Vintage Press. The author complements her earlier book (with M. M. Scariano) with further descriptions of her encounters with the world. The book offers rare insights into the cognitive experiences of a person with autism.
Kaufman, Barry. (1976). Son-rise. New York: Harper & Row. A father's journal of an autistic boy, Raun, and his family's attempts to break through his isolation.
Kephart, Beth. (1998) A Slant of Sun: One Child's Courage, W.W. Norton and Company. The story of a young boy with autism and his family's journey.
Park, Clara Claiborne. (1982). The siege: The first eight years of an autistic child (Rev. ed). Boston: Little, Brown. A mother's account of the first 8 years of her autistic daughter's life. This is one of the first personal narratives on autism.
Rymer, Russ. (1993). Genie: An abused child's flight from silence. New York: Harper Collins. As a child, Genie was strapped to a potty chair in an isolated back room of her parents' house. Upon her discovery by the outside world, she was both taught and studied by a number of scientists. This book relates the conflicts and jealousies that ultimately added more tragedy to Genie's life.
Williams, Donna. (1992). Nobody nowhere. New York: Avon Books. This book chronicles the life of a woman from her childhood as a girl who was severely withdrawn and autistic to an adult who received a college education and wrote about the complexities of autism. In his foreword, Bernard Rimland, an authority on autism, notes that the book "sheds light on one of the great mysteries of autism: the process of recovery.
Congenital and Degenerative Disorders
Cribbin, Tom (2000) Proud Owner of a Speech Impediment, Canada: DataPlan (Sarnia) Ltd. A very short book which might be appropriate for another person with this disability, but not recommended as an option to read an autobiographical book about a disability.
Hasse, James R. (1996) Break Out: Finding Freedom When You Don't Quite Fit The Mold, Berea, Ohio: Quixote Publications. A former client of mine tells his story.
McKee, John D. (1955). Two legs to stand on. New York: Appleton-Century-Crofts. A narrative of a man with cerebral palsy.
Sienkiewicz-Mercer, Ruth, & Kaplan, Steven B. (1989). I raise my eyes to say yes. Boston: Houghton Mifflin. Because of severe cerebral palsy, the first author was unable to walk, talk, or feed herself. She was for a time institutionalized with people who were mentally retarded, until her abilities were recognized. The book was a product of collaboration between the first author, who composed brief statements with a communication board, and the second author, a lawyer and advocate for people with disabilities.
degeneratively involved individuals
Doernberg, Myrna. (1989). Stolen mind. Chapel Hill, NC: Algonquin Books of Chapel Hill. A wife writes of her husband's gradual intellectual deterioration due to Binswanger disease, which produces symptoms nearly identical to those in Alzheimer's disease. She describes how her husband's progressive dementia affected their lives and the ways in which she coped with his memory loss,
Malcolm, A.H. (1987). This Far and No More New York: Times Books. This book is about a woman who has ALS and the things she and her family go through.
Rabin, Roni. (1985). Six parts love: One family's battle with Lou Gehrig's disease. New York: Scribner. This biography of the author's father follows him and his family as they face the trials of amyotrophic lateral sclerosis, a degenerative neurological disease. He was diagnosed with ALS in June of 1979 and died in October 1984, conforming to the usual prognosis of death following diagnosis within 3 to 5 years.
Roach, Marion. (1985). Another name for madness. Boston: Houghton Mifflin. A daughter's story of her mother's gradual memory loss and dementia associated with Alzheimer's disease.
Cohen, Leah H. (1994). Train go sorry: Inside a deaf world. Boston: Houghton Mifflin. The author relates the personal experience of deafness, focusing especially on the Lexington School for the Deaf during its attempt to assimilate signing into a historically oral educational tradition. The book touches on the lives of several individuals who are deaf.
Lane, Harlan. (1992). The mask of benevolence: Disabling the deaf community. New York: Alfred A. Knopf. Lane offers a historical review of attitudes toward deaf people in Europe and America. He also argues strongly against the use of cochlear implants in children.
Merker, Hannah. (1994). Listening. New York: Harper Collins. The author experienced a sudden severe hearing loss at the age of 39 because of a skiing accident. She discusses the various difficulties of her hearing loss, perhaps the most significant of which is the stigma attached to it. Interestingly, she assails some medical practitioners as "listening impaired" because of their assumption that she cannot understand what they are saying. Consequently, they ignore her communicative ability. In fact, Merker is quite adept at speechreading. She reflects at length on the difference between hearing and listening.
Sacks, Oliver. (1991). Seeing voices: A journey into the world of the deaf. London: Pan Books. Sacks, a neurologist and prolific author, turns his writing talents to discovering deaf society. He reviews the education of the deaf in America, considers American Sign Language, and reviews the "revolution" at Gallaudet College. He argues passionately for ASL as the preferred language for the deaf.
Sidransky, Ruth. (1990). In silence: Growing up hearing in a deaf world. New York: St Martin's. The author, a hearing child of deaf parents, states, "I stepped between the deaf and the hearing worlds never quite fitting into either, never knowing who I was" (p. 95).
Spradley, Thomas, & Spradley, James. (1978). Deaf like me Washington, D.C.: Gallaudet University Press. The focus of this book is Thomas Spradley's daughter, Lynn Spradley, who was born deaf. With the strong encouragement, if not insistence, of educators, administrators, and physicians, the family endeavored to bring Lynn into the world of oral communication. The book tells of their eventual disenchantment with oralism and their recognition of sign as the means to Lynn's communicative life.
Walker, Lou Ann. (1986). A loss for words: The story of deafness in a family. New York: Harper and Row. Walker describes her experiences as the hearing child of deaf parents. While growing up, she often served as their ears and mouth, thereby living on the sometimes uneasy border between child and adult roles.
Gargan, William, (1969) Why Me? An Autobiography, Garden City, NY: Doubleday. The story of a movie star who had a laryngectomy.
Sowerby, Dot, as told to Betty Schonauer, (1999) Speechless: Living with Spasmodic Dysphonia, Childgo, IL: National Spasmodic Dysphonia Association (www.dysphonia.org).