Renewal and Rediscovery: Insights From Memoirs of Illness and Disability An Annotated Bibliography Compiled by Ray D. Kent was originally published on the ASHA website to accompany an article in the Asha magazine, Summer 1998, p. 22, "Renewal and Rediscovery: Insights From Memoirs of Illness and Disability."
*Couser, G. T. (1997). Recovering bodies: Illness, disability, and life writing. Madison, WI: University of Wisconsin Press. Examines writing by and about people with illness or disability (HIV/AIDS, breast cancer, deafness, and paralysis). It also considers the genre of narratives by the ill and disabled.
*Daniels, A. (1997/October). I'm ill, therefore I'll write. National Review, 49, 50B52. As might be guessed from the title, this brief article does not welcome the sick to write. The author does not identify redeeming values in this literature and apparently wishes that those who get sick would suffer in silence.
*Hawkins, Anne Hunsaker. (1993). Reconstructing illness: Studies in pathography. West Lafayette, IN: Purdue University Press. This thoughtful book examines a literature the author calls "pathography."
*Kleinman, A. (1988). The illness narratives: Suffering, healing and the human condition. New York: Basic Books. In one of the earlier books on the subject, the author draws attention to books that recount the personal experience of illness.
*Shaw, Barrett (Ed.). (1994). The ragged edge: The disability experience from the pages of the first fifteen years of the disability rag. St. Louis: Advocado Press. Stories and poems about disability.
NEUROLOGICAL DISORDERS IN ADULTS: STROKE, EPILEPSY, BRAIN INJURY
*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 books is testimony to the powerful drive of communication.
*Fishman, Steve. (1988). A bomb in the brain: A heroic tale of science, surgery and survival. New York: Scribner. The author recounts his personal confrontation with a brain hemorrhage, neurosurgery, and subsequent epilepsy.
*Gardner, Howard. (1974). The shattered mind. New York: Alfred A. Knopf (reprinted in 1976 by Vintage Press, New York). Gardner describes his purpose in writing this book: "to demonstrate that a host of critical issues in psychology can be illuminated by a thoughtful study of the behavior and testimony of brain damaged individuals." Among the disorders represented are aphasia, alexia, and memory impairment.
*Klawans, Harold L. (1989). Toscanini's tumble and other tales of clinical neurology. New York: Bantam Books. A neurologist describes a number of patients and what he learned from them about neurological disorders and the people who contend with them. Klawans and Oliver Sacks are prominent contributors to a genre in which specialists recall their most interesting clinical encounters, mixing neurology with reflections on human lives.
*Klawans, Harold L. (1990). Newton's madness. New York: Harper and Row. Continuing very much in the vein of Toscanini's tumble. Klawans describes patients with a variety of neurological disorders.
*Laplante, Eve. (1993). Seized. New York: Harper Collins. The author considers temporal lobe epilepsy as a medical, historical, and artistic phenomenon through an account of the lives of three people with this disorder: a corporate executive, a small-town attorney, and a former prison inmate and mental patient.
*Martin, Russell. (1986). Matters gray and white: A neurologist, his patients and the mysteries of the brain. New York: Henry Holt and Co. The author uses his clinical experiences to tell about the practice of neurology, about how neurological disorders affect people, and about what these disorders reveal about the brain.
*Noonan, David. (1989). Neuro-(Life on the frontlines of brain surgery and neurological medicine). New York: Simon and Schuster. The author accompanies a neurologist as he diagnoses and treats a variety of disorders. Noonan tells the story from the point of view of both the doctors and patients. The book offers personal insights and a considerable amount of information on diagnosis and treatment of neurological disorders.
*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.
*Sacks, Oliver. (1970). The man who mistook his wife for a hat and other clinical tales. New York: Summit Books. Sacks describes his experiences with a variety of patients. Written with wonderment and affection, the book also teaches about the practice of neurology and neurological disorders. The author introduces the reader to individuals with sensory agnosia, aphasia, autistic savant syndromes. Tourette's syndrome, and several other neurological conditions.
*Sacks, Oliver. (1990). Awakenings. New York: Harper Perennial. Sacks describes the results of L-Dopa medication given to a number of people afflicted with parkinsonism resulting form encephalitis lethargica, a kind of sleeping sickness that often left patients in catatonic states. L-Dopa at first seemed like a miracle, but for many of the patients the miracle dissolved into disappointment and frustration. This book was the basis for a movie of the same name, which starred Robert De Niro and Robin Williams.
*Sacks, Oliver. (1995). An anthropologist on Mars. New York: Vintage Books. Sacks continues his fascination with neurological disorder and human creativity, this time examining the lives of a colorblind painter, a man with frontal lobe syndrome, a surgeon with Tourette's syndrome, a man with visual agnosia, an autistic savant, and a woman who has overcome many of the consequences of autism.
*Sylvester, Edward J. (1993). The healing blade: A tale of neurosurgery. New York: Simon and Schuster. This book, which reads rather like a journalistic novel, is mostly about a neurological institute in Phoenix and a neurosurgeon named Dr. Robert Spetzler. The author, who spent hundreds of days and nights at the Institute, describes surgical procedures and the surgeons who perform them.
*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. 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.
*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 brain-injured soldier to overcome impairments of memory, vision, reading, and writing. The solider, 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.
*McBride, Carmen. (1969). Silent victory. Chicago: Nelson-Hall. A personal narrative of a person with aphasia.
*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.
*Wulff, 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.
DEAFNESS AND HEARING LOSS
*Bragg, Bernard. (1989). Lessons in laughter: The autobiography of a deaf actor (as signed to Eugene Bergman). Washington, DC: Gallaudet University Press. Bragg, a deaf child born to deaf parents, is Deaf, not deaf, where capitalized letter denotes a linguistic and cultural minority. The author is an accomplished actor in deaf drama. Interestingly, the title derives in part from the fact that deaf children are sometimes taught to laugh in a way that is acceptable to the hearing worldCan example of how deaf individuals are asked to conform to the hearing culture.
*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 education tradition. The book touches on the lives of several individuals who are deaf.
*Gibson, William. (1960). The miracle worker. New York: Bantam Books. A play based on the story of Helen Keller and her teacher, Annie Sullivan. It was made into a famous movie.
*Groce, Nora E. (1985). Everyone here spoke sign language. Cambridge, MA: Harvard University Press. For over 200 years, Martha's Vineyard Island had a high incidence of hereditary deafness. As a result, nearly all the residents, both hearing and deaf, learned sigh language. This book is a compilation of oral history gathered from about 50 witnesses.
*Keller, Helen. (1961). The story of my life: The autobiography of Helen Keller. New York: Dell Books. Keller writes her own story. Includes selected correspondence.
*Lane, Harlan. (1984). When the mind hears: A history of the deaf. New York: Random House. As the title indicates, this book tells the history of the deaf and their culture. The author argues that American Sign Language is the preferred language of the 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 (reprint). 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.
PSYCHIATRIC, DEMENTING, AND DEVELOPMENTAL DISORDERS
*Andreasen, Nancy C. (1985). The broken brain: The biological revolution in psychiatry. New York: Harper and Row. The author, a psychiatrist and former professor of English, describes how psychiatric disorders are increasingly understood and treated with the methods of biology. The book includes a brief history of psychiatry, a description of major psychiatric disorders, and a review of psychiatric treatment methods.
*Axline, Virginia M. (1964). Dibs: A search for self. New York: Ballantine Books. The author describes the use of Play Therapy with an apparently autistic boy. The intervention is judged to be quite successful.
*Biklen, Douglas. (1993). Communication unbound. Teacher's College Press. The advocates of facilitated communication claim that this technique can open a world of communication to autistic children with other communicatively impaired individuals. This book tells about several personal experiences with facilitated communication, and about he controversy surrounding this method.
*Craig, Eleanor. (1972). P.S. you're not listening. New York: Penguin. An account of a special educator's experiences with five children who have a variety of learning disabilities and behavioral problems. She relates the day-to-day life in her classroom.
*Curtiss, Susan. Genie: A psycholinguistic study of a modern-day "wild child." Genie, the girl in the book's title, was studied by a number of specialists after she was removed from a life in her parents' home. She had been kept chained to a potty chair in an isolated room and was discouraged from any attempts at communication. Curtiss wrote a PhD dissertation based on Genie's life and especially her language development. (See R. Rymer's Genie for another point of view on what happened to Genie and why.)
*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, decreased understanding, and diminished self-control.
*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.
*Gesell, Arnold. (1941). Wolf child and human child: Being a narrative interpretation of the life of Kamala, the Wolf Girl. New York: Harper. This book recounts the story of Kamala, a girl who allegedly was raised by wolves until she was captured by villagers. She initially demonstrates a number of wolf-like behaviors. Her progress in learning social skills and language is described.
*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.
*Grandlin, 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.
*Harris, George. (1983). Broken ears, wounded hearts. Washington, DC: Galllaudet College Press. A handicapped child is born to a young married couple; the father tells of their struggles to help the child in the face of many difficulties.
*Hart, Charles. (1989). Without reason: A family copes with two generation of autism. New York: Harper & Row. Both the author's older brother and son were diagnosed with autism.
*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.
*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.
*Lane, Harlan. (1976). The Wild Boy of Areyron. Cambridge, MA: Harvard University Press. This book combines an account of a feral child discovered in France with a discussion of the education of the deaf.
*Martin, Russell. (1994). Out of silence. New York: Henry Holt & Co. The author's nephew Ian became autistic after his brain was damaged by a reaction to a routine vaccination for diphtheria, pertussis, and tetanus. The book is a graphic and scholarly account of autism but it also explores the essence of language learning—the child's attempt to cope with the objective world.
*McKee, John D. (1955). Two legs to stand on. New York: Appleton-Century-Crofts. A narrative of a man with cerebral palsy.
*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.
*Murray, J. B., & Murray, Emily. (1975). And say what he is: The life of a special child. Cambridge, MA: MIT Press. The parents of a "special child" who has a severe developmental disability write of their experiences and their growing recognition of the boy's personality and meaning to their lives.
*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.
*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.
*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.
*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.
*Williams, Donna. (1992). Nobody nowhere. New York: Avon Books. This book chronicles the life of a woman from here 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."
*Williams, Donna. (1994). Somebody somewhere. New York: Times Books/Random House. In this sequel to Nobody Nowhere, Williams discusses the idea that autism is not a blunted awareness of the environment but rather a nearly overwhelming awareness of it. The withdrawal characteristic of people with autism is really an attempt to cope with a menacing barrage of sensory stimuli. The author's many talents include painting, composing, singing, playing guitar, and writing. As the reviewer Deborah Tannen exclaimed, "And oh, can she write" (The New York Times Book Review, April 3, 1994, p. 25).
*Yamada, Jeni E. (1993). Laura. Cambridge, MA: MIT Press. Despite serious mental retardation (an IQ of about 40) Laura, the subject of the book, made considerable progress in language development. Yamada describes Laura's language abilities from a specialist's point of view. It is helpful if the reader has a background inlinguistics or language disorders. Laura's accomplishments in learning language are interpreted within a modular theory of language.