Summary:

The book's chapters derive from a conference entitled "Representing Autism: Writing, Cognition, Disability" held in 2005. Contributors are scholars of English, communication studies, psychology, and other disciplines; some are on the autism spectrum themselves or are parents of autistic people. The book attempts to address what editor Mark Osteen in his introduction cites as a deficit in the field of disability studies, namely that the field has ignored cognitive disabilities. Osteen notes that autism is a spectrum not only among people but within individuals: "any given autistic person's abilities will occupy different locations on [the spectrum] at different times" (7) but a severely autistic person is not merely "different." The editor also addresses the question of self- representation, arguing that "we must strive to speak not for but with those unable or unwilling to communicate through orthodox modes" (7).

The book is divided into four sections: Clinical Constructions, Autistry, Autist Biography, and Popular Representations. Clinical Constructions includes a chapter on Virginia Axline's work with the boy, Dibs (see Dibs: In Search of Self in this database), a child who is now thought to have been autistic; and a chapter on how Bruno Bettelheim convinced the world of science and the public that autism was caused by parental behavior, especially that of mothers ("refrigerator mothers") and that he knew how to cure it. The essayists show how these two psychologists constructed a persona of omnipotence that enabled them to appear to "save" autistic children. Chapter 3 reviews the history of autism as a named condition and contextualizes it.

Chapters in the section on Autistry discuss the mental world of people with autism. Patrick McDonagh (chapter 4) postulates that "the capacity to perceive autism in the 1940s may be connected to the proliferation of modern, and modernist, notions of the self" (102) -- for example, isolation and alienation, and "the removal of referential and conventionally communicative functions from language" (111) that appear in the works of Gertrude Stein, Virginia Woolf, James Joyce. Subsequent chapters apply theories of information processing (chapter 5), metaphor and metonymy (chapter 6), and narrative (chapter 8) to an understanding of the mental world of autistic individuals, and chapter 7 discusses poetry written by autistics.

The section on Autist Biography concerns memoirs written by parents of autistic children. Deborah Cumberland contrasts the memoirs of several mothers with one written by a father (chapter 9) and Sheryl Stevenson (chapter 10) writes about the rhetorical strategies that mothers use "to negotiate contradictions of motherhood that are exacerbated by autism and their own privileged abilities" (199).

The essays in the section, Popular Representations, concern several films and Mark Haddon's novel, The Curious Incident of the Dog in the Night-Time (see annotation). Anthony Baker presents an "autistic formula" used in films and notes that the plots hinge on the way a central character who is not autistic uses the "special powers" of the autistic character, thereby robbing the latter of agency (Chapter 12). Stuart Murray is also critical of how films portray autistic people (Chapter 13). Phil Schwarz, father of a child with Asperger's and an Asperger's adult himself writes about four films ( Thirty-Two Short Films About Glenn Gould,  Smoke Signals, Breaking the Code, The Secret of Roan Inish) he uses to raise the consciousness of autistic peers and to promote self-esteem in the face of society's attitudes toward autistic individuals (Chapter 14).

The authors of chapters 15 and 16 come to different conclusions about the novel, The Curious Incident of the Dog in the Nighttime. Gyasi Burks-Abbott, "a 34 year-old African-American male on the autism spectrum" (303), criticizes the novel for perpetuating stereotypes and for "relegat[ing] the autistic to otherworldliness while establishing a non-autistic author like himself as the necessary medium between autistic and non-autistic reality" (295). James Berger, on the other hand, argues that Haddon uses the protagonist Christopher to "explore questions about language and social relations" (fn1, 286) and observes that Haddon understands human neurological features as a continuum.

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Summary:

The author, a young physician, guides the reader in temporal sequence through her years as a medical student, medical resident at several levels, and into the final days of her formal training. The format of the work is anecdotal, that is, a series of memorable patient encounters that seem to shape the writer's developing attitude toward her chosen profession. The precise time frame of the experiences is not clear, but this is an acknowledged story of growing into the practice of medicine as a trainee at Bellevue Hospital.

In describing her interactions with her patients, Dr. Ofri reveals her own doubts about her ability to accomplish some of the things expected of her as "healer." As she grows more confident with experience, she begins to challenge some of the rituals in which medical education seems mired. Each of the chapters is a self-contained story focused on a particular patient, some of which have been published previously as free standing essays. The composite is the physician-writer's personal narrative of her own growth and change.

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This book is exactly what it claims to be in the title. Dr. Ofri gives us fifteen clinical tales, each of which describes a lesson she has learned from a patient or from her own experience as a patient. It is an extension of her first book, Singular Intimacies: On Becoming a Doctor at Bellevue (see this database) and relates to her experiences after she completes residency training at Bellevue Hospital in New York City, to which she eventually returns as a staff physician. Three of the stories are examples of how a physician experiences the patient role, including one in which she relates an early personal experience to that of a patient she cares for ("Common Ground").

Since Ofri served as several locum-tenens, some of the stories take her to rural communities and small towns but most concern experiences with patients at Bellevue in clinics or in the hospital. She also discusses the challenges and limitations of teaching the next generation of doctors at Bellevue ("Terminal Thoughts").

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The author of this memoir creates a generally temporally sequential tale of the trials of a family fraught with a series of personal tragedies.  The tale is told by Jessica, the eldest of three daughters.  One of her sisters (Sarah) has a rare genetic disorder which affects the daily life of the family as she requires significant medical attention over the nearly three decades of her life.  Into this demanding  drain   on the young family comes the totally unexpected diagnosis of acute lymphocytic leukemia leveled at the youngest sister (Susie).  Susie becomes acutely ill and over a short period of time, dies.

The reader then enters the drama of the dissolution of the family: a father who becomes dysfunctional and unable to assist and a mother who must pick up the remnants and move on with the surviving siblings.  Sarah and Jessica  move forward and live lives into their young adulthoods.  Then, suddenly, Sarah dies.  The remainder of the tale has to do with the author's assessment of the past and of her future.

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Summary:

The Crimean War (1853-1856) holds a place in the history of medicine, specifically, the history of nursing. For as the British public read the 1850s Times reports about the total lack of care suffered by their wounded in this conflict, a British nurse, Florence Nightingale, volunteered to recruit a team of nurses to aid the suffering men. The Times created a relief fund for the sick and wounded, and Queen Victoria, an enthusiastic supporter of this war against Russia, sponsored an even larger fund. Female nurses had a reputation for drunkenness and promiscuity. Nightingale made it a point to recruit nuns and women from the lower classes who would be more manageable than educated, upper class women. Three black nurses applied, including Mary Seacole, but they were rejected.

The Turks, British allies, allowed Florence Nightingale the use of their army barracks at Scutari, across from Constantinople: "'I have been well acquainted with the dwellings of the worst parts of most of the great cities of Europe,' Nightingale wrote,' but have never been in any atmosphere which I could compare with that of the Barrack Hospital at night'" (111). Open sewers ran beneath these vermin-infested structures  which were crammed with sick soldiers lying on the filthy floor. There were no supplies and few doctors. Typhus, typhoid, cholera or dysentery killed many patients. Nightingale's meticulous statistics showed alarming escalation of mortality rates; she believed in cleanliness and fresh air but not in the germ theory of disease. When comparing her numbers with those of other military hospitals, Nightingale understood that soap alone would not save the men.

Rappaport describes the nursing offered by army wives, widows and other volunteers, including French nuns. The women's living conditions, especially during pregnancy and childbirth, often resulted in sickness and death. Others volunteered as cooks, including Elizabeth Davis who alleged that while "...she and the other nurses dined on the stewed-up, tough old meat used to make soup for the patients, Nightingale ‘had a French cook, and three courses of the best of every kind of food ... served up everyday at her table'" (168-169).

Nightingale became famous as the heroine of the Crimean War. She is known now as the founder of professional nursing. Recent research has questioned whether Nightingale was the real angel of the Crimea. Rappaport investigates the work of the Jamaican nurse, healer, and entrepreneur Mary Seacole, one of the 3 black nurses rejected for service in the Crimean War. She financed her journey to and stay in the Crimea herself. She built a British Hospital in the Crimea, and treated the wounded at Balaklava there and in the field. The soldiers called her Mother Seacole because she cared for their material and spiritual needs. She sold gin and raki and home-cooked meals, and went bankrupt because too generous with credit. Seacole recouped her losses and achieved bestseller status with her memoir, Mrs. Seacole's Wonderful Adventures in Many Lands (1857), the first memoir by a black woman from Britain.

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Wasted is the story of a young woman, now in her early twenties, that recounts her fourteen years spent "in the hell of eating disorders," having been bulimic by the age of nine, anorexic at fifteen. The book is also a chronicle of her six hospitalizations, one institutionalization, relentless therapy, the back and forth between being "well" then "sick" then "well" then "sicker." The author dismisses most common notions of persons with eating disorders, instead revealing a complex set of causes, some familial, some cultural, some wedded to her own personality.

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Summary:

Prozac Nation is Wurtzel's memoir of her depression, which she traces from the age of 11 to her senior year in college in chapters marking different phases or manifestations of her illness. The book situates her illness squarely within her family dynamics where she found herself the "battlefield on which [her] parents' differences were fought," and describes in excruciating detail her inner life that at any given time was marked with a "free-flowing messy id" to nihilism, numbness, rage, and fear, ultimately leading to a suicide attempt. The last few chapters chronicle her slow "recovery," due to her conflicted relationship with psychopharmacology and an extraordinary psychiatrist.

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Summary:

Because this lucid, rich, and incisive book has not, as yet, been published in the United States, it has not acquired the readership it deserves. For those teaching Medical Humanities or those interested in broader or more global stories and perspectives about physician training, practice, and experiences, Helman’s most recent publication should be considered.

Part One (“Setting Out”) begins in South Africa where Helman’s family, comprised of a dozen doctors, has lived for generations and where his own medical studies occurred. As a child, he accompanied his father on rounds while other children spent holidays at the beach. Before long he discovered how hospitals, during the madness of Apartheid, were to “some extent a distorted mirror-image of the world outside” (3). Appalled by the differences in care and treatment, the keenly aware young man kept notes. His vivid observations of the harsh context of social injustices provide an unequivocal, eloquent, and disturbing critique of medicine then and there. His acute observations of physician behaviors and indigent populations in the city and in the bush contribute, as readers discover in later chapters, to the author’s expanded and compelling interests in cultural anthropology.

Part Two (“The Family Doctor”) leads to London. “After all the heat and light and space of Africa, London—with its low leaden sky and constant drizzle—was like living inside a Tupperware box, one stored deep inside a refrigerator” (47). In the 60s Helman’s migration required an adjustment to a world of technology and order, where as a family practitioner, he had become, in fact, a suburban shaman. In any society, patients wanted “relief from discomfort, relief from anxiety, a relationship of compassion and care, some explanation of what has gone wrong, and why, and a sense of order or meaning imposed on the apparent chaos of their personal suffering to help them make sense of it and to cope with it” (xvi).

Gradually Helman saw connections between the role of family physician and traditional healer: both involved an understanding of “not only a body’s internal equilibrium but also the equilibrium of the patient’s relationships with the world he or she lives in and how treatment should aim not only to treat the diseased organ but also to restore the patient’s life that equilibrium of relationships” (xvii). His encounters with patients and the stories they reveal suggest how important these often overlooked connections are and why they ought to be included in medical training and practice.

By the time readers reach Part Three ("States of the Art”), the author has moved into broader realms of thinking, in which medicine and illnesses are examined anthropologically. After 27 years of clinical practice Helman’s white coat and stethoscope are placed on a hook. Now, as a credentialed anthropologist at University College London, his larger lens allows for sustained scrutiny of the complexities, ambiguities, and nuances in such chapters as “Grand Rounds,” “Hospitals,” “Placebos,” “Third Worlds.” Helman’s range of experiences, multi-disciplinary training, intellectual conclusions, and abundant common sense argues for techno-doctors to learn from holistic practitioners. Whether devastating or humorous, the critiques reflect not just care provision but shared human capacities: the insights are thoughtful and fresh and very worthwhile.

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Summary:

Dr. Paul Brand, who grew up son of English missionaries to South India, achieved world renown for his research on leprosy and related research on the dynamics of pain. This book, one of several of his reflections on physiology, combines autobiography, stories of research, and reflections on pain and pain management. The three topics roughly correspond to three discrete sections.

It opens with a story of the early death of a child with a rare neurological dysfunction that made her insensitive to pain. Brand's long work with victims of leprosy in India and then in Carville, Louisiana, gave him wide exposure to the consequences of life without adequate pain. Having spent 27 years in India, 25 years in England, and 27 years in the U.S. before writing this retrospective, many of his reflections include observations about cultural variables in perception of pain, how pain is communicated and managed, and how people deal philosophically with the problem of pain.

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Summary:

In December 1995, at the age of 43, the author suffered a sudden and severe stroke in the brain stem and emerged from a coma several weeks later to find himself in a rare condition called "locked-in syndrome" (LIS). Although his mind was intact, he had lost virtually all physical control, able to move only his left eyelid. There was no hope of significant recovery. This memoir, composed and dictated the following summer, consists of Bauby's brief and poignant reflections on his condition and excursions into the realms of his memory, imagination, and dreams.

The composition of this book was an extraordinary feat in itself. Unable to write or speak, Bauby composed each passage mentally and then dictated it, letter by letter, to an amanuensis who painstakingly recited a frequency-ordered alphabet until Bauby chose a letter by blinking his left eyelid once to signify "yes." In what was likely another heroic act of will, Bauby survived just long enough to see his memoir published in the spring of 1997.

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