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:

This is an imaginative documentary film by director-producer Su Friedrich, of her experiences with health problems, physicians, the health-care system, and how these affected her relationship with her female partner over a period of more than two decades. The narrator-subject takes us through her numerous surgeries, hormonal (prolactin) imbalance, and her growing disenchantment with the traditional health-care system.

She films herself: getting dressed into the "humiliating" paper garb prior to being examined by her physician; in exchanges with her various physicians; reading from medical texts and self-help books as she tries to understand her condition(s); taking t'ai chi classes and preparing herbal potions; gardening and doing needle work. As the film ends, she is grappling with the prospect of menopause, but she feels that she has taken charge of her body and of her own care, that she tends herself as she tends her garden.

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Summary:

In 1818, the newly trained physician, John Keats (1795-1821) (Ben Wishaw) is living with his well-off friend, Charles Brown (Paul Schneider), and they are trying to devote themselves to the art of writing. Keats cannot abide the idea of having to practice medicine. 

The uneducated, fashion-conscious Fanny Brawne (Abbie Cornish), notices Keats, moved by the care that he bestows on his dying brother. She offers a gift of a beautifully embroidered pillow, which soon finds it way into the lad’s coffin.

Affected by the young man’s death and the mystery of poetry, Fanny flings herself at Keats, undeterred by Brown’s open disapproval of her lack of class, education and bearing. Flattering his work, she asks Keats for lessons in literature and then reveals herself to a reasonable judge of poetry. In spite of himself Keats is drawn to her and declares his love.

But the poet’s health is fragile. Funds are raised to send him to Italy, and Keats announces that he must go, because his friends have decided. He seems to know that he will die. Fanny is brave and hopeful. Chastened, Charles Brown comes to Fanny’s home to announce the death of Keats in Rome.

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Summary:

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:

Retired professor Nariman Vakeel, suffering at 79 from Parkinson’s disease and a broken ankle that won’t heal, is more or less cast out of his home by his stepchildren to be cared for by his married daughter Roxana, her husband Yezad, and their two sons. The novel is a portrait of family life and the strife among siblings amidst moments of grace when an aging parent requires care; it is also a rich account of life in Bombay’s Parsi community in the mid-1990s.

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Summary:

This edited anthology, which includes poems, essays, short stories, and other creative forms (e.g., a radio diary, a letter to a social service agency), is organized into sections that include Body and Self, Diagnosis and Treatment, Womanhood, Family Life and Caregiving, Professional Life and Illness, and Advocacy. Most works found their way into this collection through a call for submissions, although a few selections are well known, such as Lynne Sharon Schwartz's "So You're Going to Have a New Body !," or an excerpt from Rachel Naomi Remen's Kitchen Table Wisdom (see annotations). In addition, the anthology also includes essays by scholars such as Arthur W. Frank and Rita Charon, who theorize gendered illness narratives.

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Summary:

The title recalls Clotho, the Fate charged with spinning the thread of life which would someday be clipped by her sister, Atropos. The two-stanza poem describes the circumstances of illness within a hospital setting. In stanza one, with a patient unable to urinate on his own, the poet employs desert images to suggest the dryness felt by the incapacitated sufferer ("throat-filling Gobi," "dry as Arabia," sunburnt cage of bone," "shekel," "rugs," "camel," etc.).

Stanza two begins with the riddle of the sphinx, another reiteration of desert imagery, but moves quickly to modern medical intervention by substituting the cane, the third leg of the elderly, with an IV pole for liquid sustenance and the "snake-handlers fist of catheters," ridding the body of its wastes. Clotho's role has been usurped by technology's miracles, and an appeal is made for the "kind, withdrawn face trained in the arts of love."

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Summary:

This film documents the quiet devastation of Alzheimer's disease from a daughter's perspective. Using home movie clips and up-close footage of conversations with her 84 year old mother (Doris Hoffmann), a skilled film maker/daughter (Deborah Hoffmann) provides a sustained and poignant documentary of Alzheimer's devastating ability to transform a vibrant and intelligent woman's life.

Interspersed with conversations that reveal her mother's disoriented recollections of the past and the glitches and confusion of daily life routines, home movies and other artifacts provide a contrasting impression of this woman's family and life then and now. Captions and clever title cards are used to organize events and to add gentle humor.

Frances Reid, the camera woman, is mentioned from time to time as someone known to both Deborah and Doris; eventually and without special emphasis, we learn that Frances and Deborah have a lesbian relationship and how Doris adjusted to the couple over the years.

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Summary:

The title refers to a Veteran’s Administration hospital regulation concerning the withholding of full medical benefits if an ailment is not specifically related to military service. In an oftentimes comic battle between the forces of good--physicians and vulnerable patients--and those of evil--the administrators and their minions--the story has currency and direct appeal to viewers.

The Darth-Vader-like administrators are self-serving, inhumane bureaucrats with emotions that run the gamut "from A to B" (Dorothy Parker). Physicians, especially the character played by Ray Liotta, but also his dedicated colleagues, are imaginative and non-rule abiding in their central concerns: the patients. They listen to stories and sympathize; in addition, they turf, lie, steal, and do whatever is necessary to protect, serve, and treat their patients. When the government denies a heart bypass, for example, the docs schedule prostate surgery for the official record and do, instead, the needed heart surgery.

At times, it’s as if the Marx Brothers or the Keystone Cops have donned white coats to sneak around the hospital with patient-centered antics. In the absurd bureaucracy, viewers, perforce, must cheer enthusiastically for the merry band of renegade docs.

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Summary:

This unusual story, beautiful and overwhelmingly sad, is set in Sicily on the craggy and barren island of Lampadusa surrounded by the bluest of seas. Everyone in the small fishing and canning village may be related; certainly, this is a place where secrets are not possible. Grazia (Varria Golino) appears to be the loveliest and most loving mother and wife, although her carefree, even childlike behavior is foreboding. The camera loves her and so do viewers who are ravished by her beauty and innocence.

With children positioned on the back of her Vespa, she and they escape to a deserted beach where she swims topless with her children; later, she releases hundreds of howling stray dogs from their inhumane confinement. Not surprisingly, spied-upon actions such as these produce critical response from more conservative neighbors whose norms are less capricious.

When signs of instability and manic depression become apparent, the community joins together to suggest hospitalization to her very supportive and heart-broken husband (Vincenzo Amato). She, like the caged-up dogs, seems to deserve the kind of freedom epitomized by her trips to the beach and will not, we sense, survive medical "imprisonment."

At this juncture, just as her wings are to be clipped, the story’s unexpected turn forces the mourning village to wonder about human frailty and reality. The ending, ultimately unclear and haunting, is a celebration of imaginative madness and ephemeral beauty. Visually stunning.

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