Summary:

Garland-Thomson, an important figure in disability studies scholarship and activism, analyzes the social phenomenon of staring, particularly staring at people with distinctive bodies. After exploring why we stare and what staring is, i.e., "a physical response...a cultural history...a social relationship...[and] knowledge-gathering," the book analyzes the dynamics of staring, including the learned prohibition against staring and the dynamic power relationship between starers and the objects of their stares, whom Garland-Thomson terms "starees."

She illustrates and analyzes four key "scenes of staring": staring at faces, hands, breasts, and bodies.  The book proposes a new "ethics of looking" in which starees offer starers a collaborative relationship that produces "[s]taring as beholding...a way to bring visual presence to another person, to see them as they need to be seen" (194). Garland-Thomson positions her argument in relation to key works of cultural criticism and sociology including Susan Sontag's Regarding the Pain of Others (see annotation), Erving Goffman's Stigma, Elaine Scarry's On Beauty and Being Just, and the ideas of historian Michel Foucault. Her evidence includes  auto/biographical narratives of scenes of staring, summaries of key historical contexts, examples from visual art (photography, painting, film, and cartoon), and literature, and auto/biographical narratives.

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The narrator of this novel, fifteen-year-old Christopher Boone, is autistic (or, more accurately, probably, has Asperger's Syndrome). He lives with his father and believes his mother died two years before. Christopher is extremely good at mathematics, seems to have a photographic memory, but does not like novels (other than detective stories, which are about observation and logic), because he cannot empathize with human emotions or make sense of the indirect or figurative. For Christopher, metaphors, like fictions, are lies. He is very fond of dogs, and hates to be touched by people.

When a neighbour's dog is killed, he decides to investigate and, with the encouragement of his teacher, to write a book about his investigation. He quickly makes some very disturbing discoveries. He learns that his mother is not dead after all, but living in London with the husband of the dead dog's owner. The fact that his father has lied to him devastates Christopher. He runs away to London to find his mother, and his courage and tenacity allow him to solve not only the mystery of the dog's death but that of his family's past and future.

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This story is told from the perspective of Emily, a forty-year-old spinster and former high school English teacher, who tends bar in a Massachusetts town. Emily has built a "disciplined" life, seeking to protect herself from the emotional pain of earlier failed romantic attachments, and from the cynicism that propelled her out of teaching--a cynicism born out of the apathy with which the students responded to her own passionate love of poetry. She has held herself aloof from the cautious social overtures of Jeff, the bar manager.

One night, a white man in a wheelchair and his black male attendant drive up to the bar. The arrival of this pair leads Emily to examine and re-assess her life. "Emily had worked [t]here for over seven years, had never had a customer in a wheelchair, and had never wondered why the front entrance had a ramp instead of steps." The disabled man, Drew, is quadriplegic (the result of diving into a wave at age 21, as Emily later finds out). But he and his attendant, Alvin, seem to be comfortable in the bar and with each other, and Emily relaxes.

As she observes Drew and watches how Alvin helps him, she tries to imagine their lives. "She thought of Drew . . . learning each movement he could perform alone, and each one he could not; learning what someone else had to help him do, and what someone had to do for him . . . So, was anyone boundless? Most of the time, you could avoid what disgusted you. But if you always needed someone to help you simply to live . . . you would . . . become disgusted by yourself."

Emily also imagines Jeff's life as a divorced father, and she can even empathize with Jeff's former wife, who left him. Jeff, she learns, had had a friend who became quadriplegic, the victim of a land mine during the war in Vietnam--hence the ramp entrance to the bar. As the story ends, Emily agrees to let Jeff cook lunch for her.

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Holding Our Own: Embracing the End of Life is a documentary film that shows aging and dying as anything but morbid, and death as the final healing in the hospice way. Art and music are combined as a way to bring people into a subject that they'd rather resist.

The film begins with an art opening in New York City and with the commentaries of curator and others as they view Deidre Scherer's large fabric and thread paintings (see annotation of "Surrounded by Family and Friends")--of people at the last moments of their lives. The artist has captured for us, even in the midst of suffering, genuine moments of tenderness.

An interview with palliative care physician Ira Byock guides the conversation, presenting a most refreshing doctor's perspective. The commentaries of hospice personnel, artist, and members of the Hallowell singing group punctuate the profoundly intimate scenes, filmed in institutional settings and in homes. The singers, who sing to the dying patients, see beyond their own fears; they recognize and want to honor dying persons for who they are: "This is not about singing it right for an audience...its about being totally present for the people you're singing for...and wanting it to be a gift." They model the magic of human connection called by Byock "the ground substance of therapeutics" The healing is mutual: "I can feel sad, cry, I can feel a heavy heart...but it's not depressing....It's a wonder...you can feel love, joy, sorrow, but so alive.... you feel the blessing of your own life."

Two additional segments, "More about Deidre Scherer," and "More about the Hallowell Chorus, and a concise study guide are offered with the DVD.

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This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease.  It does just that.  Brilliantly.

Narrated by the actress Olivia de Havilland, the film opens with a 96 year old woman reading classical music as she's playing at the piano. Her music becomes gentle background sound track for the first vignette, a group of people intently viewing and commenting on Seurat's canvas, "Sunday in the Park."  From their intense concentration and voiced observations, one would never believe this was a group of nursing facility residents on an outing to the Chicago Art Museum.

Throughout the film--at the circus, visiting museums, or in painting workshops conducted at day care centers, nursing homes and assisted-living facilities in Europe and the US-- the hopeless, fatalistic, nobody's there stereotypes of Alzheimer's sufferers is unequivocally denied.  We continually witness people with serious memory problems being brought back into active communication and a rich quality of life.  This is more than busywork arts and crafts: trained professionals knowledgeable about both art and Alzheimer's are providing essential treatment "just as effective if not more so than the drugs."  The benefits of the non-pharmacological along with the pharmacological not only extend life, but create a life worthwhile, where people find meaning and connection.
 
In direct interview, voice-overs and interacting with "patients" and their family members, eminent experts from multiple medical fields - neurology, gerontology, psychiatry- punctuate the film reviewing the latest technologies and concurring that the essence of the person lives on. The latest brain research provides evidence that the parts of the brain related to emotions and creativity are largely spared by the disease and that our technologies for assessing dementia --dealing with sequencing things, dates in order, and what one did this morning--rely on short term memory which is totally irrelevant when enjoying a masterpiece or listening to a symphony.  The documentary also includes comments from art therapists, occupational therapists, directors of specialized care facilities, but the film is anything but talking heads.  The cutaways and extensive footage of the care giving staff and specialists interacting emotionally and physically, visibly bonding with the residents and family members is sincere, loving and inspiring professionalism.

The inspiration for the film and project is filmmaker Berna Huebner's mother, Hilda Gorenstein, once an accomplished painter known as Hilgos.  In one of Huebner's visits to the nursing home, she asks "Mom, would you like to paint again?"  Quite unexpected came the reply, "Yes, I remember better when I paint."  Learning this, the staff psychiatrist who had been prescribing small doses of a tranquilizer for her apathy, anxiety and agitation suggested Huebner enlist art students from the Chicago Museum school to help her mother to begin painting again.  We are not spared the slow and sometimes discouraging process as Mrs. Gorenstein comes alive regaining mobility and communication skills and interacting--bonding-- with the art students.  The film is replete with her colorful paintings created in the next few years until her death at age 93.

"The creative arts are a doorway.  Once that doorway is opened ... things are tapped ... that are genuine and active and alive that don't get tapped in our normal day social interactions when we sit at a table and make conversations over a meal or we read a newspaper article and then talk about the headlines of the day.... The creative arts bypass the [cognitive] limitations and simply go to the strengths. People still have imagination in tact all the way to the end of their disease."

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Sixty-year old Martha DeClerq cares for her mentally disabled sister, Pauline (Dora van der Groen), in a small town between Brussels and the seaside. Pauline cannot feed herself, tie her shoes, or speak in full sentences; she is stubborn, loving, occasionally mischievous, and particularly devoted to her sister, Paulette (Ann Petersen), who owns a small, tidy shop in town. Cecile (Rosemarie Bergmans), the youngest sister, lives in Brussels with a French intellectual, Albert, and has little contact with her siblings.

When Martha dies, her will stipulates that her estate be split equally between the three sisters, only if Paulette and Cecile care for Pauline themselves. They agree to share Pauline’s care. Although the sisters are fond of Pauline, their relationship with her is awkward and tentative. Initially, Paulette brings Pauline home, and they negotiate the new living arrangements with a mixture of embarrassment and kindness, frustration and delight. When the burden of caring for her sister becomes overwhelming, Pauline is deposited in Brussels at Cecile’s tiny, meticulously kept apartment. When these arrangements become unworkable, Pauline is eventually institutionalized.

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As Audrey Young describes her process of becoming a compassionate internist in a besieged public hospital, she simultaneously argues for turning the hospital's patient care and financial practices into a model for improving health care in America.  Young, a compelling storyteller, first entered Seattle's Harborview Medical Center in 1996 as a third-year medical student on trauma surgery service.  She completed a residency there in general internal medicine and stayed on as an attending for six more years.  She stayed, she tells us, because she met physicians "committed to a vision of equality" who were "the sort of people I hoped to become" (xiii).   She also "fell in love" with "the story of a unique place" (xiii).  Young's stories of that often chaotic place, where ambulances regularly transport homeless, indigent, addicted, and mentally ill refugees from neighboring private hospitals, emphasizes the ways the Harborview staff manages to treat patients with dignity and to choose an ethic of hope in the face of dire circumstances.           

We quickly learn that at Harborview compassion is expressed concretely as actions toward patients.  Michael Copass, known as "the mostly benign dictator of emergency operations," pronounced the core of these actions in what came to be known as his commandments:  "1. Work hard.  2. Be polite.  3. Treat the patient graciously, even if he is not the president of the United States" (9).  Politeness always meant asking "'How may I help you, sir?'" regardless of the patient's social status or addiction history.  Politeness sometimes meant finding a way to reach the patient who regularly threatened the staff.  Young finds ways and creates a therapeutic bond.  But working hard and treating patients considerately also took measurable forms, such as not allowing emergency patients to wait.  Facing a flurry of admissions, the Emergency Department (ED) staff interpreted a young Ethiopian's complaints about pain as a drug addict's ploy.  Because Young glanced at the admissions board and noticed that he remained unattended for three hours--far longer than Copass could tolerate--she jumped into action.  He suffered, she discovered, from a collapsed lung. 

However, Young moves her narrative beyond individual doctor and patient encounters and into the larger, interrelated social and financial structures in which medicine is practiced.  For instance, she links meager funding for drug and alcohol rehabilitation programs with expensive ED admissions and rising healthcare costs.  In the chapter "Bunks for Drunks," Young visits an experimental residence that houses homeless addicts in furnished studios with private baths and cooking appliances.  Although residents can keep alcohol in their rooms and elect not to participate in the home's social services, including counseling, alcohol consumption and ED admissions decrease.  While the chapter points out the cost savings of such arrangements, Young further urges readers to value the dignity residents experience there.

In "Black Friday," Young details the hospital's tense, but ingenious responses to a Mass Casualty Incident, the result of carbon monoxide poisoning, which almost depleted the resources of all of Seattle's medical centers.  The final chapter, "A Vision," outlines how Harborview has tried to succeed as both a charitable institution and a business, as a provider of both indigent and luxury care, with the hope that others will follow the medical center's example.  However, in presenting her recommendations for "health justice," Audrey Young also makes the case that "seemingly ordinary citizens" are implicated in healthcare reform (231).  To enable their informed participation in making changes, Young includes an appendix with further readings and another that lists strategies for effecting reform.  

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In his preface to Amazing Change, Robert Carroll speaks directly about the power of poetry to heal. At a time of great personal loss, he says, "I began writing as a way of dealing with the inchoate, yet overwhelming, feelings I was experiencing... hopefully, to facilitate a healing process for myself." The poems collected in Amazing Change, which bears the subtitle "Poetry of Healing and Transformation: The Wisdom That Illness, Death and Dying Provide," reveal the depth and power of that healing process. They show the reader that poetic healing not only engages a person in self-discovery, but also in sharing that discovery with others. Wholeness is a community project.

While Amazing Change deals with serious subjects, many of the poems approach the subjects with humor and a light touch of irony. This is particularly true in "Dr. Bob's Psychomedical Poetics--Infomercial 1" (pp. 78-80) and "Dr. Bob's Psychomedical Poetics--Infomercial 2" (pp. 109-111). "Spiritual Soup" (p. 93) is another example of the value of humor in the good life, along with other core ingredients like marriage, prayer, hospitality, blues, hope, and pot luck.

Among the finest poems in this collection is "Kaddesh for My Father" (pp. 47-53). Written in filial homage to the poet's father, in artistic homage to Allen Ginsberg, and in spiritual homage to the Judaic tradition, "Kaddesh for My Father" seamlessly integrates personal detail and anecdote about his father with ritualized expressions of prayer and emotion.  In this and many other poems, Carroll employs poetic form and/or historical exemplars to enhance the meaning of his work, but never allows them to constrain or dilute his personal vision.

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Patrick Clary's Dying for Beginners is a collection of vibrant poems about living (as well as dying); about family, friends, music, loss, war and love. The book's title is evocative of the countercultural insight that dying is an essential part of living.  We only become fully human by coming to grips with our own mortality.  This engagement with mortality emerges from love and humor, as well as from suffering and loss.  Clary's poems speak to what he has discovered about himself, as a beginner to his fellow beginners.

The poet's route to discovery traverses Death Valley, where, during a spiritual retreat and vision quest, he has this epiphany: "Suddenly, I find all my wounds are turning into blessings" (p. 1). This inversion of categories is not an exotic, one-off event, but becomes a new way of looking at the world, a perspective in which life events, carefully observed and described, blossom with deeper meanings that can only be expressed by metaphor or paradox. For example, in "Days I Don't Remember," Clary reflects, "And all my roads are turning into rivers" (p. 27). Or, in "Meditation on the Pays d'Oc," he observes, "Instead of dying, I cough up a butterfly, watch it / dry its wings in the sun..." (p. 74). Or the essential quietism of "That silence moving through our lives was me" (p. 33).

The poet had his first lessons in dying when he worked as a medic during the Vietnam War, In "Orientation at Bien Hoa," he discovers, "Yes, gentlemen / This little war here / Exists only / For one reason: / To give you all the pleasure / You can handle" (p. 10).  He also learns how easy it is to kill with an M 16 rifle, which can "Put eighteen holes in / Whatever you point it at / Inside of two seconds" (p. 11). Meanwhile, the human tragedy of Vietnam takes place all around him.  

Clary reflects on the limits of his calling in "Three Variations", where he observes his own hands, "professionally / Tender on demand, but still uneasy / At your easy tenderness" (p. 35). The words "professionally tender on demand" evoke his work in palliative medicine, although the same words could-and should-apply to medical practice in general.  But Clary recognizes that the human capacity for compassion is not inexhaustible. There will always be a tension between the work that needs to be done ("another pair of hands in the emergency room," p. 63) and our limited reserves of kindness and empathy.

The book ends with a humorous and moving short prose narrative ("Origins of the Earwax Patrol," pp. 83-86) about caring for terminally ill patients.

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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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