Showing 131 - 140 of 520 annotations tagged with the keyword "Disability"

Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

The author, a scholar of autobiography and other forms of life writing, has expanded his scholarship to include what he calls "autopathography"--autobiographical narratives of illness and disability. This book is the result of an extensive study of such narratives. The works discussed are full-length and recently published--most were published in the 1980s and 1990s. Couser is particularly interested in issues of narrative authority, in how autopathography can be counterdiscursive to the prevailing biomedical narrative, and, especially, in how autopathography is counterdiscursive to the cultural stigmatization and marginalization that often accompany illness or disability ["insofar as autobiography is the literary expression of the self-determined life" (182)].

Since social/cultural counterdiscourse is of particular importance to Couser, he has focused on four specific illnesses/disabilities that have been associated with stigma: breast cancer, AIDS, paralysis, and deafness (182). His analysis of each condition is diachronic because he is searching for "the enrichment of the genre by successive writers who defy, complicate, or refine its conventions" (44). In addition, Couser asks, to what extent do authors "integrate illness narrative into a larger life narrative?" (14). He considers who narrates illness stories (biographer or autobiographer), how the stories are constructed, whether and how they achieve a "comic plot" and narrative closure.

The book's introduction (chapter 1, "Human Conditions--Illness, Disability, and Life Writing") provides a framework, relating what will follow to current issues in life writing, "identity politics," the culture of medicine, and illness experience, as well as to other work on illness narratives such as Anne Hunsaker Hawkins's Reconstructing Illness: Studies in Pathography and Arthur Frank's The Wounded Storyteller (annotated in this database).

Chapter 2, "Medical Discourse and Subjectivity," develops further the questions of narrative authority, representation, and resistance to a dominant medical or cultural narrative. Each subsequent section--breast cancer, AIDS, paralysis, deafness--is prefaced by an informative discussion of the cultural and narrative issues that are relevant to the particular condition; the subsequent analyses of individual texts further elaborate these themes.

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Illness as Experience

Volandes, Angelo

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Performing Arts / Film, TV, Video

Genre: Video

Summary:

This short documentary film was made by Angelo Volandes while he was a fourth year medical student at Yale, as part of his senior thesis. It describes the life of Ray, a 70 year old dermatology patient who has suffered from neurofibromatosis since he was a teenager. Severely disfigured by this condition, Ray has led a life of social ostracism, loneliness, physical discomfort, and stoic depression.

Angelo introduces the film, frankly describing his own "visceral reaction" when he first encountered Ray in clinic. Ray and his long-time physician, Dr. Braverman, alternately discuss how Ray’s condition has affected every aspect of his life. Although Ray has endured more than 30 operations to remove the tumors that become infected, itch, and plague him, it is social ostracism that has most powerfully altered his life.

The camera follows Ray as he shops in the supermarket while doctor and patient describe what an ordeal this can be. Worse than suffering the stares of fellow shoppers is being treated like a contagious carrier of the plague by the checkout clerk, who refused to handle Ray’s money. Ray tells how incidents like these have landed him in the Emergency Room numerous times, out of sheer emotional upset.

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The Visible Skeleton Series

Ferguson, Laura

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Visual Arts / Visual Arts

Genre: Mixed

Summary:

These arresting and beautiful drawings of a woman's body through which the interior skeleton is visible represent the art and body of Laura Ferguson, a visual artist who has severe scoliosis. At age 13 Ferguson underwent spinal fusion surgery, followed by one year spent wearing a plaster cast. Years later she began to experience pain and disability due to her condition. This was the impetus to try to understand her body, to visualize its skeleton, to undertake "an artistic inquiry" into the medical condition of scoliosis.

She learned anatomy and the physiology of motion, learned to read her own x-rays and was helped to visualize her skeleton by orthopedists and radiologists, working most recently with radiologists at New York University School of Medicine who provided a 3D spiral CT scan. In Ferguson's words, the latter is "an exciting new technology that allows me to view my skeleton from any angle, rotating and tilting it to match whatever movement or pose I'm interested in drawing." (Perspectives in Biology and Medicine, Spring 2004, vol. 47, no. 2, p. 166)

Ferguson originated her own technique of "floating colors" to produce the layered background (on paper) of these drawings. On top of the complex colored background that constitutes the body's flesh in her work, she uses drawing materials to represent the interior skeleton, allowing the viewer to see both the body and its skeletal interior--but the interior has been exteriorized. Ferguson depicts a body in motion--bending, kneeling, reclining, stretching, twisting--as well as a sensual body--nude, with breasts and long hair; embracing, being embraced. Some of the depictions do not have a skeletal interior at all while some are almost straight anatomical drawings of skeleton parts.

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dialysis

Clifton, Lucille

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Poetry

Genre: Poem

Summary:

The speaker was treated for cancer but afterwards "the kidneys / refused to continue. / they closed their thousand eyes." Now she is in the dialysis unit, a patient once again, with other patients. She thinks her body rebelled against the cancer surgery by refusing to lose "even the poisons" that the kidney eliminates.

She thought that when the cancer was treated she would be well, but instead, there was more illness--a chronic disease. She knows that she is expected to take the situation in stride ("we are not / supposed to hate the universe") but she is "furious"--all her gratitude for being saved from cancer has been nullified.

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donor

Clifton, Lucille

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Poetry

Genre: Poem

Summary:

The speaker appears to be in need of an organ transplant (see dialysis, annotated in this database). Her son is the likely donor but there is an incredible irony in this: 30 years earlier she had tried to abort him, brutally ("the hangers I shoved inside"), before abortion was legal. Now, as she is told that her body might reject his, she remembers how she had previously rejected his body, and how he had refused to be rejected ("refusing my refusal").

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Codeine Diary: A Memoir

Andrews, Tom

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Contrary to what the title might suggest, this is not a memoir of drug addiction. Writer and poet Tom Andrews has hemophilia, and codeine is the analgesic he requires during excruciatingly painful internal bleeding episodes. In this diary, begun while recovering from a leg injury, Andrews reflects on his particular experience of life and hemophilia. He makes clear that " . . . hemophilia is only one of the stories my life tells me . . . " (p. 29)

The memoir interweaves the author's physical, emotional, and existential journey through the convalescent period with flashbacks of childhood and his relationship with his ailing brother, now dead, to whose memory the book is dedicated. Brother John's fatal illness with kidney disease shaped--and continues to shape--Tom's life as much as did the hemophilia.

On the one hand their parents' concern for John took Tom out of the spotlight and allowed him to pursue his own interests. These extended to motorcycle racing, playing in a punk band, and setting a record for continuous hand clapping--at age 11--that was recorded in the Guinness Book of World Records. On the other hand, Tom's guilt over surviving John's early death may account for an almost reckless disregard of his own precarious physical condition. A constant subtext is the deep grief and abiding love of the living brother for the dead one.

But this is not a mournful book. It is an engaging memoir that provides unusual access and insight into the world of hemophilia, especially with regard to the painful "bleeds." It is the sense of exile and separation from others that is most disturbing for Andrews when in the throes of unrelieved pain. He takes us through the mental concentration required to endure this pain and the liberating relief to mind and spirit provided by codeine. Memory, perception, and writing provide the additional resources he needs to re-connect with the world.

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Epsilon Country

Cohen, Marion

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

In 1977 Marion Cohen's physicist husband, Jeffrey, was diagnosed with multiple sclerosis. He was 36 years old. Cohen, a mathematician and poet and mother of four, became his chief caregiver. As her husband's illness progressed, the caregiving role became increasingly absorbing, demanding, all-encompassing. Eventually daytime attendants were hired but sometimes they didn't show up. This collection of 77 poems is a kind of journal, primarily from late 1989 through January, 1991, that chronicles Marion's ambivalent caregiving, despair, resignation, "temper tantrums," love, and compassion.

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The Broken Column

Kahlo, Frida

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Visual Arts / Painting/Drawing

Genre: Oil on canvas

Summary:

A woman, Frida Kahlo, looms in the foreground, central to the painting, facing the viewer fully frontal.  She is nude, except for a sheet that is wrapped around her foreshortened lower body, and the widely spaced straps of an upper-body corset.  The center of her upper body is vertically torn open from neck to pubic region to reveal an Ionic column that is split horizontally in numerous places.  The column pushes up against the figure's chin.  The expression on the woman's face is serious, stoic.  Tears trickle from her eyes and carpenter nails penetrate the skin of her face and the rest of her exposed body, as well as the sheet.  Her long dark hair hangs loosely behind her head, her left ear exposed. Behind the woman stretches a fractured greenish-brown earth, reaching to a strip of sea, which meets the dark blue sky.

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This Lovely Life

Forman, Vicki

Last Updated: Jan-03-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Vicki Forman's twins, Evan and Ellie, were born in 2000 at twenty-three weeks' gestation.  Fetuses could legally be aborted up to twenty-four weeks, but rules regulating treatment of extremely premature babies differed from one hospital to another.  Daughter of a doctor, Forman knew how slim were the chances of survival and how great the chances of serious disability if either of the twins did survive.  Grieving, but realistic, she and her husband asked for a DNR order, but learned that such orders did not strictly apply to the situation of children like their twins.  Instead, the line between  the parents' authority and the doctors' remained blurry and decision-making vexed not only by technical and emotional complications, but by conflicting legal guidelines as they made their way through many months of hospitalization and home treatment of their surviving son.

Ellie, the daughter, died at four days.  Evan lived for eight years with disabilities that completely reorganized family life, and required constant monitoring, management of equipment, and careful orchestration of parental relationship to their older child, Josie, and their special-needs child.  Much of the narrative covers the period of hospitalization during Evan's early months and the negotiations between parents, physicians, and other caregivers.  It also touches on Forman's own emotional responses to the strenuous learning curve required of a parent who suddenly finds herself with a special-needs child.

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The Metamorphosis

Kafka, Franz

Last Updated: Dec-29-2009
Annotated by:
Coulehan, Jack

Primary Category: Literature / Fiction

Genre: Novella

Summary:

First published in 1915, this is the story of Gregor Samsa, a young traveling salesman who lives with and financially supports his parents and younger sister. One morning he wakes up to discover that during the night he has been transformed into a "monstrous vermin" or insect. At first he is preoccupied with practical, everyday concerns: How to get out of bed and walk with his numerous legs? Can he still make it to the office on time?

Soon his abilities, tastes, and interests begin to change. No one can understand his insect-speech. He likes to scurry under the furniture and eat rotten scraps of food. Gregor's family, horrified that Gregor has become an enormous insect, keep him in his bedroom and refuse to interact with him. Only his sister Grete demonstrates concern by bringing his food each day.

When Gregor breaks out one day and scurries into the living room, his father throws apples to chase him away. One becomes embedded in his back. Eventually the apple becomes rotten and infected; Gregor wastes away. When he dies the cleaning woman throws his remains into the garbage.

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