Showing 361 - 370 of 520 annotations tagged with the keyword "Disability"

Long for This World

Byers, Michael

Last Updated: Jan-19-2004
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Henry Moss is a medical geneticist specializing in Hickman syndrome, a fictitious disease resembling progeria. Children with Hickman syndrome experience premature aging and invariably die before the age of twenty. The physician meets Thomas Benhamouda, a teenager who genetically has Hickman syndrome but astonishingly has no physical manifestations of the disease. Dr. Moss identifies a protein that "corrects" Hickman syndrome in the blood of Thomas and proceeds to synthesize it.

Dr. Moss violates medical ethics by administering the experimental enzyme to his favorite Hickman patient, William Durbin, a dying 14-year-old boy. It is a last-ditch effort to save William's life even though the substance has not been tested for safety or efficacy in human beings. Dr. Moss also injects himself with the enzyme. He realizes the tremendous potential the drug has not only in curing Hickman syndrome but also in extending longevity in normal individuals. He is well aware of the great financial rewards he might reap from his discovery.

After a series of injections, William's deteriorating health stabilizes and even improves but he dies in his home. Dr. Moss has failed to save the doomed boy but in the process of breaking the rules and risking his career has learned how to understand and appreciate his own life as well as reconnect with his family.

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A Language of Hemophilia

Andrews, Tom

Last Updated: Dec-30-2003
Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Poem

Summary:

This long poem in 20 sections seeks to explore, dissect, and create a language for the experience of hemophilia. "Blood pools in a joint / The limb locks . . . " The poet first dissects words like "trans / fusion" and "hema / toma," and showers the reader with images (like splatters of blood?).

In section 5 he states his purpose in the familiar jargon of educational objectives and later, in section 10, he utilizes spacing and line breaks to convert standard admonitions into poetry; for example, "These child- / ren should / not / be / punished, and / their / play with / other / children / should / be super- / vised . . . " Isolated phrases and sentences appear--some from the hospital and some from the "outside" world.

In some phrases the worlds of outside and inside mix, as in "Arterial sunrise, capillary dusk." Section 13 consists of laboratory reports. The poem breathes in and out, between syllables and long lines, between prosaic statements and poetic images. Finally, the poet finds words for the endless rhythm of hemophilia, "Gratitude and / fear--Your relentless / rhythm--I move to / it still . . . "

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Annotated by:
Kennedy, Meegan

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

St. Luke’s Hospital was founded in 1750 to provide free care to the impoverished mentally ill. It mixed benevolence with "unconscious cruelty" in the treatments used by the "practitioners of old," from restraints and drugs to swings and a key to force-feed recalcitrant patients. Dickens describes this gloomy edifice as he saw it on December 26, 1851, although he notes a "seasonable garniture" of holly.

The inhabitants of St. Luke’s largely sit in solitude. Dickens decries the absence of "domestic articles to occupy . . . the mind" in one gallery holding several silent, melancholy women, and praises the comfortable furnishings--and the relative "earnestness and diligence" of the inmates--in another. He uses statistics to show the prevalence of female patients, "the general efficacy of the treatment" at St. Luke’s, and the unhealthy weight gain of the inhabitants due to inactivity. Dickens describes the behavior of various distinctive inhabitants during the usual fortnightly dance, the viewing of a Christmas tree, and the distribution of presents.

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Summary:

This tightly researched documentary opens with the tragic auto accident in which Ms. Kowalski is rendered comatose. During the early period of her prolonged hospitalization, tensions arise between Kowalski's domestic partner and the patient's parents, leading to a highly contentious battle for the rights not only to visit, but also to assume long term care responsibilities. As the patient regains consciousness and limited physical and cognitive skills, the drama moves from the hospital and nursing care facility to the courtroom.

For ten years, the battle for custody and the ultimate care of Ms. Kowalski rages. Drawing on trial transcripts, medical records, newspaper archives, and personal interviews, Casey Charles's work brings to life emotions and personalities that dominated the courtroom dramas and illuminates the highly contested judgments emerging from supposedly objective authorities in journalism, medicine, and the law.

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Equal Affections

Leavitt, David

Last Updated: Nov-17-2003
Annotated by:
Belling, Catherine

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The first part of this novel presents a detailed picture of the Jewish Californian Cooper family, centering on the sixty-year-old Louise, who is dying of breast cancer. Her husband, Nat, is unfaithful, and, she suspects, only loves her when she is at her weakest and most sick. Her daughter, April, is a lesbian folk singer who becomes pregnant with the help of a gay male friend and a turkey baster. Danny, the son, is also gay, living in New York with Walter, his lover, who is becoming increasingly detached and obsessed with internet sex groups.

Louise considers herself lucky, though, compared with her younger sister Eleanor, partially disabled by childhood polio, disorganized and ill-groomed and married to Sid, whom Louise finds deeply unattractive. Eleanor's son is a sociopathic drug addict, and her daughter has ovarian cancer caused by Eleanor's taking DES (diethylstilbesterol) in pregnancy. She sends Louise newspaper cuttings about the causes of homosexuality and the dangers of AIDS.

The first part having established the complex dynamics and histories of the family's relationships, the second brings the entire family together in the crisis of Louise's final illness and death (a reaction to chemotherapy drugs causes severe chemical burns and she dies in a burn unit in a San Francisco hospital). After her death, the new dynamics of the family are established, and Louise's son and daughter conclude that their mother had "a terrible life" (p. 261).

The short third part shows that no such conclusion is possible, that even those closest to us remain terribly but fascinatingly unknowable. A flashback to a point just before Louise's final illness describes her attempt to convert to Catholicism and a brief moment in which she experiences a marvelous sense of complete harmony.

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The Ash Garden

Bock, Dennis

Last Updated: Nov-16-2003
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Emiko a child survivor of Hiroshima, is now a documentary filmmaker. She has horrific memories of August 1945 when she lost her parents and little brother, and of the years of painful operations and homesickness in America where she was sent to restore her mutilated face. She is hoping to interview Anton Böll, a scientist who had fled Germany to work on the Manhattan project.

Böll contends that he had been unaware of human rights abuses; he left Europe because the Nazi regime had cramped his scientific style. As a consequence, his mother was imprisoned and killed. During the war, he met his Austrian-born Jewish wife, Sophie, at a displaced persons camp in Canada. Sophie had lost her whole family, but she does not speak of them and he does not ask.

Briefly they knew happiness, but soon Böll left for work on the bomb and on to Hiroshima in its aftermath. Their marriage would never be the same. For the rest of his life, Böll justified his involvement as a "dream" turned "nightmare" emerging from the imperative demands of a virtuous science. When Emiko approaches him, he hesitates. He does not want to risk blame. But his dying wife knows that absolution for unacknowledged guilt is what he craves.

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The Imaginary Invalid

Molière

Last Updated: Oct-21-2003
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Plays

Genre: Play

Summary:

Argan, a fearful but miserly hypochondriac, divides his time between summoning the doctor to care for his ills and trying not to settle the resultant bills. He resolves to marry his daughter, Angélique, to a medical student, hoping to acquire unlimited access to gratis consultation. The chosen fiancé is an unattractive dolt, who would never interest Angélique, even if she were not already in love with clever, handsome Cléante, who poses as her music instructor.

Argan's wife, however, plans to send Angélique to a convent, removing her from the line inheritance. At the urging of the sensible servant Toinette, he feigns death to test his wife's affection only to discover her contempt. Again with the help of Toinette, the young lovers convince Argan to liberate himself from the twin tyrannies of his ailing body and his grasping physicians by becoming his own doctor. The play closes with the physicians' lively examination of Argan and his entry into the profession, full of musical pomp and pidgin Latin.

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Summary:

The sculptor Ken Harrison (Richard Dreyfuss) is badly injured in a car accident and finds himself in the middle of life permanently paralyzed below the neck and dependent on others for his care and survival. Ken is a strong-minded, passionate man totally dedicated to his art, and he decides he does not want to go on with the compromised, highly dependent life that his doctors, his girlfriend Pat (Janet Eilber), and others urge on him. He breaks up with Pat and fights to be released from the hospital, to gain control of his life in order to stop the care that keeps him alive and unhappy.

His antagonist is the hospital's medical director Dr. Emerson (John Cassavetes), who believes in preserving life no matter what, and so tries to get Ken committed as clinically depressed. Ken's attending physician, Dr. Scott (Christine Lahti), begins with the establishment but gradually moves toward Ken's position.

The film ends with the judge at a legal hearing deciding that Ken is not clinically depressed and that he thus has the right to refuse treatment and be discharged. In the last scene, Ken lies in a hospital bed framed by his own sculptural realization of the forearm and hand of God from Michelangelo's Creation of Man.

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Death on Request

Nederhorst, Maarten

Last Updated: Oct-21-2003
Annotated by:
Shafer, Audrey

Primary Category: Performing Arts / Film, TV, Video

Genre: Video

Summary:

In this documentary film about euthanasia in the Netherlands, a man--Kees van Wendel de Joode--with amyotrophic lateral sclerosis (ALS, Lou Gehrig's disease) requests death in his home, to be performed by his doctor, Wilfred Sidney van Oijen. The film mostly consists of what appear to be unscripted discussions between Kees, his wife Antoinette, and the doctor; however, there are also interviews with the doctor and views of the doctor seeing other patients. The film shows the doctor performing euthanasia: we watch him inject a barbiturate and then a muscle relaxant and we see him supporting Antoinette during the bedside deathwatch.

Kees has had a rapid deterioration of his ability to function: he is unable to move his legs and right arm, he can no longer speak coherently, and he is having difficulty swallowing. His wife cares for him in their Amsterdam apartment. The film documents the legal requirements for euthanasia in the Netherlands: Kees's repeated requests for euthanasia, confirmation that he has an incurable disease, the second opinion doctor's visit, and reporting the death to the municipal coroner and public prosecutor.

The film's strength lies in the sensitive treatment of the impact of this request on the patient, his wife, and especially on his doctor. Dr. van Oijen is an introspective man who cares for his patients--he makes house calls, explains medical terms to his patients, touches his patients, and asks what they are concerned about. He allows his patients (Antoinette is, in many ways, his patient too) to weep and be emotional.

The religious and moral dimensions of euthanasia are explored mostly with the doctor, who does not view himself as a wanton killer, but rather a doctor whose duty includes the alleviation of suffering. The film concludes with a voice-over stating the doctor will not sleep this night, but still has a clinic full of patients awaiting him in the morning.

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Annotated by:
Duffin, Jacalyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Lawyer Mitchell Stephens (Ian Holm) comes to town preying on the grief of the citizens who have lost their children or seen them harmed when a school bus slid off the road and sank through a frozen lake. He encounters a network of secrets and distorted perceptions of blame, guilt, lies, and victimhood revealed by flashbacks. Grieving the loss of his challenged son, the sinister but simple motel keeper, Wendell (Maury Chaykin), warns Stephens off the case, blaming parents, children, drivers, and the road. He does not know that his wife has been sleeping in one of the vacant rooms with a good-looking widower whose son and daughter both drowned.

The Otto family, especially the mother (Arsinée Khanjian) are destroyed by the loss of their beloved adopted son, a smiling native child, called Bear. They are confused. On the one hand, they want nothing because their loss was accidental; on the other, they want vengeance because someone must be blamed for their overwhelming pain. The bus driver, Dolores, who has lost so many of "her kids" seems not to have grasped the full extent of the tragedy or the possibility that all could be blamed on her.

And yet it could. The crucial evidence is the speed at which she took the last downhill curve. The key witness is a teenager, Nicole (Sarah Polley), who sat just behind the driver and survived the accident as a paraplegic. Her father is eager for her to testify, hoping for a large settlement. It slowly emerges that his seemingly close relationship with Nicole before the accident was incestuous. Now she is seething with anger toward him--because of his past abuse? or because of his present abandonment? or both? She claims that Dolores was driving too fast. The case collapses. Stephens later sees Dolores driving a group of seniors.

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