Showing 101 - 110 of 344 annotations tagged with the keyword "Acculturation"
In this superbly written essay, Nancy Mairs, a feminist writer who has multiple sclerosis, defines the terms in which she will interact with the world. She will name herself--a cripple--and not be named by others. She will choose a word that represents her reality, and if it makes people "wince," "[p]erhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger" (9). She muses on the euphemisms that are used by others, concluding that they describe no one because "[s]ociety is no readier to accept crippledness than to accept death, war, sex, sweat, or wrinkles."
Mairs describes the uncertainty of a (correct) diagnosis early on, the kind of person she was before, and how that has changed and not changed since her illness. She discusses her need for assistance, but balances that by saying that there are many people around her willing to help; she describes her dependence on her family and how lucky she was to have a husband and children before she was taken ill. Nevertheless, there "always is the terror that people are kind to me only because I'm a cripple" (15).
Mairs has many astute comments to make about how disability does not fit well in our youth-oriented, physical-fitness-obsessed culture, and on how social expectations influence whether she adapts or fails to adapt. She also understands what is at stake for the medical professionals who care for her: "I may be frustrated, maddened, depressed by the incurability of my disease, but I am not diminished by it, and they are" (20).
This is an autobiographical novel in which the author relates the emotional life of a childhood and young manhood lived with cerebral palsy. The disease is never named (except on the fly-leaf of the book cover); its impact is revealed through incidents and personal relationships experienced by the protagonist in a narration which reflects by its style, the intellectual maturation from childhood to adulthood.
As a child, Felix spends long periods in a children’s home, to receive therapy and educational training, and to relieve his family of the strain of his care. Felix learns to walk with painstaking effort and surges of determination, but the reactions of others, even of his mother, make clear that he is not normal. His social life is complicated by anti-semitism and by just being from a different religious background. With puberty comes sexual longing and the need for female affection, and eventually the painful recognition that his desire will not be reciprocated. What saves Felix is the life of the mind and a love of literature and writing which a few influential mentors and a clever, similarly disabled friend help him to develop.
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.
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.
In this novel, with the help of some friends, Gregor Samsa has survived his seeming death at the end of Kafka’s The Metamorphosis and joined a freak show in Vienna. A little man named Amadeus Hoffnung, who suffers from Werner’s syndrome (premature aging), runs this Chamber of Wonders. The human sized cockroach proves to be a big hit with the public and a good friend for his assorted colleagues, who come to admire his optimism, compassion, and sense of social responsibility. Gregor thrives, except for the festering wound in his carapace (back) that will not heal--the wound made when his father threw an apple at him during his traumatic early life in "Metamorphosis" as a human-turned-insect.
In 1923, as a result of an life-changing encounter with Ludwig Wittgenstein, and in the context of growing anti-Semitism in Central Europe, Gregor flies (literally) to New York, where he takes up residence and soon runs into Mr. Charles Ives, the composer and insurance executive, who gives him a job as an actuary. The novel describes Gregor’s subsequent adventures over the next 20 years--as a surprise witness at the Scopes trial, as the subject of Ives’s famous "Insect" Piano Sonata, and finally as the confidant of Franklin Delano Roosevelt and member of his "brain trust." Along the way, Gregor contributes greatly to the science of risk analysis and management.
In 1943, at the president’s request, Gregor joins the atomic bomb project in Los Alamos, New Mexico, where he serves as risk analyst and all-around moral questioner during the bomb’s development. Finally, Gregor Samsa, having survived 30 years as an insect, becomes physically ill as the old apple-infection turns to septicemia; and he becomes existentially ill, as he confronts the implications of nuclear warfare. He decides to commit suicide by placing himself among the instruments at Ground Zero of Trinity site, vaporizing in the explosion of the first atomic bomb; indeed, "Gregor’s was the most expensive assisted suicide in history." (p. 458)
Aging, Jewish-Canadian gum-shoe, Benny Cooperman, awakes in hospital from a coma to discover that he has forgotten many things about himself and his recent past. He has also lost the ability to read, although he still can write: alexia sine agraphia. The therapists give him a memory book as an aide to functional recovery; he must record vital information for later deciphering. He learns that he was found unconscious in a dumpster with a blow to the head; beside him lay the corpse of a woman professor.
Leaving the hospital only once (without permission), Cooperman uses dogged determination and ingenuity to unravel the complex academic homicide. Adapting to his own disability proves just as demanding to Cooperman as solving the murder. Without giving away the ending, this "whodunit" involves premonitory dreams, pretty students, rogue professors, a crusty underworld, and drugs. Engel's trademark light touch and vignettes of Toronto and its University colleges and hospitals add humor and credibility to the vivid yarn.
In dire financial straits, the physician-researcher, Dr. Malcolm Sayres (Robin Williams), accepts a clinical job for which he is decidedly unsuited: staff physician in a chronic-care hospital. His charges include the severely damaged, rigid, and inarticulate victims of an epidemic of encephalitis lethargica. Sayres makes a connection between their symptoms and Parkinson’s disease. With the hard-won blessing of his skeptical supervisor, he conducts a therapeutic trial using the new anti-Parkinson drug, L-Dopa.
The first patient to "awaken" is Leonard Lowe (Robert De Niro) who, despite being "away" for many years, proves to be a natural leader, with a philosophical mind of his own. Other patients soon display marked improvement and their stories are told in an aura of fund-raising celebration marked by happy excursions.
Gradually, however, problems develop: patients have trouble adapting to the radical changes in themselves and the world; Leonard grows angry with the imperfection of his rehabilitation; the horrifying side effects of L-Dopa appear; and Leonard’s mother (Ruth Nelson), initially happy for her son’s recovery, is later alienated by the concomitant arousal of his individuality, sexuality, and independence. The film ends with "closure of the therapeutic window" and marked regression in some patients, but not before they have awakened clinical commitment and a new ability to express feelings in their shy doctor.
Worlds Apart is a set of four documentary videos designed to stimulate thought and discussion about the effects of culture on communication and medical decision-making. Each video encapsulates the story of a real patient and his or her interactions with physicians and family.
The four videos are: (1) Kochi Story--an Afghan man, diagnosed with stomach cancer, decides about chemotherapy amidst miscommunication due to translation issues and religious convictions; (2) Chitsena Story--the mother of a four-year-old girl from Laos is caught between physicians who tell her that her daughter needs surgery to correct an atrial septal defect, and her mother who upholds the traditional Khmu beliefs that scars, including surgical scars, are injurious to a person in future lives; (3) Phillips Story--an African-American man on dialysis discusses the prejudices against black people in the health care system, particularly the decreased chances for receiving a renal transplant; (4) Mercado Story--a 60-year-old Puerto Rican woman who lives in Hell's Kitchen, New York City, explains the complex social situation which affects her ability to take care of her chronic health problems, such as diabetes and hypertension.
The films depict the patients and families in various settings--in doctors' offices, at other health care facilities, at home or work, during religious ceremonies. Phillips Story is different in that only the patient speaks during the film--in the other three stories we hear family members, translators, and physicians. The pitfalls of translation by a family member or friend are discussed, as well as the need for the physician to elicit information from patients about the social contexts that may affect their health and decisions.
For example, Mr. Kochi's religious beliefs contravene the use of continuous infusion chemotherapy, but not other regimens--this distinction is not elucidated for many months. Hence cultural competency in health care requires that the provider not assume reasons for patients' behaviors and decisions but rather emphasizes communication to understand the particulars of the situation.
Summary:In Dirty Details, Marion Deutsche Cohen writes about the unrelenting labor entailed in caring for her husband Jeffrey at home as multiple sclerosis turns his symptoms from "mere inconveniences" (11) to extraordinary demands, which can disturb her sleep as frequently as twenty times a night. The premise of her unsparing narrative is that "we have got to spill the dirty details" (26) of such arrangements before the endurance-draining responsibilities of home care such as hers can be understood and redressed. In a culture that favors narratives of seemingly heroic individual effort, Cohen's brutally forthright descriptions of the effects of Jeff's needs on her life can be mistaken for a self-pitying complaint, rather than an urgent, revelatory, political call to action. Like her husband, a well-published physicist at the University of Pennsylvania when diagnosed with MS at age 36 in 1977, Cohen is an accomplished professional. With a PhD in mathematics, Cohen teaches college students as well as publishes poetry and prose. She and her husband also shared, with increasing asymmetry, the parenting of their four children.
Summary:This volume belongs in the category of cross-cultural studies of medicine and the humanities. Its main audience is scholars of nineteenth-century American psychiatry and culture. The author divides his study into six chapters, each with a topic, including the simultaneous emergence of nineteenth-century public debate about improving the treatment of insanity and the movement to abolish slavery; cultural activities in asylums directed toward humanizing the patients; bardolatry in British and American medical circles; discussions of Emerson, Hawthorne, Poe, and Melville in the context of their literary and personal relationship with madness; a chapter on captivity narratives and popular novels by former female and male patients; and an epilogue.