Showing 121 - 130 of 524 annotations tagged with the keyword "Disability"
Summary:Celia has her hands full. The maxillofacial prosthetist is overwhelmed by the demands of caring for her ill husband at home. Her job - crafting replacement parts for people whose faces are damaged - is truly art but involves interacting with distraught patients and angry families. Her mother constantly telephones to offer unsolicited advice. Celia's husband, Simon, has multiple sclerosis. He has been treated in the emergency department many times and recently has been on a ventilator. Celia realizes that she unintentionally hurts Simon just by caring for him. She has never developed the knack of painlessly administering his injections. When she attaches the feeding pump to his G-tube (a feeding tube permanently set in the stomach), she induces pain by yanking too hard. Her mother, Bess, and best friend, Leslie, try to convince Celia that Simon would be better off in a nursing home, and her life would be less stressful. Although she has a lover, Celia cannot face losing her husband.
Subtitled "Tuberculosis and the Social Experience of Illness in American History," the book chronicles the medical and societal treatment of tuberculosis in the United States from the perspective of individuals who suffered from the disease. The author includes illness narratives derived from letters and diaries of the afflicted; her analysis spans the period in American history from the nineteenth through the first half of the twentieth century.
The book is divided into four sections. Part I, "The Invalid Experience: New England Men, 1810-60" and Part II, "The Female Invalid: The Narrative of Deborah Vinal Fiske, 1806-44" reveal an interesting contrast in the medical/societal treatment of tubercular men and women, and the resulting differences in their lives as "consumptives." Whereas men were expected to seek a cure by embarking on sea voyages and other travel, women remained at home and sought to control the disease by adjustments in domestic life. For men this meant major disruption and even change of career along with a sometimes exhilarating change of scene; for women it meant relentless anxiety and elaborate coping strategies.
Part III, "Health Seekers in the West, 1840-90" describes the role of cure-seekers in the westward migration and demonstrates how the culture of the time, an optimistic faith in nature and in the economic promise of the newly settled western territories, was reflected in the treatment regimen for tuberculosis. Interestingly, much of the promotional effort to bring "consumptives" west was initiated by physicians who were themselves tubercular.
The final section, "Becoming a Patient, 1882-1940," moves into the modern era with the discovery of the tubercle bacillus, public health measures, and the illness narratives of people who were confined in sanatoriums. Rothman points out that this period marked a transition away from the patient’s ability to understand and determine his/her treatment to one more like the current one in which the medical establishment is the authoritarian "expert."
The charming alcoholic, Billy, has been found unconscious, on a street in his home neighborhood of Queens, New York City. His cousin and lifelong friend, Dennis, must identify his body after he dies, and help his widow Maeve through the funeral and its aftermath--just as he has often helped Maeve to carry the stuporous Billy to bed. Billy's funeral is the occasion for the reminiscences about him by his friends and family that forms this novel's story. These reminiscences reveal the web of community and generational continuity that is at the narrative's core.
A central tragedy in Billy's life has often been invoked by his friends to account for his alcoholism. Recently back from the second World War, Billy had met the Irish girl, Eva, and fallen in love with her. When she returned to Ireland he was determined to bring her back, along with her family, so that they could be married. But, as the story goes, Eva died and Billy, heartbroken, never really recovered. We learn early on, however, that Eva's death was fabricated by Dennis, who could not bear to reveal to Billy and to the rest of the family that Eva had married an Irish beau and used the money that Billy had been sending her to set her new husband up in business.
Even though Billy eventually learns that Dennis has lied to him, their friendship is undiminished. Neither Billy nor Dennis enlighten anyone else with the truth, until Dennis tells his daughter, following Billy's funeral. It is as if the truth would force Dennis to confront the inexplicable--that a man so loved by all destroyed himself for no apparent reason, was unable to accept all efforts to help him, unable to help himself, and, in effect, abandoned and rejected those who cared for him. But the novel concludes with an affirmation of trust, faith (religious and secular), friendship, and family ties and with an acknowledgment that the stories we tell and believe may be more important than what actually happens to us.
Robert Murphy was a professor of anthropology at Columbia University when he became progressively paralyzed by an inoperable spinal cord tumor. His book is a personal journey through profound physical disability, an exploration of the self, and a study of the social construction of disability ["Disability is defined by society and given meaning by culture; it is a social malady" (4)]. As he writes The Body Silent he is virtually quadriplegic, hitting the keys of his computer with the eraser end of a pencil held in place by a 'universal cuff' wrapped around his palm. He is still traveling to Columbia to teach his classes.
Murphy applies the metaphor of an anthropological field trip to his experience: "This book was conceived in the realization that my long illness with a disease of the spinal cord has been a kind of extended anthropological field trip, for through it I have sojourned in a social world no less strange to me at first than those of the Amazon forests. And since it is the duty of all anthropologists to report on their travels . . . this is my accounting" (ix). Drawing not only on his own experience but also on research for which he received funding, Murphy instructs his audience in the metaphysics of his situation, and in the social as well as physical challenges of disability.
In his dedication to the book, the author addresses his sons: "The secret to life? Clean your room." The meaning of this becomes clear as Vernon traces the story of his brother, Paul, with whose death the book begins. Paul was 15 years older than the author and had been only a shadowy presence in his life. When Paul died, John Vernon had to exercise his duties as executor of Paul's "estate," an estate that turned out to be a festering, stinking nightmare of a house.
The house was filled with 20 years worth of trash that represented 20 years of Paul's life as a recluse. This memoir is an attempt to imagine Paul's life and to understand the reasons for the course it took. It is also an attempt to "bear painful news" and to reflect on his own reactions to what he discovers and to Paul's death.
In order to do this, Vernon calls on history, interweaving his memories and what was revealed of Paul's life after his death with discussions of the beliefs and discoveries of past eras. Finding himself nailing a thermometer to the outside of Paul's house, the author describes the development of thermometers, and the nature of heat ("Heat"). What, he asks, is meant by "normal" atmospheric pressure? How abnormal was his brother? After all, he bought nursing-home insurance a year before he died. And how normal is he, John Vernon, affixing a thermometer to this wreckage?
As he builds a primitive set of steps to the house, the author explores the history of tool making and speculates about what distinguishes humans from animals; did Cain murder Abel with a hammer, and is he, John Vernon, his brother's keeper? ("Tools") Similar expositions and speculations interdigitate in subsequent sections entitled "Body," "Corpse," "House," "Origins." [At the end of the book, there is a bibliography of references for each section.]
Before Jamie Weisman went to medical school and became a physician she wanted to be a writer. As she struggled to make a career out of writing, she was forced to acknowledge that the obscure, life-threatening condition that had plagued her since adolescence could not be factored out of her plans. Writers don't have easy access to affordable health insurance and her monthly intravenous infusions of antibodies and interferon were very expensive. Yet they were essential to fend off infection, for she had an immune system malfunction.
Of course, finances were not the only reason that Weisman decided to go into medicine. As is often the case, her own experience of illness was an important motivating factor, as was the fact that her father, of whom she is very fond, was a physician. This memoir describes significant stages of Weisman's illness, her interaction with the physicians she consulted, and the issues she grapples with as she pursues her life as a physician, wife, and mother (she graduated from Emory University's school of medicine in 1998 and practices dermatology).
Poet and essayist Floyd Skloot gives us his third memoir; each of the three concerns a somewhat different facet of his attempt to recover from and live with mental and physical damage resulting from a viral illness that struck him in 1988. This book, written approximately 15 years after the initial insult, "is a memoir of the reassembled life" (ix). Life for Skloot is different than before, but a kind of order--Skloot calls it "harmony"--has been constructed out of memory loss, mental disorder and incoherence: "I have learned to savor the fragments themselves, and to live in the moment" (xi). A World of Light is perhaps more a collection of essays than a memoir.
Most of part one and some sections of parts two (Ch. 5, "1957") and three (Ch. 15, "Taking Stock") concern Skloot's interaction with his aged mother as she slides further and further into dementia. Anyone who wants an idea of what it is like to interact with a person who has Alzheimer's disease should read these sections. Skloot masterfully reproduces the often bizarre conversations that occur--the sometimes maddening repetition of comments during attempts at conversation.
Skloot's mother admires his wife, Beverly, and repeatedly instructs them to marry each other, no matter how often they assure her they are already married. She forgets their previous visits to her in the nursing home, although they visit regularly, and becomes anxious when they leave, even though she isn't certain who they are. Skloot writes about how receptive his mother is to music, which delights her, and how she sings snatches of old songs triggered by the words of any offhand comment--phenomena that have been noted in some other descriptions of Alzheimer's patients.
The essays in part two look back on Skloot's childhood, his family's background, and on his development as a writer. Part three centers on his current life with his wife, Beverly, whose home in rural Oregon provides a refuge for them both (although they are now in the market for different surroundings).
This thought-provoking book is a collection of readings which the editors have found to be particularly useful for a course they teach, "What’s Normal?" It is their intent to facilitate consideration of how the world is experienced by those who are socially marginalized because of their physical appearance. The title of the anthology derives from an article written by the literary critic, Leslie Fiedler, and reproduced as the lead-off essay. Fiedler argues that the propensity of cultures throughout history to define the normal and to make political decisions about physical "abnormality" has reached a point where the rich will perpetuate the cult of normalcy (by paying for medical treatments that ensure it) while "the poor . . . will be our sole remaining Freaks."
The anthology is divided into several sections: Part I contains nonfiction articles, essays, and excerpts from books. Part II reproduces fiction, poetry, and drama and is further subdivided into "Abnormal Weight and Eating Disorders"; "Abnormal Height-Dwarfism"; and "Deformity and Disability." Many of the pieces have been annotated individually for this database (e.g. Fat by Raymond Carver, annotated by Carol Donley and also by Felice Aull and Irene Chen; Skanks by Rennie Sparks; The Fat Girl by Andre Dubus; Weight Bearing by Patricia Goedicke; Dwarf House by Ann Beattie; The Song the Dwarf Sings by Rainer Maria Rilke; The Dwarf by Ray Bradbury; The President by Donald Barthelme; The Birthmark by Nathaniel Hawthorne; The Elephant Man by Bernard Pomerance and others).
Editor Helman is a physician and anthropologist as well as a published author of short stories, essays, and a medical anthropology textbook. For this anthology he has selected short stories, case studies, memoir and novel excerpts whose purpose is "to illustrate different aspects of [the] singular but universal relationship" between doctors and patients (1). In the introduction he discusses how these selections illustrate storytelling in medicine; the unique experience of individual illness; differences between fast-paced contemporary technological specialized medicine, and an older more leisurely medicine where the physician employed all his/her senses to diagnose illness, doctors made house calls, and patients recovered over time, or died.
The anthology is subdivided into three parts: "Doctors," represented by the work of Mikhail Bulgakov, Franz Kafka, Sir Arthur Conan Doyle, and Rachel Naomi Remen; "Patients," represented by authors Renate Rubenstein, Ruth Picardie, Rachel Clark, Clive Sinclair, W. (William) Somerset Maugham, and O. Henry; and "Clinical Encounters," with work by Oliver Sacks, Cecil Helman, William Carlos Williams, A. J. (Archibald Joseph) Cronin, Anton P.Chekhov, and Moacyr Scliar. (In total there are 16 selections.) Each piece is preceded by a paragraph of biographical information about its author and an introduction to the text.
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).