Showing 131 - 140 of 523 annotations tagged with the keyword "Disability"
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.
Lucy Grealy, poet, tells the story of her childhood and young adulthood, a twenty year period of overwhelming physical and mental suffering. Yet the author is so resilient, so intelligent, so insightful, and such a good writer that her story transcends mere illness narrative. At age nine, first misdiagnosed and finally identified as having facial bone cancer (Ewing’s sarcoma), Lucy underwent several surgeries and more than two years of intensive chemotherapy and radiation treatments. Pain and nausea, anxiety and fear of more pain and nausea were only part of the ordeal.
The young Lucy became aware of what it is to be severely, chronically ill. Her sisters behaved differently toward her: they were polite. "Suddenly I understood the term visiting. I was in one place, they were in another, and they were only pausing." Even her father felt uncomfortable at her hospital bedside, and Lucy was relieved that he came infrequently.
But being at home was worse: in the hospital the other patients and the staff expected little from her and she felt no guilt or shame; amidst her family, she blamed herself for the tension, arguments over money, and her mother’s depression, even though these elements had existed prior to her illness. Her hair fell out and she became dimly aware that people were staring at her face. Nevertheless, "I . . . was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority . . . . "
Well enough to return to school, Lucy’s disfigured face drew taunts from classmates; she understood finally that she was perceived as ugly and that she would not be loved. Only on Halloween, when she could mask her face, did she feel free and joyful, unconcerned about her appearance, "normal." Her moods now alternated between despair, determination, and escapism. She became convinced that only facial reconstruction and a restored appearance would make life bearable.
During years of reconstructive surgery Lucy evolved complex rationalizations to give meaning to her suffering. Two anchors had stabilized her existence throughout the misery: a passionate adolescent love of horses, and an adult love of poetry. Eventually outward appearance and inner life became harmonious. "The journey back to my face was a long one."
Summary:The border of this short poem refers to the boundary separating the narrator both from those who are well, and from her own self before she became ill with a painful chronic disease. She is an "exile" who must tell stories about what life was like in another country (good health) in a perhaps idealized past.
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.
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.
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.
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.
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").
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.
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.