Showing 141 - 150 of 825 annotations tagged with the keyword "Caregivers"

Autism and Representation

Osteen, M., ed.

Last Updated: Jun-02-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Anthology (Essays)

Summary:

The book's chapters derive from a conference entitled "Representing Autism: Writing, Cognition, Disability" held in 2005. Contributors are scholars of English, communication studies, psychology, and other disciplines; some are on the autism spectrum themselves or are parents of autistic people. The book attempts to address what editor Mark Osteen in his introduction cites as a deficit in the field of disability studies, namely that the field has ignored cognitive disabilities. Osteen notes that autism is a spectrum not only among people but within individuals: "any given autistic person's abilities will occupy different locations on [the spectrum] at different times" (7) but a severely autistic person is not merely "different." The editor also addresses the question of self- representation, arguing that "we must strive to speak not for but with those unable or unwilling to communicate through orthodox modes" (7).

The book is divided into four sections: Clinical Constructions, Autistry, Autist Biography, and Popular Representations. Clinical Constructions includes a chapter on Virginia Axline's work with the boy, Dibs (see Dibs: In Search of Self in this database), a child who is now thought to have been autistic; and a chapter on how Bruno Bettelheim convinced the world of science and the public that autism was caused by parental behavior, especially that of mothers ("refrigerator mothers") and that he knew how to cure it. The essayists show how these two psychologists constructed a persona of omnipotence that enabled them to appear to "save" autistic children. Chapter 3 reviews the history of autism as a named condition and contextualizes it.

Chapters in the section on Autistry discuss the mental world of people with autism. Patrick McDonagh (chapter 4) postulates that "the capacity to perceive autism in the 1940s may be connected to the proliferation of modern, and modernist, notions of the self" (102) -- for example, isolation and alienation, and "the removal of referential and conventionally communicative functions from language" (111) that appear in the works of Gertrude Stein, Virginia Woolf, James Joyce. Subsequent chapters apply theories of information processing (chapter 5), metaphor and metonymy (chapter 6), and narrative (chapter 8) to an understanding of the mental world of autistic individuals, and chapter 7 discusses poetry written by autistics.

The section on Autist Biography concerns memoirs written by parents of autistic children. Deborah Cumberland contrasts the memoirs of several mothers with one written by a father (chapter 9) and Sheryl Stevenson (chapter 10) writes about the rhetorical strategies that mothers use "to negotiate contradictions of motherhood that are exacerbated by autism and their own privileged abilities" (199).

The essays in the section, Popular Representations, concern several films and Mark Haddon's novel, The Curious Incident of the Dog in the Night-Time (see annotation). Anthony Baker presents an "autistic formula" used in films and notes that the plots hinge on the way a central character who is not autistic uses the "special powers" of the autistic character, thereby robbing the latter of agency (Chapter 12). Stuart Murray is also critical of how films portray autistic people (Chapter 13). Phil Schwarz, father of a child with Asperger's and an Asperger's adult himself writes about four films ( Thirty-Two Short Films About Glenn GouldSmoke Signals, Breaking the Code, The Secret of Roan Inish) he uses to raise the consciousness of autistic peers and to promote self-esteem in the face of society's attitudes toward autistic individuals (Chapter 14).

The authors of chapters 15 and 16 come to different conclusions about the novel, The Curious Incident of the Dog in the Nighttime. Gyasi Burks-Abbott, "a 34 year-old African-American male on the autism spectrum" (303), criticizes the novel for perpetuating stereotypes and for "relegat[ing] the autistic to otherworldliness while establishing a non-autistic author like himself as the necessary medium between autistic and non-autistic reality" (295). James Berger, on the other hand, argues that Haddon uses the protagonist Christopher to "explore questions about language and social relations" (fn1, 286) and observes that Haddon understands human neurological features as a continuum.

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Annotated by:
Davis, Cortney

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

In 2008, editor and physician Paul Gross launched a new online publication, "Pulse--voices from the heart of medicine" (published by the Department of Family and Social Medicine, Albert Einstein College of Medicine and Montefiore Medical Center). This anthology contains every poem and first-person narrative published during Pulse's first year, arranged in five sections corresponding to publication date and not to theme: Spring, Summer, Autumn, Winter, and Spring.  Paul Gross, in his introduction, states "After more than a decade of practice as a family doctor, I came to appreciate that the science I'd learned in medical school, though powerful and useful, was also incomplete . . . . it contained much truth about illness and healing, but not the whole truth" (xvii).  Like many other caregivers, Gross discovered "that writing and sharing my healthcare stories with others was therapeutic" (xviii).  He looked to "Sun Magazine" as an example of how first person narratives, both prose and poems, could turn "hurts and triumphs into something potentially beautiful, funny or moving" (xviii). 

The poems and prose that arrive every Friday online to Pulse's thousands of subscribers (and the selections in this anthology) are carefully screened by the editors according to these guidelines: the stories have to be first-person, and they have to be true, recounting the writer's own experience.  Submissions are accepted from any person involved in healthcare.  The language used must be "clear, simple language.  No medical jargon. No arcane literary devices" (xx).  Gross and his editors decided that Pulse would not be a medical journal nor a literary magazine--its purpose fell outside the perimeters of both genres--and so Pulse, and this anthology, offers work that is, in a refreshing and honest way, different from the slick or more polished poetry and prose that might be found elsewhere.

In reading this anthology from cover to cover, and so from season to season, I found that the poems and prose seemed to fall into several categories: Personal musings, in which authors relate healthcare experiences that engender intimate and revealing narratives about their own lives--among the best of these are "Well Baby Check," p.3; "Finding Innisfree," p. 31; "First Patient," p. 39; "Losing Tyrek," p. 45; "Carmen's Story," p. 62; and "Chemo? No Thanks," p. 106.  Other pieces are commentaries on the other side of healthcare, the one that cries out for reform and affects both patients and caregivers.  Among the best of these are "Redesigning the Practice of Medicine," p. 9; "A Brush with the Beast," p. 22; "Rx," p. 60; "Halloween Horrors," p. 69; and "Brain Cutting," p. 136.

Other pieces are humorous ("Aunt Helen Sees a Ghost," p. 6) or political ("My War Story," p. 11), and many poems and prose pieces speak of patient encounters or about being a patient, some more anecdotal, relating a specific incident that affected the author ("Once," p. 41) and others multi-layered, some relating medical student or intern experiences ("Jeannie," p. 48; "A View from Nepal," p. 87; "Ripped from the Headlights," p. 90; "Snowscape," p. 97; "First Night Call," p. 100; and "Wounded Messenger," p. 114.)  The "category" I found most interesting and most unique are the selections I will call "confessions."  These writings--demonstrating openess and bravery on the part of the authors--tell of regrets, mistakes, sorrows, wrong calls and other mishaps that occur, daily, in the practice of healthcare.  In these, the most human face of caregiving is revealed.  Although most of the pieces in this anthology contain elements of "confession," the most specifically revealing include "Mothers and Meaning," p. 14; "Physician's Exasperation," p. 44; "Confidential," p. 53; "My Patient, My Friend," p. 73; and "Apologies," p. 104.

Editor's note: Coincidentally, a recent relevant paper on confessional writing by physicians expounds further on this topic:"Bless Me Reader for I Have Sinned: physicians and confessional writing" by Delese Wear and Therese Jones (Perspectives in Biology and Medicine, Vo. 53, No.2, Spring 2010, pp. 215-30).

 

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author, a young physician, guides the reader in temporal sequence through her years as a medical student, medical resident at several levels, and into the final days of her formal training. The format of the work is anecdotal, that is, a series of memorable patient encounters that seem to shape the writer's developing attitude toward her chosen profession. The precise time frame of the experiences is not clear, but this is an acknowledged story of growing into the practice of medicine as a trainee at Bellevue Hospital.

In describing her interactions with her patients, Dr. Ofri reveals her own doubts about her ability to accomplish some of the things expected of her as "healer." As she grows more confident with experience, she begins to challenge some of the rituals in which medical education seems mired. Each of the chapters is a self-contained story focused on a particular patient, some of which have been published previously as free standing essays. The composite is the physician-writer's personal narrative of her own growth and change.

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Invisible Sisters: A Memoir

Handler, Jessica

Last Updated: Apr-24-2010
Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author of this memoir creates a generally temporally sequential tale of the trials of a family fraught with a series of personal tragedies.  The tale is told by Jessica, the eldest of three daughters.  One of her sisters (Sarah) has a rare genetic disorder which affects the daily life of the family as she requires significant medical attention over the nearly three decades of her life.  Into this demanding  drain   on the young family comes the totally unexpected diagnosis of acute lymphocytic leukemia leveled at the youngest sister (Susie).  Susie becomes acutely ill and over a short period of time, dies.

The reader then enters the drama of the dissolution of the family: a father who becomes dysfunctional and unable to assist and a mother who must pick up the remnants and move on with the surviving siblings.  Sarah and Jessica  move forward and live lives into their young adulthoods.  Then, suddenly, Sarah dies.  The remainder of the tale has to do with the author's assessment of the past and of her future.

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Summary:

The story centers on Tsotsi (meaning thug), an adolescent in Soweto, the shantytown slum of modern Johannesburg, South Africa.  There Tsotsi (Presley Chweneyagai) leads a loose-knit gang of menacing thugs.  When gang members are first encountered, Butcher reveals his disturbing and sinister nature; Boston (Mothusi Magano), except for his alcoholism, represents a potentially thoughtful but ineffective source of goodness and decency; Aap (Kenneth Nkosi), a simpleton, is devoted to Tsotsi; and Tsotsi seethes with, as yet, inexplicable rage. 

As the story unfolds, a petty crime leads to senseless murder and an old wheelchair-bound man is threatened and cruelly abused.  Finally, Tsotsi, without gang participation, shoots a woman during an auto theft.  When he drives recklessly away, he discovers an infant in the stolen car's backseat.  Rather than killing the baby, his first inclination, he puts it into a paper bag and takes the baby home.  This new relationship--and responsibility becomes the harrowing twist in the story.   

Throughout, short and disturbing flash backs of Tsotsi's childhood reveal unimagined beginnings that have led to the boy's simmering rage and the string of unforgiving actions.  While concerns about vulnerable children within a context of social injustices are foremost in the minds of film viewers, the overwhelming circumstances and complexities frustrate thoughts about realistic interventions. 


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The Bonesetter's Daughter

Tan, Amy

Last Updated: Mar-22-2010
Annotated by:
Wear, Delese

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The Bonesetter's Daughter is divided into two major stories. One is the story of Ruth, an American-born Chinese woman, a ghostwriter for self-help books, in a relationship with a white man, stepmother to his two teenaged daughters, and finally, daughter of LuLing, who Ruth fears is becoming demented. Ruth begins to realize what her mother's memory loss means to both of them: for her mother, an increased need for attention, for Ruth, disappearing stories that could help Ruth understand her family and render a feeling that she is part of a larger story.

The second major story is that of LuLing, which Ruth discovers in the form of documents LuLing had given her several years earlier, written in Chinese, LuLing's attempt to hold on to fading memories of her life in China. This story within a story--LuLing's life in a village called Immortal Heart; the secrets passed on by her nursemaid Precious Auntie (who, we learn, is also her mother); a cave where bones are mined that may be the teeth of Peking Man; tales of ghosts and curses--parallels in many ways the present-day issues confronting Ruth: an inability to speak up to her partner and his two daughters; why she remains a ghostwriter, without a voice of her own; an increasingly problematic and confusing relationship with her mother. Answers to both women's puzzles and problems unfold as LuLing's story is translated in its entirety, providing answers through memory and words that could not be spoken, only recorded.

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Family Matters

Mistry, Rohinton

Last Updated: Mar-22-2010
Annotated by:
Wear, Delese

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Retired professor Nariman Vakeel, suffering at 79 from Parkinson’s disease and a broken ankle that won’t heal, is more or less cast out of his home by his stepchildren to be cared for by his married daughter Roxana, her husband Yezad, and their two sons. The novel is a portrait of family life and the strife among siblings amidst moments of grace when an aging parent requires care; it is also a rich account of life in Bombay’s Parsi community in the mid-1990s.

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Summary:

The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life is divided into three parts. The first section, “Care Situations,” provides the cultural context of illness and disability and focuses on four common family care situations: cancer, HIV/AIDS, mental illness/chemical dependence, and dementia. The second section of the book, “Care Relationships,” highlights patterns of caregiving, including caring for children, sibling care, couple care, and parent care. The third section of the book contains well over 100 annotations of memoirs of caregiving, each approximately a half-page in length.

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Summary:

This edited anthology, which includes poems, essays, short stories, and other creative forms (e.g., a radio diary, a letter to a social service agency), is organized into sections that include Body and Self, Diagnosis and Treatment, Womanhood, Family Life and Caregiving, Professional Life and Illness, and Advocacy. Most works found their way into this collection through a call for submissions, although a few selections are well known, such as Lynne Sharon Schwartz's "So You're Going to Have a New Body !," or an excerpt from Rachel Naomi Remen's Kitchen Table Wisdom (see annotations). In addition, the anthology also includes essays by scholars such as Arthur W. Frank and Rita Charon, who theorize gendered illness narratives.

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Annotated by:
Terry, James

Primary Category: Literature / Poetry — Secondary Category: Literature / Poetry

Genre: Poem

Summary:

The seven sections of this long poem (128 lines) take the author from admission through a bone-marrow procedure (in front of student nurses), surgical prep, post-op recovery, urinary catheterization, and finally, a melancholic post-discharge confrontation with the decay and death of the natural world in late autumn. Sissman directs a sometimes withering sarcasm against both himself and his caregivers, nevertheless controlling a temptation to overdramatize his suffering or attack the hospital environment too harshly. Keen observation and carefully clever metaphors make poetry his best defense against his own impending death from Hodgkin’s disease.

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