Showing 31 - 40 of 521 annotations tagged with the keyword "Disability"

Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Carol Levine began a roiling odyssey as a caregiver when a car accident left her husband paralyzed and in need of 24-hour care. She regards her husband’s survival as “a testament to one of American medicine's major successes — saving the lives of trauma patients.” But once he returned to their home, Levine encountered a healthcare system that was fragmented, chaotic, and inequitable. Unprepared to address chronic care, it remained oblivious to her needs as her husband’s primary medical “provider,” as they would say. Written nine years after the accident and eight years into her care giving, Levine’s essay recounts the stress and isolation she experienced attempting to navigate that system, to perform unrelenting chores, and to sustain her employment. Her job was, after all, the source of her husband’s managed care insurance, which regularly managed to leave Levine with unpaid bills. Even her work in medical ethics and healthcare policy could not help her locate the assistance she needed to assure the well being of her husband or herself.  Or of other care-giving families.

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Hurt Hawks

Jeffers, Robinson

Last Updated: Mar-22-2015
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

"Hurt Hawks" is a narrative poem about a wounded hawk in free verse of 27 lines divided by the poet into two parts. Part I, which is 17 lines long, describes the setting of the poem in third person. Part II is 10 lines long, written in first person, and comprises the resolution of the carefully constructed tension set up in Part I. Some critics feel that Part II is sufficiently different in style and focus that it was originally an altogether separate poem (see below). Succinct yet lyrical, elegaic yet harsh, Hurt Hawks is, like the hawk that is the center of the poem, fiercely and unrelentingly an advocate of the natural - as opposed to the civilized - world. Hawks held a special place in Jeffers' heart, whether it be this poem or the longer "Cawdor," "Give Your Heart to the Hawks" (the name of a 1933 collection of his poetry), or "Hawk Tower," the edifice that he built for his family in 1920 on Carmel Point in California.

Part I sets the stage for the action in Part II, an Ecce Homo stage where the Homo is an injured hawk living in and around the poet—who makes clear, however, that the hawk is not a prisoner, either in the poet's eyes or its own. The poem opens with:

The broken pillar of the wing jags from the clotted shoulder,
The wing trails like a banner in defeat,
No more to use the sky forever but live with famine
And pain a few days:

Midway through Part II, Jeffers notes that

We had fed him six weeks, I gave him freedom,
He wandered over the foreland hill and returned in the evening, asking for death,
Not like a beggar, still eyed with the old
Implacable arrogance.

This poem is arguably not only Jeffers' most famous poem but often the only one still taught, when Jeffers is taught at all, in undergraduate courses. One reason for the inclusion of this poem in the curriculum is the famous first line of Part II, "I'd sooner, except the penalties, kill a man than a hawk." Aside from its popularity and this rather striking sentiment, the poem has proved a fertile source of discussion amongst critics for other reasons. First is the striking shift in voice from Part I to Part II, leading some to state that this poem was welded together from two distinct poems. Secondly, the plural "Hawks" in the title is mysterious and unclear since there is only one hawk mentioned in the poem—or is there? One interpretation of the plural is that in fact Jeffers and his family harbored two hawks and only the second was killed. Tim Hunt feels the second injured hawk in the poem refers to the saddened, or emotionally hurt hawk, i.e., the poet of Part II.

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Summary:

This anthology is a sequel to Pulse: The First Year (2010). Both anthologies are comprised of postings to the website “Pulse: voices from the heart of medicine,” an online publication that sends out short poems and prose pieces every Friday. As the website subtitle suggests, the topics are from the medical world, the writing is personal (not scientific), and the writers give voice to feelings and perceptions from their direct experience as care-givers, patients, or family members of patients. All the pieces are short (typically one to five pages), usually with a tight subject focus. For example, in "Touched," Karen Myers reports how massage has helped her muscular dystrophy. 

The postings in the second anthology originally appeared from April 2009 through December of 2010. Because the 87 pieces appear in the order they were published, they don’t have linear coherence. Therefore the editors of have thoughtfully provided four indices in the back of the book: by author, by title with summaries, by healthcare role, and by subject/theme.

Prose pieces vary widely in style and technique. The poems are almost all free verse, although some poets have used regular stanzas. “Depression Session,” (p. 157) is an 18-line poem by a physician about a difficult mental patient. Many of the pieces explore the intensity of medical subjects with impacts on doctor, patient, and/or family. Some of them show limits of medicine. “Pearls before swine” (p. 191) relates the experience of a third-year medical student in a rotation at the office of a racist and sexist physician. “Babel: the Voice of Medical Trauma” (p. 158) dramatically tells the story of a poorly handled birth at a hospital.  

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Linden, a professor of neuroscience, has written a book for a general audience on the subject of touch. A synthetic thinker, he combines insights from science, anatomy, neurophysiology, psychology, and social behavior. He argues that touch pervades much of human experience: “From consumer choice to sexual intercourse, from tool use to chronic pain to the process of healing, the genes, cells, and neural circuits involved in the sense of touch have been crucial to creating our unique human experience” (p. 5). Case studies of medical oddities enliven his account.

Chapter One, “The Skin is a Social Organ,” draws on a wide range of examples, from NBA players to vampire bats. Touch is especially important to the development of human newborns. Lab experiments have shown that the attitude of the toucher can influence the experience of the touched. English and American cultures are touch aversive.

Chapter Two discusses the neurophysiology of touch, the sensory nerves and the neurons that link to the spinal cord or to the brain. Lively examples include string players, 1900-era women with “underwear-shaped numbness,” and the Braille writing system for the blind. 

In Chapter Three, “The Anatomy of a Caress,” Linden explores further the tactile fibers that relay touch. “A caress communicates that you are safe,” he writes, and the C-tactile system is the main route from skin to the brain.

Chapter Four, “Sexual Touch,” moves beyond caress all the way to orgasm, detailing the roles of touch receptors and brain activity as well as the wide variety of personal and social contexts.

Chapter Five looks at nerve endings of human skin that detect chili peppers as hot and mint as cool. Vampire bats have another version that detect heat, useful for locating blood vessels on “donors.”

Chapter Six, “Pain and Emotion,” opens with Pakistani children who do not feel pain; they have a genetic mutation that influences a sodium channel in neurons. Pain itself varies with people’s emotions, experience, and expectations. Some mindfulness practices (yoga, Tai Chi, meditation) can lessen chronic pain.

Chapter Seven, “The Itchy and Scratchy Show,” discusses river blindness and shingles, among other topics.

Chapter Eight, “Illusion and Transcendence,” provides a helpful overview of sensory nerves and their connection to various parts of the brain. Some stimuli activate the “emotional-affective-cognitive portions,” while others activate “sensory-discriminative centers.” Touch, in general, often has strong social meanings but does not, for Linden, imply any supernatural dimensions.  

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Summary:

Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).

By compiling this useful selection of well known and less familiar stories and poems, Levine increases the visibility of the experience of familial caregiving among works of literature about medicine. While illness literature is typically classified by disease or disability, Levine focuses instead on the relationships between caregivers and those being cared for. Her collection organizes the literature into five parts: Children of Aging Parents; Husbands and Wives; Parents and Sick Children; Relatives, Lovers, and Friends; and Paid Caregivers who assist families. The literature in each section tends nonetheless to represent particular conditions: dementias, including Alzheimer's disease, cancer, and frailty in the first two sections; childhood cancer, hyperactivity, and mental illness in the third; AIDS in the fourth. 

Probably the most familiar and powerful works include Rick Moody's "Whosoever: The Language of Mothers and Sons," Ethan Canin's "We Are Nighttime Travelers," Alice Munro's "The Bear Came over the Mountain" (the source for the film "Away from Her"), Lorrie Moore's "People Like That Are the Only People Here," and several poems: Mark Doty's "Atlantis" and selections by Donald Hall, Jane Kenyon, James Dickey, and Raymond Carver.

These and the less familiar works offer disparate responses from both caregivers and those they care for. The narrator of Tereze Gluck's "Oceanic Hotel, Nice" thinks "what a bad person I was to not even want to touch his feet. . . it made me shudder" (220). The wife in Ann Harleman's "Thoreau's Laundry" cannot place her husband with Multiple Sclerosis in a nursing home because "his presence, however diminished, was as necessary to her as breathing" (116). The caregiver in "Starter" by Amy Hanridge "didn't want to be the person people feel bad about" (180).  Several stories explore the limits of obligation. As is often the case, the son in Eugenia Collier's "The Caregiver" is sick himself, failing to schedule his own doctor's appointments and dying before his mother. Marjorie Kemper's witty, exuberant "God's Goodness" plays out an unexpected relationship between a dying teenage boy and his Chinese immigrant aide, while his parents remain in the background.

Carol Levine's brief introduction to the collection explains that she excluded excerpts from memoirs and selected only very recent literature, almost all from the past three decades. A Resources section at the end includes some introductory medical humanities resources and practical resources for caregivers.

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

This is a compendium of original critical essays on a wide range of topics written by a diverse group of scholars of what has traditionally been called "medical humanities." The editors argue for a change of name to "health humanities," pointing out that "medical" has a narrow frame of reference - evoking primarily the point of view of physicians and their interaction with patients, as well as the institution of biomedicine. Such a focus may exclude the myriad allied individuals and communities who work with patients and their families. The editors quote Daniel Goldberg, who notes that the health humanities should have the primary goal of "health and human flourishing rather than  . .  the delivery of medical care" (quoted on page 7).

The three editors are innovative contemporary scholar-educators in the field of medical/health humanities. They advocate Megan Boler's "pedagogy of discomfort" (quoted on page 8) and wish to provide students and educators "an opportunity to examine critically the origins and nature of their personal beliefs and values, beliefs and values embedded in the curriculum and the learning environment, as well as institutional policies - all of which intersect" . . and influence quality of care (8). In their own work and in this Reader the editors favor an approach to health humanities education and research that "challenge[s] the hegemony of a biomedicine that contributes to disparities and the discrimination of persons who don't quite fit the codified and naturalized norms of health."

The book is divided into 12 parts, each comprising three or four chapters: Disease and Illness, Disability, Death and Dying, Patient-Professional Relationships, The Body, Gender and Sexuality, Race and Class, Aging, Mental Illness, Spirituality and Religion, Science and Technology, and Health Professions Education. At the end of each section there is "an imaginative or reflective piece" on the topic. A wide range of disciplines is represented, including disability studies, history, bioethics, philosophy, literature, media studies, law, and medicine. Some of the authors are well-known and have been practicing their profession for many years (for example, Arthur Frank, Sander Gilman, Anne Hudson Jones, Martha Montello, John Lantos) while others have entered the field more recently and are gaining increasing attention (for example, Rebecca Garden, Daniel Goldberg, Allan Peterkin, Sayantani DasGupta).

The Reader is well documented: there are footnotes at the end of most chapters, a references section of 50 pages, notes on contributors, and a 72-page index.

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Polio: An American Story

Oshinsky, David

Last Updated: Sep-16-2014
Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: History

Summary:

 In his introduction, the author summarizes the history of polio’s first appearance as an epidemic in the United States, the ensuing research, subsequent applications of new information, attempts at abatement and ultimate success in the development of preventative measures.

Embedded in the successes and failures of the research applications are the details of human interactions.  Their impact on the goal of achieving near extinction of polio in America constitutes a dramatic subplot, which the historian adroitly weaves into the work.

For the reader who has only a sketchy knowledge of this important period in medical research, this history provides details of human exchanges, conflicts and resolutions necessary to bring the scientific developments to fruition.  Central among the multiple struggles rests the basic disagreement between Jonas Salk and Albert Sabin, two of the most prominent scientists working against the clock to develop the most effective and safest form of immunization.  Each new surge of the disease added to the urgency of the problem as well as to the question of the best solution.  Salk felt strongly that the immune system should be stimulated by a killed virus preparation, while Sabin was equally convinced that only the living virus could provide this need.  Each view had its own cadre of supporters and of opponents.

Funding issues also troubled those fighting the polio epidemics.  The March of Dimes is credited with raising a record $55 million in the fight against polio in early 1954, becoming the first major infectious disease battle to benefit from a concerted public awareness campaign and demonstrating the power of such volunteer driven efforts to supplement public and other private funding efforts.

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This book combines social history with personal memoir. It serves as a reflection on how the various challenges of living with chronic illness have shifted over time, and how they are still real and present for the increasing portion of the population who suffer from ills invisible to others and often hard to account for.  The book's brief treatments of cultural and medical approaches to chronic illness, from ancient practices to "patients in the digital age," provide a broad perspective against which to consider current legislative, political, medical, and personal concerns for those coping with chronic illness or disability. 

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Cartoonist Roz Chast's memoir is a rich, satiric, forthright, and at times deeply disturbing exploration of how she negotiated the decline of her aging parents. Disturbing because the description of all the elements with which she had to deal in easing them toward death highlights the myriad difficulties and complexities many of us will also face. Her account is centered on her relationship with her parents, moving back and forth between her childhood (unhappy) and the more recent past. Chast brings to life her father and mother's disparate personalities and makes no bones about her fraught interaction with them, especially with her mother, and her ambivalence about having to take responsibility for helping them in their final years,.

The memoir is divided into 18 chapters plus introduction and epilogue. The book has elements of multi media presentation, consisting of cartoons accompanied by extensive text in "balloons"; additional handwritten commentary - sometimes occupying an entire page; photographs - of family, and rooms in her parents' Brooklyn apartment plus items found therein; reproductions of her mother's poetry, typed and handwritten; and, finally, drawings (not cartoons) of her mother in her last days.

Chast notes that she is an only child and that her parents were older than most parents while she was growing up. The implication: the burden of taking responsibility rested solely on her and became an issue while she was raising her own family, when her parents were in their 80s. Chast makes clear that she was completely unprepared for everything that would be involved and that her parents had done nothing and would do nothing to make their own preparations for disability - "Can't we talk about something more pleasant?"

Chast's story begins with her impulsive visit - after an absence of 11 years- to the Brooklyn apartment where she grew up and where her parents still reside. She is appalled by the grime and clutter they live in. A few years later, when her parents are 90, Chast reluctantly visits more regularly, speaks to them daily on the phone, and hopes their lives will continue uneventfully and "maybe they'll both die at the same time in their sleep" (22). As Chast visits her parents more frequently the idiosyncrasies that used to irritate her still irritate her and there is no escape - they are too old and needy to run away from. Complicating the situation, her parents deny their neediness and reject most interventions that might help them in their daily lives.

When her parents are 93, after her mother falls a few times and her father shows increasing signs of forgetfulness, Chast manages to persuade her parents that they should together consult an "elder lawyer" - a specialist in "the two things that my parents and I found it most difficult to discuss: DEATH AND MONEY" (38). Even with the legalities this step puts in place, Chast feels overwhelmed when her mother is hospitalized for acute diverticulitis, leaving Chast to care for her increasingly senile father, prepare for her mother's return home, and worry about how her parents will be able to live on their own. The author makes fun of her helplessness: when she arranges for an ambulette to take her mother home from the hospital Chast congratulates herself, admitting "I had a pathetically large amount of pride in myself for doing things like that" (84).

A year later it is clear to all concerned that Chast's parents cannot continue to live alone. Chast is fortunate to quickly find a spot in an assisted living facility ("The Place") close to her own home. After settling her parents there she must sort through and empty out their Brooklyn apartment. A major undertaking. After a while "I was sick of the ransacking, the picking over and deciding, the dust, and the not particularly interesting trips down memory lane" (121). At the same time, Chast must arrange for her parents' aides, buy furniture and other items - total costs were high and not covered by insurance - "it was enraging and depressing" (128); how long her parents' savings and pensions would cover their expenses became a constant worry for Chast. Money worries became more acute after Chast's father fell and broke his hip, needing additional daily care. "I felt like a disgusting person, worrying about the money" (145). At the same time, Chast mourns her father's obvious decline and resents that her mother is insensitive to her feelings "it was, as it always was, completely about her" (141).

Chast's father dies (miserably), aged 95; her mother lives for two more years, in and out of a nursing home, not eating, rallying under the care of a hired attendant, then fading again. During this period, as the mother herself notes, "her brains were starting to melt." Chast feels the need to "have a final conversation with my mother about the past" (201), expressing the wish that they could have been better friends while Chast was growing up. The response is not what Chast had hoped for, and she is surprised by how upset she feels. Yet a week before Chast's mother dies, the mother declares love for her daughter.

When her mother is no longer communicative, Chast draws her as she lies in bed - Chast's manner of communication, bringing to mind other artists who drew dying loved ones in their final days (see annotations of Sue Coe's "The Last Eleven Days" and Ferdinand Hodler's "The Dying Valentine Godé-Darel" ). In the epilogue, Chast explains her decision to store the "cremains" of both parents, separately, in her bedroom closet. "Maybe when I completely give up this desire to make it right with my mother, I'll know what to do with their cremains. Or, maybe not" (227).

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Five Days at Memorial is the book length expansion  of the New York Times Sunday Magazine article that the author, a Pulitzer Prize-winning physician-journalist, published in 2009. The book, the result of years of research and literally hundreds of interviews, chronicles the five days (August 28 to September 1, 2005) during which the medical staff remaining at Memorial Hospital in New Orleans tried to care for the patients -- over a hundred of them stranded, like the staff, in a hospital without water or electricity --following the flooding wrought by Hurricane Katrina.

After an 8 page prologue, the book is divided into two sections, "Deadly Choices" (228pp, the narrative of those five days) and "Reckoning" (256pp, the legal battles over the injections of midazolam (a sedative) and morphine by some of those staff and prosecuted as homicide -- what others called "euthanasia.") "Deadly Choices" relates almost hourly the five days inside Memorial from the viewpoint of patients, patients' relatives, physicians, nurses, administrators of Memorial, Tenet (the holding company owning and running Memorial) and LifeCare -- the long-term care area within Memorial devoted to the care of terminally ill and debilitated patients -- owned by a separate company. Ethical and legal questions of triage, DNR, record-keeping, accountability, communication (primarily the failure thereof) and leadership are on almost every page. At the heart of this book, however, is the mystery of the unexplained deaths of so many patients during those five days. (On September 11, 2005, a disaster mortuary team recovered 45 bodies from many different places in Memorial, page 234). The crux of the mystery of these deaths is the manner in which nine in particular died in the beleaguered hospital on the fifth and last day when, paradoxically, relief had become real and effective and inclusive, seemingly obviating such injections.

The final pages of "Reckoning" deal with the fallout - historical, ethical, political and medical -- and current events relevant to these five days and the almost two years following. (The final verdict of not guilty -- the actual wording was "Not a true bill" since it was a grand jury declining to indict the one physician, Anna Pou, and the two nurses, Cheri Landry and Lori Budo -- was rendered on July 24, 2007). There are a map of Memorial Hospital and a cast of characters at the front of the book and extensive notes, bibliography and index at the end.

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