Showing 171 - 180 of 515 annotations tagged with the keyword "Disability"

Annotated by:
Davis, Cortney

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In 1997, the author’s 14-year-old son, Ike, began a puzzling, progressive degenerative illness. Slowly, this undiagnosed disease claimed Ike’s ability to walk, to study, to participate in normal adolescent activities and, finally, to reason. Going from physician to physician, seeking if not a cure than at least a working diagnosis, the author became a self-taught expert in all things neurological.

As her son’s condition worsened, she also became an expert in grief and despair. In Blue Peninsula, her first book, McKeithen relates how she became, as well, a poetry addict--reading, devouring, tearing poems out of journals, buying volumes that she could carry to office or hospital, hiding poems in her purse or pocket. Using poems or pieces of poems--sometimes she could not bear to read a final stanza, one that perhaps ended in death or unrelenting despair--she cobbled together a survival plan.

Indeed, in this small book of short, to-the-point chapters (with titles such as "Crying in the Car," Open to It," Acquiring Losses," Sifting Questions," "Naming," "Shipwreck," and "Shelving Selves"), she reveals how she used poems to grieve, to question, to celebrate, to maintain, to curse, and to endure. The story of Ike’s illness, treatment and slow decline are interwoven with these poems and the author’s often surprising commentary on how she mined the poet’s metaphors. If a poem could put suffering into words, the author suggests, she needed that poem to survive.

The author’s choice of poems and poets is far-reaching, and her interpretations of what they mean and how they helped her along the path of her son’s illness are intimate, gritty and insightful. A brief listing of poets includes Emily Dickinson (whose poem "Blue Peninsula" supplied the book’s title), Billy Collins, Elizabeth Bishop, Diane Ackerman, Zbiginew Herbert, The Rolling Stones, Paul Celan, Molly Peacock, David Whyte and many others, known and lesser known.

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The Echo Maker

Powers, Richard

Last Updated: Nov-19-2009
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Mark Schluter, a 27 year old beef-processing plant worker, becomes involved in a car crash outside Kearney, Nebraska, the locus of this novel. The car crash---on February 2, 2002, a date that the author wishes to impress the reader as one that seems too numerically mystical (02/02/02) to be co-incidental--clearly has mysterious elements about it since it occurred far outside town on desolate flat country roads and amidst the tire tracks of another car. Too, just after Mark is hospitalized, there appears an undecipherable note of anonymous provenance:

I am No One
but Tonight on North Line Road
GOD led me to you
so You could Live
and bring back someone else.

Mark has an initially troublesome route to recovery, including a temporary ventriculostomy to relieve the pressure in his head. Meanwhile his only sibling, Karin, 31, rushes to his side from Sioux City, a move that becomes permanent and costs her her job. Mark eventually awakens but with an unusual mis-identification syndrome, called the Capgras syndrome (more commonly encountered in patients with psychiatric condition), in which the patient fails to recognize those closest to him as such. For a Capgras patient, there is a disconnect between the visual ability to recognize their faces and emotional response to them as close relatives or friends. He recognizes the visual similarity but considers the significant other an impostor.

This rupture in the usual see-sister's-face-acknowledge-as-sister apparently occurs, in the Capgras syndrome, in connections between one's "primitive" or "reptilian" brain, including the amygdala, and the cortex. Much is made of this failure of neuronal circuits to connect, and reminds one of the parable in His Brother's Keeper (see database) about the Chinese Emperor and the failure of the transmission of a message to explain the pathophysiology of amyotrophic lateral sclerosis. As Karin remembers the neurologic explanation, " 'His amygdala, she remembered. His amygdala can't talk with his cortex" [original italics] (80). This amygdala-cortex dichotomy becomes, in behavioral terms, feeling versus reason. As discussed by the two neurologists involved in Mark's case, "But no emotional ratification. Getting all the associations for a face without that gut feeling of familiarity. Pushed to a choice, cortex has to defer to amygdala"; "So it's not what you think you feel that wins out, it's what you feel you think" (131).

Out of desperation, Karin emails a request to Gerald Weber, a famous cognitive neurologist-author modeled primarily after Oliver Sacks but with a little A. R. Luria, whose "To find the soul it is necessary to lose it" is the epigraph of the novel. From the time Weber meets Mark and Karin, the book becomes an intricately entangled design of various metaphysical threads all of which, directly or indirectly, revolve around Mark's syndrome and identity--in fact the identity of all the characters. Karin becomes involved-- re-involved-- with two men from her earlier days in Kearney, Robert Karsh, a developer, and Daniel Riegel, a conservationist. Later the two men become ideologically more opposed than ever when Karsh tries to develop the annual nesting grounds of the cranes, Grus canadensis, who return to Kearney, thousands of them, every February. Barbara Gillespie, a guardian angel to Mark at the extended care rehab center, and Gerald Weber, until then a man happily married to a prototypically liberal intellectual woman, Sylvie Bolan, become romantically drawn to each other. Weber's own doubts about his work and his public image after unprecedentedly critical reviews of his latest book torment him and lead to concerns about his own identity as a physician who may be using, rather than trying to understand, his patients.

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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.

Unlike today, "In mid-nineteenth-century America, the condition of the mentally ill seemed to demand-and to a large degree received-national attention and the full creative energy of a group of dedicated reformers" (p. 2). Reformers linked the emancipation of slaves with curing the delusions of the insane. Slaves and the mentally ill had in common deprivation of their civil liberties; however, the difference was that white mental patients could be expected to grow up eventually, whereas black slaves would always remain children, and hence could not be trusted with the right to vote, own property, or sign contracts.Some causes of insanity were deemed to be the individual's reaction to the stress of modern life, too much freedom and choice, religious fervor, masturbation, or excessive study. In their aggressive attempts to remake patients into proper gentlemen and ladies, the new asylums promoted cultural activities such as reading selected texts, theater performances and writing.

Most asylums housed males and females in approximately equal numbers; cultural activities for females stressed piety, fashion, and domestic activity while men could comment on politics, the temperance movement, and opposition to women's rights. Reiss refers to the French model of using cultural activities in asylums, f.ex., Philippe Pinel's staging of plays to educate patients, and Marquis de Sade's theater performances at Charenton. He ends with a discussion of patient narratives that depict some horrific abuses tolerated in nineteenth-century asylums; the degree of these abuses is familiar to us from One Flew Over the Cuckoo's Nest (see film annotation).

The work includes a few illustrations, the most important being an engraving from a painting by Tony Robert-Fleury titled: Pinel Freeing the Insane (1876). (Yale University). Philippe Pinel (1745-1826) was a French pioneer in the humane treatment of mentally ill patients. A Director of Bicêtre Hospital in Paris, he is depicted as a heroic physician, liberating, mostly female, patients there. However, scholars have shown that only 10 of the 270 patients were chained, and that Pinel '"accepted the traditional use of chains to restrain the violent insane as a matter of course"' (p. 160). Reiss's point is that the revolutionary nature of Pinel's treatment of the insane has been exaggerated.

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Annotated by:
Mathiasen, Helle

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

Subitled, Invisible Wounds of War. Psychological and Cognitive Injuries, Their Consequences, and Services to Assist Recovery, this monograph features 27 contributing researchers. Published by the RAND Corporation, it is funded by a grant from the Iraq Afghanistan Deployment Impact Fund. The study was conducted under the joint auspices of the Center for Military Health Policy Research, a RAND Health Center, and the Forces and Resources Policy Center of the National Security Research Division of the RAND Corporation.
 
The work deserves our full attention as it delineates and explains the economic, human, medical, political, public health, and social consequences of injuries suffered by returning veterans of US involvement in 8 years of continuous conflict in Afghanistan and Iraq. The introduction defines the three kinds of invisible wounds affecting thousands of the 1.64 million American troops deployed in Operation Enduring Freedom (Afghanistan) and Operation Iraqi Freedom (Iraq) since 2001. These combat related injuries are post traumatic stress disorder (PTSD), major depression, and traumatic brain injury (TBI). Upwards of 26% of returning troops may have mental health concerns, including drug and alcohol dependency, homelessness, and suicide.

The monograph analyses numerous studies of these issues, both governmental and non-governmental, and RAND has conducted its own study. The data collection is recent: from April 2007 to January 2008. RAND estimates that approximately 300.000 persons currently suffer from PTSD or major depression; in addition, 320,000 veterans may have experienced TBI during deployment.

The recommendations include evidence based care at the VA level, the state and community level, and on site in Afghanistan and Iraq. Adequate care would pay for itself and save money in the long run by improving productivity and reducing medical and mortality costs for members of the US armed forces.

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Annotated by:
Henderson, Schuyler

Primary Category: Literature / Nonfiction

Genre: History

Summary:

A memoir of raising a daughter with autism and an anthropological and historical investigation into autism around the world, Unstrange Minds: Remapping the World of Autism draws upon Grinker's own experiences, those of families of children with autism in the United States, Korea, India and South Africa, and a variety of experts and caregivers.  Putting the story of autism into a historical, anthropological, and personal context, the book deals with hot-button topics - the question of an autism epidemic, of etiology, of treatments - with a careful, patient approach.

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Annotated by:
Nixon, Lois LaCivita

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Not quite the familiar home-for-the-holidays genre of a dysfunctional family, this one has a twist.   April is a late-teen "problem" daughter who has run away to New York City where she lives with her boyfriend, Bobby (Derek Luke).  April, played by a grungy, pigtailed, and probably tattooed Katie Holmes, has invited her parents, siblings, and grandmother to Thanksgiving dinner.  This reunion, we gather, is the first since April left home.  The family is coming to her lower East Side tenement, a situation that bristles with possibilities.  

Moving back and forth from April's low rent apartment to tension in the crowded car as it moves from a scenic suburb to cityscape, viewers are able to watch both April's unskilled efforts as she struggles with the slippery turkey, a can of cranberry sauce, crepe paper decorations, a broken oven, etc. and an inexplicable drama slowly unfolding in the crowded car.  In spite of crisis situations in both settings, the separate family members do get together for a dinner that neither could have planned. 

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

On February 16, 2003, readers of The New York Times Magazine came upon Harriet McBryde Johnson's cover story, "Unspeakable Conversations," and a remarkable image of her gazing directly at those readers from her power wheelchair.  Her story memorably recounts her uncompromising, yet civil disagreements with Utilitarian philosopher Peter Singer about nothing less than the value of her life.  That narrative essay is one of eleven stories published in Too Late to Die Young.

They make the case that philosophers and others have incorrectly imagined Johnson's life, and the lives of others with chronic and disabling conditions, as burdensome and not worth living.  Born with a degenerative neuromuscular disease, Johnson grew up in a family that appreciated her; she practiced law in her native Charleston, South Carolina, and became nationally known for her disability activism.  Still, she encountered a world filled with people who feared her condition.  Fear, she found, led them to assume that disability inevitably brings suffering and to use that assumption to justify acts that would prevent her birth.

Her stories, conversationally and often humorously, ask readers to question why they burden some people with calls to justify their lives or to assure the world that they experience pleasure.  Each story recounts an episode that reveals the pleasures Johnson experienced as an active agent in the world.  She ran for a county office, represented her state at a Democratic National Convention, stood her ground for free speech and against Secret Service tactics when President Reagan spoke at her law school, protested Labor Day Week-end telethons, traveled to Cuba to cover a disability conference for a magazine, advocated for clients in employment discrimination cases, and made many, many friends.

Feeling exhilarated rather than confined by her wheelchair, she bears witness, perhaps unexpectedly, to another pleasure:  "the simple delight of movement."  She writes of maneuvering around Charleston, "I zoom through chaotic swarms of tourists, zip around the raggedy sidewalks . . . loop around every inconveniently placed garbage can, with maximum speed and also with style and grace" (252).  But her stories also describe her wheelchair stumbling over incompatible surfaces, one of which sends her to an emergency room far from home.  This episode also brings moments of grace, this time with the ER staff.  After learning who she is, they Google her on-line profiles and writings.  Delighting in their patient with unpredictable needs, they place print-outs of her electronic portfolio in her chart.

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Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

In the 1527 sack of Rome, undiscplined troops of the Holy Roman Emperor rape, pillage, and destroy. The beautiful couresan Fiammetta Bianchini opens her house to the marauders, inviting them inside for food and comfort. The act gives her household a moment’s reprieve. Her golden tresses savagely shorn, she swallows her jewels and escapes north to her native Venice in the company of her servant and companion, the dwarf, Bucino Teodoldi.

Arriving with almost nothing, they set about establishing a reputation and securing backers. The small company is helped by Fiammetta’s friend and admirer the satirist and poet, Pietro Aretino. Her portrait is painted by his friend, Titian.

Clever and loyal to a fault, Bucino frets over finances and willingly engages in subterfuges that mesmerize their audiences. Fiammetta accepts the attentions of tedious but wealthy admirers in exchange for a house and status. She comes to rely on a blind woman healer, called La Draga who supplies medicine and cosmetics. Bucino is suspicious and jealous, but he tolerates the competition grudingly. He too has many ailments, including headaches and arthritis, because of his deformity.

Suspense swirls around a banned book, a Jewish shopkeeper, and La Draga’s mysterious origins in the glass-making town of Murano.

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Deaf Sentence

Lodge, David

Last Updated: Jun-08-2009
Annotated by:
Aull, Felice

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Desmond Bates is a retired professor of linguistics who lives with his second wife, "Fred," in a "northern" British town. He is becoming increasingly deaf, and, although he wears hearing aids (except when he doesn't), his social interactions--even those with Fred--are fraught with difficulty and occasional hilarious misunderstandings. His deafness is at the center of the novel, providing the title of this work of fiction, but also serving as an extended, often funny, but ultimately serious impetus to riff on aging, disability, and mortality. "Deafness is a kind of pre-death, a drawn-out introduction to the long silence into which we will all eventually lapse" (19).

Bates is at loose ends. His wife is busy with her successful interior decorating business, his adult children live elsewhere. He considers himself a "house husband" and does not really enjoy it. His aged, widowed father insists on living alone in London although he cannot be trusted to take care of himself without endangering his life (such as starting a fire in the kitchen during meal preparation). Bates visits him dutifully once a month with a mixture of dread, obligation, and guilty relief when it is over.

Desmond's hearing difficulty and boredom set him up for an encounter with a female graduate student and its unexpected complications. She is working on a thesis about suicide. Their interaction is threaded throughout the book and drives the "plot," but the details of life with hearing impairment, loss of professional involvement and purpose, and coping with an old, stubborn parent who is slipping into dementia are the main events of this clever, well-written, entertaining novel. And along the way are witty commentaries on contemporary life. The link between the narrator's profession of linguistics and his difficulty hearing the spoken word are also significant.

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Triggered in part by a trip to the Galápagos Islands, the author interweaves two parallel narratives: Darwin's "journey toward evolution" along with the related work of Alfred Russel Wallace; and the author's own journey through life, partially disabled and dependent on the specially fitted shoes that help him to walk.  Together these two narratives develop "all I have come to understand about chance and change, fear and transformation, variation and cultural context, ideas about the body that question the definition and existence of difference in all of our lives" (xvii).

Born with an unnamed congenital condition in which his fibulae are absent along with other lower limb "abnormalities," Fries underwent five major reconstructive surgeries as a child, but after those, what helped him most were special shoes that were fitted to his special body, assisting him to walk.  As an adult, however, he begins to experience back pain and knee problems.  The memoir relates, both in flashback, and in the present day, Fries's quest for a proper pair of shoes that will help him avoid yet another surgery -- the shoes he has been wearing are 20 years old and no longer do the job.  We meet Dr. Mendotti, who treated him like a peculiar specimen and offered a pharmacologic way out of his pain; shoemaker Eneslow, in a dingy Union Square office, whose shoes not only fit Fries well, but were festive in appearance -- "I felt both normal and special" (17); other practitioners of orthotics who try but fail to construct shoes that relieve Fries's pain, and finally, the gifted, patient orthoticist, Tom Coburn, who persists until he is able to provide shoes that work.  The shoes have been adapted for Fries's body, just as man has constructed adaptations that allow him to live in a variety of climates and circumstances.  Conversely, Fries, convinced he "can adapt to the circumstances in which my body places me (169)," draws from Darwin, whom he quotes: "individual differences are highly important for us, as they afford materials for natural selection to accumulate" (169).
 
Darwinian connections are invoked throughout the narrative.  The peculiar configuration of Fries's feet and shoes help him to ascend a series of mountain ladders while his partner, Ian -- who usually has to assist Fries with such physical maneuvers -- suddenly becomes fearful of the height and exposure;  back problems might have developed even without his congenital abnormalities because evolution of the capacity to walk upright included the tendency toward back pain; the role of chance in natural selection and the role of chance in the physical fact of congenital conditions; the positive role that his partner Ian's attention deficit disorder (ADD) could have played in the days of hunter-gatherers and the cultural context in which ADD is now considered to be "abnormal."
 
Fries discusses his fears -- both rational and irrational -- as well as his awareness of stigma, difference, and sameness.  The context of these discussions is usually a reminiscence about vacations in far-flung countries (Thailand, the Galápagos, Bali, Alaska, the Canadian Rockies) and physically challenging domestic locales (a Colorado River raft trip, the Beehive Mountain in Acadia National Park).  He  occasionally brings into the discussion his homosexuality, especially as his physical deformity affected sexual encounters.  The relationship between Fries and Ian is woven throughout the memoir as one of understanding, mutual need and benefit.  As the memoir ends, Fries worries about the likelihood he will need a wheelchair, but is at the same time gathering confidence in his ability to ride the Easy Flyer bicycle that Ian has discovered at the local bike shop.

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