Showing 71 - 80 of 515 annotations tagged with the keyword "Disability"

Chronic Progressive

Cohen, Marion

Last Updated: Jul-29-2010
Annotated by:
Schilling, Carol

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

In Chronic Progressive, a collection of 151 short poems divided into three parts, Marion Deutsche Cohen, a well spouse, continues her startlingly candid account of caring for her husband Jeff that began in her previous collection, Epsilon Country (1995, see annotation).  Part I of Chronic Progressive describes Cohen's frustrations during the last of the 16 years that she cared for Jeff at home, as multiple sclerosis left him almost completely dependent on her.  Mother of four, a prolific writer, a poet, and a mathematician, Cohen describes unrelenting stress when family services and insurance providers fail her, when she feels she must protect the sanctity of her home as health care aides and agencies treat it like a hospital or nursing home, or when she's exhausted, which is most of the time.  "It's a state, a / chronic state, a chronic progressive incurable state," she writes (55).

The middle section, the longest, follows Cohen during the ten years Jeff resides in Inglis House, a Philadelphia care facility.  These poems mix reflections on the past with working out the rhythms of life without Jeff in the house, but still unshakably on her mind.  In this section, she also writes "The Last Love Poem for Jeff" and anticipates his death in "A New Vow": "I will give you the best deathbed anyone ever had" (108).  In Part III, Cohen experiences relief and begins life with a new spouse after Jeff's death.  She recalls herself as ". . . the one he began with, the one he'll end with / the one who's been too much in the middle" (162).  But she quickly turns to "Wedding Preparations Former Well Spouse Style" and the "Love Poem for Her New Love."

Taken altogether, the poems reveal a profound effort to sustain vitality and remake ways of living-with integrity-at the edge of human endurance.  "Yes, how readily we reclaim our territories," Cohen observes near the end of her book (180).

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Dancing After Hours

Dubus, Andre

Last Updated: Jul-28-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

This story is told from the perspective of Emily, a forty-year-old spinster and former high school English teacher, who tends bar in a Massachusetts town. Emily has built a "disciplined" life, seeking to protect herself from the emotional pain of earlier failed romantic attachments, and from the cynicism that propelled her out of teaching--a cynicism born out of the apathy with which the students responded to her own passionate love of poetry. She has held herself aloof from the cautious social overtures of Jeff, the bar manager.

One night, a white man in a wheelchair and his black male attendant drive up to the bar. The arrival of this pair leads Emily to examine and re-assess her life. "Emily had worked [t]here for over seven years, had never had a customer in a wheelchair, and had never wondered why the front entrance had a ramp instead of steps." The disabled man, Drew, is quadriplegic (the result of diving into a wave at age 21, as Emily later finds out). But he and his attendant, Alvin, seem to be comfortable in the bar and with each other, and Emily relaxes.

As she observes Drew and watches how Alvin helps him, she tries to imagine their lives. "She thought of Drew . . . learning each movement he could perform alone, and each one he could not; learning what someone else had to help him do, and what someone had to do for him . . . So, was anyone boundless? Most of the time, you could avoid what disgusted you. But if you always needed someone to help you simply to live . . . you would . . . become disgusted by yourself."

Emily also imagines Jeff's life as a divorced father, and she can even empathize with Jeff's former wife, who left him. Jeff, she learns, had had a friend who became quadriplegic, the victim of a land mine during the war in Vietnam--hence the ramp entrance to the bar. As the story ends, Emily agrees to let Jeff cook lunch for her.

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Letters to a Stranger

James, Thomas

Last Updated: Jul-25-2010
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

Letters to a stranger is a slim volume of poems by Thomas James ((1946 - 1974) posthumously collected and published in 2008 by an admiring reader/ critic, Lucy Brock-Broido. James died by suicide in 1974.

There are 54 poems in all. Forty-one of them were first published in 1973 as James's only published book of verse, Letters to a Stranger. Ms Brock-Broido has collected 13 more from various small magazines. Most have a faint formalistic ring to them with rhymed triplets (a-x-a) predominating.   Preceding the poems is an introduction by Ms Brock-Broido, an introduction that can only be called unusually confessional. (In his characteristically succinct diction, series editor Mark Doty calls it "a love letter, a biography and exorcism all at once".) For subjects, the bulk of the poems have, as we call a type of educational conference in medicine, morbidity and mortality. Indeed, the book might perhaps have been more appropriately entitled "Intimations of morbidity and mortality". Many of the poems are graphic.

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Annotated by:
Bertman, Sandra

Primary Category: Performing Arts / Film, TV, Video

Genre: Video

Summary:

This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease.  It does just that.  Brilliantly.

Narrated by the actress Olivia de Havilland, the film opens with a 96 year old woman reading classical music as she's playing at the piano. Her music becomes gentle background sound track for the first vignette, a group of people intently viewing and commenting on Seurat's canvas, "Sunday in the Park."  From their intense concentration and voiced observations, one would never believe this was a group of nursing facility residents on an outing to the Chicago Art Museum.

Throughout the film--at the circus, visiting museums, or in painting workshops conducted at day care centers, nursing homes and assisted-living facilities in Europe and the US-- the hopeless, fatalistic, nobody's there stereotypes of Alzheimer's sufferers is unequivocally denied.  We continually witness people with serious memory problems being brought back into active communication and a rich quality of life.  This is more than busywork arts and crafts: trained professionals knowledgeable about both art and Alzheimer's are providing essential treatment "just as effective if not more so than the drugs."  The benefits of the non-pharmacological along with the pharmacological not only extend life, but create a life worthwhile, where people find meaning and connection.
 
In direct interview, voice-overs and interacting with "patients" and their family members, eminent experts from multiple medical fields - neurology, gerontology, psychiatry- punctuate the film reviewing the latest technologies and concurring that the essence of the person lives on. The latest brain research provides evidence that the parts of the brain related to emotions and creativity are largely spared by the disease and that our technologies for assessing dementia --dealing with sequencing things, dates in order, and what one did this morning--rely on short term memory which is totally irrelevant when enjoying a masterpiece or listening to a symphony.  The documentary also includes comments from art therapists, occupational therapists, directors of specialized care facilities, but the film is anything but talking heads.  The cutaways and extensive footage of the care giving staff and specialists interacting emotionally and physically, visibly bonding with the residents and family members is sincere, loving and inspiring professionalism.

The inspiration for the film and project is filmmaker Berna Huebner's mother, Hilda Gorenstein, once an accomplished painter known as Hilgos.  In one of Huebner's visits to the nursing home, she asks "Mom, would you like to paint again?"  Quite unexpected came the reply, "Yes, I remember better when I paint."  Learning this, the staff psychiatrist who had been prescribing small doses of a tranquilizer for her apathy, anxiety and agitation suggested Huebner enlist art students from the Chicago Museum school to help her mother to begin painting again.  We are not spared the slow and sometimes discouraging process as Mrs. Gorenstein comes alive regaining mobility and communication skills and interacting--bonding-- with the art students.  The film is replete with her colorful paintings created in the next few years until her death at age 93.

"The creative arts are a doorway.  Once that doorway is opened ... things are tapped ... that are genuine and active and alive that don't get tapped in our normal day social interactions when we sit at a table and make conversations over a meal or we read a newspaper article and then talk about the headlines of the day.... The creative arts bypass the [cognitive] limitations and simply go to the strengths. People still have imagination in tact all the way to the end of their disease."

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Annotated by:
Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Extraordinary Measures, based on events in the life of John Crowley and his family, dramatizes the father's quest to find a cure for Pompe disease, a relatively rare genetic condition that afflicts two of his three children.  The quest brings into play three powerful, often competing human motives:  a father's love for his children, a scientist's pursuit of knowledge and recognition, and a corporation's mandate for profits.  Crowley (Brendan Fraser), an energetic marketing executive, and his wife Aileen (Keri Russell) are told that their children Megan (Meredith Droeger), age eight, and Patrick (Diego Velazquez), age six, have reached the upper limits of their life expectancies.

When Megan, an affectionate, playful, and clear-sighted child, is rushed to the hospital with symptomatic heart and respiratory failure, a young physician empathically encourages the parents to think of their only daughter's immanent death as a "blessing" that will end her suffering.  However, Megan survives.  "So I guess you could say we dodged that blessing," Crowley echoes back to the doctor.  Seeing Megan's will to live reinforces John's wish to make her well, and he abruptly abandons his promising career to find a medical researcher who can reverse Pompe's effects. 

Immersing himself in medical journals and websites, John discovers the intriguing research of Robert Stonehill (Harrison Ford).  A cranky, renegade scientist who thinks to the beat of rock music blasting from a boom box, Stonehill has developed a cutting-edge theory about correcting the enzyme deficiency in the cells of people with Pompe, which gradually weakens skeletal, respiratory, and heart muscles.  However, to produce a treatment derived from his theory, he needs more funding.  John immediately creates a fund to support Pompe research, and he and Stonehill form a mutually exasperating partnership.  They lock horns with each other, venture capitalists, and finally a large genomic research corporation, Zymagen.

Despite the scientist's abrasive ways, Zymagen gives Stonehill a lab and creates employment for Crowley.  However, the two confront the company's culture of rigorous competition among its scientists and its focus on profit margins that ignore the fates of individual children.  When the Zymagen scientists develop a promising therapy, they decide to offer the treatment only to infants, who are most likely to experience benefits.  Disqualifying Crowley's children from the promising trials, this decision, combined with Crowley's obvious conflict of interest, creates the film's final obstacle.  Stonehill and the executives uncharacteristically collaborate to overcome it. 

This ending might seem implausibly neat, but it's consistent with the film's mostly evenhanded approach to the dilemmas of pursuing treatments for orphan diseases.  Toward the end, we witness even Crowley, albeit uncomfortably, reaching beyond his fatherly motives for the Pompe project and turning his argument for bringing the treatment to market from children to profits.  The longer the patients live, John assures the executives, the more treatments Zymagen will sell.  The film leaves space for viewers to ask to what extent Crowley's argument creates a fair compromise or opens an ethical quandary.  In a closing narration, the film moves beyond the fictionalized characters and plot to the real Crowley children and a tempered victory.  Yes, the Pompe treatment stopped the progression of the disease and improved Megan's and Patrick's hearts.  But it has not cured the Crowley children, and almost certainly it won't.   The treatments do, however, show more success when taken at the onset of symptoms.      

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Summary:

Sixty-year old Martha DeClerq cares for her mentally disabled sister, Pauline (Dora van der Groen), in a small town between Brussels and the seaside. Pauline cannot feed herself, tie her shoes, or speak in full sentences; she is stubborn, loving, occasionally mischievous, and particularly devoted to her sister, Paulette (Ann Petersen), who owns a small, tidy shop in town. Cecile (Rosemarie Bergmans), the youngest sister, lives in Brussels with a French intellectual, Albert, and has little contact with her siblings.

When Martha dies, her will stipulates that her estate be split equally between the three sisters, only if Paulette and Cecile care for Pauline themselves. They agree to share Pauline’s care. Although the sisters are fond of Pauline, their relationship with her is awkward and tentative. Initially, Paulette brings Pauline home, and they negotiate the new living arrangements with a mixture of embarrassment and kindness, frustration and delight. When the burden of caring for her sister becomes overwhelming, Pauline is deposited in Brussels at Cecile’s tiny, meticulously kept apartment. When these arrangements become unworkable, Pauline is eventually institutionalized.

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Mendel's Dwarf

Mawer, Simon

Last Updated: Jun-15-2010
Annotated by:
Clark, Stephanie Brown

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This novel interweaves facts about the history of genetics with compelling fictional characters and plots in two connected stories. The primary story traces the life and work of the fictional Benedict Lambert, brilliant 20th Century geneticist, and an achondroplastic dwarf; his research is to discover the gene mutation which has caused his condition. He is also the great-great-great nephew of Gregor Mendel.

The life and genetic work of Gregor Mendel comprise the second story. Intersecting with Gregor Mendel's 19th Century scientific experiments to artificially fertilize pea plants is Lambert's affair with married librarian Jean Piercey. When Jean becomes pregnant, she decides on termination after learning from Benedict that there is "a fifty-fifty change of ending up like me . . . a second Benedict, another squat and crumpled creature betrayed by mutation and the courtly dance of chromosomes . . . " (180).

By the novel's end, Mendel's work has been published, and dismissed; Benedict Lambert has discovered the location of the gene mutation which causes achondroplastic dwarfism, publishes the results in Nature, and is asked to make a presentation on "the New Eugenics". Jean regrets the abortion, and wants Benedict's child, but a ?normal" one. In an attempt to help Jean in her quest, Benedict uses his genetic knowledge, his laboratory privileges, and his sperm without the knowledge or consent of Jean's husband.

In the lab with eight of Jean's fertilized embryos Lambert must decide: "Four of the embryos are proto-Benedicts, proto-dwarf; the other four are, for want of a better word normal. How should he choose?" The results of this scientific and personal act of fertilization are unexpected and tragic.

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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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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 Sweet Hereafter

Banks, Russell

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

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This is a novel that begins with a fatal school bus accident in Sam Dent, a small town in upstate New York. The circumstances leading up to the accident appear in the first chapter, whose narrator is the bus driver Dolores Driscoll. The remaining chapters have three different narrators: Billy Ansel, who lost a son and daughter and now drinks himself into a less painful state; Mitchell Stephens, a lawyer from New York City who appears days after the accident, fueled by his belief that there is no such thing as an accident, himself the grieving father of a drug-addicted daughter; Nichole Burnell, a teenage survivor of the crash, now a parapalegic. Each presents a different view because of the unique history each brought to the tragedy.

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