Showing 31 - 40 of 515 annotations tagged with the keyword "Disability"

Summary:

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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Calcedonies

Nisker, Jeffrey

Last Updated: Apr-08-2014
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Plays

Genre: Play

Summary:

The play has two characters: Ruth and Friend (who is a male doctor).

Ruth is an engaging, straight-talking quadriplegic who can zip and dance with her chin-operated wheelchair and takes delight in terrorizing medical staff both physically and verbally. She wants to write poetry and is waiting for a device to make it possible for her to use a computer. She keeps developing bedsores that threaten her life and require long admissions to the hospital before they will heal. She desperately wants to live no matter what happens, as she feels that having no mind would be worse than having no body.

Friend is a male doctor with children who is ashamed of having examined her while she was unaware. Burdened with his guilt, he asks to be her “friend.” Ruth is skeptical and runs circles around him, but eventually comes to trust him and believe in his sincerity.

She makes him a witness to her advance directive to instigate all heroic measures, as she is afraid of the kindly "ethical" and cost-effective arguments not to treat the disabled. But Ruth dies horribly from sepsis, and Friend is helpless to prevent it. She never obtains the device that would have allowed her to put her poems into printed words.

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Summary:

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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Stitches

Small, David

Last Updated: Mar-03-2014
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

While the author's surgery for throat cancer when he was 14 years old, and its aftermath are the central events in this graphic memoir, Stitches is more essentially the story of a dysfunctional family. The memoir begins when David Small is six, growing up in Detroit, drawing, and observing the body language of his often silent parents and brother. Tension fills the house. David's mother's face is in an almost permanent scowl and the "mere moving of her fork a half inch to the right spelled dread at the dinner table" (16).  She slams pots and kitchen cabinet doors while David's radiologist father lets loose on a punching bag in the basement and his brother beats drums. David is in a constant struggle to avoid his mother's fury, which author/artist David depicts as a tidal wave. His father is remote, puffing silently on his pipe.
 
When David is 11 a female friend of the family, the wife of a surgeon, draws attention to a growth on David's neck, which his parents have either failed to notice or knowingly ignored. In due time the neck is x-rayed. The surgeon-friend diagnoses a sebaceous cyst and recommends an operation. With the mother's frequent protests about lack of money--in spite of an extended shopping spree the parents undertake-- it is three and a half more years before the surgery takes place. David undergoes the procedure with relative equanimity, the hospital and medical staff being familiar -- people he "thought of as my extended family, my protectors" (160). When he wakes up from the surgery, his father assures him that nothing is wrong but that he will need a second operation by a specialist. Uncharacteristically, his mother asks if there is anything she can get for him.

Waking up from the second surgery, David has no voice -- one vocal cord and his thyroid gland have been removed. "The fact that you now have no voice will define you from here on in" (186). Later, when changing his bandage by himself, he discovers a long, ugly array of stitches on the side of his neck. He has nightmares, and on one sleepless night as he wanders the house, discovers a letter written by one of his parents to "mama" which says, "of course the boy does not know it was cancer" (204). The accumulated silences and parental betrayal trigger David's delinquent behavior and  time in a boarding school, from which he runs away three times; ultimately he is expelled with a recommendation to get psychiatric help. Reluctantly, his mother drives him to a psychoanalyst -- "it's like throwing money down a hole, if you ask me" (247) -- but this intervention turns David's life around. The analyst, depicted by the author as a tall, fully clothed white rabbit, explains to David, "your mother doesn't love you" (255).  "It was such a relief to hear" said Small in an interview. Another truth is eventually revealed by David's father, who takes David out to dinner to tell him, after a lengthy silence, that the numerous x-ray treatments for sinus infections he had given the young David must have caused the throat cancer: "two-to-four hundred rads. I GAVE YOU CANCER" (286-287).

 

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Someone

McDermott, Alice

Last Updated: Feb-13-2014
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Marie Commeford, daughter of Irish Catholic immigrants who grows up in Brooklyn, narrates her life story in episodes rich with reflection on the losses, failed fantasies, illnesses, and disappointments of a life at the edge of poverty, which is also rich with love and poetry and humor and the stuff of which wisdom is made.  The story unfolds as memory unfolds, in flashbacks and reconstructions shaped by a present vantage point from which it all assumes a certain mantle of grace.   From the opening story in which a neighbor girl slips on the steps to a basement apartment and is killed, to repeated glimpses of a blind veteran who umpires the neighborhood boys' street games, to the bereaved families Marie meets when she works for the local undertaker, to her gradual discovery of her brother's closeted homosexuality, and to her aging mother's death, the story keeps reminding us of how much of life is coming to terms with the "ills that flesh is heir to," and also how resilience grows in the midst of loss.  Because much of the story represents the vantage point of a child only partially protected from hard things, it invites us to reflect on how children absorb large and hard truths and learn to cope with them. 

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Augustine

Soko; Winocour, Alice; Lindon, Vincent

Last Updated: Feb-07-2014
Annotated by:
Duffin, Jacalyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Augustine, a fifteen-year old maid in a wealthy home, collapses with a seizure while she is serving an elegant dinner. When she recovers, she is unable to open one eye. She is transported to Salpetriere hospital in Paris under the care of the famous J. M. Charcot, neurologist and psychiatrist who is fascinated by the condition of hysteria. He uses hypnosis to suggest cures to his patients and to trigger attacks which he demonstrates to his colleagues. Augustine is particularly susceptible to fits under hypnosis and obliges her doctor with lewd, convulsive performances virtually on command.

After one such episode the paralysis moves from her eye to her hand. She says that she wishes to be cured, but life in the asylum is not terrible: she has a warm room and food; she no longer needs to work in a kitchen or serve demanding masters.  The doctor is clearly taken with her as a scientific subject. “Augustine est une patient magnifique,” he assures a colleague. He is personally intrigued by her too.

Finally, one day she announces that she is cured. When Charcot tries to hypnotize her for another demonstration, she does not succumb; however, a look passes between them. Taking pity on her doctor, she stages a seizure that satisfies the audience. Immediately after, she and the doctor have a single passionate encounter against a clinic wall, and then she runs away.

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Far From The Tree

Solomon, Andrew

Last Updated: Dec-20-2013
Annotated by:
Henderson, Schuyler

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

The author of this long, compassionate and often startling treatise on identity interviewed over three hundred families to elicit stories about raising exceptional children, stories that also come from these exceptional children ('exceptional' is the term chosen to describe the children in the author's material about the book).

'Far From The Tree' explores the challenges children face in being raised in families where one prominent feature in their identity is forged by something out of their parents' control and generally not part of the family's experience until then. These identities are not 'vertical' (passed down from generations of parents to their children), but 'horizontal', springing up between those who share in that identity at any one time. Solomon begins by wondering about his own relationship with his parents when he was a child discovering his sexuality and ends with his own role as a father, 'the terrifying joy of unbearable responsibility' (702); between the two poles of his own experience, he meets parents and children who have experienced deafness, dwarfism, autism, schizophrenia, severe physical disabilities and diverse gender identities, prodigies, children who were concieved by rape and children who became criminal.  

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Epileptic

B., David

Last Updated: Nov-10-2013
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

First published in France as a six-volume series from 1996-2003, this narrative is often referred to as an autobiographical graphic novel, but it is more accurately described as a graphic memoir. The author, born Pierre-François Beauchard, tells and draws the story of his family's life with the author's older brother, Jean-Christophe, whom we meet on the first page, in the year 1994: "It takes a moment for me to recognize the guy who just walked in. It's my brother . . . The back of his head is bald, from all the times he's fallen. He's enormously bloated from medication and lack of exercise." Flashback to 1964 when the author is five years old and his seven-year-old brother begins to have frequent grand mal epilepsy seizures. There follows the parents' mostly fruitless search for treatment to control the seizures, including: possible brain surgery which Jean-Christophe refuses in favor of an attempt at zen macrobiotics (this seems to work for six-months), consultation with a psychic, Swedenborgian spiritualism, magnetism, alchemy, exorcism by a priest, psychiatry (a different form of exorcism!).

Jean-Christophe's illness transforms family life as other children mock and fear the boy, the family moves to an isolated area, joins communes, and attempts to cope with Jean-Christophe's increasingly disturbed and disturbing behavior that alternates between passivity and physical aggression. The author has vivid visions and dreams and changes his name to David ("a symbolic act. I've won the war [against the threat of acquiring epilepsy" (164)]; his sister Florence suffers from constant anxiety; his mother grieves for many months after her father dies. As an adolescent and young man Jean-Christophe spends time in several institutions for handicapped individuals as well as at home, where he lives a desultory existence that is interspersed with violence toward the author and his father.

David escapes to Paris, living in a studio apartment paid for by his father, reading, writing stories, drawing, and attending classes at the Duperre School of Applied Arts. "I had to draw and write constantly. I had to fill my time in order to prevent my brother's disease from reaching me" (276). He is lonely but avoids people, feels guilty for neglecting his brother and ‘picking on' him yet is fearful that he too will be taken over by epilepsy, or death. Equally upsetting is when David discovers writings by Jean-Christophe: "He speaks of his despair and loneliness and the words might as well have come from my pen" (316). On and off, in moving displays of empathy, the author attempts to understand what happens to his brother during the seizures -- is he conscious, where does he go, does he die temporarily?

Within the narrative are intercalated multigenerational family histories that include two world wars, and European philosophical and cultural movements that influenced his parents and their search for treatments. The final section of Epileptic relates in words and images the author's adult life as he becomes a commercial artist; struggles through several relationships with women; his own infertility; his ever-present confusion, anger, and misery about his brother's illness; and his founding with five colleagues of the independent publishing house, L'Association: "It's the creation of L'Association that saves me" (327).

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A Diary Without Dates

Bagnold, Enid

Last Updated: Oct-24-2013
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

"A Diary Without Dates" is Enid Bagnold's World War I memoir of her experiences over roughly a year and a half as a member of the V.A.D. (Voluntary Aid Detachment), or what we would today call a nurse's aide. Assisting the Sisters (both lay and religious nurses), the author attended to the day-to-day (mostly non-clinical) needs of wounded soldiers (almost entirely British) recovering from often horrific wounds in the Royal Herbert Hospital in Woolwich, 8 miles southeast of London. These poor men often stayed in the Royal Herbert for many months. It is a slim volume which the author wrote at the age of 28 and published in 1918. Divided into three arbitrary divisions ("Outside the Glass Doors", "Inside the Glass Doors", "'The Boys ...'") of roughly equal content (the last devotes, on the whole, more detail to individual "Tommies", referred to as "The Boys"), the book recounts the author's observations and fairly critical views of the relationships between nurses, physicians, V.A.D's, and visitors. Apparently the book was not well received by war authorities, leading to Bagnold's dismissal from her position.

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