Showing 1 - 10 of 525 annotations tagged with the keyword "Disability"

Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Esmé Weijun Wang is a novelist who has been diagnosed with Schizoaffective Disorder.  The Collected Schizophrenias is a book of personal essays that was the 2016 winner of the Graywolf Press Nonfiction Prize. 

A precocious young person on a track to success, Wang experiences a manic episode at Yale that leads to her first hospitalization.  After a second hospitalization, her college washes its hands of her.  Hitting roadblocks time and time again requires her to rebuild her life over and over.  This is not a conventional chronological autobiography but rather essays that provide different approaches to the author’s experience of mental illness.  The plural “schizophrenias” of the title encompasses the whole schizophrenic spectrum of disorders.  As Wang explains, her own diagnosis is “the fucked-up offspring of manic depression and schizophrenia” (p. 10).  

In an essay entitled “High-Functioning” we learn how the author, having been a fashion editor, knows how to pass for normal: “My makeup routine is minimal and consistent.  I can dress and daub when psychotic and when not psychotic.  I do it with zeal when manic.  If I’m depressed, I skip everything but the lipstick.  If I skip the lipstick, that means I haven’t even made it to the bathroom mirror” (p.44).  

Later, in “The Choice of Children,” volunteering at a camp for bipolar children makes Wang think about what it would be like to inflict her diagnosis on her own offspring.  In “Reality, On-Screen” she attempts to convey the sensation of decompensating to psychosis.  And in “Yale Will Not Save You” she considers the failure of universities to accommodate mentally ill students. 

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Annotated by:
Kohn, Martin

Primary Category: Literature / Plays

Genre: Play

Summary:

First published in 1898, Chekhov’s “A Doctor’s Visit”  has been ably adapted as a short play by physician-playwright, Guy Fredrick Glass. In addition to the original characters, in his adaptation Glass has added a new character, a medical student, Boris, as a foil and interlocutor for the work’s main character, Dr. Korolyov. Staging directions and scene setting also add dramatic dimensions to the story, as do elaborations of conversations including  comedic encounters with the governess, Christina Dmitryevna, and a display of "compassionate solidarity" (see Coulehan annotation ) with the doctor’s patient, Liza. The primary theme of the story stays true in this adaptation—Korolyov’s impressions of the patient viewed from a cold objective stance are changed as he develops personal insights into the social and political nature of her (and his) malaise.

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A Mind Unraveled: A Memoir

Eichenwald, Kurt

Last Updated: Jan-02-2019
Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kurt Eichenwald shares his experiences living with epilepsy in an electrifying narrative. Beginning with staring spells as a child and then later on generalized convulsions with loss of consciousness, he experiences as many as 4 seizures a week between the ages of 18 to 30. After that, the seizures become milder and less frequent. Coincidentally, his wife, father, and older brother are physicians and his mother a nurse.

Eichenwald describes his encounters with multiple neurologists, the best of them being Dr. Naarden. Unfortunately, other health professionals are portrayed as incompetent, careless, lacking empathy, or even unscrupulous. Multiple mishaps with prescribed anticonvulsant medications are chronicled – drug side effects, toxic levels of medicines, and a bout of bone marrow suppression. He suffers broken ribs, cuts and wounds, burns, and is even blanketed by deep snow due to seizures.

Eichenwald acknowledges the toll that epilepsy exacts on roommates, friends, and family. He admits to lots of fear and guilt. At one point, he seriously considers suicide by overdosing. Everyday life is hardly ever ordinary: “Now I was scared every day, checking where I stood for dangers, wondering when consciousness would disappear” (p157). A large section of his account details the discrimination he encounters at Swarthmore College in Pennsylvania in the early 1980’s. The school dismisses him because of his uncontrolled epilepsy. He successfully fights their decision and returns to graduate. Obtaining and holding a job is complicated by his illness, but Eichenwald becomes a journalist who works for the New York Times.




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Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Andrew Solomon’s 2012 book Far From the Tree is a study of families with children who are different in all sorts of ways from their parents and siblings to degrees that altered and even threatened family functions and relationships. Years after its publication, director Rachel Dretzin collaborated with Solomon to produce this documentary based on his book. At the time of filming, the children were already adults or were well into their teens. The film looks at how the families came to accept these children and how they sought—with varying success—happiness.  

The documentary focuses on five family scenarios: homosexuality (Solomon’s own story); Down syndrome; dwarfism; murder; and autism. Anyone in these families or anyone who knew these families would never invoke the familiar idiom “the apple doesn’t fall far from the tree” when talking about these children. These apples fell far from the tree, and Solomon builds on that twist to the idiom to characterize the relationship between the affected children and their families as “horizontal.” By extension, Solomon characterizes the relationship of children who are not different from their parents and siblings in any appreciable manner as “vertical.” 

Only one of the original characters from the book appears in the documentary; the other families are newly “cast.” The film captures the lives of these families with all their challenges and successes, and intercuts footage from home videos the families provided. Dretzin also filmed interviews with parents and in some cases their children. The footage and interviews show how families evolved in their acceptance of their children and their situations as best they could. The best was still heartbreak for some, but real happiness was achieved for others. 

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction — Secondary Category: Visual Arts /

Genre: Memoir

Summary:

Devan Stahl’s opening essay in this unusual book explores the tension between her lived experience of being diagnosed with multiple sclerosis (MS) in her twenties and her physicians’ biomedical descriptions of it. While that tension is a familiar theme in patients’ narratives, Stahl’s approach is fresh and generously collaborative. Stahl, a bioethicist, focuses her brief narrative on her uneasy hours inside MRI machines and with clinicians who read the images. Stahl encouraged her sister, artist Darian Goldin Stahl, to transmute her physicians’ diagnostic tools into printmaker’s works, which bring personal meaning and sisterly solidarity to Devan’s experience. Devan then invited Darian and four humanities scholars to write reflective commentaries on her narrative, Darian’s images, and the commentaries themselves. The result is a richly layered, multi-vocal reflection on what Devan Stahl has accepted as “the dark gift of bodily frailty” (xxvii).

Darian Stahl’s prints were inspired by the drawings of Renaissance anatomist Andreas Vesalius that the sisters admired. Unlike their modern counterparts, the older images placed bodies in humanly built and natural environments that are rich with metaphor and theological implications. Darian’s photographic silkscreened and stone lithographic prints, some of which accompany her essay, imaginatively relocate her sister’s MRI scans in domestic spaces that suggest both Devan’s present state: her spine captured in a glass kitchen jar. And her future: a ghostly figure (actually Darian’s) at the base of the staircase that Devan will someday have trouble climbing. Making art became an act of caregiving.

The scholarly essays affirm that a single diagnosis can set in motion processes of interpretation in the context of family, community, academic discipline, and culture. But in this context, they too are expressions of caring for Devan. Literary and health humanities scholar Therese Jones writes that Stahl’s narrative “testifies to [her] hope of transcending or at least managing the alienation and incoherence of a disrupted life” (49). Literature professor Kirsten Ostherr links the Stahls’ collaborative projects with the patient empowerment movement, where creative expression offers one way to resist “the technomediated patient narrative” (71). Two of Devan Stahl’s theological studies professors contribute the remaining essays. Ellen T. Armour believes that the Stahls’ projects suggest the value of engaging the medical humanities in pastoral practice and vice versa, especially to challenge biomedicine’s claims to mastery and its “disavowal of vulnerability” (89). Jeffrey P. Bishop, who is also a physician, understands a patient’s position within the asymmetric power of medicine. Yet he also resists “the power ontology that animates so much of the West” (102). He offers instead a vision of accepting “the dark gift” of the fragility of the body, which can be both humbling and liberating (105). Viewing one of Darian’s images, he writes, “calls me out of myself” (105).

In Devan Stahl’s final reflection on her colleagues’ commentaries and her sister’s art, she concludes that sharing her experience has revealed both a “power in submission” and her responsibility to other patients (112). Her discovery leads her to a “new image” of herself and acceptance of Bishop’s observation: “Flesh calls the self into question” (115, 103).

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Summary:

In this remarkable anthology, 51 women and men describe their nursing school experiences, from initial fears and anxieties to increasing confidence and appreciation of the profession.  Jeanne Bryner, in her Introduction, explains how she and Cortney Davis deliberately sought a diverse group of nurse-writers, from recent nursing graduates in their twenties to seasoned veterans in their nineties.  Their collection includes different races, nationalities, social and economic classes, and education levels.  What the contributors have in common besides being nurses is that they are gifted writers able to capture in poetry or prose the transforming moments of their lives. Nursing students reading this anthology will recognize many kindred souls, struggling with the same uncertainties and apprehensions, wondering how they will ever accomplish all this, but also gaining command of the profession, relishing its special rewards, valuing patients as their ultimate teachers. All readers will understand what is so special about nursing .




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Every Note Played

Genova, Lisa

Last Updated: Apr-10-2018

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This is a dramatic and moving story about a concert pianist who, at 45 years of age, suddenly and inexplicably, has ALS, and also equally about his ex-wife Karina, who takes on his care throughout his slow, inevitable, and lethal decline. As many readers know, ALS (Amyotrophic Lateral Sclerosis). or “Lou Gherig’s disease,” hardens the motor nerves so that, progressively, there is no more control of muscles throughout the body. Not many readers know, however, the difficult path such patients and their families must pursue. This sensitive and detailed novel takes readers powerfully into the world of ALS, a disease for which there is today no cure.                                                                                      

Obsessed with his musical career and international travel, Richard has paid little attention to Karina and their daughter, Grace, and he has had affairs with other women. Karina has deceived him about her inability to bear more children. Because of their move from New York City to Boston, Karina, also a gifted pianist, has lost a possible career in jazz and now gives piano lessons to unpromising students. 

The first several chapters alternate between Richard and Karina. Although divorced from him, she brings him, now an ALS patient, back into the home they once shared. Various nurses, doctors, and other specialists try to explain the difficult future that includes certain loss of body functions, but Richard and Karina are slow to comprehend these. Despite their denial, they are forced to come to terms with Richard’s progressive decline and, finally, death.     
          
Richard loses the ability to use his hands, then his arms. He needs a special machine to breathe at night. Soon he has paid caregivers for parts of the day; these include a cheery and admirable man named Bill. No longer able to eat, Richard has a feeding tube. Later he needs a hospital bed. Also a Head Mouse to work his computer. Also an elaborate wheelchair. With unresolved issues in the past, Richard and Karina are emotionally apart—even with feelings of hate and rage—even while she cares for him.  

Karina’s walking partner Elise, a teacher, helps her stay sane. Karina travels to New Orleans with Elise and her class and finds her interest in jazz reawakened. No longer able to breathe even with assistance, should Richard go on to mechanical ventilation that will require 24-hour care at enormous expense? A choice is made. Richard dies, with various resolutions before and after his death.  

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The River of Consciousness

Sacks, Oliver

Last Updated: Mar-01-2018

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Two weeks before his death in 2015, Sacks oversaw this collection of essays and charged Kate Edgar, Daniel Frank, and Bill Hayes to arrange its publication. The essays touch on various fields—evolution, botany, chemistry, medicine, neuroscience, and the arts, and focus on major figures such as Darwin, Freud, and William James. The major theme—as indicated by the volume’s title—is how minds (of humans, chimps, even jellyfish) interpret and remember what the senses perceive in normal and in limited states. While we read in the Foreword that “a number” of the pieces originally appeared in The New York Review of Books, there are no citations for dates and places.  

“Darwin and the Meaning of Flowers”: Sacks describes Darwin’s research with flowers that support evolution; flowing plants display qualities of sensitivity to “contact, pressure moisture, chemical gradients, etc” (p. 19). Sacks recalls the pleasures of investigating flowers as a youth in his London garden.  

“Speed” : Drawing on personal experience and a wide variety of anecdotes (including his encephalitic patients described in Awakenings), Sacks muses about mental perceptions, slow and fast, normal and drug-enhanced, dreams, and our ability to imagine “all speeds, all time” (p. 59).  

“Sentience: The Mental Lives of Plants and Worms”: Starting with Darwin and coming forward, Sacks discuss how worms, jellyfish, and even trees may be considered to exhibit “mind.” Near the end, we read, “if one allows that a dog may have consciousness of a significant and individual sort, one has to allow it for an octopus too” (p. 76).  
   
“The Other Road: Freud as Neurologist”: The opening paragraph ably sums up the essay. “Everyone knows Freud as the father of psychoanalysis, but relatively few know about the twenty years (from 1876 to 1896) when he was primarily a neurologist and anatomist; Freud himself rarely referred to them in later life. Yet his neurological life was the precursor to his psychoanalytic one, and perhaps an essential key to it (p. 79).   
   
The next three may be considered as a group because they deal with lapses or outright failures in perception, memory, or health. Because Sacks reports on his own life experience, these are the most personal.
“The Fallibility of Memory” describes Sacks’s memories of the bombing of London in the winter of 1940-41. It turns out that one memory, according to family members, is right, but the other is actually a version of a letter describing a bombing.

The essay continues to discuss such topics as false memories, auto-plagiarism, unconscious plagiarism, and fabulation. He concludes, “Our only truth is narrative truth, the stories we tell each other and ourselves—the stories we continually recategorize and refine” (p. 121). In a short piece, “Mishearings,” Sacks reports how his increasing deafness makes new (and sometimes hilarious) perceptions of spoken words.  

Surely the last written—and in many ways the most poignant—“A General Feeling of Disorder” discusses feelings of being ill. Sacks, at age 81, describes his metastatic liver cancer and, in detail, an arduous treatment. Although warned of weakness and pain, he writes of “a sort of negative orgasm of pain” and other disturbing side effects (pp. 155-59) in vivid detail.  

“The Creative Self” discusses forms of creativity including play, scholarship, unconscious borrowing, and subconscious insight. Sacks is less interested in a Freudian model than an evocation of “an entire hidden, creative self” (p. 144).            

The final two, “The River of Consciousness” and “Scotoma: Forgetting and Neglect in Science” deal with theories of how the mind works and, more collectively, how scientific breakthroughs occur. The former essay explores cinematic models for perception in James and Bergson and much later models of the 100 billion neurons of the brain working on networks, coalitions, or populations. He finds that a specific mechanism is unlikely to be found and, “Even the highest powers of art—whether in film or theater, or literary narrative—can only convey the faintest intimation of what human consciousness is really like” (p. 174).

In “Scotoma” (or “memory hole”), he looks at discoveries that were over-looked for many years . Later they were rediscovered as important for understanding various phenomena: Tourette’s syndrome, phantom limbs, and, his specialty, migraines.

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Spy of the First Person

Shepard, Sam

Last Updated: Jan-30-2018
Annotated by:
Glass, Guy

Primary Category: Literature / Fiction

Genre: Memoir

Summary:

Spy of the First Person is a short semi-autobiographical narrative about a man with a debilitating condition.  He spends most of his time sitting in a wheelchair on his porch, goes for tests to the Arizona campus of the Mayo Clinic, and has a “handicapped sign hanging from the rearview mirror of his car” (p. 15). The man’s illness is unnamed, but we learn that his motor skills are grossly impaired: “His hands and arms don’t work much.  He uses his legs, his knees, his thighs, to bring his arms and hands to his face in order to be able to eat his cheese and crackers” (ibid).   

The story is told from various, shifting points of view.  At times we are in the head of the protagonist.  At other times, the perspective is that of a nosy neighbor who peers at the sick man through binoculars, hence the book’s title. There is a parallel narrative about an elderly couple and the wife’s gradual decline in health.  The Southwest plays such an important role here one might even say that it too is a character. 
 

There are also frequent shifts of tense.  It is not always clear whether we are in the past or present.  We alternate between the central character’s fantasies, memories, and observations. The effect of intertwining voices and tenses is reinforced by the brevity of the chapters, many no longer than a paragraph.  The overall impression is that while he may no longer have full control over his body, the man has retained an active (one might say overactive) mind.
 

Spy of the First Person
concludes as the man’s children take him to a Mexican restaurant.  The vivid description of a meal shared with his loved ones provides a sharp contrast to the inner thoughts that provide the bulk of this book.

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Calcedonies

Nisker, Jeffrey

Last Updated: Jan-17-2018
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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