Showing 1 - 10 of 33 annotations tagged with the keyword "Deafness"

Wild Boy

Dawson, Jill

Last Updated: Jun-15-2022
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel


Young doctor Jean-Marc Itard is serving in the Paris home for deaf-mute children. When a “wild boy” without speech is found near a village in Aveyron, France, Itard accepts the challenge of educating him. Many senior colleagues, including Philippe Pinel, opine that it will be impossible, even when Itard determines that the boy is not deaf. The lad, now named Victor, seems to be about ten years old, but his small size owing to malnutrition may be deceptive; he quickly reaches puberty. Helped by the care and empathy of the home’s housekeeper, Madame Guérin, and Julie, her daughter, Victor learns to perform several domestic tasks but manages to speak only a few words.

 His situation is a mystery. Caregivers marvel at how he had been able to survive alone in the woods for several years. They wonder if he ran away from an abusive home, or if he was deliberately abandoned because of his disability. A crisis emerges when a woman appears claiming to be his relative. Itard eventually abandons the effort to educate Victor, but he is allowed to continue living with the Guérins.

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Bodies of Truth gathers twenty-five essays about experiencing illnesses and disabilities from the perspectives of patients, healthcare professionals, and families. These personal stories join the growing company of narratives that reflect on the inner experience of illness or caring for the ill and on the social circumstances that influence those experiences. In addition to the diversity of perspectives, the editors have selected pieces about an exceptionally wide range of health conditions: multiple sclerosis, brain damage, deafness, drug addiction, Down syndrome, pain, cancer, infertility, depression, trauma, HIV, diabetes, food allergies, asthma. They also include essays on the death of a child and an attempted suicide.  

The essays resist easy categorization. In their Preface, the editors explain that they took “a more nuanced approach” to organizing the contributions loosely by themes so that they would “speak to each other as much as they speak to readers.” For example, Teresa Blankmeyer Burke’s spirited “Rendered Mute” calls out the OB-GYN who refused to remove his mask during delivery to allow this deaf mother-in-the-making to read his lips to exchange vital communications. Her essay is followed by Michael Bérubé’s “Jamie’s Place.” In it the father recounts the emotionally and logistically complicated path he and his son with Down syndrome navigate as they seek a place for him to live as independently as possible as an adult. This sequence invites readers to listen to two stories about disability from differing parental perspectives and circumstances. But perhaps readers can also to find commonalities in ways social attitudes toward disability fold themselves into the most intimate moments of the families’ lives.  

Several of the essays take readers into a professional caregiver’s medical and moral struggles. In “Confession” nurse Diane Kraynak writes sensitively about a newborn in intensive care who distressed her conscience. She was troubled by both the extensive medical interventions he was given “because we can” and their failure to save him. When Matthew S. Smith was an exhausted neurology resident, he ignored a stroke patient who inexplicably handed him a crumpled paper. Scribbled on it was a ragged, ungrammatical, and urgently expressive poem, which he read only years later, admonishing himself “to cherish the moments of practice” that could “change your life forever (“One Little Mind, Our Lie, Dr. Lie”). Madaline Harrison’s “Days of the Giants” recounts “the sometimes brutal initiation” of her early medical training decades ago. Narrating those struggles has led her to “compassion: for my patients, for myself as a young doctor, and for the students and residents coming behind me.” 

Overall, the essays range widely across medical encounters. After attending her husband’s death, Meredith Davies Hadaway (“Overtones”) became a Certified Music Practitioner who plays the harp to calm hospice patients. Dr. Taison Bell graciously thanks a pharmacist that he regards as a full partner in his treatment of patients (“A Tribute to the Pharmacist”). Tenley Lozano (“Submerged”), a Coast Guard veteran, was traumatized first by the various abuses of male supervisors, once nearly drowning, and then by her struggle to receive psychiatric care.  

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The River of Consciousness

Sacks, Oliver

Last Updated: Mar-01-2018

Primary Category: Literature / Nonfiction

Genre: Essay


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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Writing for all the co-authors, Rita Charon challenges “a reductionist, fragmented medicine that holds little regard for the singular aspects of a person’s life” and protests “social injustice of the global healthcare system” (p.1). She gives a history of narrative medicine, lists its principles, and summarizes the book’s chapters, mentioning that several come as pairs that present theory then practice. The six principles are “intersubjectivity, relationality, personhood and embodiment, action toward justice, close reading (or slow looking), and creativity” (p. 4).
The basic thesis is that healthcare can be improved by narrative medicine because “narrative competence can widen the clinical gaze to include personal and social elements of patients’ lives vital to the tasks of healing” (p. 1). 
This is a dense, theory-laden book from the group at Columbia University. The summaries below touch of some of the major points.   

Ch. 1, Account of Self: Exploring Relationality Through Literature

Maura Spiegel and Danielle Spencer describe the richness of literature that allows readers to respond creatively. In clinical settings, a caregiver may similarly listen attentively and help co-construct a narrative with the patient. Literature can help us explore “the limits of rationality and positivism” (p. 29) and move from “a model of autonomy to one of relationality” (p. 34). 

Ch. 2, This is What We Do, and These Things Happen:  Literature, Experience, Emotion, and Relationality in the Classroom.

Spiegal and Spencer write that current medical education does a poor job of helping future physicians with their emotions.  Clinicians profit from a more integrated self and will listen better to patients and respond to them.      

Ch. 3, Dualism and Its Discontents I:  Philosophy, Literature, and Medicine

Craig Irvine and Spencer start with three literary examples that illustrate separation of mind and body. This dualism has pervaded modern medicine, causing losses for patients and caregivers, especially when there are power imbalances between them.  The “clinical attitude” (p. 81) dehumanizes both caregivers and patients.           

Ch. 4, Dualism and Its Discontents II:  Philosophical Tinctures
Irvine and Spencer argue that both phenomenology (appreciative of embodied experience) and narrative hermeneutics (privileging reciprocal exchange of persons) help us move beyond dualism.  Theorists Edmund Pellegrino (also a physician), Richard Zaner, and Fredrik Svenaeus help us understand how caregivers and patients should relate. 

Ch. 5, Deliver Us from Certainty: Training for Narrative Ethics

Craig Irvine and Charon write that various humanistic disciplines “recognize the central role narrative plays in our lives” (p.111). There is, however, “indeterminacy” in stories that “cannot be reduced by analyzable data” (p. 113). Narrative ethics urges us to consider issues of power, access, and marginalization for both the teller and the listener. The authors review recent ethical traditions of principalism, common morality, casuistry, and virtue-based ethics. They believe that narrative ethics, emerging from clinical experience and now allied with feminist and structural justice frameworks, will provide a better approach for many reasons. “Narrative ethics is poised to integrate the literary narrative ethics and the clinical narrative ethics” (p. 125).  

Ch. 6, The Politics of the Pedagogy: Cripping, Queering and Un-homing Health Humanities

Sayantani DasGupta urges attention to issues of power and privilege in classrooms, lest they “replicate the selfsame hierarchical, oppressive power dynamics of traditional medicine” (p. 137). “Cripping” and “queering” provide new perspectives on knowledge, for example the untested binaries of physician/patient, sick/well, elite/marginalized, teacher/student. Drawing on disability studies, health humanities, and queer politics, DasGupta challenges “medicalization” and the “restitution narrative” (p. 141).  

Ch. 7, Close Reading: The Signature Method of Narrative Medicine

Charon stresses “the accounts of self that are told and heard in the contexts of healthcare” (p. 157). Close reading, traced from I. A. Richards through reader response theorists, is “a central method” for narrative medicine (p. 164). Close reading enhances attentive listening, and both of these deepen relationality and intersubjectivity, allowing for affiliation between caregiver and patient (pp. 175-76). Such linkages aid healthy bodies and minds, even the world itself (p. 176).             

Ch. 8, A Framework for Teaching Close Reading

Charon describes how she chooses texts and provides prompts for responsive creative writing. She illustrates “the cardinal narrative features—time, space, metaphor, and voice” (p. 182) in literary works by Lucille Clifton, Henry James, Galway Kinnell, and Manual Puig.  

PART V, CREATIVITY            
Ch. 9,  Creativity: What, Why, and Where?

Nellie Hermann writes that “healthcare in particular has a vexed relationship to the notion of creativity,” in part because of issues of control (pp. 211-12); values of “evidence based” and “numbers-driven” medicine are also factors. Narrative medicine, however, “is about reawakening the creativity that lives in all of us” (p. 214).            

Ch. 10, Can Creativity Be Taught?

Hermann reports on techniques used in the College of Physicians and Surgeons at Columbia, including prompts and a Portfolio program. A “Reading Guide” helps clinical faculty (and others) respond to student writing. Responses to writing can nourish the “creative spark.”  

Ch. 11, From Fire Escapes to Qualitative Data: Pedagogical Urging, Embodied Research, and Narrative Medicine’s Ear of the Heart

Edgar Rivera Colón suggests that “we are all lay social scientists of one kind or another,” seeing people in action in various contexts. He affirms an “assets-based approach to public health challenges, as opposed to a deficits-based and pathology-replicating paradigm” (p. 259). We are all embodied actors in relationship to power, privilege, and social penalty. Research through interviews and participant observation show “meaning worlds” in tension with “systemic inequality and structural violence” (p. 263). 

Ch. 12, A Narrative Transformation of Health and Healthcare

Charon presents and analyzes a case study of patient Ms. N. as treated by internist Charon. They’ve been working together for decades. Charon writes up her perceptions and shares them with Ms. N. Speaking together, they “became mirrors for one another” (p. 274). Psychiatrist Marcus discusses transference and transitional space in that experience. A caregiver as witness can shift healthcare from “instrumental custodianship to intersubjective contact” (p. 288).            

Ch. 13, Clinical Contributions of Narrative Medicine

Charon describes applications of narrative medicine, all with the aim of improving healthcare. She describes techniques for interviews of patients, writing methods, and ways to improve the effectiveness of healthcare teams, as well as changes in clinical charts and other narrative descriptions of patients.

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Itani, Frances

Last Updated: Sep-22-2016
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel


Kenan Oak returns from World War I to a small Ontario town. He is virtually unable to speak and dares not venture from his home. Adopted by a reclusive uncle at an early age, he has no immediate family but his wife, Tressa, who loves him and accepts his disability with good grace. They have been trying to have a child without success, and the glimmers of Kenan’s recovery are dauntingly few and faint. Slowly with the help of his uncle Am, he begins to go out at night for walks in the woods and skating on the ice of the lake.  

Am and his wife Maggie have a strained marriage. She loves to sing and once aspired to a career in music, but instead she opted for Am and a farm—although now they live in town. Lukas, a gifted new musician arrives to direct the choir; he is a postwar immigrant from an unnamed European country, possibly Germany. He notices her talent and encourages her to sing solo at the upcoming New Year’s concert. Unused to the attention, she is captivated by him, his mystique, his appreciation of her, and the return of joy through song. They have an affair, which is discovered by Am.  

Well into the story, it emerges that Am and Maggie had lost two children to diphtheria, and this trauma is at the heart of their marital strife. It is why they left their farm and have grown apart.  But Maggie imposed an edict of silence on this exquisitely painful past. In contrast, Tressa slowly encourages her silent husband to tell—by inventing stories for him and letting him revise.  His adoptive uncle gives him a postage-stamp sized photograph of his nameless mother and grandmother; together they construct a story.

Maggie falls pregnant with Lukas’s baby. She goes away to have the child but Am cannot accept it. Compounding Maggie’s woe, she stays with Am—for all their strife, they are bound in their loss. She allows Tressa and Kenan to adopt her beloved baby.  

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Itani, Frances

Last Updated: Jul-24-2016
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel


Born in 1894, Grania becomes deaf following scarlet fever at the age of two. Her mother never quite recovers from misplaced guilt over this outcome and is withdrawn. But Grania is well loved by the whole family, who run a hotel in a small town. Her older sister and their Irish-born grandmother see the child's intelligence and find ways to communicate with her by signs and words; they urge the parents to send her to a special school.By age nine, Grania is sent to the famous School for the Deaf in Belleville Ontario, founded by Alexander Graham Bell. Although the school is only a short distance from her home on the north shore of Lake Ontario, the child is not allowed to return for nine long months. At first she is overwhelmed with homesickness, but soon she finds kindred spirits among the other students and teachers and adapts to the life of the institution.

By 1915, her studies complete, Grania works at the school. There, she meets her future husband, Jim, a hearing man who is assistant to the town doctor. They marry, but only two weeks later, Jim leaves to serve as a stretcher bearer in the war in Europe. Fear and death haunt the people at home and abroad for years. Jim writes what little he is allowed of the horror and danger around him, always promising to return. Grania waits and writes too, slowly growing hopeless and angry, as devastating telegrams arrive one after the other.Her sister copes with the return of a grievously disfigured husband, wounded more in mind than in body. In late 1918, Grania falls ill in the influenza epidemic and is delirious for weeks. When she recovers, frail and bald, she learns of the loss of her beloved grandmother who died of the fever caught by nursing her. At the same moment she hears of the war's end and begins to believe again in hope.

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El Deafo

Bell, Cece

Last Updated: Nov-30-2015
Annotated by:
Lam, MD, Gretl

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir


El Deafo is a graphic novel and memoir describing the author’s childhood experiences after she loses her hearing from meningitis at age 4. During her first year in school, she attends a special class with other students who also wear hearing aids. They have fun and learn how to lip read together. However, Cece’s family moves to a new neighborhood the following year, and she is forced to attend regular classes at a new school. In order to understand her teachers, she gets a powerful new hearing aid known as the Phonic Ear, which is a large device she must wear strapped to her chest. The Ear makes her feel more self conscious than ever. She struggles to fit in and make friends at school, and often feels very lonely. However, she discovers that the Phonic Ear also gives her a “superpower” – she can hear what her teacher is saying and doing around the school, even when they are not in the same room together! To cheer herself up, she pretends she is a superhero named El Deafo with super-hearing. Even better, her newly realized powers soon make her the popular kid at school because she can warn everyone to quit goofing off when the teacher is coming.

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On the Move: A Life

Sacks, Oliver

Last Updated: Jun-22-2015

Primary Category: Literature / Nonfiction

Genre: Autobiography


On the Move:  A Life describes the extraordinary life of Oliver Sacks from his childhood during World War II to shortly before its 2015 publication.  Using his journals (“nearly a thousand,” he writes), correspondence, and memories—as well as his 14 or so books—Sacks has given himself free rein to describe and analyze his long, productive, and unusual life.

A dozen chapter headings nominally corral his wide variety of interests, adventures, and travels, including his medical career, his homosexuality, and diverse writing projects.

Sacks came from an English medical family, including some observant Jews, but not him. As a youth he loved (prophetically) writing and chemistry. He rode motorcycles then and for many years to come. He did poorly on his Oxford practical anatomy exam but immediately (and drunk on hard cider) sat for a competitive essay on anatomy and won a large prize.  Later, he was warned away from bench science and focused successfully on patient care, patient narratives, and personal essays of many sorts, including A Leg To Stand On, the account of his injured leg and recovery.

Sacks left England for Canada, then the US.  He quotes from some of the journals about his travels. In LA, he worked out at Muscle Beach (setting a California squat record) and did drugs, including amphetamines. A shy man, he thought of himself as Doppelganger: Dr. Sacks by day, a black-garbed biker by night. 

Fascinated by vision and photography, Sacks includes 58 photos from the ’50s to 2006; some black and white, some in color.  These are printed together on slick paper and well illustrate his text.   

Neurology training concluded, Sacks served various institutions in New York but read widely, ever eager to find theories of brain chemistry, anatomy, perception, behavior, and more. As readers of his books know, he enjoyed using his own interests in drugs, music, and travel, as well as personal medical experiences such as his injured leg and his lack of facial recognition. He describes his meetings with patients with unusual dilemmas: the postencephalics of Awakenings, as well as people with Tourette’s syndrome, deafness, colorblindness, autism, or migraines. He became fascinated—obsessed, one might say—with these and wrote so voluminously that cuts had to be made from his huge manuscripts to yield books.

Sacks describes interaction with editors, film crews, playwrights and others wishing to collaborate. His audiences grew as he became an intermediary to the non-medical public. We read about Peter Brook, W. H. Auden, Jonathan Miller, Bob Silvers (New York Review of Books), the cartoonist Al Capp (a cousin), Abba Eban (another cousin), Stephen Jay Gould, Temple Grandin, Francis Crick, and others. One striking passage describes taking Robert DeNiro and Robin Williams to see locked-in patients in preparation for the film version of Awakenings.

In his 70s, his robust health faded. He had a melanoma in his right eye, with more than three years of treatment before it became blind. Being Sacks, he observed interesting phenomena as his vision changed, “a fertile ground of enquiry” (p. 376). His left knee was replaced. He had sciatica.   

He fell in love again after 35 years of celibacy; he dedicates his book to his partner Billy Hayes.

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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


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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This is an anthology of poetry by poets who have disabilities. The book's sections are ordered more or less chronologically, although the editors have identified other groupings as well: "The Disability Poetics Movement," "Lyricism of the Body," and "Towards a New Language of Embodiment." Also included is a well organized preface by editor Jennifer Bartlett and an informative "Short History of American Disability Poetry" by editor Michael Northen. An essay by or about each poet prefaces that poet's work. The book makes no pretense at being comprehensive but offers a large selection of poets with a variety of physical impairments (e.g. cerebral palsy, rheumatoid arthritis, dystonia, blindness, deafness, Parkinson's disease, multiple sclerosis, stroke). It presents important figures who have contributed to current thinking about the disabled body and social and physical constraints imposed on it, as well as poets who do not/did not identify themselves as disabled in their work.

The first section, "Early Voices" presents poets no longer alive who wrote in the mid to late 20th century and rarely forefronted their disability (Larry Eigner, Vassar Miller, Robert Fagan, Josephine Miles-- and  Tom Andrews, who DID write about his hemophilia). Their work took place mostly during a time when disability was stigmatized and kept hidden. Michael Davidson's essay on Larry Eigner's work is particularly informative, showing how the poet's severe cerebral palsy, which kept him housebound, pervaded his work although he made no overt reference to his condition.

"The Disability Poetics Movement" highlights poets ("crip poets") who openly celebrate their unusual bodies. These are poets who emerged shortly after passage of the Americans With Disabilities Act in 1992. Some, such as Jim FerrisKenny Fries, Petra Kuppers became disability rights advocates and educators in the field of disability studies. Editor Michael Northen speculates that Fries "may be the single most powerful representative of this group" because he rejects both the medical and social models of disability and is "asking instead for a redefinition of beauty and of the way that disability is perceived" (20-21). Other poets in this section are Daniel Simpson, Laura Hershey, Jillian Weise, Kathi Wolfe, and John Lee Clark.

Ten poets contribute to the section, "Lyricism of the Body," most of them unknown to me (Alex Lemon, Laurie Clements Lambeth, Brian Teare, Ona Gritz, Stephen Kuusisto, Sheila Black, Raymond Luczak, Anne Kaier, Hal Sirowitz, Lisa Gill). Their prefatory essays are particularly helpful in providing context for their work. The final section, "Towards a New Language of Embodiment," is more experimental than the rest of the collection. "Rather than explaining an individual story, bodily condition is manifested through the form" (17). Poets are Norma Cole, C. S. Giscombe, Amber DiPietra, Ellen McGrath Smith, Denise Leto, Jennifer Bartlett, Cynthia Hogue, Danielle Pafunda, Rusty Morrison, David Wolach, Kars Dorris, Gretchen E. Henderson, Bernadette Mayer.

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