Showing 1 - 10 of 3153 annotations

Annotated by:
Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video — Secondary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The opening of the documentary Fixed: The Science/Fiction of Human Enhancement is meant to startle. A young woman (disabled performance artist Sue Austin) in a motorized wheelchair fitted with transparent plastic fins gracefully glides underwater around seascapes of coral and populations of tropical fish. The scene dislodges expectations about what wheelchairs can do and where they belong. It creates what for many are unlikely associations among disability, wonder, joy, freedom, and beauty. Watching Austin incites questions about what this languid and dreamy scene might have to do with human enhancement, which more predictably brings to mind dazzling mechanical, chemical, or genetic interventions that surpass the ordinariness of a wheelchair and extend human capacities. But this gentle scene opens the way for the film’s conversations about the ethics and meanings of human enhancement that emphasize perspectives by people with disabilities.  

Regan Brashear’s film features interviews with and footage of people living with disabilities as they move in varied ways through their environments—home, workplace, airport, therapy lab, city street. Photographs, news footage, and performances by mixed-ability dance companies complement their stories. We also hear from a transhumanist, academicians, and activists. Together they express a wider range of views about human enhancement than seems possible in an hour-long film.  

Often contrastive views are paired or clustered. For instance, double amputee Hugh Herr, Director of MIT’s Biomechtronics Group, brags that his carbon-fiber and other prosthetic legs will outperform the biological legs of aging peers. His lab develops robotic limbs controlled by biofeedback, and he intends to end disability through mechanical technologies. Gregor Wolbring, a biochemist and bioethics scholar who was born without legs, regards himself as a version of normal and rejects being fixed. “I’m happy the way I am!” he exuberantly proclaims. Rather than strive for normalcy through restorative technology, Wolbring urges acceptance of imperfection.  

Altogether, the interviewees raise questions about how to respond to differences among human bodies: focus on corrections toward achieving a concept of “normal”? accept diversity? extend human potential? The interviews call out underlying assumptions about disability that influence our answers. Do we assume that disability is an aberration that should be erased? A condition located in individual bodies? A condition brought about by unaccommodating social and built environments? Or, as disabled journalist John Hockenberry proposes, “a part of the human story”?

Fixed
also asks what the social and ethical consequences of pursuing enhancements might be. Do they equalize opportunity? Do they misplace priorities by channeling attention and resources away from basic health care and ordinary, essential technologies, such as reliable, affordable wheelchairs? Are biological, chemical, and mechanical enhancements indispensible opportunities to extend human experience, as transhumanist James Hughes claims? Do we have an ethical responsibility to enhance, whether to correct or extend?
                                                                                              
Hockenberry mentions that we already enhance. Think of eyeglasses, telescopes, hearing aids. People with disabilities, he points out, are typically the first adopters of technologies, such as computer-brain interfaces, that are destined for wider use. Archival film footage of warfare during this discussion reminds us what many of those uses have been. Should we worry, he asks, about using people with disabilities as research subjects? Or should we say with recently paralyzed Fernanda Castelo, who tests an exoskeleton that braces her body as it moves her forward: “Why not”?  

Considering whether we should trust technology to create equality or treat each other equally in the presence of our differences, disability rights attorney Silvia Yee poses the film’s most vital question: “Which is the world you want to live in?” While Fixed gives a fair hearing to disparate answers, the closing image is suggestive. A woman in a motorized wheelchair offers a lift to someone struggling to push a manual chair uphill. She invites him to grasp the back of hers and they roll forward together.

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How to Visit a Healer

Brown, Jeanette

Last Updated: Sep-08-2017
Annotated by:
Davis, Cortney

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

In this wonderful short story, author Jeanette Brown describes a woman’s first visit to an alternative medicine healer. The woman has a persistent cough. Unhappy with the "five seconds per visit your doctor lavishes on you after your two-hour wait in his sterile lobby," she has taken her yoga instructor’s advice and made an appointment with a tall, olive-skinned man whose voice is "low and soothing" and whose manner is slow, relaxed, and personal.The woman, whom the healer diagnoses as "the roadrunner, a busy fidgety type," alternates between interest, skepticism and dismay. She cracks jokes; he doesn’t laugh. He recommends diet, exercise, no caffeine, and colon cleansing. She mentally rolls her eyes until, his hands massaging her foot, she feels her stomach lurch, a twinge in her armpit and begins to think of her body as "a human pinball machine." Whenever her self-defensive, rational, traditional beliefs almost propel her off the exam table and into her clothes, the healer "nails" her, reading her personality and her lifestyle exactly.Well into the visit, she realizes she hasn’t coughed once. Then, when she’s the most relaxed, incense wafting, his hands kneading all tensions from her back, her mind registering "this is bliss," her esophagus becomes blocked. Sitting up, she coughs, and the healer confronts her. "You have something to say," he insists, and she counters with "You expect me to believe all this mumbo-jumbo?" He tells her she swallows her feelings, and when she coughs again a "feather? A butterfly?" escapes from her mouth and disappears.When the healer pats her back and asks her to cough once more, she can’t. Taking her hands, he declares her "cured." At the story’s end, still not quite able to admit that this strange physician has helped her, yet knowing that he has, the woman struggles to count out his fifty dollar fee, finally dropping a handful of bills onto his bench, "hoping he won’t be offended by a tip."

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Songs from the Black Chair

Barber, Charles

Last Updated: Sep-08-2017
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Subtitled "A Memoir of Mental Interiors," this book is both an exploration of self and a search for reasons that led to the suicide of the author's friend, Henry, when both were of college age. But there is more. As the memoir unfolds, we learn that since childhood, the author experienced episodes of inexplicable, preoccupying, repetitive thoughts and behavior patterns--much later diagnosed as obsessive compulsive disorder (OCD). And finally, Barber discusses being drawn to work with mentally retarded people in a group home, and the mentally ill homeless at Bellevue Hospital in New York City.Growing up in an intellectual New England family with a tradition of sending its sons to Andover (a prestigious prep school) and Harvard, Barber was expected to continue the tradition, and so he did. At Harvard, however, Barber found himself disintegrating into obsessive thinking, unable to concentrate, near suicidal. He withdrew from Harvard, went back to his small town, hung out with his friends Henry and Nick, washed dishes in a local restaurant, took courses at the local college. Obsessive thinking continued to torment him.In desperation, he dropped out of college again, quickly finding a position as a "childcare worker" in a local group home. The author believes this step was the turning point that led eventually to effective treatment of his OCD (psychotherapy and Prozac), completion of his education, a fulfilling "career" in mental health recovery, and a happy family life. He is currently an associate of the Yale Program for Recovery and Community Health at Yale University School of Medicine.

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Annotated by:
Aull, Felice

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

This anthology of poems, short stories, and essays derives from the literary magazine, Bellevue Literary Review, which began publication in 2001. The editor of the magazine and her staff have selected what they consider to be the best literary pieces from the Review's first 6-7 years of publication. Like its parent magazine, the anthology focuses on work that addresses the illness experience, health, healing, and the experiences of health care professionals and other caregivers. The anthology is divided into three parts, each of which has several subsections. Part I, "Initiation," looks at patients' introduction to illness and introduction of doctors to medical education and medical practice. Part II, "Conflict: Grappling with Illness," divides into sections on disability, coping, madness, connections, and family. Part III: "Denouement," addresses mortality, death, loss, and aftermath.

Among the 81 authors represented, seven are physicians, and another half dozen or so are in other caregiving professions such as nursing, social work, counseling. Some writers are well recognized in the literary world (for example James Tate, Amy Hempel, Alicia Ostriker, Rachel Hadas, Sharon Olds, Philip Levine, Floyd Skloot, Julia Alvarez, David Lehman, Rafael Campo, and Abraham Verghese -- the latter two are physicians); most of the less well-known others have published in a variety of venues.

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Essex Serpent, The

Perry, Sarah

Last Updated: Sep-07-2017
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The idea for her second novel came to Sarah Perry in a flash (Ref. 1) as her husband was telling her about the 1699 sighting of a serpent or dragon in Henham, a village slightly to the northwest of the town of Essex, where Ms.Perry was born in 1979. The late 19th century events of the novel occur primarily in Aldwinter, a fictional fishing village on the Blackwater estuary.  Divided into 4 books (with titles derived from a 1669 pamphlet on the Serpent), each with subdivisions by month, further subdivided into chapters, the story takes place over 11 calendar months, from New Year's Eve to November, 1892. Although the story does not feel complicated and should not be difficult to describe in a synopsis, it is a tribute to the novelist's Dickensian talents  that in fact it is somewhat complex, involving four couples and their various children and friends and their increasingly intricate relationships, all revolving around the palpable feeling in Aldwinter that the famous Essex Serpent has returned, resurfaced, or decided to re-animate all the lives therein. The protagonist is Cora Seaborne,  a recently widowed free-thinker, adept in biology and natural sciences, and mother of an adolescent boy, Francis, who would nowadays probably receive the label "autistic." After the death of her abusive husband from oropharyngeal cancer, Cora becomes emotionally involved with Luke Garrett, the treating surgeon, an idiosyncratic, brilliant man, who has a bosom buddy, George Spencer (simply called "Spencer"), a very wealthy former medical school classmate. With an introduction from her friends Charles and Katherine Ambrose, Cora and Martha - her intimate companion - visit William (often referred to as just "Will") and his wife Stella Ransome in Aldwinter, where Will is the parish minister and father to three children. The eldest is Joanna, a precocious adolescent girl one imagines, alongside a younger Cora, as a younger version of this novel's author, who describes herself as vibrantly curious of all her surroundings while growing up in Essex as a young girl. (Ref. 2)

With the arrival of Cora and Martha in Aldwinter, the narrative begins in earnest with the development of the mounting anxiety over the mysterious events (a missing boat, unexplained drownings) attributed to possibly a resurgent Essex Serpent besetting Aldwinter; Luke's miraculous operation saving a man named Edward Burton from a knife wound to the heart; the increasingly romantic relationship between Cora and Will, to Luke's dismay; Stella's rapidly progressive pulmonary tuberculosis; the disappearance of Naomi Banks, a friend of Joanna; and an attack on Luke by the same man who had knifed Edward Burton. By novel's end, without spoiling the plot, most loose ends have been cauterized, left more neatly dangling or deftly retied.  


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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Very early in this memoir, Dr. Sandeep Jauhar refers to an essay Sachin Jain and Christine Cassel published in JAMA (2010) that categorizes physicians as knights, knaves, or pawns. His take: “Knights are motivated by virtue…Knaves are selfish…Pawns are passive.” (p.7) Jauhar rides into medical practice as a knight in shining armor on a white horse after years and years of training. Would he be able to hang onto his knighthood?  

The book is divided into three parts—Ambition, Asperity, Adjustment—bookended by an introduction and epilogue. Jauhar’s disillusionment with American health care is his primary theme, and it connects these three parts:  

As a young adult I believed that the world was accommodating, that it would indulge my ambitions. In middle age, reality overwhelms that faith. You see the constraints and corruption. Your desires give way to pragmatism. The conviction that anything is possible is essentially gone. (pp. 5-6)  

Jauhar is comprehensive and unsparing in accounting for the sources of his disillusionment and his fall from knighthood. He was vulnerable to disillusionment from the start having been pushed by his parents in into medicine against his desires. His mother “wanted her children to become doctors so people would stand when we walked into the room,” (p. 21) and his father said that in medicine he “would have respect, wealth, and influence.” (p.133) He put off medical school for as long as he could by first getting a PhD in experimental physics. Finally, 19 years after first starting college he became a practicing cardiologist, though not without almost bailing out of medical school for a career in journalism as he writes in his first memoir, Intern (annotated here).  

Jauhar's first position was as a hospital staff member heading up a heart failure unit. As hospital staff he wasn’t paid as much as physicians in private practice. This differential wasn’t a problem by itself, but because the salary was insufficient for the lifestyle he sought and his wife—a physician also—urged him to provide, “I want nice things for us: a home, safe cars, good schools. They may seem trivial to you, but they are not to me.” (p. 75) This pressure was made worse by his older brother earning twice the income while working at the same hospital as an interventional cardiologist, and as well by all the other physicians in private practice who lived in big houses and drove fancy cars.  

The story then veers into a period when he sheds his knighthood for knavery. Jahaur joins a pharmaceutical company speaker bureau that supports a particular product and quits over his concern that the product may have been more toxic than first thought. Guided by his brother who says, “As much as we hate to admit it, patients are a commodity,” (p. 92) He takes positions with various private physician practices that operate more like procedure mills than health care providers.  

Jauhar does not do well as a knave, realizing “I had made a Faustian bargain. Having my eyes opened to the reality of contemporary medical practice had been painful. Now I had to make a choice. Continuing on this path was leading to ruin.” (p. 257) And so he tells of his adjustment, which for him is finding an “uneasy equilibrium” (p. 258) by continuing to work with private practices, just not as much, and spending more time with his family. Thus, in the end, Jauhar does not a return to full knighthood and becomes something closer to a knight with knavish tendencies or a knave with knight-like qualities.

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Dying: A Memoir

Taylor, Cory

Last Updated: Aug-21-2017

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Australian writer Cory Taylor was diagnosed with untreatable melanoma at the age of 60.  In a few short weeks she wrote this memoir, exploring what she was feeling and what is missing in modern medical care of the dying.  She died at the age of 61, a few months after this book appeared in her native country.  

The book has three parts. Part I, Cold Feet, starts right off discussing a euthanasia drug purchased online from China. Taylor’s melanoma has metastasized to many parts of her body, including her brain. It was first diagnosed in 2005, a malignant mole behind her right knee. In the decade of her cancer, she has tried three drug trials, thought about suicide, and received palliative care. She has harsh words for doctors who don’t mention death, a psychologist who doesn’t help her “Adjustment disorder,” and medicine in general that sees death as a failure.      
       
Taylor feels anger, sadness, and loneliness. She finds comfort and camaraderie in a group called Exit, where there’s frank discussion about death. She writes, “We’re like the last survivors on a sinking ship, huddled together for warmth” (p. 14). She has neither religious training nor interest in it. She became a writer late in life, and now she sees a clear purpose for her “final book.” She writes, “I am making a shape for my death, so that I, and others can see it clearly. And I am making it bearable for myself” (p. 31).  

Although scared and suffering, she is reluctant to commit suicide because of the impact on her husband, two sons, and friends. Dying, she writes, “is by far the hardest thing I have ever done, and I will be glad when it’s over” (p. 49).

Part II, Dust and Ashes, describes her earlier life with her mother and father. Her parents were unhappy together and eventually divorced. In her life review, Taylor searches for meaning in the influences on her life. Her family moved often in Australia, also to Fiji and Africa. She feels rootless herself, traveling to England and Japan. Both of her parents die with dementia; she was with neither one at their ends.  
   
Part III, Endings and Beginnings, goes further back to her childhood. She reflects on an idyllic time in Fiji, her discovery of the power of language and writing, and various trials of growing up. She worries that she wasn’t vigilant enough in checking her skin, thereby allowing her disease to become fatal. She feels autonomy in having the Chinese euthanasia drug, but her life is clearly closing in. She says she weighs less than her neighbor’s dog. The last page of the book imagines her death as a cinematic montage, ending with “Fade to black” (p. 141).  

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We Are All Welcome Here

Berg, Elizabeth

Last Updated: Aug-14-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Based on the true story of a girl whose single mother is paralyzed by polio, this novel offers readers an unusual opportunity to reflect on particular challenges of living with a person with disability--in this case a person of remarkable resourcefulness and determination. Berg richly develops this story of how mother, daughter, and longtime caregiver/babysitter cope with the practical demands of daily life, the social pressures of growing up in a small gossipy Southern town in the civil rights era, the isolation of immobility, and the facts of ignorance and petty cruelty toward those who live on the margins. Told from the daughter's point of view, including her bouts of impatience, frustration, bewilderment, and anxiety for her mother and the ways her own adolescent concerns sometimes eclipse larger matters that loom in the world outside, the story has the psychological nuance and poignant authenticity I've come to expect of Berg's novels. 

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Summary:

The future of healthcare in the US has long been a subject of debate, with how to pay for it overshadowing other aspects of the topic. In publishing this work, the author, Dr. Ezekiel Emanuel, makes clear: “This book is about [the] transformation in the delivery of care in the United States” needed to ensure that “all Americans receive consistently higher-quality and lower-cost care.” (p. 15)   Paying for health care is not ignored, and indeed how health care payment methods figure in health care delivery is taken into account.  

Emanuel builds the book around 12 particular transformational practices as developed and applied in the several different health care organizations he studied. They included “small physician offices and large multispecialty group practices, accountable care organizations, large managed-care organizations, and even for-profit companies.” He admits to finding these organizations in “a careful, if somewhat haphazard, way” through a combination of serendipitous visits to some of these organizations, attendance at presentations showcasing some of them, and personal recommendations received. (p. 15) Emanuel identifies these 12 transformational practices through “carefully observing and ascribing significance when various groups and organizations in many different geographic locations, are independently reporting similar things.” (p. 16)  

The 12 transformational practices are covered across three chapters in the middle of the book. The first describes the practices that involve the way physician offices are structured and operate (e.g., scheduling patients, measuring physician performance, standardizing care, coordinating care), the second describes the practices that affect provider interactions with patients (e.g., shared decision making, site of service considerations), and the third, the practices that expand the scope of care beyond traditional boundaries (e.g., behavioral health, palliative care). Emanuel provides considerable detail on what these transformational practices entail and on the results they produce. These chapters are preceded by a separate chapter on recent changes in health care stimulating transformations, and a chapter on essential elements required for transformation: catalyzing crisis; leadership; culture, governance, and physician engagement; data; physician management alignment; and financial risk.

Emanuel recognizes that: “No organization can institute all 12 transformational practices all at once. No organization has the management capacity to do that.” (p. 197) Thus, he devotes a chapter on how organizations can adopt the transformational practices that are best suited to them. He aggregates the practices into three tiers and ranks them by prioritization. He carves out a separate chapter on “virtual medicine”—a collection of technologies and methods that enable a range of patient care activities (e.g., diagnosing, treating, monitoring) between different locations. Emanuel covers virtual medicine separately because his view is counter to the conventional wisdom espoused by “the medical techno-utopians,” as he calls them (p. 166) He allows that it can augment health care organization performance but itself is not a transformational practice because “healthcare is fundamentally social.” (p. 175) So as not to leave patients wondering how they could benefit from these practices, he devotes another chapter for them on how to find a doctor.

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The Story of Beautiful Girl

Simon, Rachel

Last Updated: Aug-07-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

On a stormy night in 1968 a retired, widowed schoolteacher in rural Pennsylvania opens her door to find a young couple, she white, he African American, wrapped in blankets, drenched, and silent.  Letting them in changes her life.  They have escaped together from a nearby mental institution most locals simply call "The School."  The young woman has recently given birth.  When Martha lets them in, her life changes forever.   Supervisors from "the School" show up at the door, the young man escapes, and the young woman, memorably beautiful, is taken back into custody.  The only words she is able to speak out of what we learn has been a years-long silence are "Hide her."  Thus she leaves her newborn baby to be raised by a stranger.  The remaining chapters span more than forty years in the stories of these people, linked by fate and love and the brutalities of an unreformed system that incarcerated, neglected, and not infrequently abused people who were often misdiagnosed.  Homan, the young man who loved Lynnie, the beautiful girl from the institution, was deaf, not retarded.  Lynnie was simply "slow," but a gifted artist who recorded many of the events of her life in drawings she shared only with the one attendant who valued and loved her.  Though her pregnancy resulted from being raped by a staff member, the deaf man longs to protect her and care for the baby.  Years separate them; Homan eventually learns signing; Lynnie's sister befriends her and an exposé results in the closure of the institution.  Over those years Lynnie and Homan witness much cultural change in treatment of people like them who were once systematically excluded.  They find social identities that once would have been entirely unavailable to them.  And eventually, after literal and figurative journeys of discovery, they rediscover each other.   

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