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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.
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."
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.
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.
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)
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?
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)
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.
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.
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.
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.