Showing 1 - 10 of 13 annotations tagged with the keyword "Human Rights"

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Victoria Sweet describes her training in medical school, residency, and work in various clinics and hospitals. From all of these she forms her own sense of what medical care should include: “Slow Medicine” that uses, ironically, the best aspects of today’s “Fast” medicine.   

Her dramatic “Introduction: Medicine Without a Soul” describes poor—even dangerous—care given to her elderly father at a hospital. An experienced physician, she calls Hospice and saves him from a “Death Express” the hospital has “quality-assured” (pp. 6, 8). 
 
The book continues with 16 chapters in chronological order. The first ten describe Sweet from a late ‘60s Stanford undergrad and “a sort of hippie” (p.14), next a learner of “facts” in preclinical studies at Harvard, plus the clinical rotations (including Psychiatry, Internal Medicine, Pediatrics, and electives), then an internship as a doctor and her work in various clinics and hospitals. Throughout she’s collecting skills, concepts, even philosophies (Jung, feminism, Chinese chi, value of stories). She also describes particular patients important to her learning. She dislikes “just good enough” medicine at the VA (p. 95), “unapologetic budgetarianism” (p 141), medicine that is reductive and uncaring, and futile care for dying patients.  

Halfway through, we find an “Intermission: In which Fast Medicine and Slow Medicine Come Together.” With a year off, Sweet signs on as physician for a trekking group headed for Nepal. Unexpectedly, she treats an Englishman in the Himalayas. Returning home, she treats a man whose pulse is declining and rides a helicopter with him to a hospital. She realizes that she can take on the full responsibility of being a doctor, including when to use Fast medicine and when to use Slow.  

The following chapters deal with the 1980s emergence of AIDS, a hand injury to Sweet (she sees herself as “a wounded healer,” p. 182), her new understanding of medicine as “A Craft, A Science, and an Art” (Chapter 12) and conflicts between medical care and economics-driven medicine (“checked boxes,” administrators, quality assurance, even outright corruption).  She scorns use of the labels “health-care providers” and “health-care consumers” (p. 211) and discovers Hildegard of Bingen’s medieval vision of medicine. She works for 20 years at Laguna Honda, the topic of her earlier book God’s Hotel (2012). Chapter 16 closes the book with “A Slow Medicine Manifesto.”  

Sweet pays tribute to her teachers, both in a dedication to the book, and throughout the pages: professors, preceptors, nurses—especially a series of Irish Kathleens—and patients. There are some 20 case studies of patients throughout the book, their medical dilemmas, their personalities, and Sweet’s Slow Medicine that involves creating a healing relationship with them, finding the right path for treatment, even watching and waiting.

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Eros and Illness

Morris, David

Last Updated: Oct-31-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Several threads tie together this ambitious, beautifully digressive reflection on eros and logos in the experience of illness and the conduct of medicine and health care, which takes into account what a complex striation of cultural legacies, social and political pressures, and beliefs go into both.  Framing his reflections on the role of unknowing, altered states, inexplicable events, desire, hope, love, and mystery in illness and healing is a fragmented, poignant narrative of Morris’s own experience of watching his wife succumb to the ravages of early Alzheimer’s. 

Her disease is one that leads both professional and intimate caregivers to the same question:  what do you do when there’s nothing left for scientific medicine to do?  Conversations about palliative care are broadening, he points out, and medical education is making more room for the kind of reflection the arts invite and for spirituality as a dimension of illness experience and caregiving.  Guidance in such explorations can be found in ancient literature, especially in the archetypes provided by the Greek and Roman myths.  Morris makes astute and helpful use of his own considerable training in literary studies to provide examples of how eros and logos—complementary contraries—have been conceived and embodied in a somewhat polarized culture and how incomplete health care is when it doesn’t foster the capacity to dwell in and with unknowing, possibility, indeterminacy, and mystery.  Knowing the limits of scientific medicine may, paradoxically, make it better.  Certainly it can help keep our engagements with illness—always relational, always disruptive, most often to some degree bewildering—humane.




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Summary:

This engaging memoir describes Pearson's medical training at the University of Texas Medical Branch (UTMB) on Galveston Island from 2009 to 2016. During these years her personal values become clear, and she finds fault in her training, in medicine as practiced in Texas, and even in her own errors in treating patients.

Having left a graduate writing program, Pearson took a "postbac," a year of pre-med courses in Portland, Oregon. She interviewed at medical schools "all over the country" and writes satirically about them; she concludes "nothing out of Texas felt quite right," having lived there and done her undergraduate work at University of Texas at Austin. She's a Spanish speaker with a working-class background. When her classmates provide the annual “white-trash”-themed party, she wonders, “do I go as myself?” (p. 21).

Pearson's education continues on three tracks: the formal UTMB courses in medicine, a simultaneous Ph.D. program at the Institute for the Medical Humanities at the University of Texas, and her volunteer work at the St. Vincent's Student Run Free Clinic. The Ph.D. program is off-stage, not mentioned, but the St. Vincent's Clinic becomes pivotal to her development as a doctor and a moral person.

As for medical school, she finds the relentless "truths of biochemistry and anatomy" so reductive that the suffering of people and surrounding politics seem "not to matter at all" (p. 70). Among the politics are: the lack of safety nets for poor people, the use of uninsured (including prisoners) for students to practice on, failures to extend Medicare, pollution (notably from the oil industry), losses of charitable care, and income disparities that include crushing poverty for many. Something of a rebel, she writes that medical school "felt like junior high" (p. 44). She does enjoy the "clinical encounters" with real patients.

St. Vincent's, by contrast, was “a relief.” Her pages sparkle with her conversation with clinic patients, some homeless, all poor, and all suffering. She reports--confesses, she even says--her errors that had consequences for patients. She writes that errors are an unavoidable part of medical education, but that it's wrong that they should routinely happen to the poorest members of society.  

Chapter 8 discusses depression, which she felt after the second year. She writes about high rates of suicide among medical students and doctors; indeed a close friend killed himself during the "post-doc" year. Because some states require doctors to report psychiatric care, some doctors avoid such care. This consequence “drives a suicide-prone population away from the help we may need" (p.92).

The last two years are the rotations through specialties: surgery, dermatology, trauma, rural medicine, neurology, internal medicine, and so on. These are clearly and insightfully described. In one case (internal medicine), she allows the reader to see the irony of a doctor providing hair removal by laser, diet foods, and Botox treatment for wrinkles, “a pure luxury transaction” (p. 183).

Pearson describes the storms, hurricanes, and floods that hit Galveston Island, also the pollution from the oil industry that causes a “cancer belt” along the Louisiana and Mississippi coasts (p. 104).
At last she finishes her program, understanding that her identity is simultaneously a person, a physician, and a writer (p. 248). 

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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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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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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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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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Annotated by:
Saleh, Mona

Primary Category: Literature / Nonfiction

Genre: Ethnography

Summary:

Written by successful Australian journalist Geraldine Brooks, Nine Parts of Desire recounts her experiences living among and working with Muslim women throughout her time as a correspondent in the Middle East. Brooks delves into topics as varied as non-marital sex, female genital mutilation, the different types of veiling (and the reasoning behind veiling at all), women’s participation in the Iranian military, the Qur’an, and the life and teachings of the Muslim Prophet, Muhammad. Brooks presents various perspectives and interpretations of certain Muslim practices, such as the wearing of the veil (hijab). She looks at the specific Qur’anic passage that prescribes the veil: “And when you [men] ask his [the Prophet’s] wives for anything, ask it of them from behind a curtain (hijab).” (p. 84)  Brooks intelligently analyzes, “What is so puzzling is why the revelation of seclusion [veiling], so clearly packaged here with instructions that apply only to the prophet, should ever have come to be seen as a rule that should apply to all Muslim women.” (p. 84)  It is often difficult to find alternative interpretations of Islamic requirements, but Brooks presents them here without filter and speculates why an apparently individually prescribed veil would become so widespread that it now practically symbolizes Islam. 

Brooks recalls several encounters that she had with fellow Westerners living in the Middle East for various reasons, from work to having married a Middle Easterner and re-located there. Some of the most sympathy-inducing moments are in these situations where Westerners are forced to live under the rules of strict, conservative, Muslim societies.  In one anecdote, Brooks relays the case of her friend, Margaret, an American woman who married an Iranian man. When Brooks asks Margaret why she does not go home to America to visit her family, Margaret replies, “My husband doesn’t want me to,” and Brooks then clarifies, “It was up to him to sign the papers that would allow her to leave the country.”
(p. 106)  This situation shows that being an American woman or an educated woman does not prevent one from being held to the same standards as local women in certain Muslim societies.

The final chapter is entitled, “Conclusion: Beware the Dogma” and serves to share Brooks’s personal opinions on the lives and faith that she had so objectively presented in journalist fashion until this point. Her opinion is summarized: 

“Today, the much more urgent and relevant task is to examine the way the faith [Islam] has proved such fertile ground for almost every antiwomen custom it encountered...When it found veils and seclusion in Persia, it absorbed them; when it found [female] genital mutilations in Egypt, it absorbed them; when it found societies in which women had never had a voice in public affairs, its own traditions of lively women’s participation withered.”
(p. 232)

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Annotated by:
Saleh, Mona

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This memoir follows the journey of Nujood Ali, a young, Yemeni child bride from a rural village. She was later named Glamour's Woman of the Year in 2008. 

The memoir begins with Nujood’s escape from her husband’s house and how she made her way—alone—to a courthouse in the country’s capital where she was determined to win a divorce.

Nujood’s father pulled her of school when she was in the second grade and forced her to marry a man much older than she. At this time, the minimum legal age of marriage for girls was 15, but many families—especially in rural areas—continued to engage in marrying off daughters much younger than this. Nujood’s father’s reasoning (which echoes the reasoning of many others who engage in this practice) included having one less child to feed, preventing Nujood from being raped by strangers, and protecting her from becoming the victim of “evil rumors.” (p. 54) 

In a practice common in Yemen, her father moreover stipulated that Nujood’s husband would not have sex with her until she had begun to menstruate; the husband did not wait and instead raped Nujood after they were wed. 

Throughout the book, Ali and French journalist Delphine Minoui skillfully explain how women are not given choices in Nujood's part of Yemen: 

“In Khardji, the village where I [Nujood] was born, women are not taught how to make choices. When she was about sixteen, Shoya, my mother, married my father, Ali Mohammad al-Ahdel, without a word of protest. And when he decided four years later to enlarge his family by choosing a second wife, my mother obediently accepted his decision. It was with that same resignation that I at first agreed to my marriage, without realizing what was at stake. At my age, you don’t ask yourself many questions.”
(p. 23)

Ali was connected with her lawyer, Shada Nasser, at the courthouse, and her case garnered both international attention and outrage. After a hearing, Ali was granted her divorce and took trips out of Yemen, including to the United States, even meeting with then Secretary of State Hillary Rodham Clinton. The memoir ends on a happy note, with Nujood starting her education again, at a new school, and definitively deciding to become a lawyer who is committed to raising the legal age of marriage in Yemen. The authors even discuss two cases of girls who were granted divorces in Yemen after Nujood and were able to use her case as legal precedence. 

An article in the Huffington Post explains that while Nujood’s memoir ends on a happy and inspiring note, there is still much more work to be done. It points out that Nujood insisted on remaining in Yemen, while her American advocates believed it would be best for her and her future to remove her from her family. Nujood’s family put pressure on her to demand more and more financial compensation for her international fame. Even though her co-author and other advocates begged her to go to school, she did not complete her education. Her father used a (likely large) portion of her book proceedings to marry a third wife. The most recent update is that Nujood remarried (circumstances and consent unclear) and mothered two daughters of her own.

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Annotated by:
Saleh, Mona

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Dr. El Saadawi is an Egyptian feminist activist and a psychiatrist who originally published this book in Arabic in 1977. She has had a tumultuous relationship with the Egyptian government and was imprisoned after criticizing former President Anwar Sadat. During her career she worked at several universities in the United States. The Hidden Face of Eve: Women in the Arab World  has seamlessly incorporated elements of memoir and critical analysis of Arab culture and Islam. El Saadawi divides  the book into four sections: The Mutilated Half, Women in History, The Arab Woman, and Breaking Through. The book opens with Dr. El Saadawi recounting in the first-person her harrowing experience with female genital mutilation (a very common practice in her home country of Egypt) when she was 6 years old. She uses very descriptive, perhaps even graphic language, to describe the experience in all its horror. This early childhood memory sets the stage for the audience to bear witness to all the various types of misogyny that many Egyptian and Arab women inevitably experience. 

Dr. El Saadawi then skillfully relates memories of being told, for example, to not ask too many questions because she was a girl, and states that she has never heard the word “bint” (Arabic word for girl) used in a positive fashion. These nuggets of personal experiences are inserted into an overview of the complaints of stifled sexuality and associated sequelae with which her psychiatric patients struggled. She delves into the topics of Islam’s take on non-marital sex, illegitimate children, and prostitution thrown against the backdrop of her personal experiences seeing young, poor girls who work as maids being raped and impregnated by the men of the families who employ them and then being held as the sole accountable party.

After the first section, Dr. El Saadawi broadens her focus to include the status of women starting with Eve (whom the major monotheistic religions, including Islam, believe to be the first woman on Earth). Dr. El Saadawi investigates the historical designation of women as inferior in the Jewish faith and explains that as Christianity and Islam evolved against this backdrop, they also assigned women to a similar status. She insightfully points out how femininity did not evolve independently of society but rather that femininity and a woman’s place in society (all societies) are direct reflections of socioeconomic practices or goals of that society. 

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