Showing 1 - 10 of 20 annotations tagged with the keyword "Human Rights"

Summary:

Responding to a shortage of doctors in rural areas in 2013, Dr. Virji, a Muslim, moved from the urban East coast to a small town in Minnesota.  Welcomed at first, he and his family began, after Trump's election in 2016, to experience withdrawal, suspicion, and outright racism in his own and neighboring towns, despite having established solid, trusting relationships with patients.  His children were being ostracized in school.  Discouraged, he took steps to accept a job in Dubai, but changed his mind after a local pastor invited him to speak in her church to correct common misconceptions about Muslims and to engage his neighbors in deeper dialogue about their differences and commonalities.  The lecture was so successful, he took it further into other towns and parts of the country.  He has stayed in Minnesota and witnessed change because of this invitation and his candid, open-hearted response. 

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Summary:

This illuminating and disturbing book explores how various forms of white supremacy became expressed in policies, laws, and elected officials, such as Donald Trump. Physician and sociologist Metzl details social changes in Missouri, Tennessee, and Kansas, where white Americans backed changes that, ironically, dramatically harmed them with gun suicides, school dropouts, worse healthcare, and shorter life spans. For Metzl, “Whiteness” refers not to skin color but to a political and economic system of white privilege.

Metzl's thesis that: “Trump supporters were willing to put their lives on the line in support of their political beliefs” was, in fact, a sort of “self-sabotage” (pp. 5-6). While a conservative political movement fostered white racial resentment, largely in lower-income communities, the mainstream GOP did its part by crafting policies against the Affordable Care Act, higher taxes, and restrictions on guns. An atmosphere of polarization and political stasis grew. Metzl writes: “Compromise, in many ways, coded as treason” (p. 11).  

Metzl focuses on the examples of Missouri, Tennessee, and Kansas to “suggest how the racial system of American fails everyone” (pp. 16, 20). He visits each state, leading focus groups, interviewing formally and informally, reading newspapers, and inductively formulating concepts that seem to explain the nonsensical behavior of rejecting helpful programs. For example, because “risk” in Missouri has become a code name for possible attacks by black people, white people buy guns, especially when restrictions are removed. Many white men feel that a gun (or many guns) restores their privilege, but suicide of white males, often low-income, goes up. Metzl’s statistics and charts show contrasts with other states with stricter laws and lower suicide rates. He calls for preventive medicine to lower such deaths.  

For Tennessee, the Affordable Care Act offered many benefits to poor or middle-income people, but Republicans (and especially Trump) attacked it as big government over-reach, socialism, exorbitant cost, a program that would help minority people, for example “welfare queens.” “Cost” became a proxy for the “we don’t like it,” even when the economics would be favorable for good healthcare for all. Blacks were generally in favor of ACA, but white blue-collar men swore by their independence and autonomy. Neighboring Kentucky accepted ACA, and ten graphs included in the book clearly chart the better outcomes for Kentucky in such areas as insurance coverage, death rates, and seeing a doctor.  

Metzl returns to Kansas, where he grew up and recalls the pride Kansans had in their state. Republican Governor Sam Brownback enacted massive tax cuts with large reductions to state services and school funding, an “experiment” in “epic defunding.” The GOP, Tea Party, Koch brothers, and “trickle down” theories all played a part in benefiting the wealthy financially, while minority and lower-income groups paid more. Infrastructure, such as roads, suffered. Untested charter schools collected wealthy white students, while public schools plunged in funding, test scores, and graduation rates (see 17 graphs). Since education is a predictor of health, there are and will be long-term costs to Kansans, especially for minority groups.  

Metzl attacks the “Castle Doctrine” (“a man’s home is…”) as a symbol of narcissism, individualism, and as a risk for all citizens when social structures are abandoned. He closes with some hopeful examples of social change for the better.

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Three Identical Strangers

Wardle, Tim

Last Updated: Nov-08-2018
Annotated by:
Thomas, Shawn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The world is a big place – 7.4 billion people and counting. As much as we all enjoy the game of finding our doppelganger in a crowd, there probably isn’t anyone in the world who is exactly like us. With a genetic code of over 3 billion base pairs, of which there are innumerable permutations, we would be hard pressed to find a clone of ourselves even if the world had 7 trillion people. The exception is if you were born with an identical sibling. But then again, you would know if you had a twin. Wouldn’t you?

The documentary Three Identical Strangers tells the unbelievable story of Bobby Shafran, Eddy Galland, and David Kellman – three identical triplets who were separated at birth and serendipitously reunited at the age of 19. The film takes us through the circumstances of their reunion, highlighting the brothers’ instant rapport over their similarities and the ensuing fame resulting from the public fascination with their extraordinary story. It began as a euphoria-filled saga complete with talk show interviews, movie cameos, and even a successful restaurant which they called “Triplets”.

The honeymoon phase ended in horrific fashion once the parents of the respective siblings began asking questions as to why the brothers were separated in the first place. A journalist who had been investigating the triplets’ adoption agency, Louise Wise Services, helped to uncover the details of an elaborate study performed by a child psychiatrist named Dr. Peter Neubauer. In this study, each brother was placed into a home which had another adoptive sister, and specifically assigned to a family of lower, middle, and upper-class backgrounds. While the exact details of the study objective remain unknown, it appears that the study was trying to determine whether psychiatric illness was correlated more strongly with genetics or with developmental environment; this is referred to colloquially as a “nature vs. nurture” experiment.

The implications were earth-shattering. The brothers struggled to cope with the realization that they had been marionettes in some sort of sick experiment, with Dr. Neubauer pulling the strings the whole time. Even worse was the fact that there were possibly several more identical siblings with the same story who were deprived of their biological soul mate, all at the behest of Neubauer and his associates. In fact, other sets of identical siblings were eventually made aware of the experiment, and did have the chance to meet, albeit many years after their birth.

The triplets also learned that their biological mother had serious psychiatric problems – hence their inclusion in the study. All three brothers had behavioral difficulties as adolescents, and it was distressing to consider whether their issues may have been exacerbated by the separation anxiety they experienced upon being separated at birth. In particular, Eddy suffered from worsening episodes of bipolar disorder throughout his life. In 1995, at the age of 33, he committed suicide. He is notably absent for the duration of the documentary, with Bobby and David narrating much of the film. Today, they are still trying to uncover the particulars of Dr. Neubauer’s study, but the research records remain under seal at Yale University until 2066. They may never know the full extent of what was done to them and why.

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Alpha: Abidjan to Paris

Bessora,

Last Updated: Jun-04-2018
Annotated by:
Natter, Michael

Primary Category: Literature / Literature

Genre: Graphic Memoir

Summary:

Alpha is part graphic novel, part heartbreaking memoir of cabinetmaker Alpha Coulibaly. It chronicles the story of a man on a journey to find his family and a better life, but his story could easily apply to the tens of thousands others who are seeking refuge. This is the painful tale of the refugee journey.

Alpha is from Cote d’Ivoire, Africa. The book is written in first person, in a manner as if the reader and Alpha are sitting together at a coffeeshop, as a family member or dear friend would recant their trials and tribulations to a trusted confidant. The text is blunt, matter of fact, but also painfully deep and poetic.

We learn about Alpha’s desire to reconnect with his family, whom he believes made it to Paris and to his sister-in-laws salon. He explains the futile process of attempting to go through the government sanctioned means of gaining access to other countries, which proves to be impossible. The only remaining option is to attempt to steal away by paying smugglers to help him cross border after border. This means long trips in overcrowded vans, treks by foot, and even precarious watercrafts. The journey is harrowing, and soul crushing. Death is looming around every bend, whether by illness, dehydration during these long, crowded desert drives, or by the hand of crooked armed border guards. Days turn to weeks, weeks to months, and eventually years. Many perish in their journey, but Alpha remains steadfast in his commitment to find his child and wife despite the unfavorable odds. He endures death of fellow refugees, friends, and children. He is forced to live in slums in each new country he enters and work laborious odd jobs to pay off smuggler after shady smuggler at each never ending leg of his journey. This is a tale of the many who are treated like unwanted pieces of trash, balled up and thrown into slums, labeled as “illegal immigrants,” and all so they can have the chance of a better life for them, and for their families.

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Summary:

This is an important contribution that analyzes, critiques, and aims to correct structural inequalities (racism, sexism, capitalism) that influence contemporary medicine, with particular attention to the technical influences of computers, “big data,” and underlying values of neoliberalism, such as individualism, exceptionalism, capacity, and progress through innovation.  

Introduction: Theorizing Communicative Biocapitalism
Banner writes, “biocapitalism is comprised by the new economies and industries that generate value out of parts of human bodies” (p. 12). Parts include DNA, ova, and organs, but there’s also data from medical care, where patients are reduced to their physical bodies and/or to their “digital status” in medical records, research, even personal information volunteered on the Web, all which is indicated by the term “communicative.” As an example, Banner cites the large realm of patient on-line groups that are exploited by large companies as free labor, thus reducing the voice of the patients. Approaches of narrative medicine and medical humanities have not dealt with digital health, market forces, and the implied power relationships. Perhaps the new subfield of health humanities has promise to do so, if not also captive to “the logic of the market” (p. 17).   

Ch. 1. Structural Racism and Practices of Reading in the Medical Humanities
Banner writes, “Medical racism is a product of structural and institutional racism” (p. 25). She finds that current approaches from interpretive reading are insufficient because “the field’s whiteness has contoured its hermeneutics” (p. 25). Instead of the “reading-for-empathy” model, we should read for structures of racism, sexism, privilege, as well as economic and political inequality. She illustrates such reading with texts by Junot Dìaz, Audre Lourde, and Anatole Broyard.  

Ch. 2. The Voice of the Patient in Communicative Biocapitalism
 Patients have flocked to networking websites, voluntarily posting much personal information. Banner analyzes how technocapitalists mine these sites for data to use or sell. Patients’ information, given voluntarily, amounts to free labor and, even, work-arounds for companies that avoid expensive double-blind controlled studies. Rhetoric for these sites speak misleadingly of the “patient voice,” “stakeholder,” or “story sharing” and hide the exploitation involved. The chapter is specific for websites, drugs, and drug companies.  
Banner discusses (1) the “feminized labor” involved with sites for fibromyalgia and chronic fatigue syndrome (both “contested diagnoses”) and (2), more abstractly, the medicalization of the clinical gaze on patients who participate in websites and yearn for “an imagined state of purity,” and/or “an ableist vision of norms and reparative medicine” (p. 61). Overall, the digitalized-patient voice is colonized by forces of whiteness and should be decolonized. She discusses writing by Octavia Butler and Linda Hogan, both women of color.

Ch. 3. Capacity and the Productive Subject of Digital Health
This fascinating chapter describes and critiques “digital self-tracking,” or the use of devices such as Fit-Bits that help create and maintain the so-called “Quantified Self” (or “QS”). Banner finds this fad within the tradition of the Enlightenment (Ben Franklin) so that “exact science” may “optimize” individuals by being “responsibilitized” in a “self-sovereign” way. QS users understand that “Everything is data” (p. 83). She argues that this trend emphasizes “masculine objectivity” while “disavowing debility” (p. 85). Collected data may contribute to a “worried well” status or conditions of “precarity” or “misfitting.” She writes, “QS practice remains an inscription of the self as a self-surveillor, engaged in masculinized practices of neoliberal self-management” (p. 91). She discusses the technologies of the devices Scanadu, Melon, and Scarab. She provides and interprets photos of visual arts representations by Laurie Frick, who is a “self-tracker.”  

Ch. 4. Algorithms, the Attention Economy, and the Breast Cancer Narrative
Banner discusses Google Analytics, later Alphabet, which includes Calico and Verily, which have partnered with pharmaceutical companies. Such combinations of algorithms, capitalism, and media aim to capture the public’s attention, especially online. Messaging about breast cancer becomes reductive, emphasizing medical solutions, not prevention, and it avoids discussion of causes such as environmental pollution. Some critics decry “pinkification” of breast cancer. Public stories, such as Angelina Jolie’s, emphasize individual empowerment, a “hegemonic construction of illness”’ (p. 112), and these are amplified by mass media, both print and electronic. More diverse messages would value “heterophily over homophily” (p.121).   

Ch. 5.  Against the Empathy Hypothesis
Drawing on several commentators, Banner critiques the notion of empathy as a goal for caregivers as condescending to the patient and suspect when allied with productivity and efficiency for institutions. Further, the notion of “resilience” (in a “bleed” of neoliberal rhetoric into health humanities) has been misused in applied literature, parallel to notions of self-help and self-management. Some hermeneutics still support values of “state and capitalism” and ignore writers of color. Banner discusses the work of African-American poet Claudia Rankine, some of whose work is “postlyric,” and J. M. W. Turner’s painting “The Slave Ship” that illustrates “necropolitics.”  

Conclusion
Throughout the book Banner illustrates reading “for structure” in her interpretation of texts and visual images but also in medical institutions and practices and, still further, in the enormous and pervasive world of government forms and programs, big data, computers, and beyond. She finds structures of capitalism, sexism, and neoliberalism within existing “heteropatriarchal, ableist, and racist frameworks” (p. 154) despite claims of neutrality. She urges medicine and the humanities to develop new methods. She mentions specific collectives and communities that now challenge such norms (such as Gynepunk and CureTogether), and she calls for thinkers in many disciplines to confront demeaning technology and to “engender spaces in which care is more just, and more humane” (p. 156).      

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Annotated by:
McClelland, Spencer

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

An extended essay on the experience of child immigrants woven around the forty questions that author Valeria Luiselli asks in her work as a translator for children seeking entry into the United States.

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Close But Not Touching

Sands, Jean

Last Updated: Jan-30-2018
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Jean Sands' second full-length poetry collection, "Close But Not Touching," was published a few months after her death in October, 2016.  Sands had been working on this volume for more than a year, a process slowed by debilitating illness.  This collection, like her first book, "Gandy Dancing," is autobiographical, raw, plainly written, and powerful.  Both books deal with sexual abuse, marital abuse, dysfunctional family dynamics, divorce, poverty, and a woman's struggle to survive.  And in Sands' case, to write about that survival.

The 47 poems in "Close But Not Touching" are divided into four sections.  The first examines Sands' childhood.  Her mother, born in Hungary, as a child terrified of German soldiers, is failing. In  the book's opening poem, "When Mother Stopped Remembering," Sands introduces her themes of human rights, sexual and physical abuses, and the need to speak out against them. The poem closes with Sands'  mother forgetting words, growing silent, and giving up books.
"In Germany, they emptied the shelves, /  burned the books, the men, the women, the children." (pp 4-5).  Sands' response to the loss of words, of power, is her poetry.

In "Becoming Helen" (pp 7-9), Sands pays tribute to an older woman writer who became a mentor. "Forty years later the keyboard clicks under my fingers, / unseen hands hover above mine." The specter of sexual abuse is raised in "The Peach Farmer's Daughter" (p 15).  Abused by her father, even after his death the daughter can't forget "his liquor breath, his fingers inside." In other poems in this section, Sands addresses aggression ("Pigs" p 16), loss of innocence ("Plum" p 17), humiliation ("The Music Lesson" p 18), and desire ("Danbury Fair" p 19).

The second section takes a loving and yet brutally forthright look at Sands'  four sons and how her marriages and divorces affected them.  She doesn't spare herself--her poor choices--or the sons' fathers.  Especially strong poems include "Night Sounds," "Suicide," "Swimmer," "The Policeman Is Your Friend," and "Father Poem" (pp 26-30).

The poems in section three chronicle the author's divorce from her abusive second husband, specifically, but also her hard-to-shake feelings of entrapment and helplessness in the face first of childhood sexual abuse and then of marital physical abuse.  In "Car Ride" she writes "I can't do this anymore, // I can't do this, // I can't" (pp 38-39).  Forced from her home by police pounding at her door in the dark, she writes "You set me up / ex-husband with greed on your mind. / Money hungry at anybody's expense but your own" (p 40).  Divorce leads to poverty for the author.  "Divorce Settlement," "Working in a Discount Store after the Divorce,"  and "Saving the Universe" will ring true for many who must struggle for subsistence from day to day (pp 46-48).

Section Four brings this collection full circle, offering hope and resolution.  The author has met another man, a good man.  In poems such as "Rain" (p 60) and "As Evening Comes" (p 64) there is a softening, a willingness to open to this new life and new love.  In perhaps the most moving poem in the collection, "At the Vet's Office" (p 65-66), Sands looks back at her marriages ("The first one was a hitter-- / open palms, threatening fists . . . The second one, worse.  A handsome man / with no past.  I should have known / his clamming up was covering up") and compares her past with her present: "I am overwhelmed with gratitude / for the sweet man who will pick up the cat / and pay the bill without a word" (p 66).   This "sweet man" was married to Sands for more than 25 years, became her writing partner, a father to her four sons, and served as her caretaker through many years of her  illness.

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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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