Showing 1 - 10 of 355 annotations tagged with the keyword "Freedom"

Summary:

Barbara Ehrenreich wants to manage her health and all that is available to address various aspects of it. She makes clear that she will do the managing and has written this book to reflect on how she plans to do it.  Ehrenreich explains why managing her health is necessary. She puts it this way:

We would all like to live longer and healthier lives; the question is how much of our lives should be devoted to this project, when we all, or at least most of us, have other, often more consequential things to do (p. xv)  

Ehrenreich doesn’t reject the project of getting longer and healthier lives per se, but she believes that what this project requires isn’t always worth the results it produces. The time and energy needed could be put towards better ends.  

Like many other critics, Ehrenreich details how Biomedicine often comes up short on outcomes for all the time, effort, and money it requires from the people it serves. She covers the familiar territories of over diagnosis and over utilization of health care products and services, and goes further to suggest that many common medical practices are more ritualistic and humiliating than evidence-based and effective.

Unlike other critics, Ehrenreich takes on other activities directed at health outside of Biomedicine. She questions whether the physical fitness industry delivers on its promises to produce healthier lives and especially whether there is a net benefit based on the time and energy required from people who take it on. She crosses to the other side of the mind-body continuum when she next aims at the “madness of mindfulness” (p. 71).  She finds the mindfulness movement offers more hubris than solutions.  

Ehrenreich worries that the combined effects of the authority of Biomedicine, the physical fitness frenzy, and the madness of mindfulness have created a social context that treats death as something that can be avoided or at least delayed. This social context thereby implies that not actively engaging in efforts to fight off death “can now be understood as a suicide” (p. 97).

Ehrenreich offers some reasons for why these efforts to improve health and prolong life do not always produce benefits that in her view are worth pursuing to the exclusion of other activities resulting in a better life (or death). Drawing on examples from cell biology and immunology, she suggests that what is at work are disease processes too complex for the human mind to apprehend completely combined with the human impulse to  simplify, which lead to practices, procedures, and prescriptions that in the best case are ineffective and in the worst case harmful.   

At the end of the book, Ehrenreich laments the efforts health care professionals, nonprofit organizations, government agencies, and commercial entities make to push older people into commitments for “successful aging.” Those making these efforts argue “aging itself is abnormal and unacceptable” (p. 164).  This commitment requires older people to spend a lot of time in clinics, gyms, and wellness classes—“The price of survival is endless toil,” is how Ehrenreich formulates it (p. 163).  She doesn’t think this price is worth what is required of people who are supposed to benefit, and advises her friends to insist “on a nonmedical death, without the torment of heroic interventions to prolong life by a few hours or days” (p. 208).

I continue to elude unnecessary medical attention and still doggedly push myself in the gym, where, if I am no longer a star, I am at least a fixture. In addition, I retain a daily regimen of stretching, some of which might qualify as yoga. Other than that, I pretty much eat what I want and indulge my vices, from butter to wine. Life is too short to forgo these pleasures, and would be far too long without them (p. 207).

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From Fish to Philosopher

Smith, Homer

Last Updated: May-17-2018
Annotated by:
Thomas, Shawn

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Most students of biology are well aware of our humble beginnings as puny, single-celled lifeforms. The mechanism of our remarkable transformation was famously described by Charles Darwin in his groundbreaking text On the Origin of Species, published in 1859. In many respects, Darwin’s magnum opus was just the opening chapter of a much broader discussion of how we humans have taken our current form. Darwin elucidated only a general process of adaptation and evolution in the face of environmental pressures. He left his successors with the more onerous task of applying this rule to the tortuous history of human evolution.

Rising to the occasion nearly a full century later was Homer Smith, a prominent kidney physiologist who spent much of his life and career as the Director of Physiological Laboratories at the NYU School of Medicine. Dr. Smith shares his account of our evolutionary history in his 1953 book From Fish to Philosopher. In the book, he posits that organisms must have a system for maintaining a distinct “internal environment” in order to have any sense of freedom from the perennially dynamic external environment. He guides the reader through the various biological filtration devices that have come and gone over the eras, culminating with the fist-sized organs dangling next to our spines.


The book is often billed as a detailed treatise on how modern-day mammalian kidneys have arisen from their more primordial forms – a fair assessment, especially given the author’s background. But this book offers readers something much more ambitious in scope than a rehashing of his work in renal physiology. For example, the first chapter of the book, “Earth”, highlights geological milestones that molded the early environment of the first known lifeforms. In Dr. Smith’s words,

“the history of living organisms has been shaped at every turn by earth’s vicissitudes, because every geologic upheaval, by causing profound changes in the distribution of land and sea, has had profound effects on the climates of both, and hence of the patterns of life in both” (pp. 9).

By the final chapter, “Consciousness”, he has begun to ponder questions of metacognition and learning. He marvels at how our complex nervous system has allowed classical pianists to balance the rigidity required for technical prowess, and the fluidity required for creativity. This is not a textbook about our kidneys. From Fish to Philosopher is a story of mankind’s genesis, told through the existential musings of a physiologist who left no stone unturned.

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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:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Weeks after the birth of her child, the writer receives a phone call informing her that her mother, who has gone missing, has hanged herself.  This memoir, like others written in the aftermath of similar trauma, is an effort to make some sense of the mother’s mental illness and horrifying death. Unlike many others, though, it is the story of a family system—and to some extent a medical system—bewildered by an illness that, even if it carried known diagnostic labels, was hard to treat effectively and meaningfully.  The short chapters alternate three kinds of narrative:  in some the writer addresses her mother; in some she recalls scenes from her own childhood, plagued by a range of symptoms and illness, and her gradual awareness of her gifted mother’s pathological imagination; in some she reproduces the transcript of a video production her mother narrated entitled “The Art of Misdiagnosis” about her own and her daughters’ medical histories. Threaded among memories of her early life are those of her very present life with a husband, older children, a new baby, a beloved sister and a father who has also suffered the effects of the mother’s psychosis at close range.  

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Every Note Played

Genova, Lisa

Last Updated: Apr-10-2018

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This is a dramatic and moving story about a concert pianist who, at 45 years of age, suddenly and inexplicably, has ALS, and also equally about his ex-wife Karina, who takes on his care throughout his slow, inevitable, and lethal decline. As many readers know, ALS (Amyotrophic Lateral Sclerosis). or “Lou Gherig’s disease,” hardens the motor nerves so that, progressively, there is no more control of muscles throughout the body. Not many readers know, however, the difficult path such patients and their families must pursue. This sensitive and detailed novel takes readers powerfully into the world of ALS, a disease for which there is today no cure.                                                                                      

Obsessed with his musical career and international travel, Richard has paid little attention to Karina and their daughter, Grace, and he has had affairs with other women. Karina has deceived him about her inability to bear more children. Because of their move from New York City to Boston, Karina, also a gifted pianist, has lost a possible career in jazz and now gives piano lessons to unpromising students. 

The first several chapters alternate between Richard and Karina. Although divorced from him, she brings him, now an ALS patient, back into the home they once shared. Various nurses, doctors, and other specialists try to explain the difficult future that includes certain loss of body functions, but Richard and Karina are slow to comprehend these. Despite their denial, they are forced to come to terms with Richard’s progressive decline and, finally, death.     
          
Richard loses the ability to use his hands, then his arms. He needs a special machine to breathe at night. Soon he has paid caregivers for parts of the day; these include a cheery and admirable man named Bill. No longer able to eat, Richard has a feeding tube. Later he needs a hospital bed. Also a Head Mouse to work his computer. Also an elaborate wheelchair. With unresolved issues in the past, Richard and Karina are emotionally apart—even with feelings of hate and rage—even while she cares for him.  

Karina’s walking partner Elise, a teacher, helps her stay sane. Karina travels to New Orleans with Elise and her class and finds her interest in jazz reawakened. No longer able to breathe even with assistance, should Richard go on to mechanical ventilation that will require 24-hour care at enormous expense? A choice is made. Richard dies, with various resolutions before and after his death.  

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The Dark Flood Rises

Drabble, Margaret

Last Updated: Apr-09-2018
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Fran, an aging but energetic expert on elder housing, drives around the English countryside visiting facilities and also friends and family.  She, herself, is not at all ready to go gentle into the good night so many others are facing.  But everywhere she encounters reminders of mortality--her son's fiancee suddenly dies; an old friend is dying a lingering death of cancer; others in her circle of family and friends are facing their own or others' mortality in various ways, including natural disasters like earthquake and flood.  The episodic story takes place in England and in the Canary Islands; the large cast of characters are linked by intersecting stories and by their mortality, of which they, and the reader, are recurrently reminded.    

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Second Bloom

Krugovoy Silver, Anya

Last Updated: Dec-05-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

These poems are not a cancer chronicle, but the experience of living with cancer is threaded through them in a way that illustrates beautifully how awareness of illness may permeate daily life, but is foregrounded and backgrounded, reshaped and revisited in shifting ways as it takes its course.  They encompass moments in family life, moments in the hospital, moments of spiritual longing and awareness of loss.  Together they offer a record of accommodation, acclimation, and complex acceptance.

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Summary:

This powerful—even disturbing—book examines the state of Louisiana, a home of the Tea Party, multiple polluting industries (oil, chemicals), environmental degradation, bad health for all, including children, and politics and economics that favor corporations not local business. 

In Part One, “The Great Paradox,” sociologist Hochschild interviews locals, attends civic events, sits in cafes, and listens to stories. Bit by bit she understands that right-leaning people believe in Republican notions of less governmental regulation despite suffering from the ill effects of living in “red” states, even individual counties, that are the most polluted in the U.S. (pp. 79-80).  She calls this disparity “the great paradox.” Locals call a portion of the Mississippi between Baton Rouge and New Orleans “Cancer Alley” (p. 62), but there is no popular demand for control of pollution.

Part Two, “The Social Terrain” discusses history. Earlier, Louisiana had economies of fishing and farming in tune with the landscape. New industries, including Big Oil changed all that, with promises of jobs and wealth for all—neither of which occurred, because oil is largely mechanized, and wealth went to corporations, some headquartered in other countries. Further, there was not just pollution but also large sinkholes and the BP Horizon blow-out of 2010. Problems of on-going pollution were ignored by the Press, especially Fox news, and the “Pulpit” (evangelistic Christianity) took the longer view, urging continued human exploitation of nature, patience for ultimate rewards, and the hope that “the rapture” would ultimately save the most worthy Christians.

Part Three is “The Deep Story and the People in it.” Hochschild formulates an unspoken but motivating narrative of values in Louisiana. This metaphoric story represents deep feelings, including urges for a success that is always thwarted. In the story, there is a long line of white, Christian people, mostly male, often with limited education, waiting in line patiently to climb a hill. On the other side is a good job, wealth, security, and reward for the long waiting. Tragically, there are “line cutters,” symbolized by President Obama and other blacks who had various preferments, but also women, also immigrants, also refugees, even the brown pelican, the Louisiana state bird that needs clean water and fish to survive. The people in line feel betrayed. Where is progress toward the American Dream? Fair play? There is hatred toward the line cutters, and loyalty toward the similar people in line and the industries that will save them. Pollution is unfortunate but a necessary cost.

“Going National” is the fourth part. Hochschild reviews the plantations of the South that not only brutalized slaves but also caused poor whites to move to non-productive land, while the wealthy always improved their lot. People from the North were (and are) suspect, with policies of integration, abortion, gun control, etc. The North cut in line. People in Louisiana became “strangers in their own land” and therefore glad to support not only Governor Bobby Jindal (who “left the state in shambles,” p. 232) but also Trump who would “make American great again.” The “strangers” have gone national in the U.S. and even in some other countries. Hochschild drafts two short “letters,” one to the liberal left and the other to the Louisiana people. She suggests that the two polarized groups have more in common than they currently imagine.  



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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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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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