Showing 1 - 10 of 198 annotations tagged with the keyword "Institutionalization"

This Way Madness Lies

Jay, Mike

Last Updated: Oct-17-2017
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction — Secondary Category: Visual Arts / Visual Arts

Genre: History

Summary:

This Way Madness Lies was published in partnership with London’s Wellcome Collection for the exhibition “Bedlam: The Asylum and Beyond,” which ran from September 2016 - January 2017 and was curated by Mike Jay and Bárbara Rodriguez Muñoz. It is a book that was meant to accompany the exhibition, yet which, by virtue of the substantial text and reproductions, can stand alone.  

The book traces the history of treatment of the mentally ill by following the colorful story of Bethlem Royal Hospital from its antecedents in the Middle Ages up to the present.  Its sway over the public imagination evidenced by its appearance in everything from Jacobean Drama to “Sweeney Todd,” Bedlam has truly attained archetypal status.  An archetype, yet also a real functioning hospital.  Sections of the book entitled “Madhouse,” Lunatic Asylum,” and “Mental Hospital” chronicle the facilities designed respectively during the 17th/18th, 19th, and 20th centuries, and explain how they reflect changing notions of madness in each era. 
 

The first structure was visually grand but lacked a foundation, a metaphor for what was going on inside: “a façade of care concealing a black hole of neglect” (p. 39).  It became a tourist attraction along the lines of the zoo, with nothing preventing the public from gawking at and taunting the inmates.  While its replacement gave the impression of being more functional, conditions proved equally squalid.  On the other hand, 19th-century Europe and the United States saw asylum reforms, as well as the medicalization of madness as an “illness” and the ascent of psychiatry as a branch of medicine.  Finally, in 1930, the buildings still in use in Monks Orchard, a suburb of London, were constructed.


By contrast, we learn about treatments elsewhere, most notably Geel, Belgium.  There, for centuries, as an alternative to being warehoused in psychiatric hospitals, the mentally ill have been successfully boarding with townspeople. 
 

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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:
Redel-Traub, Gabriel

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In Dr. Elizabeth Ford’s Sometimes Amazing Things Happen, Ford recounts her time spent on the Bellevue Hospital Prison Ward. The memoir is as much about her own personal growth as it is about the daunting, yet crucial care she provides to one of the country’s most vulnerable populations, prison inmates from Riker’s Island. Dr. Ford goes from being a nervous intern on her first day working in the ward to a confident—if not emotionally drained—director of the forensic pathology service all the while trying to balance her family life as a wife and mother. Dr. Ford’s patient encounters with the inmates all center around one crucial thing: trust. In many of her conversations, Dr. Ford works tirelessly to convince her patients, many of whom had suffered abuse or neglect in their younger life, that she is on their team. This process is, more often than not, an uphill battle. Nonetheless, it is an endeavor we see Dr. Ford embark on repeatedly throughout the memoir. For as she says, “My job is to try to look past [what they’ve done] and ... to care for them, to be curious about them and to be non-judgmental. It is a daily struggle, but one that I have found over the years [to be] incredibly rewarding."

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Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: TV Program

Summary:

The Knick was inspired by the Knickerbocker Hospital, founded in Harlem in 1862 to serve the poor. In this 20-part TV series spread out over two seasons, the fictional Knick is somewhere in the lower half of Manhattan around 1900. The time covered during the series is not marked in any distinct way. The characters don’t age much, and although fashion and customs remain static during the series, the scope and significance of advancements that come into play were actually adopted over a longer time than the episodes cover.   

The series builds on some known history. The central character, the chief surgeon Dr. John Thackery, is modeled on a famous surgeon of the time, Dr. William Halsted, in both his surgical adventurism and in his drug addictions. The character Dr. Algernon Edwards, who is an African-American, Harvard-educated, and European-trained surgeon, is based in part on Dr. Louis T. Wright, who became the first African-American surgeon at Harlem Hospital during the first half of the 20th century.  

Storylines of human drama and folly run through the series. Among them are medical cases both ordinary and bizarre, heroic successes and catastrophic failures, loves won and lost, gilded lives and wretched existences, honor and corruption, racism and more racism. Within and around these storylines are the scientific, medical, and industrial advances of the period, as well as the social contexts that form fin de si
ècle hospital care and medical research in New York City.
 

Some of the industrial advances we see adopted by the hospital include electrification, telephone service, and electric-powered ambulances. We see that transitions to these new technologies are not without risks and catastrophes: patients and hospital staff are electrocuted, and when the ambulance batteries died -- a frequent occurrence-- many of the patients they carried died, too.

Medical advances integrated into various episodes include x-rays, electric-powered suction devices, and an inflatable balloon for intrauterine compression to stop bleeding. Thackery is a driven researcher taking on some of the big problems of the day, such as making blood transfusions safe, curing syphilis, and discovering the physiologic mechanisms of drug addiction. We see how he learns at the cost of his patients, or rather his subjects. We also glimpse movements directed at population health. For example, epidemiological methods are applied to find the source of a typhoid outbreak, which drew from the actual case of Mary Mallon (aka, Typhoid Mary). Shown juxtaposed to the advances epidemiology was then promising is the concurrent interest that was rising in eugenics and its broad application to control for unwanted groups. Research ethics and regulations were a long way off.


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Deafening

Itani, Frances

Last Updated: Jul-24-2016
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Born in 1894, Grania becomes deaf following scarlet fever at the age of two. Her mother never quite recovers from misplaced guilt over this outcome and is withdrawn. But Grania is well loved by the whole family, who run a hotel in a small town. Her older sister and their Irish-born grandmother see the child's intelligence and find ways to communicate with her by signs and words; they urge the parents to send her to a special school.By age nine, Grania is sent to the famous School for the Deaf in Belleville Ontario, founded by Alexander Graham Bell. Although the school is only a short distance from her home on the north shore of Lake Ontario, the child is not allowed to return for nine long months. At first she is overwhelmed with homesickness, but soon she finds kindred spirits among the other students and teachers and adapts to the life of the institution.

By 1915, her studies complete, Grania works at the school. There, she meets her future husband, Jim, a hearing man who is assistant to the town doctor. They marry, but only two weeks later, Jim leaves to serve as a stretcher bearer in the war in Europe. Fear and death haunt the people at home and abroad for years. Jim writes what little he is allowed of the horror and danger around him, always promising to return. Grania waits and writes too, slowly growing hopeless and angry, as devastating telegrams arrive one after the other.Her sister copes with the return of a grievously disfigured husband, wounded more in mind than in body. In late 1918, Grania falls ill in the influenza epidemic and is delirious for weeks. When she recovers, frail and bald, she learns of the loss of her beloved grandmother who died of the fever caught by nursing her. At the same moment she hears of the war's end and begins to believe again in hope.

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Annotated by:
Lerner, Barron

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

Perhaps no topic in the history of medicine has been explored as much as the lobotomy.  Psychiatrists, historians and journalists have weighed in on this controversial topic, and the procedure has been featured in a number of Hollywood films.

Yet there is nothing like a narrative of a specific lobotomy patient to draw us into the subject anew.  And that is why Kate Clifford Larson’s new book, Rosemary: The Forgotten Kennedy Daughter, is so compelling—even if we already know the sad outcome of Rosemary Kennedy’s life.

Originally devised in 1935 by the Portuguese neurologist Egas Moniz, the lobotomy involved drilling holes in the skull and using a blade to sever nerve fibers running from the frontal lobes to the rest of the brain.  Moniz believed that psychiatric symptoms were caused by longstanding faulty nerve connections.  Severing them, and allowing new connections to form, he postulated, would help treat patients with intractable mental illness, such as schizophrenia and its paranoid delusions.

America’s chief proponent of lobotomy was Washington, D.C. neurologist Walter J. Freeman who, working with neurosurgeon James W. Watts, reported in 1937 that 13 of 20 patients undergoing the operation had improved.  Freeman would later devise his own procedure, the transorbital lobotomy, in which he actually used a mallet to pound an ice pick through the patient’s eye socket into the brain, then moved the pick around blindly to cut the nerve fibers.

Among the first histories of lobotomy was psychologist Elliot S. Valenstein’s  Great and Desperate Cures (1986), which strongly criticized Freeman and his contemporaries as overzealous physicians who did far more harm than good, creating docile and apathetic individuals no longer capable of caring for themselves.  Physician-historian Joel Braslow’s Mental Ills and Bodily Cures (1997) argued convincingly that a main motivation for the popularity of lobotomies—roughly 40,000 would be performed in the United States by the 1960s—was to enable staff members to maintain order in crowded, understaffed institutions.   In Last Resort (1998), historian Jack D. Pressman made the provocative claim that lobotomy represented the best science of the day and that, at least in some cases, it allowed patients to return home with fewer psychiatric symptoms.

Rosemary Kennedy was born in 1918, the third of what would eventually be nine children of Joseph and Rose Kennedy.  Joe was a successful businessman and investor who later entered politics, first as chairman of the Securities and Exchange Commission from 1932 to 1935 and then as U.S. Ambassador to Britain from 1938 to 1940.  At an early age, it was clear that Rosemary was not as mentally sharp as her two older brothers, Joe Jr. and John.  Larson hypothesizes that Rosemary’s “intellectual disability” occurred at birth, when a nurse forcibly kept her in her mother’s womb—perhaps without adequate oxygenation—while waiting for the doctor to arrive.

It was Rosemary’s blessing and curse to be born into the high-powered and prominent Kennedy family.  Her parents left no stone unturned in trying to help their daughter, sending her to special schools and programs around the world.  But they simply could not tolerate her lack of improvement.  Rosemary was a terrible speller and writer, socially awkward and at times unruly.  Joe Sr., in particular, worried about the negative ramifications to his sons’ possible political careers if word got out about their “retarded” sister.

Reading about Rosemary’s first two decades, and knowing that her lobotomy is approaching, is truly heartbreaking.  Writing letters home from her various placements, she was so eager to please.  “I would do anything to make you happy,” she told her father in 1934 at the age of 16.  “I hate to Disppoint [sic] you in anyway.”

When the Kennedys first arrived in England in 1938, Rosemary, her mother Rose and her younger sister Kathleen were presented to the king and queen.  For once, the circumstances tilted in Rosemary’s favor.  The event was smashing.  Photographs show Rosemary, who had become a very attractive young woman, resplendent in a “picture dress of white tulle.”  She felt, she said, like Cinderella.

But when the family returned to the United States in 1940, with war approaching in Europe, the situation was no different than it had always been.  Plus, now in her early twenties, Rosemary’s moodiness and emotional outbursts were becoming more frequent.

Lobotomy had gotten a lot of press in 1941, particularly in a May article in the Saturday Evening Post that highlighted the work of Freeman and Watts.  And while this piece warned about the dangers of the procedure, it mostly praised its ability to make people with mental illness into “useful members of society.”  At some point, Joe Kennedy met with Freeman and decided that Rosemary should undergo the operation.  Larson does not unearth exactly how the decision was reached—or what Rosemary was told.  But it seems to mostly have been Joe’s doing.

The problem, of course, was that lobotomy was not meant for what Rosemary had—essentially a low IQ.  But Joseph Kennedy, in conjunction with her doctors, had convinced himself she had an “agitated depression,” and thus was a candidate.  That Freeman was a zealot for the operation, as is well documented in journalist Jack El-Hai’s The Lobotomist (2005), did not help.  Most tragically, when Rosemary underwent her lobotomy some time in November 1941, something went “horribly awry.”  Patients were kept awake during the procedure and asked to talk or sing to help guide the surgeon’s scalpel.  But in Rosemary’s case, when Watts made his final cut of brain tissue, she became incoherent.  “The operation,” Larson writes, “destroyed a crucial part of Rosemary’s brain and erased years of emotional, physical and intellectual development, leaving her completely incapable of taking care of herself.”

The rest of Rosemary discusses her life after the lobotomy until her death in 2005.  She spent most of these years at a Catholic residential institution in Wisconsin.  Most cruelly, family members rarely visited, trying to render invisible what had happened.  To the Kennedys’ credit, in later years they corrected this error and brought Rosemary for visits to Hyannis Post and other family outposts.  There are only a few photographs in the book from this later era, but they help to humanize the woman who suffered for so long.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Atul Gawande’s Being Mortal is both ambitious and synthetic, qualities that well suit his difficult subject, death.  In Western culture, there are taboos against death because it fits neither into post-Enlightenment notions of progress and perfection nor into medical notions of control, even domination of human biology. A surgeon and an investigator, Gawande draws on his patients, his family, and travels to various hospitals and other caregiving places in order to confront death and see how approaches such as hospice and palliative care can improve our understanding, acceptance, and preparation for death.

Gawande has harsh words for contemporary medicine, the supposed caregiver for the dying and their families.  Relying heavily on technique and industrial models, it ignores the deep needs of the dying and provides, instead, versions of “warehoused oblivion” (p. 188), for example long, futile stays in ICUs.

As opposed to traditional societies like India, Westerners prize the independence of individuals, a status that is, of course, never permanent. In the chapter “Things Fall Apart,” Gawande describes how longer lives are now the norm but they include chronic illnesses and inevitable decline in vitality.  Our deaths are now routinely in hospitals, not at home, and often extended—sometimes brutally—by technical support and unwillingness of doctors and families to stop aggressive treatment.       
       
Also, sadly, there are fewer and fewer geriatricians at a time when there are more and more elderly.  A good geriatrician takes a long time with each patient, is not well paid, nor does s/he do income-generating procedures. Worse yet, some training programs are being discontinued.  

Gawande illustrates his ideas with case studies of patients and describes, from time to time in the book, the elderly journeys of his grandmother-in-law and his own father.  These passages make vivid the abstract ideas of the book. But it’s not just elderly patients who face death: health calamities can come to anyone, for example, a 34-year-old pregnant woman found to have a serious cancer. Various treatments are tried without success, but family and doctors act out “a modern tragedy replayed millions of times over” (p. 183) of a medically protracted death. Finally her mother calls a halt to treatment.
               
Family members often bear a heavy load in caring for a sick elder, but many nursing homes are often worse, designed for control, not support of the patients. 

The chapter “A Better Life” describes the first in a series of places that offer much improved settings for the elderly, with birds, animals, gardens, and, in general, richer lives that have a sense of purpose.  Gawande describes hospice care, palliative care, and advanced directives (including Do Not Resuscitate orders) as improvements needed to break the norms of “treat at all costs.” The old roles of Dr. Knows-Best and Dr. Informative need to give way to physicians and others who talk with patients and families about their values, their wishes for the last days, and their preparations for death. In short, aggressive treatment should no longer be the “default setting” for hospital care.     
        
The book ends with a dozen moving pages about the death of Gawande’s father. The “hard conversations” have clarified his wishes, and hospice care has provided “good enough” days.  Pain control has done well. Then, finally, “No more breaths came.” The family travels to India to spread his ashes on the Ganges. 

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Lily Daw and the Three Ladies

Welty, Eudora

Last Updated: Mar-02-2015
Annotated by:
Donley, Carol

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Lily Daw is a mentally retarded young woman who lives by herself but is watched over by the women in the small town. Since Lily has become sexually mature, the women decide she really does not know how to take care of herself, so they write to get her accepted in an institution for the mentally retarded.

When they visit Lily, they discover that she has been out on a date the previous night with the xylophone player from a traveling show. Lilly announces she is going to get married. The women are shocked and worried, but Lily seems quite happy. This wry story ends with Lily going to the Justice of the Peace with the xylophone player who intends to give her a better life than she would have had in the institution.

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Summary:

Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).

By compiling this useful selection of well known and less familiar stories and poems, Levine increases the visibility of the experience of familial caregiving among works of literature about medicine. While illness literature is typically classified by disease or disability, Levine focuses instead on the relationships between caregivers and those being cared for. Her collection organizes the literature into five parts: Children of Aging Parents; Husbands and Wives; Parents and Sick Children; Relatives, Lovers, and Friends; and Paid Caregivers who assist families. The literature in each section tends nonetheless to represent particular conditions: dementias, including Alzheimer's disease, cancer, and frailty in the first two sections; childhood cancer, hyperactivity, and mental illness in the third; AIDS in the fourth. 

Probably the most familiar and powerful works include Rick Moody's "Whosoever: The Language of Mothers and Sons," Ethan Canin's "We Are Nighttime Travelers," Alice Munro's "The Bear Came over the Mountain" (the source for the film "Away from Her"), Lorrie Moore's "People Like That Are the Only People Here," and several poems: Mark Doty's "Atlantis" and selections by Donald Hall, Jane Kenyon, James Dickey, and Raymond Carver.

These and the less familiar works offer disparate responses from both caregivers and those they care for. The narrator of Tereze Gluck's "Oceanic Hotel, Nice" thinks "what a bad person I was to not even want to touch his feet. . . it made me shudder" (220). The wife in Ann Harleman's "Thoreau's Laundry" cannot place her husband with Multiple Sclerosis in a nursing home because "his presence, however diminished, was as necessary to her as breathing" (116). The caregiver in "Starter" by Amy Hanridge "didn't want to be the person people feel bad about" (180).  Several stories explore the limits of obligation. As is often the case, the son in Eugenia Collier's "The Caregiver" is sick himself, failing to schedule his own doctor's appointments and dying before his mother. Marjorie Kemper's witty, exuberant "God's Goodness" plays out an unexpected relationship between a dying teenage boy and his Chinese immigrant aide, while his parents remain in the background.

Carol Levine's brief introduction to the collection explains that she excluded excerpts from memoirs and selected only very recent literature, almost all from the past three decades. A Resources section at the end includes some introductory medical humanities resources and practical resources for caregivers.

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On Bittersweet Place

Wineberg, Ronna

Last Updated: Nov-18-2014
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This story centers on Lena, an immigrant teen from Ukraine, whose entire family has been traumatized and uprooted by family deaths during a violent pogrom.  Relocated to Chicago, in a tiny apartment on Bittersweet Place, the family struggles to survive in the years prior to World War I. Wineberg’s tale of disrupted life and resettlement is weighted by formidable issues that stretch beyond the ordinary range of family experiences. 

Lena, the intelligent, highly observant and resilient adolescent, narrates an unvarnished tale of survival for the extended family clustered together in this strange new world, but especially for herself.  While the family’s economic and financial circumstances are difficult, her own life is made worse by an unkind teacher, mean-spirited classmates, and hormonal impulses.  Her uncle touches her inappropriately, a favorite uncle goes mad, a cousin dies, and her mother, who is unfamiliar with the new world setting and mores, drives her crazy. 

Nevertheless, Lena is a clear-eyed survivor exhibiting a surprising toughness of character and determination. For example, her introduction to sex is far more direct than might occur with most girls of that time.  In addition, when her teacher fails cruelly to support her artistic talents, she shows amazing defiance.   When she discovers that her father has a beautiful female friend, undoubtedly a lover, her consideration of this circumstance does not render the crushing blow that might be expected.  In retrospect she is more adult, more mature than most young women might be in each of these situations.  She is a remarkable young woman with a spirited edge.

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