Showing 1 - 10 of 202 annotations tagged with the keyword "Institutionalization"

One Crimson Thread

O’Siadhail, Micheal

Last Updated: Jan-22-2018
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

This collection of 150 sonnets takes us through the journey from the writer’s wife’s diagnosis with Parkinson’s, eventually complicated by dementia and overmedication, to her death and his early days of grieving.  Married for over 40 years and close companions, their successive separations deal new blows as they happen: She goes into skilled nursing care, gets lost in delusions, and becomes more frail and erratic, finally succumbs after a fall and a short period in a coma.  The writer draws on biblical metaphors and threads memories of their earlier life together in fleeting images so that the reader is left to infer from glimpses a rich and happy marriage that, he reflects, prepared them—but not enough—for this going.  

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Hag-seed

Atwood, Margaret

Last Updated: Jan-22-2018
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Haunted by grief over the loss of his young daughter, Felix is a gifted director at a theatre festival. He plans an inspired interpretation of The Tempest, but is unfairly ousted from his beloved position by a jealous and inadequate rival.

As his fortunes dwindle, he accepts a position to promote literacy in a local prison—and hits upon the idea of using his newfound but incarcerated protégés to mount his long-planned Tempest. The project encounters financial difficulties that begin to seem insurmountable as his hostile rival assumes an influential government position.
 

The result exceeds all expectations, helps to heal his grief, and with its unorthodox staging, provides a delicious revenge.

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Patiently Waiting For…

Nisker, Jeffrey

Last Updated: Jan-17-2018
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

An artist, Ruth, lives with quadriplegia and manages to drive (and dance) with a special wheelchair that she controls with her chin. She also enjoys terrorizing doctors in the hospital corridors, where she is seen on a regular basis because of frequent bouts of infected bedsores. She has a new computer and is “patiently waiting for” a biomedical engineer to set it up to manage, like her chair, with her chin. She wants to write, to draw, to create. But the wait list is long, technicians scarce, and every candidate deserving.

On one of her admissions, Ruth meets the physician-narrator who is appalled by a medical resident’s lack of empathy in relating her case as if she were not present. Distressed by the encounter, the doctor is all the more disturbed when he notices that Ruth’s birth date is the same as his own.

He tries to make it up to her by withdrawing from her care in order to be her “friend,” one who tries to understand and will defend her strong desire to live despite her disability. Driven by curiosity about her past, her sharp wit, and how she faces each day, the doctor never quite achieves his goal and constantly feels guilty for letting her down as an advocate and a friend, and possibly also for being able-bodied himself.  He never visited her in her group home, and when she comes to hospital in florid sepsis, he is unable to prevent his colleagues from letting nature take its course. His own bout with severe illness, possibly MS—more likely a stroke--resonates with Ruth’s plight. Long after her death, he can imagine the acid remarks that she would make about his foibles.

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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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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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