Summary:

This thought-provoking book is a collection of readings which the editors have found to be particularly useful for a course they teach, "What’s Normal?" It is their intent to facilitate consideration of how the world is experienced by those who are socially marginalized because of their physical appearance. The title of the anthology derives from an article written by the literary critic, Leslie Fiedler, and reproduced as the lead-off essay. Fiedler argues that the propensity of cultures throughout history to define the normal and to make political decisions about physical "abnormality" has reached a point where the rich will perpetuate the cult of normalcy (by paying for medical treatments that ensure it) while "the poor . . . will be our sole remaining Freaks."

The anthology is divided into several sections: Part I contains nonfiction articles, essays, and excerpts from books. Part II reproduces fiction, poetry, and drama and is further subdivided into "Abnormal Weight and Eating Disorders"; "Abnormal Height-Dwarfism"; and "Deformity and Disability." Many of the pieces have been annotated individually for this database (e.g. Fat by Raymond Carver, annotated by Carol Donley and also by Felice Aull and Irene Chen; Skanks by Rennie Sparks; The Fat Girl by Andre Dubus; Weight Bearing by Patricia Goedicke; Dwarf House by Ann Beattie; The Song the Dwarf Sings by Rainer Maria Rilke; The Dwarf by Ray Bradbury; The President by Donald Barthelme; The Birthmark by Nathaniel Hawthorne; The Elephant Man by Bernard Pomerance and others).

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This anthology culls 1,500 excerpts from approximately 600 works of literature primarily written in the past two centuries and representing all major genres--the novel, drama, poetry, and essay. These brief selections highlight how literature portrays the medical profession and also provide ample evidence of many recurrent themes about the doctor-patient relationship and the personal lives of physicians present in the pages of fiction.

The book is organized into eleven chapters devoted to the following subjects: the doctor's fee, time, bedside manner, the medical history and physical examination, communication and truth, treatment, detachment, resentment of the medical profession, hospital rounds, social status, and the doctor in court. Many well-known authors including Anton P. Chekhov, Sir Arthur Conan Doyle, Ernest Hemingway, Thomas Mann, W. (William) Somerset Maugham, Leo Tolstoy, Tennessee Williams, and William Carlos Williams are featured in this anthology but less notable writers are also introduced. A twenty-three-page bibliography of primary and secondary sources is a useful element of the book.

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Bomgard, a young doctor recently transferred from a rural area to a small town hospital, receives an urgent message from Polyakov, the doctor who replaced him. Polyakov has become ill; he needs medical help. Before Bomgard can respond, however, Polyakov arrives at the hospital, dying of a self-inflicted wound. In his last moments, he gives Bomgard a notebook, on which is recorded the story of Polyakov's addiction to morphine.

Polyakov first took morphine to relieve an abdominal pain. He found that it also relieved his despair over the loss of his lover, an opera singer in Moscow. Morphine relieved his loneliness and improved his work. He gradually increased the dose until he became hopelessly dependent on the substance. He failed in his attempts to break the habit at a clinic in Moscow. Eventually there is nothing in life but the drug and Polyakov suicides.

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Dr. Thomas Graboys is an eminent Boston cardiologist who developed Parkinson's disease in his late 50s. Shortly after his wife died in 1998, Graboys noticed unusual fatigue and mental sluggishness. He attributed these symptoms to grief, but they continued and he later experienced episodes of stumbling, falling, and syncope. During 2003 Graboys confided to his diary that it was "increasingly difficult to express concepts." ( p. 30) He also noticed tremor, problems with dictation, and frequent loss of his train of thought, symptoms "typical of Parkinson's." (p. 24)

While Graboys recorded these concerns in his diary, outwardly he denied that anything was wrong, even to family and close friends.  In fact, his denial continued until the day in 2003 when a neurologist friend accosted him in the parking lot and pointedly asked, "Tom, who is taking care of your Parkinson's?" (p. 27) Dr. Graboys faced an even more difficult challenge in 2004 when he developed the vivid, violent dreams and memory lapses that led to a diagnosis of Lewy body dementia, a form of progressive dementia sometimes associated with Parkinson's disease. With the cat out of the bag at last, the author finally began to confront the issue of professional impairment. In mid-2005 Graboys's colleagues seized the initiative and told him that "it was the unanimous opinion of my colleagues that I was no longer fit to practice medicine." (p. 36)

Writing now with the assistance of journalist Peter Zheutlin, Graboys reviews these events with unblinking honesty. He confronts his anger and denial, but also reveals the thoughtful, generous and passionate side of his character. "What will become of me?' This is the question that now lies at the center of Dr. Graboys' personal world. He knows that his loss of mental and physical control will worsen. With almost superhuman effort and his family's strong support, the author has been able to adapt to his limitations and maintain a sense of meaning in his life. Will that continue? In a chapter entitled "End Game," he addresses the question of suicide. Reflecting on his condition, especially the dementia, Graboys asks, "Will I lose myself, my very essence, to this disease?" (p. 161)

In the last chapter, Graboys acknowledges that he has no "simple prescription that will help you or someone you love live a life beyond illness, or tell you how to tap the hope that lives within." (p. 181)  However, he then goes on to make several suggestions of the advice-manual variety: "Use your family and friends as motivation to live life with as much grace as you can muster." "Find a safe place... to unburden yourself of anger." "Acceptance is key to defusing anger, stress, and self-pity."  "Use your faith in God, if you believe in God."  (pp. 181-182)

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This play was suggested by the book, Bad Blood: The Tuskegee Syphilis Experiment, by James H. Jones, and by a number of primary sources. It brings to the stage in a fictional way the story of the interaction between an African-American public health nurse assigned to the Tuskegee Syphilis Study and four of the African-American participants in the study. Two physicians, one who is head of the Tuskegee Memorial Hospital, and one from the U.S. Public Health Service, are less important characters, but provide the evidence of the government's complicity in the study.

The physical setting of the play is the Possom Hollow Schoolhouse, and there are changing "testimony areas" where a 1972 Senate subcommittee investigation of the Tuskegee study is taking place. The theatrical setting is, however, the conscience and memory of Eunice Evers, the nurse, as she is pulled into and out of the action to give testimony to the audience.

Act One takes place in 1932, and allows the audience to become acquainted with the four African-American men who, along with several hundred others, become part of the study after their blood has been found to test positive for syphilis. The treatment of the infected men with mercury and arsenic comes to an end after six months because of a lack of funds, and a decision is made by the Public Health Service to continue a study of untreated syphilis in these men. A fifty-dollar life insurance policy is given to each man as an inducement to remain in the study.

Act Two carries the lives of the characters through the introduction of Penicillin as treatment for syphilis in 1946--a treatment from which the Tuskegee study patients were excluded--and on to 1972, when the Senate committee hearings were held. The Epilogue is about the big guilts of the government and the little guilts experienced by Miss Evers as she questions her nursing ideals.

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A son’s story of his father’s illness, treatment, and resultant destruction by the "psychic-driving" experiments of Dr. Ewen Cameron at Montreal’s Allan Memorial Institute in the 1950’s. The effect of the father’s illness on the family is recounted, as is the son’s gradual realization, only when he is himself about to become a psychiatrist, that something abnormal must have taken place during those long hospitalizations. Weinstein tells other patient stories in some detail as he recounts the legal fight for compensation awarded finally in October, 1988.

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Summary:

The aged, black nurse, Eunice Evers (Alfre Woodward), testifies before the 1973 Senate hearings into the Tuskegee study. Through a series of lengthy flashbacks, her testimony evokes the 1932 origin and four-decade course of a research experiment to study but not treat syphilis in the black men of Macon County, Alabama. The federally funded project began with the intent to treat the men, but when funds dried up, the project coordinators decided simply to document the course of the disease to discover if blacks responded to syphilis as did whites.

The nurse was deeply attached to the patients and they, to her; a Dixie band named itself "Miss Evers' Boys." Evers and her doctor supervisor (Joe Morton) hoped that treatment would be restored after a few months, but ten years pass. With the advent of penicillin in 1942, her intelligent lover Caleb (Laurence Fishburne) rebelled, took penicillin, and enlisted in the army; the project, however, continues.

Evers is disbelieving when she realizes that the men will not be treated, but she cannot abandon them. Against the advice of her father, she refuses to leave Alabama with Caleb and continues to participate in the lie that encourages the Tuskegee men to remain untreated into the late 1960s. One by one Miss Evers' Boys die or are disabled by the disease.

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Summary:

Worlds Apart is a set of four documentary videos designed to stimulate thought and discussion about the effects of culture on communication and medical decision-making. Each video encapsulates the story of a real patient and his or her interactions with physicians and family.

The four videos are: (1) Kochi Story--an Afghan man, diagnosed with stomach cancer, decides about chemotherapy amidst miscommunication due to translation issues and religious convictions; (2) Chitsena Story--the mother of a four-year-old girl from Laos is caught between physicians who tell her that her daughter needs surgery to correct an atrial septal defect, and her mother who upholds the traditional Khmu beliefs that scars, including surgical scars, are injurious to a person in future lives; (3) Phillips Story--an African-American man on dialysis discusses the prejudices against black people in the health care system, particularly the decreased chances for receiving a renal transplant; (4) Mercado Story--a 60-year-old Puerto Rican woman who lives in Hell's Kitchen, New York City, explains the complex social situation which affects her ability to take care of her chronic health problems, such as diabetes and hypertension.

The films depict the patients and families in various settings--in doctors' offices, at other health care facilities, at home or work, during religious ceremonies. Phillips Story is different in that only the patient speaks during the film--in the other three stories we hear family members, translators, and physicians. The pitfalls of translation by a family member or friend are discussed, as well as the need for the physician to elicit information from patients about the social contexts that may affect their health and decisions.

For example, Mr. Kochi's religious beliefs contravene the use of continuous infusion chemotherapy, but not other regimens--this distinction is not elucidated for many months. Hence cultural competency in health care requires that the provider not assume reasons for patients' behaviors and decisions but rather emphasizes communication to understand the particulars of the situation.

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The novel follows, in a roughly temporal manner with flashbacks, the evolution of the illness of a child afflicted with promyelocytic leukemia and her family's attempt to save her. At core is the issue of conceiving a child with the hope that she (Anna) will be able to provide what her older, ill sister (Kate) needs to survive. The initial need is met by cord blood transfusion, however, as time passes, Kate relapses, and technology makes new demands on the obligatory donor.

Eventually Anna, at age 13, requests emancipation from the health care control of her beleaguered parents. The reader is introduced to the dilemma as the adolescent donor seeks legal help. Over the course of the novel, which is structured with a revolving first person viewpoint, the reader becomes acquainted with the personal perspectives of many characters, but with no warning of the ultimate outcome of the family drama.

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This is the wrenching history of the development, evolution, and eventual obsolescence of the leper colony established in 1866 on the isolated and only sometimes accessible peninsula on the Hawaiian island of Molokai--and the lives of the people who were exiled there to die over a period of more than 100 years. The tale opens with the declaration by the Board of Health that all persons proven (or strongly suggested) to be afflicted with leprosy be exiled immediately to the site on Molokai.

The author dramatically describes the selection and separation of the exiles from their families and the tortuous and sometimes deadly sea voyage to their primitive new homeland. Mixed with the public policy and the individuals who made and implemented it, are the descriptions of the hospital in Honolulu where diagnoses and dispositions were rendered, as well as the poignant personal stories of the "detainees." The reader follows the colony from the arrival of its first 13 patients in 1866, through its peak population of 1,144, to its residual 28 in 2003.

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