Summary:

The author, a scholar of autobiography and other forms of life writing, has expanded his scholarship to include what he calls "autopathography"--autobiographical narratives of illness and disability. This book is the result of an extensive study of such narratives. The works discussed are full-length and recently published--most were published in the 1980s and 1990s. Couser is particularly interested in issues of narrative authority, in how autopathography can be counterdiscursive to the prevailing biomedical narrative, and, especially, in how autopathography is counterdiscursive to the cultural stigmatization and marginalization that often accompany illness or disability ["insofar as autobiography is the literary expression of the self-determined life" (182)].

Since social/cultural counterdiscourse is of particular importance to Couser, he has focused on four specific illnesses/disabilities that have been associated with stigma: breast cancer, AIDS, paralysis, and deafness (182). His analysis of each condition is diachronic because he is searching for "the enrichment of the genre by successive writers who defy, complicate, or refine its conventions" (44). In addition, Couser asks, to what extent do authors "integrate illness narrative into a larger life narrative?" (14). He considers who narrates illness stories (biographer or autobiographer), how the stories are constructed, whether and how they achieve a "comic plot" and narrative closure.

The book's introduction (chapter 1, "Human Conditions--Illness, Disability, and Life Writing") provides a framework, relating what will follow to current issues in life writing, "identity politics," the culture of medicine, and illness experience, as well as to other work on illness narratives such as Anne Hunsaker Hawkins's Reconstructing Illness: Studies in Pathography and Arthur Frank's The Wounded Storyteller (annotated in this database).

Chapter 2, "Medical Discourse and Subjectivity," develops further the questions of narrative authority, representation, and resistance to a dominant medical or cultural narrative. Each subsequent section--breast cancer, AIDS, paralysis, deafness--is prefaced by an informative discussion of the cultural and narrative issues that are relevant to the particular condition; the subsequent analyses of individual texts further elaborate these themes.

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Vicki Forman's twins, Evan and Ellie, were born in 2000 at twenty-three weeks' gestation.  Fetuses could legally be aborted up to twenty-four weeks, but rules regulating treatment of extremely premature babies differed from one hospital to another.  Daughter of a doctor, Forman knew how slim were the chances of survival and how great the chances of serious disability if either of the twins did survive.  Grieving, but realistic, she and her husband asked for a DNR order, but learned that such orders did not strictly apply to the situation of children like their twins.  Instead, the line between  the parents' authority and the doctors' remained blurry and decision-making vexed not only by technical and emotional complications, but by conflicting legal guidelines as they made their way through many months of hospitalization and home treatment of their surviving son.

Ellie, the daughter, died at four days.  Evan lived for eight years with disabilities that completely reorganized family life, and required constant monitoring, management of equipment, and careful orchestration of parental relationship to their older child, Josie, and their special-needs child.  Much of the narrative covers the period of hospitalization during Evan's early months and the negotiations between parents, physicians, and other caregivers.  It also touches on Forman's own emotional responses to the strenuous learning curve required of a parent who suddenly finds herself with a special-needs child.

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In 1917, the poet Siegfried Sassoon protests the war in a London newspaper. He is saved from court martial by a military friend who argues successfully for his transfer to the Craiglockhart War Hospital where he comes under the care of psychiatrist, William Rivers. Sassoon is not sick, but he and his doctor both know that the line between sanity and insanity is blurred, especially for a homosexual and in a time of war.

The other patients, however, are gravely wounded in spirit if not body; sometimes they are tormented by uncomprehending parents and wives. Rivers’ efforts to unravel their nightmares, revulsions, mutism, stammering, paralysis, and anorexia begin to shake his own psychic strength and lead him to doubt the rationality--if not the possibility--of restoring them to service. He yearns for his pre-war research in nerve regeneration, the quixotic enterprise that serves as a metaphor for his clinical work.

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Returned from combat, Tayo, a mixed-blood Laguna, struggles to regain his health and mental equilibrium. Suffering from what his physicians term "battle fatigue" and the lingering effects of malaria, Tayo had become dysfunctional when he was ordered to shoot several of the enemy and sees in them the faces of his own ancestors.

Later, at the VA hospital, Tayo is told by white doctors to avoid "Indian medicine" and to remove himself as far as possible from his community and heritage. He is heavily sedated and experiences himself as "white smoke."

After he leaves the hospital and returns to his aunt and her family, Tayo's illness worsens (including chronic nausea and vomiting, hallucinations, and weeping). Finally his grandmother calls in a traditional healer who starts Tayo on an intense journey of inner healing (and encounters with other Native American healers) and reconnection with his painful but rich past.

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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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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:

This anthology of 38 autobiographical works by women with HIV/AIDS is edited by two women who are HIV positive. The introduction summarizes how the editors solicited writing or other expressions from HIV-positive women in order to publicly recognize the stories of women living with HIV/AIDS. Although most of the works are from Canada and the USA (including some from native populations), 12 other countries are also represented, including many African and European countries. Most of the pieces are prose, but poetry, art and photography are also included.

The pieces are very diverse and reflect multiple perspectives: activist, feminist, mother, teenager, drug addict, prostitute, lesbian, heterosexual, victim of abuse, etc. The stories are personal, introspective, direct and specific. Yet, throughout the anthology, universal themes of loneliness, isolation, hope, love and love lost recur.

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This outstanding anthology of poems, stories, excerpts and essays by African-American writers is prefaced by a poem ("Aunt Sue’s Stories" by Langston Hughes), a foreword, two essays and an introduction. The book is then divided into three sections: Section I, Illness and Health-Seeking Behavior; Section II, Aging; and Section III, Loss and Grief.

Each section begins with an introduction which clarifies the choice of the section’s theme and briefly describes each piece. At the conclusion of each section is a list of ten to fifteen questions which "are intended for personal reflection and group discussion." Brief autobiographical information for each of the thirty-one authors is presented in Appendix 1.

As Secundy notes in the introduction, a divide exists between the health care worker and patient, which is particularly prominent when color and economic status are different between them. Secundy, as an educator in the medical humanities, selected pieces that reveal "the significance of color and social distinctions" when African-Americans face illness or enter the health care system.

The selections chronicle struggle and survival, illness and loss, humiliation and pride, triumph and sorrow. These pieces speak to all of us, as Edmund Pellegrino states in his essay, "Ethnicity and Healing": "[p]aradoxically, as we learn more about the uniqueness of African-American culture, we are drawn closer to the common humanity we share with the subjects of these stories and poems."

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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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Summary:

This volume belongs in the category of cross-cultural studies of medicine and the humanities. Its main audience is scholars of nineteenth-century American psychiatry and culture. The author divides his study into six chapters, each with a topic, including the simultaneous emergence of nineteenth-century public debate about improving the treatment of insanity and the movement to abolish slavery; cultural activities in asylums directed toward humanizing the patients; bardolatry in British and American medical circles; discussions of Emerson, Hawthorne, Poe, and Melville in the context of their literary and personal relationship with madness; a chapter on captivity narratives and popular novels by former female and male patients; and an epilogue.

Unlike today, "In mid-nineteenth-century America, the condition of the mentally ill seemed to demand-and to a large degree received-national attention and the full creative energy of a group of dedicated reformers" (p. 2). Reformers linked the emancipation of slaves with curing the delusions of the insane. Slaves and the mentally ill had in common deprivation of their civil liberties; however, the difference was that white mental patients could be expected to grow up eventually, whereas black slaves would always remain children, and hence could not be trusted with the right to vote, own property, or sign contracts.Some causes of insanity were deemed to be the individual's reaction to the stress of modern life, too much freedom and choice, religious fervor, masturbation, or excessive study. In their aggressive attempts to remake patients into proper gentlemen and ladies, the new asylums promoted cultural activities such as reading selected texts, theater performances and writing.

Most asylums housed males and females in approximately equal numbers; cultural activities for females stressed piety, fashion, and domestic activity while men could comment on politics, the temperance movement, and opposition to women's rights. Reiss refers to the French model of using cultural activities in asylums, f.ex., Philippe Pinel's staging of plays to educate patients, and Marquis de Sade's theater performances at Charenton. He ends with a discussion of patient narratives that depict some horrific abuses tolerated in nineteenth-century asylums; the degree of these abuses is familiar to us from One Flew Over the Cuckoo's Nest (see film annotation).

The work includes a few illustrations, the most important being an engraving from a painting by Tony Robert-Fleury titled: Pinel Freeing the Insane (1876). (Yale University). Philippe Pinel (1745-1826) was a French pioneer in the humane treatment of mentally ill patients. A Director of Bicêtre Hospital in Paris, he is depicted as a heroic physician, liberating, mostly female, patients there. However, scholars have shown that only 10 of the 270 patients were chained, and that Pinel '"accepted the traditional use of chains to restrain the violent insane as a matter of course"' (p. 160). Reiss's point is that the revolutionary nature of Pinel's treatment of the insane has been exaggerated.

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