Summary:

Diagnosed in 1985 with myalgic encephalomyelitis/chronic fatigue syndrome, Susan Wendell's reflections address her struggle first with illness and then with the lasting "social and psycho-ethical" conflicts illness and disability generate in contemporary Western culture. Her specific focus on feminist theory comes from her increasing awareness that "knowledge people with disabilities have about living with bodily suffering and limitation and how their cultures treat rejected aspects of bodily life . . . did not inform theorizing about the body by non-disabled feminists and that feminist theory was consequently both incomplete and skewed toward healthy, non-disabled experience"(p.5).

A chapter on "Who is Disabled?" engages current definitions of disability, who produces them, for what purposes, and to what effect. This chapter addresses the cases of illness and aging and explores the political and other values of the category, "people with disabilities." Other chapters discuss the social construction of disability, disability and illness as stigmatized states that might be re-envisioned as "difference," the enculturation of myths about bodily control and independence, medical authority's inflection of embodiment, the importance of disability perspectives to feminist ethics, and perspectives on transcending the body.

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This scholarly study examines "what it meant to ’talk of diseases’ in the second half of the nineteenth century" (2) and how discourses of health and illness were a vehicle for exploring individual and social identities, including gendered, racialized, and national identities. Narratives of physical illness are not simply artifacts of Victorian medical culture, Vrettos argues, but offer examples of the pervasive "master narratives" that shaped Victorian middle-class culture.

Individual chapters focus on the ill female body as an expressive text with variable legibility (and on nurses as privileged readers of ill bodies); "nervous illness" and the role of narrative in reconstructing the self; "neuromimesis" or neurotic imitation of disease; and the "politics of fitness and its relation to imperialist ideology." Vrettos discusses fictional works by Louisa May Alcott, (Hospital Sketches; see this database) Charlotte Bronte, George Eliot (Middlemarch; see this database), H. Rider Haggard, Henry James, Bram Stoker, and Harriet Beecher Stowe.

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Subtitled "Tuberculosis and the Social Experience of Illness in American History," the book chronicles the medical and societal treatment of tuberculosis in the United States from the perspective of individuals who suffered from the disease. The author includes illness narratives derived from letters and diaries of the afflicted; her analysis spans the period in American history from the nineteenth through the first half of the twentieth century.

The book is divided into four sections. Part I, "The Invalid Experience: New England Men, 1810-60" and Part II, "The Female Invalid: The Narrative of Deborah Vinal Fiske, 1806-44" reveal an interesting contrast in the medical/societal treatment of tubercular men and women, and the resulting differences in their lives as "consumptives." Whereas men were expected to seek a cure by embarking on sea voyages and other travel, women remained at home and sought to control the disease by adjustments in domestic life. For men this meant major disruption and even change of career along with a sometimes exhilarating change of scene; for women it meant relentless anxiety and elaborate coping strategies.

Part III, "Health Seekers in the West, 1840-90" describes the role of cure-seekers in the westward migration and demonstrates how the culture of the time, an optimistic faith in nature and in the economic promise of the newly settled western territories, was reflected in the treatment regimen for tuberculosis. Interestingly, much of the promotional effort to bring "consumptives" west was initiated by physicians who were themselves tubercular.

The final section, "Becoming a Patient, 1882-1940," moves into the modern era with the discovery of the tubercle bacillus, public health measures, and the illness narratives of people who were confined in sanatoriums. Rothman points out that this period marked a transition away from the patient’s ability to understand and determine his/her treatment to one more like the current one in which the medical establishment is the authoritarian "expert."

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Frank argues that the modernist conception of illness is a form of "colonization" in that the ill person hands over his or her body (and life narrative) to biomedical expertise. In a post-modern conception, however, the ill person reclaims the authority and ability to tell his or her own story, and to construct a new life narrative from the "narrative wreckage" of serious illness or injury.

Frank identifies four dimensions by which one's relationship to the body may be understood: control versus contingency, self-versus other-relatedness, dissociation versus association with the body, and desire versus lack of desire. Frank presents a diagram (p. 30) in which he sketches four "ideal typical bodies" that arise from various combinations of control-contingency, etc. These include (a) the disciplined body, (b) the mirroring body, (c) the dominating body, and (d) the communicative body. While the first three lead to problems in constructing a satisfactory illness narrative, the last is an "idealized type" in that it is not only descriptive, but also "provides an ethical ideal for bodies." (p.48)

Frank then categorizes patients' illness narratives into three main themes: (a) restitution narratives, in which the plot involves returning to one's previous state of health; (b) chaos narratives, in which all life events are contingent and no one is in control; and (c) quest narratives, in which illness is seen as a spiritual journey. This understanding serves as a starting point for a narrative ethic of illness.

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The author introduces his book by saying, "I should like to write a book to help people cope with inexplicable pain and suffering." He is "profoundly suspicious" of the genre of books that attempt to explain why a good and all-powerful God allows us "to undergo suffering for seemingly no reason." Thus, he distinguishes his investigation from theodicy in the traditional sense (an explanation of why God allows suffering); rather, Hauerwas wishes to explore why human beings believe it is so important for us to ask why God allows suffering.

The narrative backbone of this book is provided by fictional and non-fictional texts about the suffering and death of children. The prime fictional example is The Blood of the Lamb, Peter De Vries's 1961 novel about an 11-year old girl who dies of leukemia and the anguish of her father. This fiction, however, was based on De Vries's personal experience. [See annotation in this database.] Hauerwas also explores several non-fictional accounts of dying children, especially Where Is God When a Child Suffers? by Penny Giesbrecht, The Private World of Dying Children by Myra Bluebond-Langner, and Lament for a Son by Nicholas Wolterstorff.

Traditionally, suffering and death were interpreted in the context of religious meaning (e.g. part of God's plan, punishment for sin, etc.) Yet, the fact that God allows evil--in the form of suffering--to occur poses a problem, if God is both all compassionate and all-powerful. Modern medicine dispenses with the meaning of illness--disease and suffering are pointless and should be eliminated, if possible. Likewise, in modern society our preferred death is sudden like a bolt of lightning (no suffering), while in the past people looked for a "good death," which might involved a period of suffering during which the person could become reconciled to family, friends, and God.

Nonetheless, even if we adopt a scientific point of view, as human beings we can't help attributing narrative meaning to our illnesses. Thus, when adults suffer, we place their suffering in the context of a life story that may include a number of layers and dimensions. We "dilute" the suffering in the context of story. However, childhood suffering and death appear to truncate narratives, sometimes even to abolish them. Therefore, the suffering seems particularly meaningless, and it feels more "evil" and more devastating.

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Shay, a psychiatrist who specializes in post-traumatic stress disorder (PTSD), juxtaposes the narrated memories of his patients who are Vietnam veterans to the story of Achilles in Homer's Iliad. He finds that the roots of their illness, like that of the ancient hero, lie in betrayal of duty by senior officers who failed to do "what's right," in the repression of grief, and in the social limitations imposed on expressions of love between men.

These stressors lead to guilt, wrongful substitution, and dangerous rage, called the "berserk" state. The mental pathology is fostered by an equally wrongful failure to honor the enemy; return to "normal" is never possible. The book concludes medically with recommendations for prevention.

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Dr. Hojat's comprehensive survey of empathy in medicine is subtitled "Antecedents, Developments, Measurement, and Outcomes." He begins by carefully distinguishing empathy from related concepts or qualities, like sympathy and compassion; and by clarifying the cognitive, as opposed to affective, nature of empathy. Essentially, empathy creates our sense of connectedness with other human beings and, to a limited extent, with some animals. After sketching its evolutionaly and neurological substrates, Hojat then summarizes research in measuring empathy, with particular emphasis on empathy in the clinical setting.

The Jefferson Scale of Physician Empathy (JSPE), developed by Hojat, is among the most useful and well-validated self-report survey instruments. This scale is also available in a form to be completed by patients, the Jefferson Scale of Patient's Perception of Physician Empathy (JSPPPE). Hojat presents the results of numerous studies using the JSPE and other instruments to asses medical student and physician empathy. For example, some evidence suggests that female physicians are more empathic than male physicians, that students with higher empathy scores are more likely to engage in prosocial behavior, and that primary care attracts medical students who score higher in empathy. There is also a considerable body of evidence showing that empathic engagement with patients by physicians leads to better health outcomes.

The chapter on enhancement of empathy is especially important for medical education. Hojat reviews various methods for enhancing clinical empathy, including, for example, communication skills training, systematic "shadowing," teaching narrative skills, and study of literature and the arts. He concludes "research shows that empathy can be enhanced effectively by dedicated educational programs," although such programs face many obstacles in the current context of medical education.

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Doctors in Fiction. Lessons from Literature is an interesting collection of short essays about fictional physicians by Borys Surawicz and Beverly Jacobson. The authors, one a cardiologist (Surawicz) and the other a freelance writer, discuss more than 30 physicians drawn from novels, short stories, and drama, and representing a fictional time frame from the late 12^th to the early 21^st century.  In each chapter the authors present one or more of these physicians in context, briefly introducing the work, the writer, and a précis of social context.

Dr. Andrew Manson in A. J. Cronin's The Citadel and Dr. Martin Arrowsmith in Sinclair Lewis's Arrowsmith appear in the section entitled "Idealistic Doctors." Other examples of "good" physicians include Tertius Lydgate (Middlemarch), Bernard Rieux (The Plague), and Thomas Stockman (An Enemy of the People).  At the other end of the spectrum are failures and burnt-out cases, like alcoholic psychiatrist Dick Diver in F. Scott Fitzgerald's Tender Is the Night and the debauched abortionist Dr. Harry Wilbourne in Faulkner's The Wild Palms.   

Some of the best examples of fallen doctors appear in Anton Chekhov's stories and plays. Chekhov, a practicing physician himself, well understood the triumphs and tragedies of the medical experience. Surawicz and Jacobson single out Dr. Andrei Ragin, the dispirited medical director of Chekhov's Ward 6 for special attention. They also touch briefly on Dymov, an idealistic physician who dies as a result of diphtheria he contracted from a patient (The Grasshopper); Korolyov, a young doctor who develops an empathic bond with a woman who suffers from chronic anxiety ("A Doctor's Visit"); Startsev, a practitioner who grows to love money more than his patients' welfare("Ionych"); and Astrov, the dedicated proto-environmentalist physician in Uncle Vanya.

Two of the most striking figures in Doctors in Fiction arise from contemporary popular novels, although their fictional lives take place in an earlier time. The first is Dr. Adelia Aguilar, the protagonist of several mystery novels by Ariana Franklin. Aguilar is a graduate of the University of Salerno and serves as a forensic consultant to King Henry II of England in the 1170s. The other is Dr. Stephen Maturin, well known to millions of readers as the particular friend of Captain Jack Aubrey in  Patrick O'Brian's series of novels about the British navy during the Napoleonic Wars. Maturin is not only a famous physician and naturalist, but also a British undercover intelligence agent.

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Ott opens her treatment of the cultural, social and economic evolution of tuberculosis in the U.S in the mid-nineteenth century, although she refers back to antecedent historical events. The study follows how the evolving principles of bacteriology were applied to a syndrome the medical world did not recognize as having a single etiology. Tuberculosis did not fit the epidemiologic patterns of epidemic diseases as recognized by public health specialists.

Ott focuses heavily on the economics of the illness, as well as on its changing social status. Her final chapter examines the contemporary meaning of the disease as it once again is heralded as a public health problem in the U.S.

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In four parts this book uses a wide variety of images--caricatures in newspapers, comic books, advertisements, and photojournalism of Life magazine--to explore attitudes to physicians and medical progress in the mass media from the late nineteenth century to the mid-twentieth century. Each section centers on a specific type of image and the analysis addresses change in perception of doctors and their achievements by privileging crucial moments of newsworthy events and discoveries.

Early in this history, the media portrayed doctors as frock-coat wearing fops.  Medical metaphors used in a political context proclaimed these attitudes well. The story of four little boys, bitten by a dog in 1885 and sent to Pasteur in Paris for the newly invented rabies vaccination, is used as a pivot point for a transition in perceptions of medicine: from a clumsy, suspicious craft to a useful, progressive science.

The third section is devoted to the public fascination with the history of medicine in the period from 1920 to 1950, Films, newspaper articles, and comic books chart the insatiable taste for scientific success and medical progress. The last section studies images of progress in Life and other magazines through a meticulous analysis of health-related articles. In this section, Hansen shows how the media participated in educating the public to a definition of science that enjoyed an enthusiastically optimistic spin.

An appendix lists American radio dramas about medical history from 1935 to 1953. A wealth of sources are documented in the notes and the whole is completed with an intelligent index.

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