Couser, long interested in autobiography, explores the ethics of representation in biographical writing, and in particular, the ethics of representing vulnerable subjects--for example, the aged or very young, the sick or impaired, or those who are "socially or culturally disadvantaged." He is concerned with representation of people who are intimately connected to the biographer, either as family members, or in some other "trust-based relationship." Couser argues that the relationship between vulnerable subjects and their biographers is analogous to that between patients and their physicians and that therefore principles of bioethics should be applied to such life writing, especially the principles of autonomy, nonmaleficence, and beneficence.

Couser explores life writing and betrayal (Chapter 1), outlines how he will apply the principles of biomedical ethics and ethnographical ethics to life writing (Chapter 2), and applies these principles to examples of collaborative autobiography (Chapter 3). He then critiques in detail Michael Dorris’s memoir about his adopted son, The Broken Cord (Chapter 4); the work of Oliver Sacks (Chapter 6); memoirs of euthanasia (Couser calls these "euthanographies"), Saying Goodbye to Daniel: When Death Is the Best Choice, by Julia Cassutto Rothman; Rescuing Jeffrey, by Richard Galli, and But What If She Wants to Die, by George DeLury (Chapter 7). Finally, in the last chapter, Couser considers how investigation of the human genome might influence the "scripts" of our lives and hence life writing, and also how life writing might be a counter discursive force against genomic essentialism.


This is an excellent and provocative discussion that should be of interest to auto/biographers; patients; physicians who write [about their patients or about their clinical experiences] as well as physicians who do not write; bioethicists; literary scholars; scholars in cultural studies, ethnography, science studies, disability studies and other fields. While not wishing to impose unnecessary restrictions on writers, Couser is concerned that those who write about the sick or disadvantaged have a special obligation to represent their subjects in a way that "resist[s] objectification" and resists exploitation. Furthermore, he argues, authors have an obligation to their readers to articulate the negotiations that took place with their subjects in order to publish.

Perhaps the most important chapters for medical humanities are chapters 4, 5, and 6. In Chapter 4, "Adoption, Disability, and Surrogacy: the Ethics of Parental Life Writing in the Broken Cord," Couser argues that the way in which Michael Dorris represents his adopted [Native-American, mentally impaired] son transforms the boy into a case history, the embodiment of cultural damage [as it is reflected in the high incidence of alcoholism among Native-Americans] and Otherness.

The discussion of Oliver Sacks’s work in Chapter 5--"Beyond the Clinic: Oliver Sacks and the Ethics of Neuroanthropology"--expands significantly Couser’s critique of Sacks in Recovering Bodies: Illness, Disability, and Life Writing (see annotation). Couser traces the articulation of Sacks’s "personal medical ethic" (86)--attending to the person and the meaning of illness to the person--and its expression or lack thereof in his writing and filmmaking. He elucidates in considerable detail those instances where Sacks reduces people to things because he chooses them and identifies them (with medical authority) as model cases, or because he presents people as puzzles to be solved by a medical detective who is himself.

On the other hand, Couser credits Sacks for acknowledging that disability "may bind people together in communities that have distinctive values and customs" (99) and that conventional notions of illness and health must be questioned. There are interesting observations contrasting the Sacks films with some of his writing; Couser notes that in certain films, some of the patients clearly understand their position and are active agents in the filmmaking process.

Chapter 6, "Life Writing as Death Writing: Disability and Euthanography," explores the ethics and complexities of this writing. As Couser explains, "issues of autonomy and authority are crucial" in this genre and the writers in these cases are "complicit in the death they narrate" (125). Further, these texts, Couser posits, provide an opportunity for the reader to search out what is not said, what is not taken into account in the narrative; he suggests that such narratives and an active reading process are important in the euthanasia debate, as well as for providing new perspectives on living with disability.

Couser supports the notion that biomedicine and life writing have an obligation not just to respect autonomy, but to actively promote it. Individuals, he argues, exist in relations with others and that "relational self" must be "nurtured in its existential context" (163). "If the subtext, the subliminal message, of medicine today is all too likely to be ’cure, correct, or eliminate’, the subtext of robust disability narratives is life without cure, but not without care" (164).


The book is well documented, with extensive notes and a large bibliography.


Cornell Univ. Press

Place Published

Ithaca & London



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