Doctor Stories and Patient Stories

Richard Powers’s The Echo Maker tells the story of a Nebraskan meat-packer who crashes his truck into the ditch of a river. He awakens from a coma with Capgras ...

Richard Powers’s The Echo Maker tells the story of a Nebraskan meat-packer who crashes his truck into the ditch of a river. He awakens from a coma with Capgras syndrome, a delusional disorder caused by a brain lesion. He fails to recognize his world—his sister, his neighborhood, his house, his dog. He is disconnected from his own history and has to rely on a famous neurologist and best-selling author, Dr. Gerald Weber, to reassemble his life into a coherent whole.

Weber, who resembles the late Oliver Sacks, believes that narrative is crucial to understanding his patients. He devotes himself to “telling the story of people whose stories don’t get told.”1 The doctor appears to have good intentions, but his “narrative impulse” is too strong. He cares more about representing his patient than healing him, so he abandons the meat-packer once he gets all the details necessary for his next book.

Powers uses this storyline to raise questions about narrative’s role in clinical settings and beyond. He asks, for instance, what is narrative’s impulse? Does it increase empathy between individuals? Or does it merely allow for individuals to give form to their own experiences? What kinds of knowledge does narrative produce? These are pertinent questions, given that doctors, nurses, and other health care providers are increasingly being trained to use narrative methods to understand, treat, and represent their patients’ illnesses. “Narrative Medicine” programs like the one Rita Charon founded at Columbia University are transforming medical schools. Such programs purport to challenge the tradition of reductionist, fragmented medicine and to protest the social injustices of the health care system by teaching providers to more skillfully receive patients’ stories.

These programs are founded on the notion that doctors and patients occupy distinct narrative worlds. Patients’ worlds are multiple, involving many people, places, times, and events in relation to illness. Doctors’ worlds are narrow, focusing on a particular symptom or disease. Whereas patients explain illness in personal terms (“I developed symptoms after losing my job”), doctors explain illness in biological terms (“the patient developed symptoms in middle age”). Narrative medicine programs train doctors to attune themselves to the narrative elements of patients’ stories—the plot, form, setting, character, and temporality—so they can better understand them. These programs have proved popular enough that their influence is now expanding into other realms of clinical practice.

Narrative in Social Work Practice: The Power and Possibility of Story, edited by Ann Burack-Weiss, Lynn Sara Lawrence, and Lynne Bamat Mijangos, offers the testimonies of social workers who have adapted narrative medicine for their profession, incorporating reading- and writing-based practices for the mutual benefit of clients and workers. Many of the volume’s contributors are graduates of Charon’s program at Columbia.

Like the foundational texts that it cites, Narrative in Social Work Practice is moving and thoughtful.2 The prose conveys the authors’ deep passion for and commitment to improving human lives with stories. But this book fails to contend with narrative’s potential shortcomings. Too many chapters tell a happily-ever-after story, and none of the authors meaningfully explores the ways in which story can lead to misrepresentation—or worse, exploitation—of others, despite professionals’ noble intentions. It’s as if giving form to clients’ stories is a simply a choice, rather than a complicated task.

The book begins by acknowledging the negative trends that have impacted the profession. Narrative practice advocates argue that, like health care, social work has become increasingly mechanized. The digital revolution has secured the place of standardized forms, compelling professionals to translate clients’ lived experiences into a series of predetermined codes. The social worker, according to Burack-Weiss in her introduction, has “become a reverse alchemist, turning the gold of client stories into hard beads of computer-ready data.” As a result, a case record often fails to convey a complete sense of the person whose life it documents.


Oliver’s Body

By Lawrence Cohen

Technology isn’t the only obstacle preventing social workers from connecting with clients. The social worker is also haunted by her reputation as an uncaring authority figure. No matter how benevolent her intentions, she is often regarded as the well-dressed woman who knocks at the door to take people’s children away. And the profession’s long-standing emphasis on “evidence-based practice” restricts her from experimenting with more holistic approaches, which might redress the major communication barriers that exist between worker and clients due to racial, cultural, and socioeconomic differences. On top of these problems, the social worker is susceptible to “compassion fatigue,” burnout, and secondary traumatization.

Fortunately for the authors, narrative saves the day. Social workers confront personal traumas by writing about them, and they gain the trust of reluctant storytellers simply by divulging biographical details or by allowing clients to see their own vulnerabilities. They facilitate poetry readings and writing courses that lead to breakthrough moments. On more than one occasion in the anthology, social workers describe clients shedding tears of gratitude for the professionals who facilitated and listened to their stories.

Of course, first-person writing can be therapeutic, and narrative can transform dramatically both tellers and listeners by creating a bridge between them. But narrative isn’t inevitably a connective force. This book buries one of narrative medicine’s most critical insights: like all knowledge-making systems, narrative is political. It can obscure others’ lived experiences as easily as it can illuminate them. Narrative allows for those with power and privilege to project onto others and to mandate intelligibility. The field’s founding scholars more clearly recognize this. Sayantani DasGupta, for instance, acknowledges that “narrative work … risks carrying within its practices and pedagogies the potential to replicate the selfsame hierarchical, oppressive, power dynamics … that the field is designed to address.”3

A too-reverent attitude toward narrative makes it possible for social workers to transform clients’ crises into their own opportunities for healing, while claiming therapeutic connections. For example, in her contribution to this volume, Bamat Mijangos describes an encounter with a young mother-to-be where, in recalling her own stories of childhood trauma, something magical happens: “Age, education, and socioeconomic differences [soften] and [smudge],” and she becomes “kin” with her client. It’s evident that Bamat Mijangos was moved by her act of remembrance, but it’s less clear how the client benefitted. The reader wonders if the teenager also experienced such a cathartic moment.

This book buries one of narrative medicine’s most critical insights: like all knowledge-making systems, narrative is political.

Facilitating clients’ first-person narratives is also fraught, though the authors do not acknowledge this point. In one chapter, Nora McCarthy and Rachel Blustain champion a writing workshop in which they trained parent clients in the child-welfare system to “break down complex life stories” into recognizable parts: a beginning, middle, and end. By guiding and shaping these stories, McCarthy and Blustain claim to have empowered the students, lending their stories a type of narrative coherence in the present and future. The social worker’s “voice becomes part of the writer’s internal reflective capacity … not only during the act of writing, but also reflexively, as she moves through life.”

Here, too, the social worker’s influence is presumed to benefit the client, and there is little discussion of the possibility that she could be a policing force. It is entirely possible that by imposing certain narrative constraints (a beginning, middle, and end), the social worker unwittingly circumscribes the client’s imagination of her own life.

In short, narrative representations carry no moral guarantee, as the real-life Oliver Sacks realized. Sacks, who is surprisingly absent from the field’s literature, gained fame with collections such as Migraine (1970), The Man Who Mistook His Wife for a Hat (1985), and An Anthropologist on Mars (1995), which recount his patients’ bizarre neurological disorders.

Like this volume’s authors, Sacks avoided making a spectacle of his patients by weaving his own life narrative into their tales. He acknowledged his own eccentricities, portraying himself as an almost stereotypical bizarre, quirky doctor. As scholar Leonard Cassuto wrote, Sacks “create[d] a collaborative space, a community of freaks that eventually [came] to include himself.”4 His memoirs extend this effort to reveal his vulnerabilities: A Leg to Stand On (1984) recounts the doctor’s experiences as a pitied and disabled patient following a severe leg injury, while On the Move (2015) relates Sacks’s struggle to accept his homosexuality.

Despite his efforts, some patients felt misrepresented by Sacks.5 Others accused him of romanticizing illness and taking advantage of patients for his own personal gain. Disability scholar Tom Shakespeare, for instance, infamously referred to Sacks as “the man who mistook his patients for a literary career.”6 Sacks’s controversial legacy suggests a difficult reality that narrative-based clinicians must face: narrative practice does not always lead to healing for all. Beyond mere humility, narrative medicine also requires interpretive skill (not to mention, a patient’s consent).


Modernism, Heal Thyself

By Kyle Walker

The field is primed to develop a robust set of strategies to contend with these obstacles, but these are remarkably lacking in the anthology. Nor do the authors, individually or collectively, provide a satisfying description of particular methods. Take, for instance, contributor Madelyn Miller’s discussion of applying narrative training toward a qualitative analysis of clients’ audio recordings: “I realized that language, expression, and relational engagement were as important as the thematic content of the text … Metaphors and leitmotifs were powerfully used, silence and voice varied across the narrative, tone and emphasis created particular meaning.” The reader is left to wonder how language and expression relate to thematic content, how metaphors and leitmotifs are used, and how tone creates meaning. It’s unclear how the author’s narrative knowledge translates into deeper insights.

By failing to parse narrative methods within the social work setting, this volume misses an opportunity to push the field beyond its current limits. Authors take for granted that narrative practice neatly transports across clinical settings. But social work practice is distinct from medicine. Does the latter setting present new challenges or opportunities for narrative practice? Does it illuminate any constraints that narrative imposes upon acts of witness? Alternatively, does social work reveal how certain constraints can be overcome so that all caring professionals can engage more fully with others?

Perhaps the biggest question plaguing the narrative disciplines is this: why does narrative alone confer meaning upon human lives? Isn’t narrative simply one tool among others for making meaning? This book, like Rita Charon’s foundational text, Narrative Medicine: Honoring the Stories of Illness, relies heavily on Jerome Bruner’s notion that “it is through narrative that we create and re-create self-hood.”7 An essay by Millet Israeli seems to speak for all the book’s authors when she claims to “see people as a product of the stories they tell.” But, as Sacks’s critics recognized, people are no more reducible to stories than they are to data.8

  1. Richard Powers, The Echo Maker (Farrar, Straus & Giroux, 2006), p. 225.
  2. Rita Charon, Narrative Medicine: Honoring the Stories of Illness (Oxford University Press, 2006); Rita Charon et al., The Principles and Practice of Narrative Medicine (Columbia University Press, 2017).
  3. Sayantani DasGupta, “The Politics of the Pedagogy: Cripping, Queering and Un-homing Health Humanities,” The Principles and Practice of Narrative Medicine, p. 137.
  4. Leonard Cassuto, “Oliver Sacks: The P. T. Barnum of the Postmodern World,” American Quarterly, vol. 52, no. 2 (2000), p. 330.
  5. Sacks describes this in On the Move (Knopf, 2015), pp. 249–50.
  6. “Book Review: An Anthropologist on Mars,Disability & Society, vol. 11, no. 1 (1996), pp. 137–142.
  7. Jerome Bruner, Making Stories: Law, Literature, Life (Harvard University Press, 2002), pp. 85–6.
  8. Galen Strawson, “Against Narrativity,” Ratio, vol. 14, no. 4 (2007), pp. 428–452.
Featured image: An illustration for “Preparing Medicine from Honey,” from a dispersed 1224 manuscript of an Arabic translation of Dioscorides’ De Materia Medica (calligrapher: 'Abdullah ibn al-Fadl). Metropolitan Museum of Art