Commentary by Sayantani DasGupta, M.D., M.P.H., Assistant Clinical Professor of Pediatrics and Core Faculty, Program in Narrative Medicine, Columbia University; and Faculty, Graduate Program in Health Advocacy at Sarah Lawrence College
The mystery of illness stories is their expression of the body: in the silences between words, the tissues speak. It’s about hearing the body in the person’s speech. — Arthur Frank(1)
Hearing the Body
A woman with a history of thyroid cancer is giving a life history interview to a student as part of a graduate seminar assignment. Her narrative shows how complex and interworven the pieces of an individual’s story are to one another. "My parents never felt strong enough to share with me that I was adopted," she reveals, "but deep down I had an inkling that was the case…I recall my mother, who had a separate walk-in closet from my father…saying to me many times over, 'You’re welcome to try on my clothes…but never touch the strong box that’s on the shelf because it contains important papers related to our house.'" At age 12, she finally opens the box, discovering the truth of not only her parentage - in the form of letters between her adoptive and biologic parents - but the key to her genetic health risks. When, years later, after having a child herself, she decides to contact her biologic mother, she discovers that her mother is terminally ill with ovarian cancer - 20 years after having had breast cancer as well - and that she herself is genetically predisposed to both diseases. (2)
Another student interviews her elderly father, a brittle diabetic who is slowly losing his ability for independent living. She compares him to Jean-Dominique Bauby, the completely paralyzed author of The Diving Bell and the Butterfly(3), describing her father’s condition as "The locked in syndrome of the aged." She both celebrates her connection to him and mourns his losses - present and future. "Sustained by memories, reflections and dreams and the adventures of the wanderings of the mind," she writes, "time will be fleeting and yet it will be all that he has…I know there is 'no currency strong enough to buy his freedom back from the kingdom of the sick.'"(4)
A young woman interviews her cousin, a man with a life threatening peanut allergy. She admits to her instructor that she picked her cousin for his sense of humor - "I didn’t want my illness interview to be depressing." Yet, although she has known about her cousin’s illness her entire life, the interview process inspires her to advocate for the safety of those with food allergies. Using Arthur Frank’s precept of living for others and 'placing oneself within the community of pain,'(5) she writes, "What Frank is advocating, I believe, is empathy - a quality that shouldn’t just translate into feeling but also action…I hope to carry on (my subject’s) message, combining both our voices into one, action oriented campaign.(6)
For the past seven years, I have taught a class on illness narratives at the graduate program in Health Advocacy at Sarah Lawrence College, a class in which students read autobiographical as well as scholarly writing about illness. The idea of teaching listening through the close reading of narratives is one that is consistent with my work at the Program in Narrative Medicine at Columbia University, where my colleagues and I teach medical students, residents, fellows, and practicing clinicians the skills of medical listening through the close reading of texts, as well as the writing and sharing of the students’ own texts.
However, the final assignment for my illness narratives class deviates from this tradition in medical humanities to use either literary or cinematic narratives in our teaching. Rather, I turn to the discipline of oral history to assign the students the task of conducting, transcribing and analyzing an oral history life story interview of a subject with a chronic illness. Before describing some more details about this exercise, it is useful to describe some ways oral history theory can illuminate our understanding of medical listening.
What is Oral History?
Oral history emerged in the wake of World War II, when historians in Italy and Germany became particularly interested in hearing the experiences of Nazism and Fascism from the voices of the people - realizing that the experience of the ordinary worker was not that which was recorded in the official history books. Oral history as a discipline focuses on "the interviewing of eye-witness participants in the events of the past for the purposes of historical reconstruction."(7). In addition to this broad-ranging understanding of individuals in their social and historical contexts, oral history is a field with a strong focus on individual voice and individual story - particularly the voices of the marginalized, oppressed or those otherwise "hidden from history."(8)
Oral interview as event
Oral history recognizes the interview as a unique event that can neither be reproduced at a different time or with a different interviewer. The uniqueness of the interview event is determined by the relationship of interviewer to interviewee, the nature of the questions asked, and perhaps, as esoteric factors as the time of day, directly prior occurrences, and cues of the physical environment.
Oral stories as meaning making processes
Oral history lends a qualitative understanding to oral stories - such that oral stories are not storehouses of confirmable 'facts,’ but rather, meaning making processes in and of themselves. Retrieving memory and constructing tellable stories are complex acts that reveal much about the teller’s sense of the world.
Oral stories as multivocal
Oral history recognizes oral stories as multivocal(9) and co-created by both teller and listener. Not only the questions asked, but the responses and reactions, body language, and very identity of the witness fundamentally shapes an oral narrative.
The oral interview as an "experiment in equality"(10)
Oral history is concerned with the possibility of interview bias secondary to issues of power and hierarchy - ensuring that the interviewer doesn’t impose their expectations upon the teller, guiding and determining the story. Simultaneously, oral history recognizes that no listener is 'objective,’ but that an awareness of her own filters and belief systems, as well as a degree of transparency, is necessary with the interview subject. I have made, in another location, an argument that such mutual transparency is fundamentally necessary to medical dialogue and practice.(11)
An Oral History Exercise
The oral history exercise I have designed for my health advocacy graduate students is a way for them to see 'narrative in motion’ - not only applying the theoretical ideas we discuss in class, but using some of the autobiographical texts we read to deepen their understanding of their oral history interviews. This multi-part, all semester assignment includes choosing a willing individual (whom they either personally knew or a willing stranger), constructing guideline questions, conducting a 45-60 minute taped interview of the individual, transcribing the tape verbatim, and then writing a paper which covers both the process of the interview and the themes which emerge from the interview. As a class, we construct an unofficial 'informed consent’ form, which details for the subject the solely educational purpose of the project, the ability to choose anonymity, and what will happen with tape, transcript and paper after the project is complete. Importantly, students present their oral histories to one another at the end of the semester, often, with their interviewees’ permission, playing samples of the audio (or video) tapes for the class. These sessions allow the individual life story interviews to become a collective series of oral histories - whereby one voice echoes another, certain themes resonate, yet, as opposed to statistical 'data’ - each subject’s particular, idiosyncratic voice remains intact.
This exercise has been adapted for Sarah Lawrence’s graduate program in genetic counseling, where genetic counselors in training interview pregnant women on, among other things, their ideas of hereditability.
The transformative power of an oral history exercise
This past year, I learned from a gifted student how much this exercise teaches listening and witnessing - even in the absence of a strictly ORAL narrative. Marleise Brosnan, a graduate student in the Sarah Lawrence Health Advocacy Program, conducted the first completely nonverbal oral history I have ever had in my class. When she approached me with this challenge, I wasn’t sure how to recommend she proceed, but encouraged her and her subject to find a way of completing the assignment. And so, my student interviewed her ex-husband Casey, who has had amyotrophic lateral sclerosis (ALS) for 5 years, been nonverbal for 6 months, with a tracheostomy and feeding tube, and only the use of his head and left hand. Marleise and Casey met on multiple occasions - far more than the required one visit interview - during which she would ask questions, then often spend hours interpreting - and confirming her interpretations of - his facial expressions, nods, vocalizations, and laborious handwriting- a process not unlike that which Jean-Dominique Bauby underwent in writing The Diving Bell and the Butterfly.(12)
The impact of watching one of Marleise and Casey’s interview sessions on videotape was profound for the rest of the class. Part of that impact was Casey’s physical presence - his handsome face, his disobedient body, the tracheostomy tube, the wheelchair. The majority of the impact, however, was witnessing Marleise and Casey’s profound connection over his story - her dedication to facilitating his 'voice’ and his to being 'heard.’
"I am waiting for freedom," wrote Casey on a lined 81/2 x 11 page that Marleise held horizontally before him, "from either a cure or death."
For my student Marleise, the experience of witnessing and co-authoring Casey’s story served several scholarly and personal functions. In her words,
"I recognize that I put my feelings about his disease in a box - and I put that box all the way in the back of my mental attic and stacked several other boxes on top of it. I know a day will come when this box will be opened and I will be faced with a mountain of sorrow related to his life and death…never once have I shed a tear. I cannot. For I know that if I shed one tear, all the tears in the box will come pouring out and just may consume me..I am conducting this interview in preparation for that day. So that when the day comes I will have not only participated in his care, but will have made a connection for him to the world after him and a gift to leave behind for his sons. I feel this exercise for some reason will also help me bear the weight of the immense grief and loss to come."
"Oral history interviews are unique in that the interaction of researcher and subject creates the possibility of going beyond the conventional stories… to reveal experience in less culturally edited form."(13) In the medical humanities classroom, oral histories provide aural texts with which students can engage in a different way than with written or cinematic texts. Oral history theory enriches our understanding of the dialogic encounter as a relationship building event, and the oral narrative as a co-created story reflecting both teller and listener. As a classroom methodology, oral history exercises allow learners to witness stories in profound and potentially transformative ways, even as they witness their own processes of witnessing. By placing the interviewer in the position of self-reflective learner, oral history suggests for clinicians a radically different stance from which to approach storytellers. Ultimately, these exercises can inspire not only a deeper understanding of the self and the other, but advocacy and action.
In the words of Marleise Brosnan, describing her own interview with Casey, "The interaction is central and what he is writing is secondary…He is having his say and I am the instrument that is giving voice to his thoughts. To my absolute surprise, I enjoyed the sound of my voice while listening to the tape afterward. I believe this is because although you can only hear my voice it is not really mine alone, it is ours. Our real time experience put both of us in the moment of his immediate thoughts and gave his voice meaning. It was a joyful experience."(14)
1. Frank, Arthur. The Wounded Storyteller: Body, lllness, and Ethics. Chicago: University of Chicago Press, 1995, p.xii.
2. Both the student and her interviewee kindly granted permission for their story to be shared here.
3. Bauby, Jean-Dominique. The Diving Bell and the Butterfly. New York: Vintage Books, 1997.
4. Both the student and her father kindly granted permission for their story to be shared here. Her comment here is complex and multilayered, she is both writing through Jean-Dominique Bauby’s story - adapting a quote from page 44 of his memoir - but Bauby and she are of course also referencing Susan Sontag’s notion from her Illness as Metaphor of illness and wellness as separate 'kingdoms.’
5. Frank, Ibid, p.37.
6. Both the student and her subject kindly granted permission for their story to be shared here.
7. Grele, R.J., "Directions for oral history in the United States," in D.K. Dunway and W.K. Baum (eds.) Oral History: An Interdisciplinary Anthology, Walnut Creek, Ca: Altamira Press, 1996, p.63.
8. Perks, R. and Thomson, A. (eds.), The Oral History Reader, NY, NY: Routledge, 1998, p.ix.
9. Portelli, A. "There’s always gonna be a line," in The Battle of Valle Giulia: Oral History and the Art of Dialogue, Madison, WI: University of Wisconsin Press, 1997, p.24
10. Portelli, A. Research as an experiment in equality. In The Death of Luigi Trastulli and Other Stories: Form and Meaning in Oral History. Albany: SUNY Press, 2001, 29-44.
11. DasGupta, Sayantani. Narrative humility. Lancet, 2008 March 22; 371 (9617):980-1.
12. After suffering locked-in syndrome secondary to a massive stroke, and being left with only the full use of his left eyelid, Bauby dictated his memoir to a scribe using a complicated system whereby she would say every letter of the French alphabet until he would blink. Bauby would memorize whole passages he wanted to write, then laboriously communicate them letter by letter.
13. Perks, R. and Thomson, A. (eds.), op cit.
14. Marleise and Casey graciously granted permission for their experience and words to be shared here, and indeed asked that their names be used.