Here I Am and Nowhere Else: Portraits of Care by Mark Gilbert at the Intersection of Art and Medicine

March 27, 2009 at 9:47 am

Oil on Canvas painting of man with disability in wheelchair with variety of  technologies to assist him

Commentary by Virginia Aita, PhD, William Lydiatt, MD, Mark Gilbert, BA (artist), Hesse McGraw, MA and Mark Masuoka, MFA

Introduction

AThe exhibition "Here I Am and Nowhere Else: Portraits of Care" explored 45 individual’s experiences with health, illness and caregiving. Three-thousand people attended the inaugural ten-week exhibition of the works that concluded on February 21, 2009 at the Bemis Center for Contemporary Arts in Omaha, Nebraska.A The exhibition arose from a qualitative research study that two of the authors, V.A. and W. L., designed with Scottish artist Mark Gilbert for his two-year residency at the University of Nebraska Medical Center (UNMC). The study, approved by the UNMC Institutional Review Board, included a number of stagesA from the design phase to the recruitment of patient and caregiver subjects, to Gilbert’s active drawing and painting phase, and finally to several stages of analysis and most recently to the exhibition of works.A The findings of the study will be published elsewhere, but we thought blog readers would be interested in knowing about the exhibition and how, as contemporary art, it played a role in helping exhibition viewers engage in an ongoing conversation about the nature of health, illness, care and the challenges, both professional and familial, of caregiving in our society. The exhibition included portraits of 25 patients from across the lifespan representing many varied situations on the spectrum of health and illness and 20 caregivers, both professional and familial.A The portraits served as a focus of conversation during the exhibition and a series of organized lecture-discussions about issues raised by the paintings. We describe below what transpired as we considered Gilbert’s large drawings and paintings that revealed obvious and subtle truths about health, illness, care and caregiving.

The Idea of Care and the Role of Contemporary Art

AOne of the important ideas that arose from the earliest analysis of the drawings and paintings of patients and caregivers was the idea that care is a non-instrumental, holistic process of personal engagement.A We also discovered that the boundaries of this engagement were not as defined as we had originally assumed-all human beings share in the experience of care and caregiving-sometimes as a patient, sometimes as a caregiver, and sometimes as both at the same time. This realization was further strengthened by patients’ willingness to participate in the study in order to "give back" so that others might learn from it.

As the exhibition drew closer, we knew that we wanted to explore the engagement that happens in the transfer of care between patients and caregivers.A To do this, we realized that framing the ideas we wanted to explore would be important.A At the same time, we wanted to encourage the public to join in the discussion.

To frame the important ideas, we invited the public to a pre-exhibition reception and evening of short background lectures the night before the actual gala opening of the exhibition at the Bemis Center for Contemporary Arts. The first brief remarks were made by project investigators about the origin of the project.A Following this, the Director of the Bemis Center for Contemporary Arts, Mark Masuoka, spoke on the role of contemporary art in society and in particular about the role of this exhibition in the on-going national discussion about health care.A He was followed by artist Mark Gilbert who spoke about his experience working as an artist-in-residence within a medical center with patients and caregivers. Finally, Emeritus, US Poet Laureate, Ted Kooser spoke about his experience as a patient featured in the exhibition.A Kooser then read a selection of poetry about his encounter with illness helping to focus the events that would follow during the exhibition.

The opening lectures set the stage for a series of three gallery discussions that took place every other week during the exhibition itself when we invited a speaker or panel of speakers to share with the audience their insights and experience about care relative to the drawings and paintings.A After each had spoken, the speaker(s) opened the discussion to the audience so that a give-and-take conversation about the topic could take place.A We held the lecture-discussions in the gallery itself, with the portrait works all around us.A Attendance varied between 80 and 150 participants.

The Lecture/Discussions

Patients and caregivers

For the first lecture-discussion on January 15, 2009, we invited a panel of patients and caregivers to talk about their experiences with the portrait project and we asked how it had influenced them in thinking about their roles, whether as a patient, a caregiver or both.A Two patient subjects spoke. One had undergone bariatric surgery for the purpose of health promotion while the other had been under treatment for brain cancer over a period of 10 years. Of the two caregiver subjects who spoke, one was a familial caregiver, the other a physician.A Panel members spoke about five minutes each about their experiences of being drawn or painted and then reflected on the meaning of it in their lives. The patients both stressed how the artist had succeeded in seeing them as whole people, not just physically but psychologically intact and the importance of that for effective care to take place.

Jove, a nearly blind African American, spoke about the importance of the project in helping to break down all kinds of barriers that prevent us from seeing, appreciating, and caring for another. The caregivers spoke about the impact of the project in helping them see and be responsive to the whole person (the patient). Dolores, Roger’s wife told of his belief in the importance of the project to help others overcome their fears of the ill.A He wanted to help care for others, even in his own debility caused by ALS so that they might learn more about the importance of personal engagement in care.A She said only as she understood the meaning of the project for her husband did sheA comprehend its importance and relationship to what she was doing in caring for him. The physician caregiver commented that the project had highlighted the importance of the bond that exists between patients and caregivers and had affirmed for him the importance of loyalty to the patients he serves.

Following these comments, we passed the microphone among members of the audience and many reiterated the importance of the relationship that exists between the ill and those who care for them-emphasizing that it is the relationship that is the heart of care as it unfolds in the doing of care.A Several people also raised the issue of how difficult it is both to be the recipient of care as well as the giver of care.A They spoke of our human condition that must yield to being both giver and a receiver of care, at different times or sometimes, at the same time.A Both roles are difficult and demand changes in who each is as a person, in personal identity, the topic of the second lecture -discussion.

Introspection

On January 29, 2009 Dr. Carl Greiner, a psychiatrist, spoke about the introspective nature of the portraits and what they imply about the nature of care and its relationship to personal identity. Walking from painting to painting in the softly lit gallery he engaged audience members in observing and explaining what they saw in the drawings and paintings. For example when he focused on one large almost 6’X6′ painting of the head of a bald young man nearing the end of his life despite chemotherapy for cancer, Greiner discussed what the audience’s observations implied about the patient’s psychological state and probable hopes, fears, and transformation due to illness.A This portrait is so compelling that it brought out psychological responses of audience members who articulated their own fears of cancer and death as they sat face-to-face with the raw truth of this young man’s life and imminent death.A In the communal and safe space of the gallery viewers engaged with others in the audience to articulate the most basic of human fears that were roiling within them. Greiner emphasized that the psychological and emotional states observable in the portraits and within us as viewers represent the common threads of our shared humanity.A When patients and caregivers interact in the transfer of care at such a level of shared, common experience, the identity of both is transformed.

Artist, curator, director perspectives

The final program on February 12, 2009 featured a panel with the artist, the curator of the exhibition, Hesse McGraw, and the Director of the Bemis Center for Contemporary Arts.A In this presentation, Gilbert spoke from the artist’s point of view, emphasizing the effect that the project had upon him.A Reflecting some of the discussion at Greiner’s presentation, Gilbert spoke of the difficulty he sometimes had in continuing with the work day-to-day, so powerful had its effects been for him as he worked with patients at critical times during their lives. The caregivers also had a profound effect upon Gilbert as he felt in some manner the gravity of the work they do. As the project proceeded he found that these challenges, far from being a hindrance, were to prove the driving force in the creation of the images. Gilbert spoke of the variety of powerful emotions and states of being that he was "privileged" to witness and tried to harness.

McGraw followed Gilbert and spoke from the curator’s point of view about presenting the work to the public. He pointed out that the portraits show the basic things that are needed to build a relationship in care such as trust and respect, but added that these portraits go far beyond that to tell intimate stories in a context of care. Using this idea, he then went on to ask those in attendance how the portraits might change our notions of what medical care in the contemporary world could be. AThen Masuoka spoke from the Director’s point of view about the role of contemporary art in highlighting and informing pressing societal issues, particularly health care. He said that art has the capacity to "kill" false assumptions that lead society down false paths.A He argued that this project, as contemporary art, has the capacity to inform viewers about what care is at a human level, and to inform viewers about what care should entail.

As we enter into a national conversation about healthcare reform, an exhibition such as this is important, he said, in helping the public to address what is critical to the enterprise.AA If the views of McGraw and Masuoka are valid, and we believe they are, contemporary art carries a heavy responsibility. Yet as the microphone was passed about the audience of more than 180 people, it was clear that audience members had engaged with these heavier questions about the role of health care in our society.A It was equally clear that for those in attendance, the most critical element of care is the human element.A This of course does not eliminate the need for the more technical medical and surgical aspects of care, but emphasizes that humane judgment in the doing of care is essential.

Conclusion

We have found our collaboration bringing contemporary art and medicine together to be extremely rich as both a research model and as an educational approach to explore the meaning of health, illness, care and caregiving. The exhibition of portraits of patients and caregivers and the related lectures and discussions about issues germane to the portraits have helped all who participated in these events learn a great deal. Our future plans are to tour the exhibition, along with an accompanying curriculum that can highlight important ideas that arise from it.A An exhibition catalogue is also available that includes reproductions of the artworks and essays written by the project originators, the artist, the curator and Bemis Director and others as well as by a select number of patients and caregivers all of whom provide varied perspectives. We are in the process of assembling a package that will allow the exhibition art works, curriculum, and catalogue to travel to other venues to be shared. For more information, please contact either Virginia Aita (vaita at unmc dot edu) AAAor the curator Hesse McGraw atA hesse at bemiscenter dot org.

Virginia Aita, RN, MSN, PhD is Associate Professor in the College of Public Health, Department of Health Promotion, Social and Behavioral Health, University of Nebraska Medical Center (UNMC), Omaha, Nebraska

William Lydiatt, MD is a Professor of Head and Neck Surgical Oncology at the Nebraska Medical Center, UNMC, and Nebraska Methodist Hospital, Omaha, Nebraska

Mark Gilbert, BA completed a 2-year Artist’s Residency at the University of Nebraska Medical Center, Omaha, Nebraska and currently practices art in Glasgow, Scotland

Hesse McGraw, MA is Curator at the Bemis Center for Contemporary Arts, Omaha Nebraska

Mark Masuoka, MFA is the Director at the Bemis Center for Contemporary Arts, Omaha, Nebraska

Acknowledgements:A We wish to thank the following for their support of the exhibition, associated program and catalogue:

The Nebraska Medical Center
The Division of Head and Neck Surgical Oncology in the Department of Otolaryngology-Head and Neck Surgery
The College of Public Health
Omaha Steaks
The Nebraska Arts Council
The National Endowment for the Arts

Embodied/Disembodied

March 10, 2009 at 9:10 am

The Slow Death of Rose

Commentary by Joyce Cutler-Shaw, artist; Artist in Residence, School of Medicine of the University of California San Diego

History is story telling with images embedded in memory. The history of anatomy is a history of human representation: how we are seen and how we see ourselves. Visual images are continually shaped and re-shaped by the enthusiasms and preconceptions of the present. The visual representations of the history of anatomy are an extraordinary record of our evolving self-images, public and private, cultural and social. As historian Martin Kemp has written, in observing the connections of medical science and art, "No field is richer in metaphor than the body." (1)

Body representation has been a significant feature of human visual culture from stick figures and handprints of pre-historic cave paintings to medieval illustrations; from Renaissance drawings of human dissection by artist/anatomists from Leonardo da Vinci to George Stubbs; from Rembrandt to Thomas Eakins; from the early 20th century European disease study waxes to the newest, digitally developed, life-like models with touchable, veristic, simulated wounds for training battlefield first responders - and from the virtual body of the Visible Man to the artist Virgil Wong‘s eponymous "Pregnant Man." Arthur Danto has written in The Body/Body Problem, that representation "brings something to the world it would otherwise lack - a point of view, with reference to which objects are transformed into instruments and obstacles and hence, systems of meanings." (2) Exploring across the disciplines of art and medicine I have discovered the medical field to be an arena for the newest forms of body representation. It is at the intersection of art and medical science that new insights in interpreting the physical self can emerge. Moreover, no field confronts issues more contentious than the medical such as when life begins and when it ends, and the limits of normalcy and the aberrant.

The Anatomy Lesson

My project titled, The Anatomy Lesson, is inspired and informed by my role as Artist-In-Residence at the School of Medicine of the University of California San Diego.A UCSD has been a leader in medical humanities and the first medical school nationally to appoint a visual artist for an independent fine art residency. I am honored to have been selected. The Anatomy Lesson is an exploration of the physical self and the human life cycle from birth through the process of aging and death- an odyssey of individual transformation common to all living things. It is also an investigation since 1994, of aspects of the history of anatomy by visiting great medical collections in our country, in Europe, China and Japan.

Medical models have depicted and re-shaped our body image through the centuries. The medieval cosmological metaphor of Zodiac Man was astronomically determined when we were creatures of humours and bile. The 16th century anatomist, Vesalius, and others of that time, made an argument for anatomy as a holy and divine art. Interpreting anatomy within a theological context was to "seek to 'know thyself’ by recognizing that God is present within the human body."(3) We were worthy of study and the body was open to investigation in order to understand the secrets of life. With the Renaissance and the emergence of the practice of dissection - of the "open body" - artists began to depict the anatomical figure, in human scale, as dynamic and dimensional. Leonardo da Vinci, pivotal artist and anatomist of the 16th century, opened the body labyrinth, even to initiating the anatomical positions and the cross section -which are still standards today. He drew the open torso as a body fragment with the fetus in utero, umbilically connected and close to term. Studying the body in specialized sections is current medical school practice, just as medical specialization is standard practice in contrast to holistic medicine.

Fragmented Body

Fragmentation is typical of the postmodern period as historian Linda Nochlin argues in her book, The Body in Pieces. (4) I have seen recent medical texts without a single whole body image.

In the 18th century gifted Italian craftsmen and a noted woman, Anna Morandi Manzolini, a professor of anatomy, an unusual role for a woman at that time, created life-size and life-like figures of painted wax with the texture of skin. They are still on display in medical collections at the University of Bologna, La Specola in Florence and the Josephinum in Vienna, Many were presented in the typical seductive poses of their time, as a reclining male odalisque, a "vein man," and as a reclining female nude, her arm gracefully bent beneath her head, with long blond hair, earrings and necklace of pearls, with open eyes and open abdomen.

Historically, the anatomical model has been male. Anatomical depictions of women have featured the uterus, often with fetus in utero, as childbearing remains a primary interest in women’s bodies, even depicted without the woman. Before the 14th century, when life and death formed a unity, medieval woodcuts depicted the fetus as a miniature person - a little adult - fully formed and seemingly, free standing. As the practice of dissection emerged the anatomical figure was presented in human scale, as dynamic and dimensional, with a search for physiological precision. The nineteenth and early twentieth centuries, brought the X-ray and metaphors of transparency. The surprise discovery of 1896, the X-ray, the "new light" as it was called, revealed for the first time, the hidden recesses of the living body. I traveled to Dresden to the Hygiene Museum to see the first transparent "Visible Woman" which revealed internal body parts. She is molded in the yellowing hard plastic of the early 20th century and placed on a pedestal with arms upraised. She is life-size. Contemporary models in the art and medical worlds raise new issues of human scale, as it escalates in the postmodern period to the gargantuan.

Today we can walk the 50 foot length, head- to- toe, of a contemporary anatomical model at the California Science Center in Los Angeles. Called "Tess," a glowing red light illuminates the interior architecture of the enormous bald head. The whole "body" is a cage of plastic and metal and blue-green retractable panels of hard "skin." See-through windows with flashing lights reveal the huge internal moving parts. She is ten times human size. We are the equivalent of a fetus or tumor in this labyrinthine figure. One hundred and twenty people can surround and view this supermodel at one time. To what degree can we identify and illuminate our own bodies with models of this scale and glitz? And what does it mean to lose our sense of human scale when exaggeration is as much a keystone of public attractions as it is of the grotesque? In Philadelphia at the Mutter Museum, the extremes of human skeletal form are displayed side-by-side in a circular case as curiosities with a circus sideshow feel.

Today we have sonograms and C-T scans, MRI’s and PET scans to view the internal body in real time, and which require informed visual reading, as, in fact, do figurative images in any context. Analysis is interpretation, as when a subject, a woman in labor, for example, becomes an object. In a contemporary delivery room, a woman in bed is typically wired to monitors, which continuously display her vital signs. Seated next to her, a nurse gently moves a mouse across her abdomen while diligently watching the screen to monitor the performance of the fetus. That is, if she has not been replaced by a virtual nurse as in some hospitals in Japan. What does it mean if a woman’s body processes are well attended, when she herself is ignored?

Disembodied

Our western historical tradition has focused on a physiological creature of flesh and blood, of skin, viscera and body fluids on an armature of bone, our embedded skeleton as primary structure. However with the arrival of the x-ray we could skip the knife and see through skin to bone to see a mysterious realm of tonal gradation. The rigorous training of radiologists in the strategies of visual reading often surpasses that of contemporary visual artists. In our era with advancing technologies of medical visualization, (computed tomography, magnetic resonance imaging and positron emission tomography) of photonics and bio-photonics, we are losing our physical selves. We are being reinterpreted through medical imaging at the forefront of body representation, dramatically demonstrated at annual conferences, such as "Medicine Meets Virtual Reality." (5) With the advances of remote, robotic surgery the eye-hand co-ordination of 8 to 12 year olds from playing video games is training them in the requisite skills of today’s and tomorrow’s new surgeons. Advanced medical schools are even considering robotic surgery as a specialty training program - for the Da Vinci Surgical System, for example- that would be separate from the standard four year medical school curriculum for medical doctors. Such specialist surgeons, operating from remote locations, even different countries, would not even have to meet the patient.

The contemporary Visible Human project is the result of a very costly, highly complex process, whereby a self-donated criminal cadaver has been micro-sliced and digitized and made available from the National Library of Medicine as a distribution base for an extensive range of independent programs for medical study. Medical schools and research labs have developed 3-D Virtual Reality Anatomy programs of the Visible Man and Visible Woman. Now we can exchange a physical self for a 3-D virtual reality display on a 2-D.screen, at a time, when for economic, rather than practical reasons, some medical schools are abandoning their established anatomical dissection programs for computer and real-time laboratory demonstration dissection. However, what is lost is the powerful hands-on sensory experience of the unpredictable, individual physical self. After all, no two bodies are alike, many with remarkable differences, which cause huddles in the anatomy lab.

We can now study the heart with goggles and magnetic finger tipped gloves. We can enter the rib cage, zip into the inferior vena cava, orbit the chambers and valves, and ride the looping Perkinge fibers, conveniently colored yellow. We can enlarge the image until it seems to emerge from the screen. It was illuminating to discover that, to develop this display at UCSD, advanced drawing skills were invaluable in visualizing and programming the quarter turns of body parts, as the available 3-D imaging programs were inadequate. The scale is variable and we can enlarge to room size in a total surround. That is, if we can afford the equipment to do it.

We now have the option of a cosmetically reconfigured self within our evolving social/cultural/medical and genetic age of cyborgs and avatars. With photonic and bio-photonic imaging we are represented as scans and graphs, as neon colored printouts of body hot spots, and as linear genetic arrays, in effect more virtual than physical. Even in death we have more options than burial or cremation. We can be cryogenically frozen or plasticized as the plasticized cadavers of Gunter von Hagens’s "Bodyworlds" and its offspring exhibits of "The Body."

Our challenge is to understand and respond to the implications and consequences of these advancing phenomena that culturally define us. It is because we are still here, in our skin, embodied and temporal, transforming physically over a lifetime, even as a reluctant public takes the adversarial position of refusing to accept that we are of nature,A that we age and die. I argue for the immediate and the visceral because I believe that the life we have is an evolutionary gift, and that, at whatever our stage of life, we, in ourselves, are a unique demonstration of that vital process. We are the perfection of ourselves.

Note: This commentary has been abbreviated from a paper presented at a 2009 College Art Association Conference Panel titled "Clothing, Flesh, Bone: Visual Culture Above and Below the Skin," Co-Chairs, Sarah Adams and Victoria Rovine.

References

1. Martin Kemp, "Medicine in View: Art and Visual Representation", Western Medicine: An Illustrated History, ed. Irvine Loudon (New York: Oxford University Press, 1997) p. 11.

2. Arthur C. Danto, The Body / Body Problem (Los Angeles: University of California Press, 2001) p. 14.

3. Walter Schubpach, The Paradox of Rembrandt’s 'Anatomy ofA Dr. Tulp’ (London: Wellcome Institute for the History of Medicine, 1982) p. 31.

4. Linda Nochlin, The Body in Pieces: The Fragment as a Metaphor of Modernity (New York: Thames and Hudson, 1995).

5. Medicine Meets Virtual Reality 17, NextMed: Design for/the Well Being. Medicine Meets Virtual Reality is an annual conference on emerging data-centered technologies for medical care and education. It includes The Well, which merges formal exhibits with casual demonstrations and The Salon, which mingles the visual arts, science, and medicine.A January 19 - 22, 2009. The Hyatt Regency Long Beach, Long Beach, California

The Mirror and Self-Knowledge

January 22, 2009 at 10:22 am

Using the internet for self-knolwedge

Commentary by David Biro, MD, PhD, Assistant Clinical Professor of Dermatology at SUNY Downstate Medical Center and author of One Hundred Days: My Unexpected Journey from Doctor to Patient. His new book, The Language of Pain, will be published by Norton in 2009.

Illness like any experience that deviates from the norm (in this case, the norm of health) triggers a search for meaning: something is wrong with me, I must find out what is happening. Since the source of illness lies within us, we instinctively turn to introspection: let's try to see what's happening. But immediately we encounter obstacles. There is the opaque surface of the body that literally prevents us from seeing inside. And more significantly an entire nervous system designed specifically to limit (thankfully) our engagement with the body and continually point us in the opposite direction. Even consciousness - that quintessentially inner and private realm - constantly reaches outwards towards the objects in the external world that we think about, desire, and fear.

While not explicitly offering illness as a case-in-point, many contemporary thinkers including Sartre, Foucault and Lacan have consistently undermined the traditional approach to self-knowledge by introspection. Instead, they emphasize the importance of the Other in understanding the self. We rely, for example, on other people like doctors, who, in turn, have studied other bodies (both dead and alive). We rely on things like books and the Internet which provide information about ourselves. And of course we rely on that ancient means of self-reflection, the mirror, which allows us see ourselves from perspectives otherwise unobtainable.

The Case of Frigyes Karinthy

Frigyes Karinthy was a well known Hungarian writer of the early 20th century who developed a brain tumor. The tumor, however, would not be diagnosed by one of the many specialists he consulted with but rather quite remarkably by himself, a layman who never went to medical school. Himself, that is, with the help of a metaphorical mirror.

The first sign of trouble came with the trains roaring in his head. Next the sense that pictures and tables were moving when they weren't. Then there were headaches and fainting fits. One doctor attributed the symptoms to an ear infection. Another to nicotine poisoning and a third to humiliations suffered in early childhood. In each case none of the prescribed interventions helped, and for a while Karinthy was determined to live with the trains and hallucinations, belittling their importance as his doctors did. But when they persisted and new symptoms developed, he could deny them no longer. They were interfering with every aspect of his life. Regardless of what the doctors thought, something was wrong. Very wrong.

Proof of his conviction would come unexpectedly. Karinthy was visiting the clinic where his wife, a doctor, worked at the time. Accompanying her on rounds, Karinthy stopped at the bed of a young man, transfixed by the expression on his face. It looked familiar, he thought. The man has a brain tumor, his wife grimly informed him, and is terminal. Ah, remembered Karinthy, he had seen that face before, in a friend who died many years ago of the same condition. But Karinthy wasn't entirely satisfied. He continued to be haunted by the sight. It reminded him of someone else too, he was sure.

Later on it hit him with the full force of the roaring trains in his head:

I had suddenly stopped dead in the gateway, like the ox I had seen unwilling to enterA the slaughter-house. At that moment, it had flashed into my mind. I remembered. The pale, vacant face of the dying man reminded me of my own expression as I had seen it lately in my mirror while shaving. I took two steps, then stopped again. With a foolish grimace, like a man who pretends to belittle some achievement he is boasting about, I said to my wife: "Aranka, I've got a tumor on the brain."(1)

Aranka dismissed her husband's epiphany as crazy. But she was soon proven wrong. Fortunately, things would turn out well for Karinthy. He was successfully operated on by the famous Swedish neurosurgeon Olivecrona. Afterwards, he returned to his writing career and publish his best work yet, a memoir of his fascinating encounter with illness, A Journey Round My Skull.

Doppelgangers in Pain

Karinthy is not unique in deriving insight about his illness from another person. Many patients instinctively gravitate toward other patients with similar diagnoses. How is illness playing out in them and what in turn might it mean for me? Indeed, this is a recurring theme in the increasingly popular genre of illness narrative or pathography. Whether they find fellow sufferers in the clinic or in support groups or on the Internet, patients are constantly on the lookout for what Alphonse Daudet, another writer-patient, once called his "doppelgangers in pain."

On the one hand, these significant others are an instant source of support and sympathy in a world that tends to alienate and isolate the sick. "My doppelganger," writes Daudet during his stay at a French sanatorium, "the fellow whose illness most closely resembles your own. How you love him, and how you make him tell you everything!" At the same time, they offer a vital means to self-knowledge. Towards the end of his life, Daudet could no longer walk steadily. The ataxia caused by syphilitic damage to his cerebellum resulted in a clumsy, halting gait. But the only way for him to see what he looked like was to observe himself in a mirror. Or better yet in another patient with the same problem:

I see him in my mind's eye, putting one foot down carefully before the other, but still tottery: as if walking on ice. Sad. (2)

No doubt Daudet feels sad for his doppelganger. But equally sad, perhaps more so, for himself and what has become of him.

Nor do sufferers restrict "finding" themselves in human beings that literally look like them. Grieving the loss of his lover who died of AIDS, Mark Doty finds solace and insight from a seal he spies in Cape Cod Bay during a walk. Apart from the group and alone, distressed and exhausted, the seal "conveys a kind of helplessness and desolation" that cuts Doty to the core. Not only because he feels sympathy for another sufferer but because he sees himself in the seal, the inside of his grief-stricken mind suddenly visible (3). Others find themselves in the fictional characters of books they read, in the cadences of songs they listen to, and in the sky that seems to mirror their emotions. All of which should be understood not as a passive "stumbling" upon the self but as an activity that requires a degree of imaginative or metaphorical work on our parts. We project ourselves onto things in the world - other people, seals, or songs -so we that could see and understand ourselves.

Mirror Neurons

As it turns out, the human brain may be hardwired to engage in projections of this sort. One of the most exciting, recent discoveries in science has been the mirror neuron. First isolated in monkeys and later found to exist in human beings, these neurons (and groups of neurons) are active not simply when we are moving and emoting but when we observe others moving and emoting. Our brains, as it were, re-enact or mirror the movements and emotions of other people as we watch them. Although scientists are still working out the implications of this extraordinary finding, it is almost certain that the brain's mirroring system contributes to the profoundly social nature of human beings and may well be responsible for many of our greatest collective achievements: language, social institutions, and culture (4).

Many scientists also believe that neuronal mirroring can reflect in two directions, illuminating both the external world (of others) and the internal world (of self). By constantly observing and imitating others, we not only learn about them but about ourselves: How we see and think of ourselves; the meanings we ultimately give to our most intimate and "unsharable" experiences like pain; indeed the ongoing project of human creation in general as it works to fill the world with things that possess the capacity to reflect our humanity (5).

Thinkers like Sartre, Foucault and Lacan may have been exquisitely prescient. Mimesis may well turn out to be a prerequisite or stepping stone to self-knowledge. We observe, reproduce, impose patterns, and thereby understand. We can do this with objects that happen to cross our field of vision like the patient encountered by Friges Karinthy or the seal by Mark Doty. But we could also do this on a more sophisticated level. If a potential doppelganger doesn't exist we can invent one. As Alphonse Daudet does in his dream of the boat with the damaged keel (mirroring his diseased keel-spine). And as many artists do in their poems and paintings. After finishing his masterwork, Flaubert is famously reported to have said of his creation: Emma Bovary, ces't moi. The re-production leads to recognition. The same thing that painters do perhaps more self-consciously in their self-portraits and in the case of Frida Kahlo, her double self-portraits. Here the dictum of philosopher Nelson Goodman is most transparently realized: Comprehension and creation go on together (6).

References

(1)Friges Karinthy, A Journey Round My Skull (London: Faber and Faber, 1938), p.59
(2)Alphonse Daudet, In the Land of Pain (New York: Knopf, 2002), p.56-7.
(3)Mark Doty, Heaven's Coast (New York, HarperCollins, 1996)
(4)Marco Iacobini, Mirroring People: The New Science of How We Connect with Others (New York: Farrar, Strauss and Giroux, 2008)
(5)Elaine Scarry, The Body in Pain (New York: Oxford, 1985)
(6)Nelson Goodman, Ways of Worldmaking (Indianapolis: Hackett Publishing, 1978)

 

Borderlands: A Theme and Syllabus for Medical Humanities Teaching

November 14, 2008 at 3:48 pm

Hands reaching out

Commentary by Felice Aull, Ph.D., M.A.; Adjunct Associate Curator, New York University School of Medicine; Editor in Chief, Literature, Arts, and Medicine Database

Now that I’m semi-retired, an elective course that I developed and taught for fourth-year medical students is retiring with me. I'm writing about it here, in the hope that other medical humanities educators might wish to adapt it for their teaching — it was very well received by participating students and, I think, served a useful function. (I believe Linda Raphael has introduced a version at George Washington University School of Medicine). I taught "Betwixt and Between: Borderlands and Medicine," for seven consecutive years at NYU School of Medicine, modifying it somewhat each year. The idea of adapting a borderlands theme to an examination of the medical profession came to me while studying the work of Edward Said and Gloria Anzaldua as I was working toward a master’s degree in humanities and social thought (35 years after getting a Ph.D. in medical science). Below I summarize my motivation for developing the four-week course and elaborate on the syllabus. References annotated in the Literature, Arts, and Medicine Database are linked. Full reading references are listed alphabetically.

Representation, the arbitrary, ambiguity

In his groundbreaking book, Orientalism, Said argues that European discourse constructed a stereotyped Arab identity-the Arab as Other-that was ideologically biased, "regularized," hegemonic, and that enabled the Western imperial project.A Said noted that boundaries are to a great extent arbitrary. Later, Said wrote more generically of stereotyping and subordinating representational practices that must be resisted; he recommended that we should think critically by positioning ourselves "contrapuntally" — from dual perspectives - imagining ourselves as geographic boundary crossers or exiles. Said noted that boundaries are to a great extent arbitrary. It struck me that these themes applied to certain aspects of the institution of medicine and patient-physician interaction, and Bradley Lewis and I co-authored a paper that discussed these analogies (Medical Intellectuals: Resisting Medical Orientalism. Journal of Medical Humanities, Vol. 25, No. 2 / June, 2004, pp. 87-108). We argued that like Orientalism, medical discourse is the cumulative effect of selecting and reconstructing "the patient" and "disease" through the lens of the medical expert. Like Orientalism, medical discourse essentializes and reduces the patient, making empathic communication between physicians and patients difficult. We described how, in contrast to "medical orientalism," several physician writers cross personal and professional boundaries and think contrapuntally in their writing and interaction with patients.

I hoped that a contrapuntal approach to considerations of medical practice and the representation of individuals as "patients" might stimulate medical students to think "outside the box" about the institution of medicine, their future professional roles and interactions. Gloria Anzaldua’s provocative book, Borderlands/La Frontera, provided an additional perspective on borderlands that intrigued me in its applicability to medical education and practice, namely, that borders are often areas of dispute, ambiguity, cultural mixing, and even danger. Students could consider borderland areas of ambiguity in medical practices and training- an exposure that is often missing in their education. Fourth year medical students, being on the border of official designation as doctors, and having a perspective on their medical school experiences, seemed particularly suited to such an approach.

 

Features of the elective:

  • Scheduled as a "full-time" month-long course in February, with no simultaneous clinical rotations or other electives permitted.
  • Meets for 2.5 hours each of three mornings per week, for four weeks. Extensive readings, and study of online art and other web materials between sessions fill out the students’ time.
  • Two short papers or creative work that responds to the course subject matter
  • View and discuss a film on the last day of class

Week 1 topics:
How does the transition from student to professional (professionalization) occur: objectification of the body, responsibility vs. inexperience, instruction in "professionalism" vs. the hidden curriculum

Interaction between professional and personal life

Week 2 topics:
Perspectives on personal-professional and patient-physician boundaries
Narrative and empathy

Week 3 topics:
What is "normal": defining disease; social construction of disability; race and race-based medicine
Difference, rejection, Otherness
Medical uncertainty

Week 4 topics:
Illness as exile
Socioeconomic marginalization and illness

Week 1 : student/professional, personal/professional

Session 1. Introductory session uses poetry and art to introduce topics of cultural ambiguity ("Day of the Refugios" by Alberto Rios, "Original Sin" by Sandra Cisneros), borders between physician and patient ("Talking to the Family" by John Stone, "Open You Up" by Richard Berlin) distancing of the sick from their own health ("Across the Border" by Karen Fiser), isolation (Edvard Munch’s paintings Death in the Sickroom, The Dead Mother).

Arbitrariness of borders, the Other: one-page excerpt from Edward Said’s Orientalism.

Session 2. Objectification of the body as students become acculturated while learning gross anatomy through dissection. Anatomy of Anatomy in Images and Words by photojournalist Meryl Levin traces this process with photographs and student journal entries. Secret knowledge not previously available to the lay public. But now this knowledge is public: Gunther von Hagens’s Body Worlds exhibit.

Student response to gross anatomy course: poem, "Apparition" by Gregg Chesney. Intern trains herself to be detached: poem, "Internship in Seattle" by Emily R. Transue.

Historical perspectives on objectifying and learning from the body:

the dead body — Rembrandt’s painting, The Anatomy Lecture of Dr. Nicolaes Tulp)

the living body-Eakins’s paintings, The Gross Clinic and The Agnew Clinic

development of technology ("Technology and Disease: The Stethoscope and Physical Diagnosis" by Jacalyn Duffin)

Compare representations (paintings) of physician-patient interaction: The Doctor by Sir Luke Fildes and Picasso’s Science and Charity.

Patient’s perspective of objectification and loss of personhood: poem, "The Coliseum" by Jim Ferris

"Professionalism": Jack Coulehan critiques current curricula in medical professionalism and discusses the hidden curriculum. "You Say Self Interest, I Say Altruism."

Difficult transition and ambiguous boundaries when medical student officially becomes an MD. Playing the role, assuming the role. Short story by Mikhail Bulgakov, "The Steel Windpipe"and Perri Klass’s introduction to Baby Doctor and essay from Baby Doctor, "Flip-flops." Klass’s essays include reflections on the interaction of personal and professional life and lead into Session 3.

Session 3. Physician perspectives on the overlap and conflict of personal and professional life; subjectivity, objectivity

Poem, "Falling Through" by Michael Jacobs.
Essay, "Language Barrier". Elspeth Cameron Ritchie.
Essay, "Heart Rhythms". Sandeep Jauhar.
Story, "Laundry". Susan Onthank Mates.
Poem, "Monday". Marc J. Straus.
Poem sequence, "The Distant Moon, I, II,III, IV". Rafael Campo.
Essay, "Fat Lady". Irvin D.Yalom

Week 2: personal/professional and patient/physician

Session 1. Discussion of The Tennis Partner by physician-author Abraham Verghese. A memoir of the author’s personal relationship with a medical student whom he is teaching. It is also a reflection on cultural marginalization and physician vulnerability.

Power relations and physical examination:
Poem, "Physical Exam". David Watts
Essay, "Naked". Atul Gawande
Story, "The Use of Force". William Carlos Williams

Session 2. Narrative and empathy

Rita Charon and Jody Halpern’s theoretical arguments that narrative competence and empathy are necessary skills for proper patient care.

Rita Charon. "The Patient, the Body, and the Self", chapter 5 in Narrative Medicine.
Jodi Halpern. "A Model of Clinical Empathy as Emotional Reasoning" (pp.85-94) and
"Cultivating Empathy in Medical Practice" (129-138) in From Detached Concern to Empathy.

Empathy versus sympathy: poem, "Save the Word". Thom Gunn

Physicians write empathy (crossing boundaries):
Poem, "I’m Gonna Slap Those Doctors". Jack Coulehan
Poem, "Red Polka Dot-Dress". Marc Straus
Essay, "Sleeping with the Fishes". Kate Scannell
Essay, "Learning to Care for Patients, in Truest Sense". Abigail Zuger

Session 3. Patient perspectives on empathy

[first paper due]

Memoir excerpt, "The Patient Examines the Doctor". Anatole Broyard. Broyard’s brilliant commentary argues for emotional engagement, however brief, as beneficial to both doctor and patient — written before the current discourse on narrative and empathy.

Story, "People Like That Are the Only People Here: Cannonical Babbling in Peed Onk." Lorrie Moore. Highlights the divide between medical policies and practices, and suffering patients and their families.

Essay, "Search for wholeness: the adventures of a doctor-patient." Tamara Dale Ball. Dual perspectives from a medical student who has diabetes.

Week 3: health/illness

Session1. Medical uncertainty
From physician perspective: Atull Gawande (essay). "The Case of The Red Leg."
Poem, "Gaudeamus Igitur". John Stone
from patient perspective:"What We Don’t Know" (essay). Gail R. Henningsen.
Poem, "Routine Mammogram". Linda Pastan

Problematizing normality

Essay, "The Meaning of Normal." Philip Davis and John Bradley.
Article, "Defining Disease in the Genomics Era". L.F.K. Temple, R.S McLeod,S. Gallinger, J.G. Wright
Essay, "What’s Making Us Sick Is an Epidemic of Diagnoses". H. Gilbert Welch, Lisa Schwartz, and Steven Woloshin. New York Times, Science Times, January 2, 2007.
Poem, "Much madness is divinest sense". Emily Dickinson. (No. 435)
Poem, "Monet Refuses the Operation". Lisel Mueller

Problematizing concept of race and race-based medicine

"How Culture and Science Make Race 'Genetic’: Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous" Celeste Condit.

Session 2. Social construction of disability
The Rejected Body: Feminist Philosophical Reflections on Disability. Susan Wendell.
Section from the Introduction: pp. 1-5.
Chapter 2. The Social Construction of Disability.

Poem, "The Magic Wand" by Lynn Manning.

Look at brief video ad online: What if the world had been designed exclusively for people with particular disabilities/impairments?

Turning the Disability Tide: The Importance of Definitions. JAMA, Jan 23, 2008. V.299, NO. 3, pp. 332-334. Lisa Iezzoni, MD and Vicki A. Freedman, Ph.D. (Iezzoni is a disabled MD on Harvard faculty)
"Medical Care Often Inaccessible to Disabled Patients." National Public Radio
"Blocked", by Lisa Iezzoni. Health Affairs, 27/1, 203-209 (Narrative Matters), 2008)

Session 3. Difference, rejection, "Otherness"
Susan Wendell. The Rejected Body, Chapter 3. "Disability as Difference."
Also, pp. 60-69 on Otherness
Optional: Chapter 4. "The Flight from the Rejected Body."

Artists represent physical difference
Matuschka Archive
Alice Neel self-portrait
Sculpture of a pregnant artist who lacks fully formed limbs: Alison Lappert Pregnant (by Marc Quinn)
Artist Laura Ferguson investigates and aestheticizes her own body, deformed by severe scoliosis.

Meaning and discussion of "neurodiversity"
Introduction to Songs of the Guerrilla Nation: My Journey through Autism, memoir by Dawn Prince- Hughes

Week 4: exile, illness, marginalization

Session 1: Exile and illness
Said, Edward W. "Reflections on Exile." Said’s classic essay on characteristics of exile and what can be learned from the exile condition.

Robert Pope. Illness and Healing: Images of Cancer. Artist Robert Pope chronicles the experience of cancer treatment, based on his own treatment for Hodgkin’s disease.

Poem, "Surgical Ward" by W. H. Auden. Inability of those who are well to imagine and identify with those who are ill or injured.
Poem, "Emigration" by Tony Hoagland. Illness as loss of country, a journey with no end in sight.

Online Frida Kahlo art that depicts her dual selves; her loneliness, isolation, stoicism, and resistance:
Self Portrait Between the Borderline of Mexico and the United States
Henry Ford Hospital
The Broken Column
Tree of Hope
Frida and the Miscarriage
Essay, "On Being a Cripple". Nancy Mairs. Incisive well-written essay about language, perception, attitudes surrounding disability-based on her early years with multiple sclerosis.

Essay, "Liv Ullman in Spring". Andre Dubus. Severely and permanently disabled in an automobile accident, Dubus gives a detailed and poetic account of his fears, loneliness, and the human connection provided by an empathetic listener.

Session 2. Marginalization
Story, "From the Journal of a Leper". John Updike. A sculptor who has psoriasis is obsessed with his physical appearance. As his condition responds to treatment, his art and relationships deteriorate.

Essay by Rafael Campo. "It Rhymes with ‘Answer’ ". Campo details how social and cultural marginalization became imprinted on his physical self.

Watch online video showing internalization of racism (3:25 - 5min): "A Girl Like Me."

Memoir by Jimmy Santiago Baca. Prologue, and chapter 8 from A Place to Stand: The Making of a Poet. Baca chronicles his alienation and despair, conditioned by a family history of social and racial marginalization, and how in prison he eventually was able to develop a sense of self-worth through self-education, cultural pride, and writing poetry.

Lee, Don. "About Gary Soto." Background of poet Gary Soto‘s early life in a poor working-class Mexican American community. Cultural loss and marginalization.
"The Levee." Gary Soto.
"Hand Washing". Gary Soto.

Story, "newborn thrown in trash and dies." John Edgar Wideman. Inevitability of a premature death.

Poem, "How to Write the Great American Indian Novel". Sherman Alexie. A clever satiric poem about how whites co-opted Indian culture, resulting in the metaphoric and actual disappearance of a people.

Susan Power. Short story, "First Fruits." Using actual history of the first Indian who was educated at Harvard University, this imaginative story by an author of American Indian heritage brings American Indian culture and contemporary American majority culture into harmony and preserves the cultural identity of the Indian protagonist.

Session 3. Film

[second paper due]

I’ve used several films over the years, most recently, The Station Agent.

Bibliography

Alexie, Sherman. "How to Write the Great American Indian Novel". In Native American Songs and Poems (NY: Dover) 1996, pp. 28-29.
Anzaldua, Gloria. Borderlands/La Frontera (San Francisco: Aunt Lute Books) 1987
Auden, W. H.."Surgical Ward". In The Collected Poems of W. H. Auden (Kingsport, TN: Random House, 1945)
Baca. Jimmy Santiago. A Place to Stand: The Making of a Poet (New York: Grove Press) 2001.
Ball, Tamara Dale. "Search for wholeness: the adventures of a doctor-patient." The Pharos. 54 (1): 28-31 (Winter, 1991).
Berlin, Richard. "Open You Up" by. In How JFK Killed My Father (Long Beach: Pearl Editions) 2004, p. 10
Broyard, Anatole. "The Patient Examines the Doctor". In Intoxicated by My Illness (New York: Clarkson Potter) 1992, pp. 33-58
Bulgakov, Mikhail. "The Steel Windpipe". In A Country Doctor’s Notebook (London: Collins and Harville Press) 1975, trsl. Michael Glenny
Campo, Rafael. "The Distant Moon, I, II,III, IV". In The Other Man Was Me (Houston: Arte Publico Press) 1994, pp. 113-115
Campo, Rafael. "It Rhymes with ‘Answer’ " In The Poetry of Healing: A Doctor’s Education in Empathy, Identity, and Desire (New York: W. W. Norton) 1997, pp. 222-254.
Charon, Rita. Narrative Medicine: Honoring the Stories of Illness (New York: Oxford University Press) 2006
Chesney, Gregg. "Apparition" In Body Language: Poems of the Medical Training Experience, Jain, N., Coppock, D., Brown-Clark, S., eds. (Rochester, New York: BOA Editions) 2006, p.27
Cisneros, Sandra. "Original Sin". In Loose Woman (Vintage Books: New York) 1994, p. 7
Clifton, Lucille. "In the inner city". In Good Woman (Brockport: BOA Editions) 1987, p. 15
Condit, Celeste. "How Culture and Science Make Race 'Genetic’: Motives and Strategis for Discrete Categorization of the Continuous and Heterogeneous". Literature and Medicine V. 26, No. 1 (2007) pp. 240-268,
Coulehan, Jack. "I’m Gonna Slap Those Doctors". In Blood and Bone, eds. Angela Belli and Jack Coulehan. (Iowa City: University of Iowa Press) 1998 p. 21
Coulehan, Jack. "You Say Self Interest, I Say Altruism." In Professionalism in Medicine: Critical Perspectives, eds. Delese Wear & Julie M. Aultman (New York: Springer) 2006, pp. 103-128
Davis, Philip and Bradley, John. "The Meaning of Normal." In What’s Normal? eds. Carol Donley and Sheryl Buckley (Kent, OH, London: Kent State University Press) 2000, pp. 7-16.
Dickinson, Emily. "Much madness is divinest sense". (No. 435)
Dubus, Andre. "Liv Ullman in Spring". In Meditations from a Movable Chair (NY: Alfred A. Knopf) 1998.
Duffin, Jacalyn. "Technology and Disease: The Stethoscope and Physical Diagnosis". In History of Medicine: a Scandalously Short Introduction (Toronto: University of Toronto Press) 1999, pp. 191-208.
Ferguson, Laura. The Visible Skeleton Project. Perspectives in Biology and Medicine, 47/2: 159-175, 2004
Ferris, Jim."The Coliseum." In The Hospital Poems (Charlotte, NC: Main Street Rag) 2004, p. 42
Fiser, Karen."Across the Border". In Words like Fate and Pain (Cambridge: Zoland Books) 1992, p. 3
Gawande, Atul. "The Case of the Red Leg." In Complications: A Surgeon’s Notes on an Imperfect Science (NY: Metropolitan/Henry Holt) 2002, Pp. 228-252.
Gawande, Atul. "Naked". New England Journal of Medicine, 353:7, August 18, 2005, pp. 645-648
Gunn, Thom. "Save the Word". In Boss Cupid (New York: Farrar, Straus & Giroux) 2000
Halpern, Jodi. From Detached Concern to Empathy: Humanizing Medical PracticeA (New York: Oxford University Press) 2001
Henningsen, Gail R. "What We Don’t Know." The Bellevue Literary Review, Fall 2004 (4/2) pp. 76-85
Hoagland, Tony. "Emigration". In Sweet Ruin (Madison, Wis.: University of Wisconsin Press, 1992)
Iezzoni, Lisa. "Blocked." Health Affairs, 27/1, 203-209 (Narrative Matters), 2008
Iezzoni, Lisa and Freedman, Vicki A. Turning the Disability Tide: The Importance of Definitions. JAMA, Jan 23, 2008. V.299, NO. 3, pp. 332-334.
Jacobs, Michael. "Falling Through" by. In Body Language: Poems of the Medical Training Experience (Rochester, New York: BOA Editions) 2006, p.49
Jauhar, Sandeep. "Heart Rhythms". In Intern: A Doctor’s Initiation ( New York: (Farrar, Straus and Giroux) 2008, pp. 95-99
Klass, Perri. Baby Doctor (New York: Random House) 1992
Lee, Don. "About Gary Soto." Ploughshares Spring, 21/1: 188-192 (1995).
Levin , Meryl. Anatomy of Anatomy (New York: Third Rail Press) 2000.
Mairs, Nancy. "On Being a Cripple". In Plaintext (Tucson: the University of Arizona Press) 1986, pp. 9-20
Manning, Lynn. "The Magic Wand". From Staring Back: The Disability Experience from the Inside Out, ed. Kenny Fries. (New York: Plume/Penguin) 1997
Mates, Susan Onthank "Laundry". In The Good Doctor (Iowa City: University of Iowa Press) 1994, pp. 9-14.
Moore, Lori. "People Like That Are the Only People Here: Cannonical Babbling in Peed Onk." In Birds of America (New York: Alfred A. Knopf) 1999
Mueller, Lisel. "Monet Refuses the Operation". In Alive Together: New and Selected Poems.(Baton Rouge: Louisiana State University Press) 1996, p. 186
Pastan, Linda. "Routine Mammogram". In Carnival Evening. New and Selected Poems: 1968-1998. (W. W. Norton: New York and London) 1998, p. 134
Pope, Robert. Illness and Healing: Images of Cancer (Hantsport, Nova Scotia: Lancelot Press) 1991
Power, Susan. "First Fruits." In Roofwalker (Minneapolis: Milkweed Editions, 2002), Pp. 111-137.
Prince- Hughes, Dawn. Songs of the Guerrilla Nation: My Journey through Autism (New York: Random House/Harmony) 2004
Rios, Alberto. "Day of the Refugios". In The Smallest Muscle in the Human Body (Port Townsend: Copper Canyon Press) 2002
Ritchie, Elspeth Cameron "Language Barrier". In On Doctoring. (New York: Simon & Schuster) 3rd ed, 2001 eds. Richard Reynolds, John Stone, Lois LaCivita Nixon, & Delese Wear, pp. 378-379
Said, Edward. Orientalism. (1978). 1994 Reprint. (New York: Vintage Books) p. 54
Said, Edward W. "Reflections on Exile." Reflections on Exile and Other Essays (Cambridge: Harvard University Press) 2002.
Scannell, Kate. "Sleeping with the Fishes". In Death of the Good Doctor: Lessons from the Heart of the AIDS Epidemic (San Francisco: Cleis) 1999, pp. 23-48.
Soto, Gary. "The Levee." New and Selected Poems (San Francisco: Chronicle Books) 1995
Soto, Gary. "Hand Washing". Junior College (San Francisco: Chronicle Books) 1997
Stone, John. "Gaudeamus Igitur". JAMA, 249: 1741-1742 (1983)
Stone, John. "The Good-bye, Good-Morning, Hello Poem". In Where Water Begins (Baton Rouge: Louisiana State University Press) 1998, p. 16
Stone, John. "Talking to the Family". In Blood and Bone. eds. Angela Belli and Jack Coulehan (Iowa City: University of Iowa Press) 1998, p. 79
Straus, Marc J. "Red Polka Dot-Dress". In Symmetry (Evanston: TriQuarterly Books/Northwestern University Press) 2000, p. 6
Straus, Marc J. "Monday". In Symmetry (Evanston: Triquarterly Books) 2000, p. 38
Transue, Emily R. "Internship in Seattle" In Body Language: Poems of the Medical Training Experience, Jain, N., Coppock, D., Brown-Clark, S., eds. (Rochester, New York: BOA Editions) 2006, p.89
Temple, L.F.K., McLeod, R.S, Gallinger, S., and Wright, J.G."Defining Disease in the Genomics Era". Science. 293/3 August, 807-808 (2001)
Updike, John. "From the Journal of a Leper". In Problems and Other Stories (New York: Alfred Knopf) 1976.
Verghese, Abraham. The Tennis Partner (NY: Harper Perennial, 1999) (HarperCollins, 1998)
Watts, David. "Physical Exam". In Taking the History (Troy, Maine: Nightshade Press) 1999.
Welch, H. Gilbert, Schwartz, Lisa and Woloshin. Steven. "What’s Making Us Sick Is an Epidemic of Diagnoses". New York Times, Science Times, January 2, 2007
Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability (New York and London: Routledge, 1996
Wideman, John Edgar. "newborn thrown in trash and dies." In All Stories Are True (New York: Pantheon/Vintage) 1992. pp. 120-128.
Williams, William Carlos. "The Use of Force". In Robert Coles, ed. The Doctor Stories. 1984
Yalom , Irvin D."Fat Lady". In Love’s Executioner (New York: Harper Perennial) 1989, pp. 87-117.
Zuger, Abigail. "Learning to Care for Patients, in Truest Sense". New York Times, 11/27/01

 

Narrative Genetics: Following the Trail of Spit

October 30, 2008 at 2:51 pm

Genetic Modification -  Swirl of DNA fragments suggesting the mixing of genes in genetically modified organisms.   Photograph 2003. Guy Tear, Wellcome Library, London

Commentary by Marsha Hurst, Ph.D., Narrative Medicine Program,; faculty member and Research Scholar at the Institute for Social and Economic Research and Policy, Columbia University; co-editor with Sayantani DasGupta of Stories of Illness and Healing: Women Write Their Bodies (Kent State University Press, 2007)

 

"When in Doubt, Spit it Out." (1) It was fashion week in New York City, and the DNA testing company 23andMe was taking advantage of the party mood to promote its spit-based DNA testing product, now being offered at a discounted rate of $399.A Normal business at 23andMe is not conducted at celebrity spitting parties but online, where you can order a test kit, send in your saliva, and a month later get the pieces of an 89-gene DNA puzzle, that can be building blocks for family ancestry stories and future illness narratives.A In addition to connecting with past and future, this 2.0 version of the narrative, situates you as part of a current social network so that your story can be shared with others in multiple configurations of family and genetic connectivity.A The company "democratizes" your personal results by making them invitations to network, as in "You are invited to join the group Slow Caffeine Metabolizers."

I am fascinated by this story of the 23andMe spitting party and its place in an area of study, research, and analysis some now term "narrative genetics": the exploration of how genetic understanding and belief are expressed through story, and of the impact of those narratives on our person, our society, and our culture.A In order to better understand narrative genetics, I have organized, with the help of Sayantani DasGupta, and our colleagues in the Narrative Medicine Program at Columbia an interdisciplinary faculty seminar on Narrative Genetics. The seminar, open to the public, is sponsored by ISERP-the Institute for Social and Economic Research and Policy at Columbia University Topics include genetic narratives in film, reproduction, advocacy, clinical practice, family narratives, disease narratives, and genetic narratives of race.

What are the stories we tell about ourselves, our identities, our families, our communities, our society, and how have these stories become "geneticized."?A Narrative genetics is about how and why we use genes to tell these stories.A And what these genetic narratives then, in turn, can teach us about the way our society explains health and illness, personhood and community.A Certainly for much of this new millennium we have, as anthropologist Kaja Finkler had already noted in 2001, "seen an explosion of research in genetics and on genetic inheritance," and with that an explosion of popular interest-and popular expression. (2)A Amy Harmon’s series on "The DNA Age" in the New York Times only confirms a mainstream fascination with genetic stories, and with the essentializing "me-ness" of these reports.A These stories about genes are about our uniqueness-but also connect us with our commonness in ways that appear to be reassuring, even if they are surprising.A Searching for who we are through genetic testing has become a construction for the American "roots" narrative.

Narrative Genetics as Recreation

AA year ago, prominent scholars published an article in Science on "The Science and Business of Genetic Testing," addressing a concern that ancestry genetic testing was treated recreationally-and promoted as such commercially. (3)A Testing results told a genetic family story that was not only simplistic, incomplete and inaccurate, but also had important personal and policy implications.A "Recreational genetics" came to mind again as I sat down to write this blog about narrative genetics and was diverted by that 23adMe spitting party headline.

Aside from the fascinating frivolity, the contextualizing of personal genetics in recreational and social space, the party report also tells a familiar story of health commerce and medical marketing.A Imbed a product in the world of celebrity, of glamour, of wealth, and it will sell to those who aspire to this world.A And because both celebrity and marketing are about making private lives public, it reverses much of the focus of genetic public policy, which has been on the privacy of genetic information and the protection of that privacy. (4)

Besides commercial use, public genetic narratives have been widely used for advocacy purposes-particularly to generate funding for research into genetic conditions.A In the 23andMe narrative entrepreneurial success and genetic disease advocacy are intertwined. Sergey Brin, a co-founder of Google and the husband of Anne Wojcicki, co-founder of 23andMe, has not only had his DNA tested by 23andMe, but took his results a step further than the party or the company’s social network:A Brin announced on his personal blog, "Too," (Sept. 18, 2008) Athat he had a mutation of the gene LRRK2 gene, known as G2019S, which increases his risk of getting Parkinson’s disease, a condition from which his mother, who also carries the gene, suffers.

Brin tells his family story as a narrative of personal genetic risk, of family caring, and of genetic disease advocacy.A It is also a familiar American narrative in which great wealth drives medical research.A The family has already endowed a professorship to support research into Parkinson’s and Brin has framed the personal knowledge he gained through 23andMe testing as an "opportunity" to support advocacy and research into Parkinson’s.A In fact the company 23andMe also supports research into genetic conditions by encouraging non-moneyed contributions:A Spitting parties are encouraged to gather "anonymized" saliva samples for genetic research purposes.

Genetic Narratives as a Public Good

A parallel project to the 23andMe corporate enterprise -the Harvard-based, but privately funded, Personal Genomes Project -also constructs personal genomic stories as public information, but for the larger "good of the general public" (see Mission Statement). As an "experiment in public access" (5), volunteers are recruited to share their "genome sequences, related health and physical information, and [to report] their experiences as a participant of the project" (PGP Mission Statement). The first results of this Project were recently released. (6) Celebrity in the non-profit academic world is constituted somewhat differently: The PGP-10 — the first 10 volunteers-include a mix of mainly science and medicine entrepreneurs, academics, and investors, led by George Church, a Harvard professor of Genetics. AAMembers of the PGP-10, like the celebrities at 23andMe parties, are expected to inspire by example. In keeping with the academic and public responsibility narrative, however, the 100,000 volunteers accepted into the PGP must go through a complicated informed consent process, including a test of basic genetic knowledge. Is there is a hint of an old "positive eugenics" narrative here? Is there a challenge to the concept of informed consent when consent is given to a social experiment where risks can barely be enumerated?

Both the for-profit and the not-for-profit versions of making the personal genome story public beg the complex question of whether, in this genomic age, anonymity is even possible. Our body parts and bodily fluids scream out our identity in any disembodied state. The Personal Genome Project openly questions whether "guarantees of genome anonymity" are even "realistic." As a society we then must consider the implications of constructed genomic narratives, in the same way as the constructed narratives of race, gender, and disability in America are being critiqued.

Genetic Narratives as Advocacy

ATo the extent that genetic stories are personal, familial, entrepreneurial, or even activities of individual choice and private financial means-they are in the "private" sector, although personal genome stories are both privatized commercially and publicized in social and socially "responsible" spaces.A Genetic narratives that empower the private funding of scientific research enter a kind of private-public realm with unclear and easily transgressed borders. His Brother’s Keeper, the story of how Jamie Heywood directed an all-out war of "guerilla science" to save his brother from the lethal ravages of amyotrophic lateral sclerosis (ALS), illustrates the power of a family genetic narrative that drives an extraordinary research effort.

In our Narrative Genetics seminar, we will hear a very different story: Huntington’s disease as a family narrative of illness and risk.A Alice and Nancy Wexler’s work combines writing, research, and advocacy in a narrative of families and communities that has guided scientific genetic research; and, as an integral part of that work, they have told the stories of the meaning of this disease for families and communities in vastly different places, cultures, and times.(7)

As a health advocacy educator I am keenly aware of the power of personal stories to drive public policy, and stories of the impact of genetic disease on families and communities have been a compelling engine for organizing and action. Some have advised caution as we take public action based on private narratives (8), but we also know that our personal stories can compel us to public beneficence. Rachel Grob, who has elicited the stories of parents of children with cystic fibrosis, will discuss in our Narrative Genetics seminar how parent advocacy-and narratives of "urgency"-can impact policies like newborn screening that have become public "health" mandates.A Gaining thoughtful perspective and understanding of these genetic stories and their impact will be increasingly important-and increasingly difficult-as the genetic explanatoryA paradigm gains force through genetic knowledge and power through use.

The tension between narratives that tell a story of the centrality of the individual in society and narratives that tell a story of the centrality of the public interest is present-if not explicit-in the 23andMe story. AThe states of New York and California have told 23andMe and other biotech companies-including Navigenics and deCode Genetics -that sell genetic tests to the public (13 companies in California and 31 in New York) to "cease and desist" these direct sales. (9) The move to regulate commercial genetic testing is countered by a growing biotech industry that argues genetic information is part of an individual’s right to her own personal information. Do genetic tests disclose medical information or personal information, and is there a meaningful line between the two?A The public policy challenges to private commerce in genetic testing cross that infinitely contestable American frontier between private enterprise and public responsibility in health care.

Family Stories

AOne of the presentations in our Narrative Genetics seminar will be by a research group with which I have been working. (10) We have been asking pregnant women to tell us their family stories:A What does heritability mean to them?A What do they think is passed on to their children, and how? Our primary purpose is to develop ways to educate genetic counselors in "narrative genetics," teaching them to elicit and honor the stories their clients tell about inheritance in their families and their cultures. But our findings also remind all of us who are sometimes overwhelmed by the power of the genetic paradigm-and the potential of genetic science- that when we tell our own stories they may be more complex and nuanced cultural stories, stories about heritability in which genetics plays a very narrow role.A When the women we interviewed told their own family stories, they clearly connected with ethnic, racial, religious, geo-cultural,and socio-economic groups but their stories of community were not told through a genetic lens.

So I will end this blog entry with a family story.A When I was eight, and my mother eight months pregnant, a family friend in the medical profession convinced her that if she spit into a test tube, and the saliva looked brown under a microscope, she would give birth to a son-a much-valued outcome for a family with two daughters. My new sibling was, indeed, male, and the saliva had, indeed, been brown-but so, confessed my mother, had the Hershey chocolate bar she secretly consumed before spitting. It has become a family story that evokes an entire "photo album" of my young parents, happy and healthy in post-War America, and expecting ever more of the same. The story is set in a climate so optimistic that they could believe in a Stevenson presidency. Spitting into the test tube was part of the fun-and part of the hope of a post-war America.A We take for granted today the ability of genetic science to tell us the sex of a fetus, but in 1954 it was part of a narrative of scientific promise, a story in which science is put to work as commercial technology, making every home hum with appliances.A It was also, of course, a story of gender and family, imbedded very much within the world of the Feminine Mystique, a world in which a family without sons was an incomplete tale.

References

1. Allen Salkin, New York Times, Sept 14, 2008
2. Kaja Finkler, "The Kin in the Gene: The Medicalization of Family and Kinship in American Society," Current Anthropology, Vol 4, No 2 (April 2001), p. 235.
3. Deborah A. Bolnick, Duana Fullfiley, Troy Duster et al., "The Science and Business of Genetic Ancestry Testing," Science, Vol 318 (19 October 2007) [accessed October 18, 2007].
4. For example, the Genetic Information Nondiscrimination Act, signed into law last May after over 12 years of unsuccessful attempts at passage.
5. George Church. Genomes for All, Scientific American , January 2006, p.53 [accessed 10-22-08].
6. Amy Harmon, "Taking a Peek at the Experts' Genetic Secrets," New York Times, October 19, 2008.
7. See, for example, Alice Wexler's books, Mapping Fate (University of California, 1995) and The Woman Who Walked into the Sea (Yale University Press, 2008), and her article "Chorea and Community in a Nineteenth-Century Town," Bulletin of the History of Medicine - Volume 76, Number 3, Fall 2002, pp. 495-527.
8. See also Rebecca Dresser's book, When Science Offers Salvation: Patient Advocacy and Research Ethics (Oxford, 2001) as well as John McDonough's classic article in Health Affairs, "Using and Misusing Anecdote in Policy Making".
9. Andrew Pollack, "Gene Testing Questioned by Regulators," New York Times, June 26, 2008.
10. This group is based at Sarah Lawrence College and funded by a Jane Engelberg Memorial Fellowship award.

Health: Stories in the Service of Making a Better Doctor By PAULINE W. CHEN, M.D. Narrative medicine employs short stories, poems and essays to build empathy in young doctors.

October 25, 2008 at 11:20 am

Article on literature, narrative, and medicine, by physician author, Pauline Chen-withA a link to a "Well" blog that drew comments on the article.

Disability In The Mirror of Art

August 31, 2008 at 3:38 pm

Stream of Consciousness

Commentary by Tobin Siebers, V. L. Parrington Collegiate Professor, Professor of English Language and Literature, and Art & Design, University of Michigan

Mirroring Nature

Art is the mirror of nature, it has often been said, but what of disability reflected in the mirror of art? Supposedly, the fabled perfection of art began by mirroring the faultless beauty of nature. Greek and Roman art focuses almost always on the beautiful physique, and this focus, so difficult to shake, endures until the modern age. Johann Joachim Winckelmann claims in Thoughts on the Imitation of Greek Works in Painting and Sculpture that the beauty of Greek sculpture descends directly from the beautiful nature of the Greek body, beautiful nature and healthy bodies still being for him practically synonymous. Similarly, Alexander Baumgarten conceives beauty in his Reflections on Poetry as the mental harmony felt by the beholder before a body. The experience of aesthetic objects organizes in itself the internal consistency of the mind. Aesthetics begins implicitly, if not explicitly, as a mode designed to perfect human beings. Today, some thinkers continue to believe that images trap the psyche in the illusion of perfection, and although this perfection may prove to be a mirage, it has tenacious durability. Jacques Lacan speculates in "The Mirror Stage" (Ecrits 1966) that the human ego discovers at an early age the false image of its own perfection in the mirror. The small child, barely able to stand, nearly incapable of controlling its movements, looks into the mirror to discover the static but masterful image of a mature and able bodyaa narcissistic image of the ego that the child will never be able to live up to.

The Body in Pieces

Disability breaks the mirror of art as traditionally conceived by putting into question the art object's relation to perfection, but the beauty reflected in the broken mirror grows more beautiful as a result. The more we enter the modern age, the stronger the equation between art and disabilityaand to the point where we sometimes perceive the presence of art itself in the image of disability. Disability, disease, and injury have become the figures by which aesthetic beauty is often recognized. Hal Foster associates wounding and injury with an aesthetic realism born of the trauma of modern existence (Return of the Real 1996), while Linda Nochlin claims that the modern in art is made out of the loss of wholeness, embracing the impression that fragmentation reigns, connections in life have been shattered, and permanent values have disintegrated (The Body in Pieces, 2001, 23-24). She traces the essence of modernism to the French Revolution as the historical moment when the body in pieces becomes for modernity a "positive rather than negative trope" (8). Leonard Barkan's Unearthing the Past (1999) attributes the origin of modernity's appreciation of the fragmentary, broken, and injured to an earlier period, in the unearthing of classical fragmentary statuary in Renaissance times, calling the modern idea that fragments have "value independent of any potential for being made whole again" "a category shift" (122), one that reorients the "whole project of making art in response to broken bodies" (209). In an increasingly global world, modern art moves away from cultural languages to the biological diversity of the body, and disability marks the outer boundaries of the body diversely conceived. In fact, so strong is the equation between art and disability that we begin to view past works of art in terms of the irrepressible image of disability given by the modern world.

Nevertheless, the force of specific historical arguments, such as those by Foster, Nochlin, Barkan, and others, seems compromised by the fact that art has a longstanding relationship with the human desire to understand the human differently. The making of any object, out of any substance, by a human being is also in some way a making and remaking of the human. The object of human craft is the human being, and the most immediate sign of the human and the material out of which we craft it is the human body. If art and the human are inseparable, it is because art is the process by which human beings attempt to modify themselvesaand this process is a crucial factor in human history. Moreover, when art expresses the desire to perceive the human differently, it must consider human beauty differently as well, and if recent art shows anything, it is that beauty has become a radical concept by virtue of its preoccupation with the disabled body. Beauty is other todayaand like no other time in human history.

Mirroring Disability

The usual effect of reflecting on disability finds disabled people looking into the mirror and dreaming of ability. Putting disability in the mirror of art, however, discovers a different mode of reflection. A brief look at two paintings may help to describe the effect of combining disability and aesthetic value. Both paintings engage disability in relation to self-reflection, asking how art works put disability in the place of the beholder's mirror image. The first and earlier painting does not take disability as its explicit subject matter, although it is tricky, thanks to the centrality of disability to the ambition of art, not to read it that way. The second painting is the work of a disabled artist, and it takes her experience of disability as its theme. Nevertheless, the symbolism of the painting makes it difficult to reduce the content only to disability, suggesting that disability now claims a broader symbolic dimension touching on human imagination and self-transformation.

Two Bathers, or Dina, Back and Profile by Aristide Maillol has many typical features associated with his work (see Bernard Lorquin, Maillol Peintre, Paris: RMN, 2001, 166-67). The woman or women are fleshy, with round stomachs and heavy thighs; their breasts are small; and they wear their hair up in a twist. The nondisabled woman lies with her back to the beholder in the grass next to a pool. The armless and legless woman floating on the surface of the pool, whether the reflection of the nondisabled woman or her twin rendered limbless by immersion in water, faces the beholder. Thus, the painting unfolds a fundamental ambiguity that ends by confirming the importance of disability in modern art. The title asks the beholder to decide whether the painting represents one or two women, but the decision cannot be made absolutely without destroying the defining symbolism of the work. The conceit is to render the back and profile of Dina Vierny as an encounter between two bathers, providing the experience of volume given by sculpture, but the unity of the human body renders the conceit problematic in the absence of a mirror, explaining why the painting requires the presence of water as a possible reflective surface.

Reflection is the master trope of the painting, but this trope is anchored by the representation of disability, whether the work portrays one or two women. If the painting includes two women, it shows them reflecting on themselves in comparison to one another. Whether the encounter is erotic is not clear, but the image demands in any event to be read as a scene of desire. Either the women desire to possess one another or to be one another, producing the conundrum of modern identity recognized by feminist thinkers in which women are pitted against one another as they judge their bodies either superior or inferior. Here the fragmentary form of the woman in the pool signifies that crucial physical differenceathe difference that demands to be read as either the superiority or inferiority of one figure. If the painting includes only one woman, it pictures a woman examining her reflection in a poolathe archetypical scene of narcissism. But here the archetype fails because the reflection is not more perfect than the original. Narcissus does not fall in love with his better. Or, perhaps, the reflected figure is the more perfect: disability in the mirror of art revolutionizes the idea of perfection to include the impairment of foreshortened limbs.

The riddle of Maillol's painting is, at the very least, to move between these two interpretations, but one idea appears to be constant, whether the painting depicts two women or one: the work presents a confrontation between ability and disability. The figure in the foreground is able-bodied, but the figure in the background, because of the immersion in the water, appears as if her limbs are cut off, despite the fact that there is no reason why a reflection in water should automatically give the image of amputation. Rather, a more informed interpretation understands that the woman in the pool mirrors Maillol's embrace of the tradition of fragmentary classical sculpture and its definition of beauty. In this tradition, the loss of limbs demands to be understood as the essence of beauty. Maillol copies the beauty of the Venus de Milo here, as he does elsewhere (see his last sculpture, Harmonie, 1940-44, a bronze statue of an armless woman), capitalizing on the modern tradition of representing beauty by incompleteness, breakage, and disability. If there are two women in the painting, the disabled one is named the more beautiful, as if Maillol wishes to contrast an aesthetic, fragmentary, and broken beauty to a lesser, intact beauty. If there is one woman in the painting, she appears to imagine her form more perfectly as incomplete or disabled, as if she aspires to the legendary beauty of the Venus de Milo. In both cases, disability represents the aesthetic value and the summit of what beauty might achieve. The equation between art and disability found throughout modern art is confirmed by the fact that there is really no way to interpret the incomplete figure as other than beautiful.

Reflecting on Disability

Susan Dupor‘s Stream of Consciousness, shown above, shows a woman swimming downstream in a narrow river surrounded by lush vegetation, her reflection lightly visible and doubling her in the water around her. She is not, however, looking at the reflection. Her eyes are closed, and she seems to be sleeping, so relaxed and taken with the inner life of consciousness as in a dream. Only the appearance of nine hands rising out of the surface of the stream startles the tranquil scene. The hands mirror the hands of the swimmer, as if to mimic her future strokes as she advances downstream, but the painting is not an exercise in cubism, blurring, or trompe-l'oeil. Its goal is not to depict motion but thought, as the work's title indicates, for Dupor is deaf, and this painting, like many others by her, includes multiple hands as a method for expressing the presence of sign language. The stream in which the swimmer courses represents a stream of consciousness expressed in hand signs.

Although disembodied hands may seem to eyes untutored by Dupor to have a chilling effect, as if severed hands or the hands of strange beings were reaching out around the primary figure of the painting (see also Courtship or Halcyon), the effect here is not macabre because the hands are neither surrealistic nor gothic. They clearly belong to the swimmer, and they express a world in which she is deeply absorbed. Nor does the mirroring of the swimmer elicit a potentially damaging encounter in which two women judge one another's physical beauty as superior or inferior. The mirror image suggests self-reflection, but in the absence of narcissism, because sign language mediates the action of self-reflection. The swimmer is not self-absorbed but absorbed in languageaa language at once natural to her and artificial: the language of hand signs is both a part of the river and its natural surroundings and a social artifact used for communication with other people. More important, the work represents sign language with multiple disembodied hands, invoking the idea of fragmentary statuary, as in Maillol, but pushing the tradition of broken beauty in a new direction. Rather than representing beauty by removing body parts, Dupor's painting multiplies them, suggesting that disabled bodies possess a beauty and amplitude previously ignored. The swimmer flows through a world in which perfection does not provide the only standard for human ability and beauty. Spread out before her are the living symbols of a beautiful and expressive future defined by a radically different conception of the human body and mind.

Disability as an Aesthetic Value

Art's desire to transform the human revolutionizes beauty by claiming disability as the form of biological diversity with the greatest potential for artistic representation. The figure of disability checks out of the asylum, the sick house, and the hospital to take up residence in the art gallery, the museum, and the public square. Disability is now and will be in the future an aesthetic value in itself.

Teaching Medical Listening Through Oral History

July 24, 2008 at 8:46 pm

The story of the Bhagvadgita.

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."

Conclusion

"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)

Endnotes


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.

Teaching Film: A Perspective From Narrative Medicine

June 13, 2008 at 9:32 am

Film Reels

Commentary by Maura Spiegel, PhD; Associate Professor of English, Columbia University; Core Faculty, Program in Narrative Medicine, Columbia College of Physicians and Surgeons

Maybe it's because classrooms are now routinely video-equipped, or because, as an attention-challenged culture, most of us have come to expect power point or other visual "enhancements" in the lecture hall, or because movies can be so efficient in conveying an idea, or maybe it's simply because we love them so very much, that movies are being used more and more commonly in medical and nursing schools, in Clinical Practice courses as well as Medical Humanities courses. One approach used in Clinical Practice courses is to show short clips of exemplary clinical scenarios from feature films, followed by questions and discussion, and sometimes by role-playing. A favorite teaching text in this context is the 1991 film, The Doctor (dir. Randa Haines). A didactic film, The Doctor tells the story of Jack McKee, played by William Hurt, a highly skilled surgeon with a lousy bedside manner, superficial relationships with his colleagues, a troubled marriage and a frail connection to his young son. In the course of the film Dr. McKee is diagnosed with and successfully treated for laryngeal cancer, and as a result of this experience, he changes, develops a new sense of empathy, improves his relations not only with his patients and colleagues, but with his wife and son.

A Topical Approach To Teaching The Doctor

Matthew Alexander has developed a series of ingenious and doubtless effective exercises to teach The Doctor (see his article, "The Doctor: A Seminal Video for Cinemeducation"). He excerpts scenes from the film that exemplify the insensitive surgeon's behavior in a large teaching hospital. In one such scene where Dr. McKee makes attending rounds, he and his residents enter the room of a young male survivor of a suicide attempt. When they enter, McKee subtly gestures to the chaplain who is talking to the boy, to take his leave so that the doctors can do their work. The chaplain promptly gets up and makes an exit. After the doctor bombards his residents with questions to which they eagerly respond, McKee gets around to asking the patient (who had jumped from a fifth floor window) how he's doing. In response to the boy's expression of shame at his failed suicide, McKee advises him that "next time" if he wants to "inflict some real punishment on himself" he should "try golf."

After screening the clip, Alexander poses the following questions:
1. What is your experience of hospital hierarchy?
2. What are some ways that teaching rounds can be done to be sensitive to patients' needs for privacy and respect?
3. When is humor appropriate in the medical setting? When is it not appropriate?

Another short scene presents Dr. McKee and his attractive wife (Christine Lahti) in their car returning home late one evening for a quiet dinner. When he receives and answers a page, his wife expresses mild frustration.

Matthew Alexander's discussion questions:
1. What stereotypes does this clip reflect about the medical marriage?
2. What are some common challenges faced by physicians in balancing their work and home lives?
3. What strategies can physicians employ to protect personal time?

I expect that these exercises generate meaningful discussion and a productive exchange of practical approaches to real-life concerns. Without discounting the value of this use of the film, a Narrative Medicine approach to a film like The Doctor differs sharply in strategy and objectives.

A Narrative Medicine Approach To Teaching The Doctor

We undertake a discussion of the film as whole, as a story, using narrative skills to examine the characters, their trajectories, to follow their stories and engage them within their narrative context before drawing connections to the viewer's context. (A narrative skill we all bring to movie-watching is holding details of the story in mind that may not become meaningful until later in the story while responding to what's happening in the moment. Part of our task is exploiting that skill.)

A premise of Narrative Medicine is that attentiveness to how stories are told can make you better at considering a patient's story -or another caregiver's story or your own. It can help you identify what pieces of the story might be missing, what more you'd like to know, or what doesn't seem to fit. Noticing where a story begins and ends, who's included in the story, whether or not it runs along a familiar plot line, how the teller's affect changes in the course of the telling, etc., these are habits of mind for some people and acquired skills for others.

A discussion of The Doctor in a Narrative Medicine context might go in any number of directions. Unlike the exercises above, we would not rely upon isolated clips but rather would present the entire film with discussion to follow. The discussion might begin with the question:

What happens to Jack McKee in the course of the film?

[And here I offer a sort of simulation of the kinds of answers that might emerge in discussion]

McKee allows himself to feel and recognize his own genuine vulnerability, to admit to feeling afraid and to needing others. Early in the film, after his diagnosis, we see that he cannot tolerate his need to be cared for; indeed, such feelings enrage him; he demands that people stop giving him "those caring looks;" he shuns a colleague's offer of sympathy; he isolates himself from his wife after belatedly informing her of his diagnosis.

A facilitator might then pose the question:

Does the film suggest that this inability to tolerate his own needs and desires to be cared for might be tied in some way to his identity as doctor or more specifically as a surgeon?

And here someone might comment on the cliche idea of surgeons being macho, and this could lead to a discussion of cliche in the film more broadly. Someone might object that in fact being a surgeon requires a certain kind of confidence and that the specialty attracts a certain personality type. Another might suggest the film portrays Jack McKee as not just confident but smug -and heavily defended against feeling too much for his patients. Here someone might remind us of some of McKee's comments to his students, such as his observation that the unnatural act of cutting into someone's body requires the dampening of "natural feeling," or, even more to the point, his assertion to his students that caring can interfere with a surgeon's judgment. And here the further observation might arise that in medicine we sometimes encounter a hostility to introspection altogether -as feminizing or "touchy-feely," or a sign of vulnerability that is institutionally disallowed.

At what point are these strategies of McKee's presented as problematic?

For one thing, the filmmaker allows us to see the negative effect of his manner on patients, how they feel degraded, mocked, unseen. His behavior toward a nurse he works with is a complicated mix of flattery and insult - as he displays his bravado for her special appreciation. We might then discuss one or more of these scenes in detail.
Does the film present a key turning point for Dr. McKee?

Someone might observe that McKee's suspension of empathy as an effective medical strategy receives its first blow when he is preparing for his biopsy; we observe just how terrified he is -terrified, it seems, of becoming one of those objectified bodies he cuts into. Someone else might point to the wordless sequence that follows upon the announcement of the death the night before of one of the women McKee knows from the Radiation waiting room. After an exchange with his new friend June, a young woman dying of a brain tumor, the camera traces the looks exchanged among the small cohort of patients as they absorb the news that one of them has died. A young man with a tracheotomy struggles to cry; June looks at him, takes in his suffering; the camera moves to take in Dr. McKee, looking too, and looking at June -at her compassion for the young man, her sharing in his sadness. The scene, the free exchange of looks, feelings, recognition, separateness, mutuality, connectedness, lasts a minute or two, ending with McKee, having taken this all in, having really apprehended another's pain, the subjecthood of another, looking down -retreating into himself. We wonder what he is feeling, if he is allowing himself to feel his own pain.

To my mind the empathic reaction to someone's suffering is one of the most powerful film moments, indeed it's a rare image, despite the fact that suffering is so commonly represented in the movies. In this sequence we respond to the face of the suffering and weeping young man, but we respond also to the faces of those who feel for him, who are compassionate him. As viewers we can enter into the subject position or feel with both positions. Witnessing the power of a response to another's suffering or sadness has special poignancy in the medical context (of course). I believe I can make the claim -without unfolding an entire theory of psychological process- that caregivers are sometimes able to process experiences of their own through attending closely and reflectively to such scenes. Such representations of suffering are pliable and in some sense freeing; you can immerse yourself in them because you don't have someone reacting to you. (For more on this idea, see Heiserman, A. and Spiegel, M (2006) "Narrative Permeability: Crossing the Dissociative Barrier in and Out of Films", Literature and Medicine, Vol. 25, no. 2, pp.463-474.)

And finally, how does Dr. McKee's behavior with his patients change in the course of the film?

Before having his own experience as a patient, McKee would not have allowed himself to go near the state of neediness that he himself experienced anticipating his biopsy; instead he would have made a snide joke, as we saw with the suicidal young man. Late in the film, however, we observe Dr. McKee taking in and acknowledging the somber concern of a patient before transplant surgery; he allows the patient recognition and offers a sense of mutuality. We feel McKee apprehending the other -and we sense that in doing so he enhances his own inner world.

Although in some ways a reductive film, The Doctor offers an opportunity not only to discuss the importance and benefits to the patient and to the caregiver, of being present to others and to oneself in this work that is demanding in ways no other kind of work is. But even more significantly, I think, in discussing the film we in fact already advance these aims. That is, being present to others (and to oneself) can be cultivated in the medical setting, but perhaps not with practical exercises (or not with those alone), rather by cultivating groups with a facilitator to discuss films, read together, write together, and listen to one another. In speaking together about what is so strangely unspoken in hospitals,-suffering, sadness and death-caregivers can engage in authentic discussions that create a different space within the hospital. Such discussions can shuffle hierarchies or at least re-inform them, and they can promote the practice of using film or fiction or writing as a resource for self-care. (See Irvine, C. (2009) "The ethics of self-care." In Cole, T., Goodrich, T.J., and Gritz, E. (Eds.), Academic medicine: in sickness and in health. New York, NY: Humana Press.) This may sound like an entirely unrealistic aspiration, except that it is already happening in so many medical centers. An hour once or twice a month can work wonders.

Movies are of course also taught for their topicality. Films that address issues of gender, transgender, sexual orientation, nationality, race, etc. are introduced into curricula to raise awareness and build so-called "cultural competencies." And more and more film is becoming useful to ethicists for examining topics like organ transplants, genetic engineering, end of life issues, etc. where decisions made by characters can be treated as case studies or problem sets.

Narrative Medicine takes up some of these issues (look for forthcoming work in Narrative Genetics, for example) but we differ in our effort to exploit the fact that good movies communicate in how they are told. Calling viewers' attention not only to how a movie makes them feel but to how those feelings are aroused by the filmmaker is another habit of mind we strive to cultivate in caregivers, but I haven't space here to explore this approach.

We also aim to harness the enormous emotional power of movies. Few approaches to film in current film theory take the feelings that attend or that are provoked by film seriously, despite the fact that emotions elicited while watching film feel very real to us. These are emotions with depth, emotions we have felt before, and are inexorably attached to specifics within the narratives of our own lives. In Narrative Medicine we are developing pedagogical strategies for pursuing this relatively unexamined aspect of the movie-watching experience. One of our aspirations is to offer strategies for using movies as tools of introspection.

A literary commonplace (first observed by Aristotle) proposes that we are more prone to sympathize with fictional characters than with real people. Many theories have been floated for why that might be - if it is true -and here is one more: in the psychic world, one might say that making a character fictional is a way of making it real.

Doctors and other healthcare providers need a venue, an opportunity to engage narratives that bring into conscious existence what they encounter day in and day out.

Children of a Lesser God at Oxford

May 1, 2008 at 11:21 am

Actors performing 'Don Guzman' to an audience of deaf-mutes using sign language. Wood engraving by G. Durand, 1877.

Commentary by David Henderson Slater, M.D., Consultant in Neurological Disability and Rehabilitation Medicine, The Oxford Centre for Enablement, Oxford, England; and Laura May and Dora Steel, Class of 2010, University of Oxford Division of Medical Sciences

A faculty perspective: Why should medical students study literature, film, and the visual arts?

Why should doctors know about the arts? Is it just to have a rewarding interest away from a busy professional life? Or is it simply part of being a rounded personality, to be able to engage in enlightened conversation at a dinner party? Although there is a long tradition of doctors who have a ‘second career’ as artists, (Chekhov and Keats are obvious examples), in Britain medical training has become very scientifically driven. Medicine here is usually an undergraduate degree, often with an intermediate year of science leading to an additional Bachelors degree before qualification after a further three years. Few medical students have previously studied an arts subject to degree level (I had, but that is relatively rare). So most newly qualified doctors have had a very scientifically oriented training.

In the last few years in the UK there has been an increasing awareness of the value of the arts as a part of the formation of a rounded doctor. In some ways this represents a return to traditional values. Most entrants to medical school were traditionally from privileged sections of society, privately educated; a ’rounded’ student with a broad education, along the lines of the Corinthian ideal, could have been assumed. That has been less true in the last twenty or thirty years. And it has been observed that this lack of a sense of values and interpretations beyond the purely scientific is to the detriment of Medicine and its practitioners. As a consequence there has been increasing interest in making the undergraduate medical curriculum broader than a purely scientific training in Medicine. Whereas the old medical syllabus was tightly controlled and restricted, we now have optional modules as part of the undergraduate degree; these are known in Oxford as Special Study Modules. These last from four to six weeks. Students here choose them in their fourth and sixth year of study.

I work as a specialist doctor in a centre for people with life-long disabling conditions - at the Oxford Centre for Enablement (OCE), which is part of the Nuffield Orthopaedic Centre, one of the Oxford teaching hospitals. We have close links with both the University of Oxford and Oxford Brookes University. Our patients in OCE have a wide variety of chronic neurological conditions such as multiple sclerosis, motor neuron disease, stroke and brain injury, or have experienced major physical trauma resulting in amputation; they are often very immobile, and have a variety of cognitive impairments, emotional problems, pain, spasticity etcetera. We cover a large area of central southern England as a specialist tertiary referral centre. I run a Special Study Module for medical students from Oxford University who are in their fourth year of training (the course most of them follow in Oxford is six years long). The module (‘Models and Meanings’) attempts to combine study of the disabling conditions and the person’s experience of them with a study of the representation of illness and disability in the arts.

When we see a patient in clinic, or in the operating theatre, or on the ward, we see only a tiny part of their lives. We tend to see what they want to present to us. The clinic and the ward are not real life, or only a tiny part of it. If I really want to know what life is like for my patient I have to spend hours at it - perhaps also visiting them at home (something I often do) or in the Nursing Home. That way I get a feel for the things that get forgotten in clinic- such as the long hours of inactivity, or the financial poverty of the family, and an appreciation of what is important to them - for example the religious artefacts on the walls, the family pets, the old cars littering their garden, the half finished Do-it-Yourself projects. I had a young patient who was wheelchair -bound, and his grandfather was trying to make a shower room for him.A But the room never got finished - it filled up with the plumbing tools, and the debris of the family’s life, and he was left to fend for himself in increasing chaos. Seeing him in his room, cold and isolated, in a wheelchair most of the day, with no easy access to a bathroom, alone in the house for hours, taught me more about his life than any number of clinic appointments.

But sometimes we can’t access the patient in this direct way, and sometimes we don’t notice things. Our minds and our eyes need to be trained to spot things; so does our imagination. As trainee doctors we get extensive training in physical examination. I believe we also need to train our imagination, to learn to think what life is like for others, to experience things vicariously. When I was a medical student, I had never experienced a major bereavement. I read a book by C. S. Lewis, A Grief Observed, and I felt something of his grief, far more than from anything else I had experienced up to that point in my life. Literature and films can expose us to things we cannot otherwise experience.

However, what we see and read may be misleading. All art is selective from reality, and represents reality with a particular slant. In Britain, many people above the age of 50 will have a clear idea of what they think life as an amputee is like which is based on a film about a Second World War fighter pilot, Douglas Bader, whose exploits impressed the nation, led to his being knighted, and set a standard of achievement which is hard for real life amputees to match. Similarly the achievements of Para-Olympians and wheelchair athletes have set a standard infinitely beyond the hopes of most people suffering from significant impairments. The images on the TV screen show us the amputee who gets around the course, and are very unlikely also to show us the blistered stump, or the half-way-round drop out.

In the Special Study module for Oxford University medical students, I am encouraging students to think about representation, about the way we see things as doctors, the things we tend to notice, to comment upon (the thin abdomen, the scarring on the back of the leg), and perhaps also the things we tend to ignore or not notice - the red eyes of the patient’s wife sitting in the waiting room, the bewildered children playing with the clinic’s toys. We are trying to notice the ways in which disability and illness tend to be represented in the media (the ‘Plucky Fighter’, for example). We are trying to compare experience and representation - one of the current students is looking at the experience of amputees and comparing it with the representation of amputation in films, seeing what the patients themselves think about the way they are represented. In the last few days we have looked at a film which will be familiar to many because of its portrayal of the lives of a community of deaf students and their various hearing teachers. Children of a Lesser God has continued to cause controversy amongst non-hearing viewers over the years. Below are the observations of two medical students.

A medical student perspective: Disability and Children of a Lesser God

As medical students, we do get some teaching on disability as part of our training, but it is limited and always seen within the context of medical care rather than as a topic in its own right. The only window we have into most of our patients' lives is the time they spend in hospital, and it's easy to forget that many disabilities can have an impact on everything an individual does, not just their use of healthcare. As part of our training we are allowed to spend some time exploring subjects that particularly interest us, so we have taken the opportunity in this module to combine thinking about portrayal of disabilities in the arts with actually meeting people undergoing therapy at the Oxford Centre for Enablement. We watched Children of a Lesser God as part of an introduction to issues surrounding deafness, but also more generally to the problems that can arise in interactions between disabled and able-bodied people.

The film is set in the 1970s, when educational segregation based on disability was more common than today. Most of the action takes place in an isolated boarding school for deaf children on a remote island, and although the school is presented as a supportive and stimulating environment in which to learn, the expectations of the Headmaster for his pupils are limited - he seems entirely satisfied that Sarah, his star pupil, remains working on the island as a cleaner. Perhaps as a result, she is frightened by life outside the school community, which she has not experienced since childhood. This highlights the central dilemma of education for people with disabilities such as deafness: segregation within a supportive and specialised community, or integration into the wider world?

In Children of a Lesser God, segregation between 'hearing' and 'non-hearing' people is not just limited to the educational years. As exemplified by the adult lives of Sarah and Mr Leeds, deafness seems to divide the world into two opposite halves: those who can hear, and those who can't. This is portrayed as a sharp and definite distinction: perpetuated from outside the deaf community, as society segregates deaf from hearing; and from within it, as deaf characters such as Sarah and the children refer to 'hearing boys' or 'hearing girls.' Perhaps because it is drawn as such a sharp distinction, the interface between these two worlds becomes fraught with misunderstanding and assumptions, and this is exemplified in the romantic relationship between Sarah and Mr Leeds. Only at the end of the film, and after much hurt on both sides, is a point of compromise found. To what extent an impairment forms part of both an individual and a collective identity is an interesting question. It is a question complicated by the fact that one impairment is not equivalent to another, and that Deaf people may have a stronger sense of collective identity than, for example, people who have had amputations.

In describing these two communities, the film doesn't explicitly use loaded terms such as 'normal' and 'abnormal', but we perceive that on some level assumptions about what is normal and what is not are reflected in the behaviour of the key characters. Mr Leeds, young and handsome, arrives on the scene as something of a 'knight in shining armour', determined to improve the prospects of his pupils by teaching them to speak, rather than to sign. Although he is a flawed character, it is easy to identify with his enthusiastic altruism to 'help', particularly as doctors. Perhaps this is something we should be wary of; and find out what sort of interaction a patient may want with the healthcare profession before we try to 'get them back to normal.' Sarah's fierce opposition to Mr Leeds's attempts to teach her how to speak in the film are perhaps an extreme example of this, but it highlights the dangers of assuming too much, even with the best motives.

Ill-considered terminology, however, is far from the greatest threat which has historically faced disabled people from their able-bodied peers. The exploitation of disabled people is a familiar theme in the arts, and one which Children of a Lesser God explores: Sarah has been sexually exploited by her sister's hearing friends. Some disability activists criticise depictions of disabled people as victims, but sadly the frequency of such depictions probably reflects a reality in which abuse and neglect are common. Interestingly, this film also explores "exploitation" in another sense: Sarah exploits her deafness as a protection from the outside world. She is often demanding and gets away with more than a hearing woman would be able to, partly through using her deafness as a defence and as an excuse for unreasonable behaviour. There is ample explanation and excuse for this in her abusive background, but the point that disability may not be only a vulnerability but also a tool in social interaction remains.

Although the film explores many aspects of life as a deaf person and interactions between deaf and hearing people, one thing it struggles - understandably - to represent is the actual experience of deafness. It is as full as any other film of sound, music as well as dialogue - which, incidentally, is nearly always spoken as well as signed. Only in the swimming pool scenes, first when Sarah swims alone and later when Mr Leeds joins her under water, does the viewer experience complete silence. This is a remarkably effective device, and one that perhaps the film makers might have exploited more fully.

This commentary discusses Children of a Lesser God as a film about deafness, but that is far from all it is. First and foremost, it is a love-story, and also a story about coming of age and learning to see the world in a new way. Deafness is a central, but not the only, theme, and to treat a complex human story as a tract on deafness would be a reductive and limited view. Even if it were, it would be misguided to generalise from this film about disability in general; firstly, because not all disabilities are the same, and secondly because for many, deafness is not a disability at all.

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ACharacteristics of the patient described have been changed to prevent identification.