Literature, Arts and Medicine Blog

Commentary by Daniel Goldberg, J.D., Ph.D. Health Policy & Ethics Fellow, Chronic Disease Prevention & Control Research Center, Department of Medicine, Baylor College of Medicine; Research Faculty, Initiative on Neuroscience & Law, Department of Neuroscience, Baylor College of Medicine

There is a legal doctrine known as "attractive nuisance." The basic idea of the concept, grounded in the law of torts, is that an owner or occupier of a premises can be held liable for negligence if they are responsible for a dangerous condition which is reasonably likely to attract vulnerable persons, such as children. Sometimes the medical humanities are for me akin to an attractive nuisance inasmuch as I tend to be easily distractible and scatter-brained, and thus can wallow in to deep pools before I realize I am well out of my "safe" zone.

Of course, practicing the medical humanities is not a nuisance at all; it is a privilege to be practicing, instead of merely rhapsodizing about the merits of, an interdisciplinary approach to health, illness, and medicine in society. But the privilege comes with significant danger as well, and I have of late become more impressed with the need to focus in on a few key areas which I hope to make part of my comfort zone. One of these areas of interest is disease causality.

Causation

Causation is one of those fecund topics whose enormous importance seems to surpass disciplines. A favored subject of antiquity, it remained central to Thomas Aquinas, Maimonides, and many of the other medieval scholars, to the early modern greats like David Hume and Immanuel Kant, and remains a critical subject in contemporary philosophy of science. Kant, whose epistemology is in my view often shamefully relegated to the background of his moral philosophy, was convinced that causation is a category of understanding, such that we cannot make sense of the phenomenal world without the concept.

But not only philosophers treat of the importance of causation, especially in context of medicine and illness. Medical anthropologists, for example, have long since pointed out that comprehending how a given community understands disease causality provides critical insight into the meaning of illness, suffering, life, and death. Anne Fadiman's well-used book, The Spirit Catches You and You Fall Down [1], is a nice instrument for teaching this point, as it seems inescapable that greater understanding (if not acceptance) of the Lee family's beliefs about Lia's illness experience would have greatly improved the family's medical experience.

As a self-identifying public health ethicist, my particular focus right now in thinking about disease causality is in the context of stigma. The history of stigma in context of illness can, to my mind, be traced back virtually as far as one wishes in Western civilization. (I believe it is reasonably prevalent in non-Western cultures as well, though I admit to a shameful level of ignorance on the specifics here). The reasons why stigma is so common in illness scenarios are multi-faceted, complex, and in my view have powerful explanatory capacity in conceptualizing health, illness, and disability. Fortunately for the able readers, as I have some work in review on the subject, I shall not be discussing it here (though some general thoughts on the subject are available on Medical Humanities Blog.

Disease Causality and Stigma: The Case of Fatness

What I want to suggest here are the connections between a particular notion of disease causality and stigma. One of the most obvious examples is the relationship between fatness and illness. As Gard and Wright [2] painstakingly documented in their fabulous 2005 book, the connections between fatness and disease are typically taken to be virtually certain among both lay and professional communities. And what are the consequences? That is, what results if we assert that type II diabetes, coronary artery disease, and cardiovascular disease, among others, are caused by fatness?

Of course, responding to the question of "what causes diabetes" by answering "fatness" is really a set of additional questions masquerading as an answer. Many of these questions turn on the differences between causes and risk factors, but to approach the issue of stigma, one must ask what causes fatness? (Naturally, to even speak of singular causes of intricate, nonlinear systems like disease in populations is absurdly oversimplified; one of the problems with causal attributions of illness in both lay and professional discourse is our general reduction of these complex systems to single, discrete variables. This is of course a hallmark of the Western scientific method, and the history of how we came to do so is, I think, quite important. But that is another post altogether.)

Life-style Model of Disease

In any case, what causes fatness? The usual answer turns on some fairly innocuous-sounding mishmash of genetics and environment, but the so-called model of disease causality here is often referred to as the "lifestyle" model. And lifestyle-type thinking is, particularly in American culture, deeply ingrained with notions of choice. We choose whether to pursue this lifestyle or that one; and so, in a very real sense, we choose whether to be fat. If fatness causes illness, it follows that we choose whether to be sick (with diabetes, coronary artery disease, etc.). This is in part why breathless reports of genetic linkages with fatness incite so much controversy - one of the perceived implications of such linkages is that individuals are not responsible for their fatness.

Of course, as I have noted on Medical Humanities Blog (see "On the Genetics of Jewishness"" and "On Genes & Diabetes Disparities", our discourses of genetic causation are problematic in a great number of ways, not least of which is the notion that "genes" actually cause anything at all in a linear sense. Genes do have causal effects, of course, but those causal effects are only produced through a complex system in which social, economic, cultural, and environmental factors profoundly shape expression. As Jeremy Freese has noted, the idea that the causality of an illness can be divvied up into x% - genes and 1-x% - environment is deeply mistaken [3]. Thus mere genetic linkages themselves are, from a causal perspective, not very interesting separate and apart from the inordinately complex systems through which they express (or do not).

Critique

One of the most compelling criticisms of the lifestyle model of disease is not that it is false; but rather, it is incomplete inasmuch as it pays no attention to the ways in which social and economic conditions substantially determine one's lifestyle choices. Even if we were to grant the exceedingly dubious proposition that fatness causes diabetes, drilling the causation down to individual lifestyle choices ignores, in my and many others' views, the robust evidence that lifestyles are primarily the product of social and economic conditions (the social determinants of health).

And of course, our model of disease causality is frequently embodied in how we regulate behaviors thought to cause illness. If one sees society as what Robert Jay Lifton termed a "biocracy" [4] as prevailed in the early 20th century in both Europe and the U.S., then the solution to the inherited "degenerate" behavior that produced diseases like insanity, mental retardation, and syphilis was to enact laws which precluded such inheritance. Alternatively, one could also support laws that precluded the "amalgamation" of "racial stocks" in which such degeneracy proliferated.

Similarly, if the cause of diabetes and CAD is perceived to be fatness, and the causes of fatness are unhealthy lifestyles, the perceived public health solution is to regulate such lifestyles, by, for example, strictly regulating the food available in school cafeterias, or requiring restaurants to print calorie information on their menus and web sites. In contrast, if the cause of fatness is perceived to be social and economic conditions, policy solutions would seem to fall much closer to ameliorating the conditions which seem to promote unhealthy lifestyles. (I hasten to remind readers that I am quite skeptical of the causal links between fatness and illness, but I assumed the validity of the attribution to take the point further).

In any case, disease causality is an important, and, in my view, understudied concept in the medical humanities, one that ties in quite deeply to notions of stigma, disability, and moral culpability for illness.

References
1. Anne Fadiman. The Spirit Catches You and You Fall Down (New York: Farrar, Straus & Giroux, 1997).
2. Michael Gard and Jan Wright. The Obesity Epidemic: Science, Morality, and Ideology (New York: Routledge, 2005).
3. Jeremy Freese. "The Analysis of Variance and the Social Complexities of Genetic Causation," International Journal of Epidemiology 35, no. 3 (2004): 534-36.
4. Robert Jay Lifton. The Nazi Doctors: Medical Killing and the Psychology of Genocide (New York: Basic Books, 2000).

Commentary by Martin Kohn, Cofounder and Senior Associate for Program Development, Center for Literature, Medicine and Biomedical Humanities at Hiram College, and retired faculty, Northeastern Ohio Universities College of Medicine

My wife is a nephrologist. She loves kidneys (and how they function) almost as much as she loves me. We recently celebrated our 23rd anniversary. She's a deductive thinker par excellence. I'm a lateral thinker to the nth degree. When we argue she'll often exclaim, "I can't follow your train of thought." "What train?" I reply earnestly. Recently, she asked me (again), "can you define narrative for me?" "Not yet," I replied, buying a little more time.

In spite of working in the medical humanities for nearly 30 years I continue to struggle with explaining just what narrative is and how it permeates medicine's moral domain. So I recently agreed to a request to present grand rounds to the Bioethics Department at the Cleveland Clinic, forcing myself to ransack old notes and articles and catch up with at least a few developments in the field. I offer below a sampling of my presentation. The through line was:

WORDS/STORIES——————-PERSONS———————-COMMUNITY

WORDS/STORIES

I began this portion of the presentation with numerous claims about the centrality of words and stories in our lives: that they are as constitutive of the self as are our genes; that they preserve "the teller from oblivion." (1); that they are the foot soldiers of meaning; that they "do not simply describe the self, they are the self's medium of being. " (2); that narrative is a conveyance in which and through which we (and our words and stories) confront time, and that ultimately, meaning and sense filled words and stories, into which we are born and which are temporally borne by us, become our constructed truths about the world (noting that the root of the word narrative, "narr/gno," is after all, knowledge.).

Finally, I claimed that words and stories also make community possible. Community being formed by which bits of experience we choose to string together (to re-member, both individually and communally) and which we re-present as plotted events, connecting us to the unfolding drama of our shared lived experience.

Further exploration of the centrality of story in the work of physician-writers Robert Coles, Rachel Naomi Remen and Rita Charon was followed by a synopsis of creative writer, Scott Russell Sanders' essay, "The Power of Stories" (3).

PERSONS

After a brief exploration of Cassell's notion of "topology of person," (4), I focused on a more poetic treatment of the aspects of the person that appears in a poem by Billy Collins, "The Night House." The poem reveals the body's role-as "the house of voices"- in the experience of the person who lives in the moral lifeworld as that body, and who "Sometimes puts down its metal tongs, its needle, or its pen/To stare into the distance,/To listen to all its names being called/Before bending again to its labor" (5).

These voices (heart, mind, soul, conscience) in the body's house are arrayed below (with attributes I provisionally assigned them) where they serve as elements of the first of three tributaries flowing into moral personhood.

First tributary: THE HOUSE OF VOICES /IN THE EMBODIED PERSON/ IN THE MORAL LIFEWORLD

•The open (feeling) "heart"
•The curious (improvisational) "mind"
•The seeking (animating) "soul"
•The silvery (calculating) "conscience"

Second tributary: EXPRESSIONS OF MORAL REFLEXIVENESS/OUR MORAL BEING IN THE WORLD

I shared with my audience a most delicious description of "character" which is, I believe, the primary vehicle through which moral reflexivity operates. The excerpt below comes from the novel, Mrs. Ted Bliss, by Stanley Elkin:

the constant, minute-to-minute routine of putting together a character, assembling out of little notes and pieces of the past-significant betrayals, deaths, yearnings, successes, meaningful disappointments, and sudden gushers of grace and bounty- some strange, fearful archaeology of the present, the Self to Now, as it were, like a synopsis, some queer, running quiddity of you-ness like a flavor bonded into the bones, skin, and flesh of an animal.

Third tributary: REFLECTIVE PRACTICE/DOING MEDICAL ETHICS OR BIOETHICS THROUGH PARTICULAR FRAMEWORKS

A (partial) list of the reflective frameworks appears below:

•Juridical: Study of the rational application of principles as action guides. Morality is seen as a body of knowledge. (7)
•Narrative: Study of voice and authority, point of view, coherence of story, co-construction of story, narrative frameworks of illness stories, etc. Morality is seen as a continual interpersonal task done by all in the community. (7)
•Care: Study of what empathy calls forth from us
•Feminist: Study of systemic/historic power imbalances and calls to challenge those imbalances
•Communicative: Study of the distortion of free communication /attempts to remediate those imbalances
• Naturalized: "Minimally, naturalism in ethics is committed to understanding moral judgment and moral agency in terms of natural facts about ourselves and our world." (8).

Combining these tributaries into EMBODIED BEING AND DOING produces movement, a kind of flowing moral lifestream that conveys a style or action that contains a certain musicality to it. So I searched for two musical examples to visually and aurally illustrate what I meant by musicality. The first example is a rendition of Johnny One Note (The ads will disappear after about 30 seconds, if you try to remove them the video starts over). The second example features the song Libertango by Astor Piazzolla (originator of the Nuevo Tango style, who plays the bandoneon, a folk instrument related to the accordion, with an ensemble including Yo-Yo Ma).

Johnny One Note is a show tune from the 1937 Rodgers and Hart musical Babes in Arms. Title, lyrics and in this instance, performing style, all align (for me) as a critique of the hegemonic "principlist" approach to moral analysis of medical issues. Featured in this rendition of Johnny One Note is Johnny Mathis (as an alpha male!) surrounded by the adoring Lennon Sisters, backing him to the hilt as he gives his all for ONE NOTE (autonomy?). In contradistinction, Libertango is polyrhythmic, featuring layered and shifting voices and is multi-genre, a mix of classical and jazz and folk music. It represents well the "multiple tributaries" approach that revels in the complexity (and beauty) of the moral lifeworld that I advocate.

COMMUNITY

To finish my presentation, I turned to two works, "The Narrative Quality of Experience, by Stephen Crites (9); and Gerald Gruman's A History of Ideas about the Prolongation of Life (10). Stephen Crites was a philosopher and a scholar of religion with special interests in the connection between narrative and experience. His work emanates from and illuminates the point at which experience and action interpenetrate, where narrative becomes the vehicle through which consciousness temporally expresses experience; and where simultaneously our actions take on a particular musicality in response to the expressed stories we live our experience out of. (How do we label the iconoclast/the oddball, one who doesn't live by the conventional expectations or stories of our culture? We do so by saying that they "march to the beat of a different drummer.")

Most pertinent to the focus on community are Crites' contentions about sacred and mundane stories. He explains: "people live in [sacred stories which] are anonymous and communal… [that] orient the life of people through time, their life-time, their individual and corporate experience and their sense of style, to the great powers that establish the reality of their world…[ this makes, he claims] every sacred story a creation story…the story itself creat[ing] a world of consciousness and the self that is oriented to it" (pp. 295-6). He further explains that these sacred stories are always present in some way in the mundane stories [and that] "people are able to feel this resonance; because the unutterable stories are those they know best of all" (pp.296-7). He believes that "the stories people hear and tell, the dramas they see performed, not to speak of the sacred stories that are absorbed without being directly heard or seen, shape in the most profound way the inner story of experience"(p. 304).

Crites anticipated (he was writing during the late 1960's) a conversion of consciousness that reflected a cultural shift into post-modernity. Evidence for the shift would be found, he explained, in "a traumatic change in man's story" (p. 307), wherein the stories to which he has "awakened to consciousness must be undermined… [and] through a new story both the drama of his experience and his style of action must be reoriented… he must dance to a new rhythm… [for] the very cosmos in which he lives is strung in a new way" (p. 307).

I took Crites' notion of sacred stories and shift of consciousness and set them within the work of another philosopher, Gerald Gruman- challenging us to consider that the shift in consciousness that Crites was sensing about 40 years ago, has now reached a critical point.

In his classic work, A History of Ideas about the Prolongation of Life (published five years prior to Crites' article), Gruman provides ample evidence of the human yearning for immortality, citing numerous examples across time and cultures; however, he also describes an alternative historical-cultural phenomenon: acceptance of our body's limitations. He presents his evidence of these two urges through two conceptual domains: the Meliorist camp, i.e. the 'we can continuously improve the human condition' folks, and the Apologist camp, i.e. the 'we need to accept ourselves the way we are' people.

These camps, and both of these human urges, are in tension- and I would argue are competing sacred stories about immortality. The meliorist camp promotes solipsistic immortality; the apologist camp supports species immortality. H. R. Moody, philosopher and humanistic gerontologist, has offered two similar framing concepts: one, aligned with a sacred story of progress and human control over nature, he labels 'techno-utopian mastery'. (11) Aligned with the sacred story from the apologist standpoint of mystery or acceptance of our place in the natural order of the world is his 'ecological vision of aging'a"where youth and age are…. accepted as part of the natural life cycle" (p. 33).

AIA offered to my audience a neologism to describe a synthesis of the two sacred stories -the one grounded in mystery and reverence, the other grounded in mastery and control. The word I coined is eco-meliorism. It grew out of a new sacred story, the one to which I believe our consciousness is awakening- sustainability- and which I define as the careful (even slow) movement toward human betterment in light of human presence in ongoing, interrelated natural systems.

Sustainable Health

There is evidence that we in medicine (and our larger community) are beginning to live within the sacred story of sustainability, developing interesting syntheses that emanate from an eco-meliorist approach. I would include in this list hospice and palliative care, the Eden Alternative in nursing homes, and the Planetree organization. There's also movement toward the sustainability story in science- Bioneers (whose motto is "revolution from the heart of nature") , green chemistry, and the adoption by some of the "precautionary principle." In our larger society there are other examples of eco-meliorism including the slow food movement and even a call for slow money, such as that advocated by Woody Tasch. (See his book, Inquiries into the Nature of Slow Money. Investing as if Food, Farms, and Fertility Mattered).A All of these endeavors point toward a new sacred story of sustainability, toward stringing our cosmos in a new way, toward waking up into a new consciousness, toward marching to the beat of a different drummer.

Wallace Stevens wrote the poem "Six Significant Landscapes" nearly 100 years ago (12). I ended my presentation (and now this blog entry) with its final verse and with a question: How might we live and practice and think differently if we lived in different "rooms", if we changed not only our physical habitat, but also our narrative habitat? (And now, I think I'll grab a glass of wine, put on my sombrero, and read the poem to my wife….)

Rationalists, wearing square hats, / Think, in square rooms, / Looking at the floor, / Looking at the ceiling. / They confine themselves / To right-angled triangles. / If they tried rhomboids, / Cones, waving lines, ellipses — / As, for example, the ellipse of the half-moon — / Rationalists would wear sombreros.

References

1. Portelli, Alessandro. The Death of Luigi Trastulli, and Other Stories: Form and Meaning in Oral History. (Albany, N.Y. : State University of New York Press) 1991, p. 59

2. Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. (Chicago: University of Chicago Press) 1995, p. 53

3. Sanders, Scott Russell. The power of stories. Georgia Review, 1997; 51:113-26.

4.Cassell, Eric J. The Nature of Suffering and the Goals of Medicine. (New York: Oxford University Press) 1991, p. 47

5. Collins, Billy. Picnic, Lightning. (Pittsburgh, Pa.: University of Pittsburgh Press) 1998, p.80

6. Elkin, Stanley. Mrs. Ted Bliss. (New York: Hyperion) 1995, p. 55

7. Lindemann Nelson, Hilde. Context: backward, sideways, and forward. In Charon, R., Montello, M., eds. Stories Matter: The Role of Narrative in Medical Ethics. (New York: Routledge) 2002

8. Walker, Margaret Urban. Introduction: Groningen naturalism in bioethics. In Lindemann, H., Verkerk, M., Walker, M.U., eds. Naturalized Bioethics: Toward Responsible Knowing and Practice. (Cambridge and New York: Cambridge University Press) 2009, p. 1

9. Crites, Stephen. The narrative quality of experience.A Journal of the American Academy of Religion, 1971: 39:291-311

10. Gruman, Gerald J. A History of Ideas about the Prolongation of Life: The Evolution of Prolongevity Hypotheses to 1800. (Philadelphia: American Philosophical Society) 1966

11. Moody, H.R. Who's afraid of life extension? Generations, 2001-02; xxv: 33-37

12. Stevens, Wallace. Harmonium (New York: A. A. Knopf), 1993, p. 100

Commentary by Johanna Shapiro, Ph.D., Professor, Department of Family Medicine and Director, Program in Medical Humanities & Arts, University of California Irvine School of Medicine

Theories of relationship-centered care

The concept of relationship-centered care (RCC) (1) and the related theory of human interaction designated Complex Responsive Processes of Relating (2) remain exceptionally fruitful ways of thinking about doctors and patients. Relationship-centered care includes attention to the personhood of both doctor and patient, as well as their respective roles; awareness of the importance of emotions in both the patient and the doctor; and recognition of the reciprocity of influences from both doctor and patient (and from the wider healthcare system and society itself) on the relationship itself (1,3,4). RCC challenges the notion of compassionate detachment and instead explores connection and engagement with patients as the most appropriate and moral foundation for relationship.

The theory of Complex Responsive Processes of Relating (2) highlights the nonlinear, reciprocal, and self-organizing nature of human interaction. It specifies that patterns of meaning and relating are co-created continuously throughout the communicative encounter; and that such patterns may repeat themselves, or due to the introduction of "novelty," may develop spontaneously in new directions. As Suchman writes, "the development of new patterns depends upon the diversity and the responsiveness in the interaction." (p. S42). In other words, encounters between doctors and patients that allow, even invite, variety and divergence from unprofitable patterns are most likely to evolve into more meaningful and more authentic ways of being in relationship, which ultimately serves patient well-being. This view acknowledges that patients as well as physicians exercise continually shifting power in the encounter; and therefore physicians have limited control in terms of outcomes.

Implications of RCC/CRPR for "noncompliance"

Although RCC and CRPR have implications for all aspects of the patient-doctor encounter, they are especially relevant in situations of perceived patient "noncompliance." Advances in social science research have helped challenge simplistic conceptualizations of adherence and compliance, in which doctor-patient communication consists of the doctor prescribing medication and the patient taking it. More recently scholars have introduced the term "concordance" to indicate the complex processes that must occur between physicians and patients in order to result in patient cooperation with the prescribed treatment regimen (5). For example, concordance implies an open exchange of ideas, rather than top-down orders, and focuses on both physician and patient values and priorities, rather than on those of the patient alone.

Nevertheless, walking the corridors of a contemporary hospital of clinic, one rarely hears reference to "lack of concordance." Chart notes still read, "Patient noncompliant with medication," with all the frustration and patient blame this term has come to imply (6). Neither do we often hear clinicians contemplating the implications of their diabetic patients' - or their own - emotional responses to their disease for the meaningfulness of future patient encounters; nor the applications of complexity theory to patient compliance. On these significant dimensions of interaction around diabetes care, as in so many other aspects of medical education, the gap between the formal and the hidden curriculum remains pronounced (7). In my comments below I will focus specifically on current attitudes of physicians and students toward the management of diabetic patients; and how the use of a poem can help learners clarify principles of RCC and CRPR that are pertinent to adherence/compliance dilemmas.

The frustrating case of diabetes

In the diabetic patient population, noncompliance is a widespread (and ill-defined) problem, with estimated rates ranging from 30-80%. The inability to "control" the patient, and therefore "control" the patient's blood sugar, is a source of substantial exasperation, even despair, among physicians. Yet one study (6) found that, despite physicians' awareness of the complex constellation of psychological and social factors that constitute obstacles to treatment, they routinely failed to address these issues in clinical encounters, relying on directive, one-way communications about numerical monitoring and outcomes. In other words, these physicians persisted in a linear, cause-and-effect, power-down communication model that ignored the complexity, emotionality (in themselves or their patients), spontaneity, and power fluctuations that occur continuously between doctor and patient. In another study of physician attitudes toward poor compliance in patients with diabetes, it appeared that doctors relied primarily on shock, pressure, and the threat of hospitalization to influence patients toward improved compliance, as defined by the physician (8).

Medical students as well can cling to the straightforward, linear models of communication that are often mistaken for patient education in the management of diabetes. Their focus (understandably, from their perspective as learners), is on diagnosis of the physical ailment. Once this is achieved, the rest seems easy to them: the doctor tells the patient what to do; and the patient, who naturally wants to recover, does it (9). One study noted that, in actual encounters with patients with diabetes, the most frequently reported challenge to student worldviews was how to achieve patient compliance (10). It does not require a great leap to expect that these students will likely become patronizing, directive, yet also despondent and frustrated physicians.

Poetry to the rescue?

While it is obviously crucial to help students rethink their assumptions about and gain insight into the relational foundation of medicine and the complex nature of communication, especially around the issue of compliance, the methods for doing so remain unsettled. By definition, RCC and CRPR are intricate, multifaceted constructs at variance with more simplistic mechanistic models of doctor-patient interaction, and this suggests that the ways of developing conversations addressing them must be versatile as well. Under these conditions, literature and poetry may well have a role to play in helping students develop more critical, self-aware thinking about relationship in general, and in particular about the process through which patients and physicians achieve concordance regarding drug and lifestyle regimens. To illustrate this point, I would like to consider John Wright's wonderful poem "Walking the Dog," (11) and how it clarifies and concretizes aspects of both RCC and CRPR, as well as complexifies students' thinking about patient compliance.

Walking the dog

In "Walking the Dog," a doctor looks at an old problem - an overweight patient with diabetes - in a new way. The doctor is frustrated - obesity and high blood sugars are killing his patient. He turns the problem over and over in his mind. What can he do? At last he has an epiphany - he will give his patient a little dog that she can walk, thereby providing her with much-needed exercise, that will in turn lower her weight and her sugars, and prolong her life. And, like the conscientious physician he is, he prescribes the puppy in a precise dosage: the animal must be walked twice a day!

At this point in the poem, the author (himself a physician) has already caught our attention. Prescribing a pet! This unusual approach helps students think outside the box in terms of innovative therapies. It also is an excellent illustration of the CRPR principle that patterns of meaning and relating are continuously created, and that while they may exhibit stability, sometimes new patterns arise spontaneously (novelty). At this point the students think they "get the message": treatment can involve something more than medication. Be bold, be daring! They can "tell" their patients to take a walk! They admire the physician for being so creative. But the author provides an additional twist (yet more novelty). To their chagrin, the students discover that the treatment doesn't work, at least not in the way the doctor thought it would. As it turns out, while the patient is delighted with her little puppy and cuddles it affectionately, it is her "lean" husband who "faithfully" complies with the prescription of twice-a-day dog walking. Twelve years later, happy but presumably still obese and still diabetic, the patient dies.

The narrative arc of the poem is so unexpected that it inevitably provokes a chuckle. Nonetheless, it is troubling to students on several counts. First it turns the concept of compliance on its head by showing that, in the poem, the compliance achieved is perfect but meaningless because the wrong person is doing it. This nonsensical take suggests that compliance is only one aspect of the encounter between patient and doctor and should not always be regarded as the only measure of success. Both the narrator (and we, the readers) have to grapple with the fact that patients don't always do what doctors tell them to do. In CRPR terms, students learn that doctors do not have omnipotent control over their patients. In discussing why the patient may have been unable to or uninterested in walking her puppy, students realize that following "what the doctor says" is influenced by many factors; and that while the physician's power may be rooted in expertise, in this case the patient has her own power, and exercises it by choosing a relationship with the puppy that is very different than the one the doctor envisioned, but one that nevertheless brings her joy.

In one final twist, the poem's artistry offers an additional puzzle. Somehow, despite the physician's initial frustration, despite the failed prescription, despite the ultimate demise of the patient, this is a gentle, bemused, and humble poem that effectively conveys the value of the doctor's caring and concern for his patient. From an RCC perspective, the poem shows us a doctor, patient, (and spouse) who are not simply roles, but people with emotions, idiosyncracies, frustrations, and affections. The narrator, for example, is well aware of both his own emotions, and those of his patient, and he is not afraid to introduce novelty to attempt to create new patterns in the situation.

Perhaps one of the most important lines occurs early in the poem, when the doctor realizes that his patient's health is deteriorating and that, so far, he hasn't been able to save her. At this point the narrator says, "So/I thought." This line illustrates the self and situational awareness that CRPR and RCC both advocate. By reflecting on his own and his patient's limitations, and the exasperation he feels at these constraints, the physician is able to develop empathy. Unwilling to give up or emotionally abandon his patient, he also resists giving in to his own annoyance and helplessness. Instead he keeps trying. In CRPR terms, the physician approaches his patient's "noncompliance" with curiosity, compassion, and more than a modicum of humor, rather than fear and defensiveness. Rather than burden himself with self-blame and guilt (the consequences of unrealistic control aspirations), he simply remains open to the possibility of change. And apparently he remains open for twelve years. Did he achieve better A1C numbers in his patient? Did he extend the patient's life? The poem is silent on these questions. But most students feel that doctor and patient shared a precious partnership, and that the physician's position in relation to the patient was fundamentally a moral one.

Conclusion

Prose and poetry have an important contribution to make in helping medical students engage with the abstractions of conceptual theories such as RCC and CRPR even as they wrestle with the challenges of issues such as adherence/compliance. Of course, the relational and communicative questions raised by RCC and CRPR play out daily between doctors, medical students, and patients, and obviously such encounters provide fertile soil for examination. Physician educators (12) have crucially advocated, and rightly so, for real-time, moment-by-moment awareness of actual clinical process. But just as Dr. Wright found value in retrospective reflection about himself and his patient, so too can students benefit from teaching experiences in which the priority is stimulating critical awareness, as well as the multi-tasking reflection that is required at the bedside. Through humanities teaching such as I have described above, the ways of perceiving and being that RCC and CRPR encourage become increasingly accessible and meaningful to students, and help create and sustain "attitudes of readiness" that, in turn, will seamlessly interface with and support their "real" lives as burgeoning physicians.

References
1. Beach MC, Inui T, and the Relationship-Centered Care Research Network. Relationship-centered care: a constructive reframing. Journal of General Internal Medicine, 2006;21:S3-8.

2. Suchman AL. A new theoretical foundation for relationship-centered care: complex responsive processes of relating. Journal of General Internal Medicine, 2006;21:S40-45.

3. Frankel RM, Inui TS. Re-forming relationships in health care. Journal of General Internal Medicine, 2006;21:S1-2.

4. Duffy FD. Complexity and healing relationships. Journal of General Internal Medicine, 2006;21:S45-46.

5. Chatterjee JS. From compliance to concordance in diabetes. Journal of Medical Ethics, 2006;32:507-510.

6. Wens J, Vermeire E, Van Royen P, Sabbe B, Denekens J. GP's perspectives of type 2 diabetes patients' adherence to treatment: a qualitative analysis of barriers and solutions. BMC Family Practice, 2005;6:20

7. Hafferty F, Franks R. The hidden curriculum, ethics teaching, and the structure of medical education. Academic Medicine, 1994;69:861-71.

8. Freeman J, Loewe M. Barriers to communication about diabetes mellitus. Patients' and physicians different views of the disease. Journal of Family Practice, 2000;49:507-12.

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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

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;A from Rembrandt to Thomas Eakins; from the early 20^th 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 VirgilA 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.

AThe Anatomy Lesson

AMy 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 16^th 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) AWe 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 16^th 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)A I have seen recent medical texts without a single whole body image.

In the 18^th century gifted Italian craftsmen and a noted woman, Anna Morandi Manzolini, aA 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 14^th 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 20^th 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 theA huge internal moving parts. She is ten times human size.A 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.A 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?

ADisembodied

AOur 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)A 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,"AA 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 theAAAA Hisory 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.A 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, Californi

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:

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:

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)

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
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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
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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.
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Straus, Marc J. "Monday". In Symmetry (Evanston: Triquarterly Books) 2000, p. 38
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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.

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

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.