Wherever You Go: Self-Representation and Williams Syndrome

July 14, 2015 at 5:04 pm

Jess Libow is currently a summer intern at the Bellevue Literary Review. She is a rising senior English major at Haverford College interested in disability studies.

Nader and Josh at the Wildhorse

All photos courtesy of camp staff

Looking out over the dance floor at Nashville's Wildhorse Saloon as other members of our group line danced with the crowd below, Mark told me "It's good for us to get out into the community so that people know we exist." As a counselor this past June at Lifting Lives Music Camp at Vanderbilt University, run by the Academy of Country Music, I lived in a dorm with Mark, who is 51, and seven other men with Williams Syndrome. After this experience, I couldn't agree with him more.

Lifting Lives is a weeklong musical experience for people ages 16 and older with Williams Syndrome. Over the course of the week, campers from all over the country come together to write a song with renowned Nashville songwriters and, after much rehearsal, record and perform their original work at the historic Grand Ole Opry.

Recording Studio

While performing a song written only a few days earlier at the Opry might be intimidating to most, many people with Williams Syndrome thrive in this sort of setting. Williams Syndrome (WS) is a congenital neurodevelopmental disorder caused by the deletion of 26 genes on chromosome 7. WS is an extremely rare condition: the NIH estimates it occurs in 1 in 7,500 to 10,000 live births. In addition to mild to moderate intellectual disability and a range of medical issues, including cardiac conditions, people with WS are likely to have a number of distinct social qualities. Studies have shown, for instance, that people with WS have a strong predilection for music. People with WS also tend to have remarkably little social inhibition; they are eager to meet and please others and are deeply attuned to the emotional states of those around them. Their profound desire to connect lends itself easily to musical performance - people with WS are natural storytellers.

As an English major interested in disability studies, I was drawn to Lifting Lives because I saw it as an opportunity to witness people with disabilities telling their stories through songwriting. This year, the campers wrote a song with Ross Copperman and Heather Morgan titled "Wherever You Go." It's an uplifting song about aspirations and supporting one another. The most notable part of the song is the bridge, which is both universal and incredibly specific to people with WS. "Thunder roars and the rain might fall," the song goes, "but together we're unstoppable." This brief moment in the song addresses two significant characteristics of WS. People with WS have extremely high levels of anxiety, particularly about events beyond their control. Thunderstorms are a common stressor for a number of the Lifting Lives campers, and were a constant topic of discussion throughout the week. Because of the extent to which the "roar" of thunder produces anxiety in people with WS, when the campers sing this line many of them are essentially referring to their highest possible level of emotional discomfort - it is both a metaphor and a reality. The second half of the line, "but together we're unstoppable," speaks directly to the value people with WS place on human connection. The lyrics suggest that through interdependence, the campers are able to to withstand anxieties and other obstacles. This celebration of community support not only resonates personally with the campers, but is applicable across differences and abilities.

lifting lives camp

Songwriting and singing provide a creative and exciting way for the campers to tell their stories. David, for example, told me that he'd "always wanted to write a book about Williams Syndrome," but after a songwriting workshop with songwriter Odie Blackmon, "might have to change it up. There should be a song about this!" Like David, however, many of the campers have a propensity for self-representation off-stage as well.

I was struck by the ease with which campers would share stories from their past and especially intrigued by how many of their stories had to do with Williams Syndrome directly. The ever-enthusiastic Gary told me over dinner that he once encountered two nurses in the ER who'd "never met anybody who had Williams Syndrome! And they said what in the world is that? And I said to look it up, 'cause it's a really cool thing to know about!" Trevor, who works with People First, a disability advocacy organization in his home state of Washington, added that "people judge us sometimes, but they just don't know. We're friendly."

Their stories weren't always so straightforward. Some of the campers readily used simile to represent their experiences. For instance, while waiting at the gate to board his flight home, Trevor told me how he felt about my accompanying him. "It's like Barack Obama," he explained, "he’s the most powerful man in the world, but the legislative branch still sometimes helps him. So you're helping me right now." For Trevor, having a counselor wait with him at the airport wasn't insulting; it was merely part of a system of interdependence not unlike one of checks and balances. Similarly, Mark, who loves doing impressions, drew on his love of old movies to teach me about his past. "I identified with Frankenstein’s monster when I was younger," he shared after an impromptu impression of the character, "the neighbors weren’t very nice to me because I had this disability. But I found a way and I made friends."

It's hard not to wonder what drives this impulse to self-narrate. When does the desire to share one's story stop being a symptom and start being political? Does this distinction even matter?

Self-representation is a crucial aspect of disability politics today. As self-advocates, people with disabilities around the world are making sure their voices are heard. As the critical field of disability studies indicates, self-representation is a crucial aspect of advocacy efforts. This kind of political action embraces something that comes naturally to so many people with Williams Syndrome: telling your story. And a lot of the people I met at camp know that this matters. Echoing Mark's sentiment at the Wildhorse, many of the campers want others to "know [they] exist." Like David, who wanted to write a book, or maybe a song, about WS. And Kurt, who has a radio show every week. Josh, who told me he plans to write a blog for the Williams Syndrome Association. And Trevor and Dara, who are both self-advocates in their hometowns.

In my experience, people with WS challenge how we think about narrative and storytelling. They force us to reconsider what motivates us to share, to speak up, and to put ourselves and our stories out there. Biology and politics both come into play. It can be tempting to write off someone's unsolicited story as a symptom of their disability. It can also be tempting to romanticize their efforts to speak up for themselves with an overzealous "good for you" and a pat on the back. But at the end of the day, there's something powerful about someone sharing their life experience and perspective. The people I met at camp, whose stories I've tried to recount here, want to put everything on the table. I think they might be onto something.

To learn more about Williams Syndrome, please visit https://williams-syndrome.org/
To learn more about Lifting Lives, please visit their website

The Social Construction of Cancer - Part 3

November 27, 2012 at 11:22 am

Editor's Note: This is the third of four installments from guest blogger Dwai Banerjee, a doctoral candidate in NYU’s department of social anthropology. Images illustrated by Amy Potter, courtesy of Cansupport.

Part III

In a later visit with the homecare teams, I met Rajesh - a 29-year-old man who has been battling cancer since his teenage years. The walls of his room in a dense middle-class neighborhood were bare but for two pictures - one of a Hindu deity and another of his parents who had passed away in an accident when he was still young. Rajesh had contracted cancer while working in a chemical factory in his late teens. The cost of his treatment led him to lose the little property that his parents had left him when they had died. The relatives that he lived with now took him in, but refused to extend any form of empathy or care. The stigma of the diagnosis of 'cancer' along with fears of its communicability saw to his isolation in the small verandah of the house. Yet, Rajesh's will to live was strong; on his own, he would travel to the All India Institute for Medical Sciences (AIIMS) early in the morning, negotiate the intricacies of the bureaucratic processes and make himself available for treatment.

As it stands, effective public health insurance is by and large absent in the Indian health scenario. In its place, the only financial respite for the poor comes in the form of subsidized treatment at government facilities. The bureaucratic procedures involved in procuring these government grants are daunting at best; very few cancer patients are able to transact the opaque bureaucratic process within the time allowed by rapidly progressive malignancies. Fortunately in Rajesh's case, where kinship had failed, a local network of knowledge and care stepped in. Cansupport and a sympathetic AIIMS doctor collaborated together to procure both a part-time nurse to care for Rajesh, while also taking him through the process of applying for a set of government grants.

In my conversations with Rajesh, it became clear that the years battling both the disease and the public health system and spent him. Time and again, his upbeat demeanor would collapse; at the end of one of our conversations as I made to leave, he stated baldly that if the disease returned he would not fight it again. It had deprived him of years of income and left him at the mercy of a family that had not cared for him at his most vulnerable. He had become the errand boy of the locality, earning his room's monthly rent by doing chores for his family and neighbors. His resentment towards his family was something that he had been forced to learn to hide; working for them allowed him to transact the complicated business of 'living on' with the disease. Over the next few weeks, Cansupport would try and work with its funders to set Rajesh up with a food-cart, to gain him the monetary security and independence he needed. While the biology of the disease was now in remission, the collapse of the infectious life of cancer had spread outside the body, jeopardizing his will and ability to carry on.

Dwaipayan Banerjee is a doctoral candidate at the department of social anthropology at New York University. Prior to his doctoral candidacy at NYU, he graduated with an M.A. and an M.Phil in sociology from the Delhi School of Economics, India. He has recently completed ethnographic work concerning the experience of cancer, pain and end-of-life care in India. His research follows the circulations of these experiences across different registers - language, medicine, law and politics. His broader interests includes working at the intersection of philosophy and anthropology, as well producing and studying ethnographic film and media.

The Story of C.: Teaching Poetry to Children with Disabilities

March 13, 2008 at 10:46 am

Nicole Hefner and one of her studentsCommentary by Nicole Callihan, Teaching Artist for Teachers & Writers Collaborative and Language Lecturer at New York University

Spring seems to be rearing her pretty little head again, and I find myself back in the Staten Island classroom working with students who have moderate to severe cognitive and mental disabilities. It is a welcome respite from my New York University classroom where we discuss ideas and complicated syntax, organic forms and rich tension. In the Staten Island classroom we are terribly content with nothing more than the small glittery cardboard box that we call the "Magic Poetry Box."

Each week the Magic Poetry Box is presented with great fanfare. After the oohs and aahs (given without a trace of irony), a student volunteers to reach in and unearth the day's lesson. On Valentine's, the box contained hearts, and we wrote love poems; on a particularly gray day, a tiny squirt bottle of "rain" was tucked inside, and we wrote March Rain Songs. Yesterday, though, the box contained nothing. I thought C., a nine year-old boy with autism, might cry. "Nothing?" he asked. He grew panicked, rocking back and forth in his chair. "Nothing?"

"But wait," I said. "I think I hear something." I pulled the box close to my ear. All six students (all on the lower functioning end of the autism spectrum) looked at me. They waited. Before we knew it horses galloped, dogs barked, wind blew, and we were standing on the beach getting ready to fly to the sun which would, they told me, keep our wings warm.

This is my tenth year of working with students with autism. I had no formal training, and my knowledge, like so many other Americans a decade ago, was limited to Dustin Hoffman's portrayal of Raymond Babbitt in the film Rainman. In the years since, autism has come to be far more recognized and diagnosed. Everyone seems to know someone whose son (boys diagnoses far outnumber girls) has some form of autism. But even with the prevalence, we still know so little about the condition.

I was at a loss when I first entered the classroom with these students. I had been accustomed to working with second and third graders for whom the "imagination" was the Ferris wheel of the mind. They loved it. "Be a shell," I'd say, and they'd whip up notebook pages filled with stories of basking in the sun, of Puerto Rico and mangos, of being found by a lonely little girl who ever so gently brushed the sand off the edges. "Be a bear! Be love! Be anything! Just pretend," I told them, and they did.

But my tricks got me nowhere in the new classroom. The students didn't even stare blankly at me. They stared away, one biting his hand, one banging the table, the others simply not there. As I was leaving, the teacher pulled me aside. "They don't really get the imagination thing," she said. It was winter, and I was in Harlem. I had a long walk to the subway station, and even now I remember the bleak ice patches on that walk and thinking "The imagination thing? What do you mean they don't get the imagination thing?"

For years, I took this advice to heart. I read up on how children with autism thrive on repetition and systematic learning. I would hold up a blue circle, make them touch the circle and say blue. "Blue," they said over and over, one by one around the table: "Blue, blue, blue." But something was still missing. Yes, the students were "doing the poetry lesson," but there still lurked a terrible lack of connectionaand connection, if you've ever known someone with autism, is exactly what you crave when you're near them.

Trapped by the monotony of that blue circle, my lessons grew increasingly animated. I thought that if I could flap my wings hard enough or raise my voice loud enough I could actually getaand possibly even keepathe much coveted eye contact. I was careful, though, very careful about the way in which I approached issues of the imagination. We weren't birds; we moved our arms as if we were flying like birds. I tapped into two things, however, with this last bit of arm-flapping.

What I first came to realizeaand have employed ever sinceais the necessity of a movement component in working with these students. They respond particularly well to yoga, but any sort of directed movement speaks to them. It seems that once the body really gets to move, the mind follows. I also realized that with enough repetition of imagining the students found that they could use their own imagination. It was as if we had exercised that muscle as well.

Years ago, I replaced my blue circles with the Magic Poetry Box; the "color drill" was no longer satisfying for anyone involved. Yesterday, though, was the first time I took the risk of letting the box contain "nothing." We passed the box from student to student, each one holding it to his ear to tell us what he heard. When I got to C., I was a bit nervous as he's known for his very physical fits of frustration. "Can you hear anything?" I asked him. I looked over to one of the teachers who shook her head ever so slightly and shrugged. "Anything at all?"

C. was silent for some time. I couldn't shake the fear that he'd push the chair back and fly into a rage breaking the delicate atmosphere that the teachers and I worked so hard to maintain. I played the lesson over in my head wondering why I hadn't just brought in shamrocks or a lucky pot of gold. I thought back to the teacher from Harlem who had so long ago warned me about the imagination thing. And then, finally, C. spoke, "dog?" he said, almost asking, but then he said it again, louder. "Dog," he said, "barking. Barking loud and chasing a cat." And we clappedathe other students, the teachers, me, even C. clapped. The rest of the hour slipped past us, and we said our goodbyes as I placed the lid back on the small empty box.

It's interesting because there are days when I've felt silly carrying that box into the school; its campy unveiling has struck me as ridiculous, its paper hearts clumsy. But yesterday, carrying the box down the well-lit hallway, the box was nothing short of what I've been calling it for years: magic, absolute magic. I can only hope that it will continue to work its magic in the years to come, letting imaginationsaespecially those that seem locked so deep withinafind their way to the delicate surface.

What Is Medical Humanities and Why?

January 25, 2008 at 11:25 am

Left and right brain function
Commentary by Jack Coulehan, M.D., M.P.H., Professor Emeritus of Preventive Medicine and Fellow, Center for Medical Humanities and Bioethics, Stony Brook University, New York

"Medical humanities" is one of those I-know-one-when-I-see-one terms. Taken literally, the two words have about the same level of specificity as would "medical sciences," which includes everything from biochemistry to pathology. No wonder our scientific colleagues press us to give a more precise definition or, even better, an accurate description of just what we are trying to accomplish in medical humanities curricula. Unfortunately, believers tend to assume that our colleagues might easily understand the importance of medical humanities, if only they opened their eyes and adopted a different paradigm. In my experience only underdogs and fuzzy thinkers ever talk about paradigms.

To me it's surprisingly difficult to say with any degree of clarity what medical humanities is. It certainly isn't the medically relevant content of allaor most, or for that matter, anyaof the traditional humanities disciplines. We don't engage literature, history, philosophy, anthropology, religion, and so forth in any substantive way. While we do, or should, teach bioethics content in some depth, medical humanities folks often recluse themselves from bioethics as such. Yes, we dabble in literature, and more generally, narrative. History plays a role and sometimes theater and film. But what else? Does humanities include communication skills? Or spirituality? And what about more traditional stuff like medical sociology?

Medical humanities relates to, but is not identical with, the art of medicine, for which nowadays we often use the word "doctoring." Doctoring requires communication skills, empathy, self-awareness, judgment, professionalism, and mastering the social and cultural context of personhood, illness, and health care. Learning doctoring includes a process of character formation that requires years of role modeling and guided practice. We base our claim for the importance of medical humanities on the assumption that our teaching contributes significantly to the development of doctoring skills. However, a moment's thought should tell us that physicians of the past must have learned these skills without studying such a discipline, and many continue to do so today. Thus, whatever medical humanities is, it's not a sine qua non for professional formation.

The claim that medical humanities curricula help our students become better doctors has another interesting aspect. Our use of the term "better" suggests a practical moral dimension, i.e. young physicians will care for their patients more effectively, if they study medical humanities. However, although humanities disciplines once counted moral education among their goals, they no longer do so. Today you don't study history or literature to become a better person. So, from an academic perspective we appear to be way off-base when we co-opt these disciplines for a practical moral goal not shared by their "mother" departments. This makes defining what we're doing even more confusing.

Despite all this, medical humanities feels right. As with any new field, it's full of enthusiastic advocates who aren't afraid of rocking the boat. At present medical education is a patched-up old hull that could sink at any time. Boat rockers are important to help convince the rest of us that we better get to the shipyard quickly and find ourselves a new model. I suspect that humanities educators who succeed at this do so because they are sensitive and thoughtful people who care passionately about medical education and not because they know a lot about philosophy or literature. Medical humanities also points the way toward remedial education in habits of the heart. Nowadays, our culture disvalues liberal education, is skeptical of virtue, and, in particular, glorifies self-aggrandizement over altruism. Thus, today's medical students usually lack a liberal education and often a belief in virtue. These factors make them more vulnerable to a culture of medicine that reinforces egoism, cynicism, and a sense of entitlement. Medical humanities (whatever it is) may assist students in resisting these negative forces by opening their hearts to empathy, respect, genuineness, self-awareness, and reflective practice. As John Gregory wrote, "A gentle and humane temper, so far from being inconsistent with vigor of mind, is its usual attendant; rough and blustering manners generally accompany a weak understanding and a mean soul…" 1

1.Gregory J. Lectures on the Duties and Qualifications of a Physician. London, W. Strahan and T. Cadell, 1772. Reprinted in McCullough LB (Ed.) John Gregory's Writings on Medical Ethics and Philosophy of Medicine, Dordrecht, Kluwer Academic Publishers, 1998, p. 182.

Further Reflections on Medical Humanities

December 22, 2007 at 3:32 pm

Left and right brain function
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

 

The intriguing musings of Brian Dolan on this blog (Medical Humanities: Education or Entertainment?) and the incisive comment by Schuyler Henderson inevitably provoke further reflection on the medical humanities and what they are doing in medical education. I would like to add, somewhat discursively but I hope ultimately relevantly, to the discussion as follows.

In his inaugural speech as first president of the Czech Republic after the so-called Velvet Revolution brought about the downfall of communism, Vaclav Havel, also an internationally renowned poet, reflected on how new societies must be built. (1) He observed that everyone was looking toward the new government to tell them what to do, to lead them into a new way of living and a new way of being. But Havel claimed that the established political and institutional structures were unavoidably compromised, having been constructed during, and based on the assumptions and priorities of, the communist dictatorship. The people could not rely on existing bureaucracies and institutions - what already was - for guidance. Instead, they had no choice but to turn to each other. Stumbling and staggering, they would have to risk building a new world together.

Now I am not suggesting that the current medical education establishment is a communist regime; nor that medical humanities represent the voice of a people seeking liberation and freedom. Metaphor has its limits; and six years later, Havel acknowledged that although societies need to listen to poets as much as bankers or stockbrokers, the world cannot easily be transformed into a poem. (2) However, I do believe there are instructive implications to be gleaned from Havel's call to a populist-based rethinking of common assumptions in terms of ongoing debates about medical education and medical humanities.

Specifically, one of the things we learn from Havel's speech is that it is very difficult for any institutionalized power structure to change itself. The institution of medicine is deeply rooted in certain mechanistic, linear, positivist, objectivist, and reductive assumptions that are expressed every day in the ways physicians behave and the system as an entirety works; and which make it difficult to see the humanities as anything other than, at best, a nice but not essential, part of medical education; and at worst, pretty much a waste of time. Even if institutionalized medical education "makes room" for the humanities, it will do so on its own terms. This is not necessarily bad, but it is also not necessarily sufficient. As a particular instance of this difficulty in expanding its parameters, I will offer the example of "rigor" vs. "entertainment."

A pervasive criticism of the humanities among basic scientists and many clinicians as well is that they are a "soft" endeavor, a pursuit falling entirely outside the realm of science. The implication is that, therefore, they have little or no place within a scientifically-based profession such as medicine. The demand from the existing power structure of medical education is that the humanities justify themselves as a "rigorous" discipline; and many within the humanities are only too happy to attempt to comply.

Now, anyone who has sat through a course on postmodern literary theory should have no doubts that the approach taken by the academy to the humanities can be as intellectually rigorous as any course in biochemistry or pathophysiology. However, perhaps this is not the point, or at least not the most important point. No one would deny that one of the potential contributions of the humanities is to develop in its students the fostering of critical reasoning and judgment based on close observation of textual evidence and lucid argumentation in support of such. But is that the main reason the humanities are part of medical education?

We can discover one possible answer in Margaret Edson's play, Wit. (3) Here we see the fiercely intelligent scholar Vivian Bearing coming up against the limits of intellect in her struggle against ovarian cancer. It is not that her brilliance is irrelevant, but that it can carry her only so far in her journey toward death. What she needs at some point is compassion, empathy, nurturance, and caring (stereotypically embodied in the nurse Susie). The play in its entirety conveys the realization that intellect unaccompanied by love is lacking in the face of suffering and death.

How does this lesson pertain to the question facing teachers of medical humanities regarding the relevance of their discipline to medicine? One possibility is that we should not feel constrained to argue the issue solely on the grounds chosen by the medical education establishment. As outsiders in the culture of medicine, humanities scholars understandably feel the need to gain credibility and legitimacy. Also understandably, they believe that they can best do so by accommodating to this system's rules: e.g., set behavioral objectives, define skill sets, identify competencies, quantitatively measure impact. There is nothing terribly wrong with taking this approach. But I question whether following rules promulgated by the basic sciences adequately conveys the richness, complexity, and yes ineffability that the humanities have to offer medical students.

No one disputes that rigor, cognitive discipline, and the development of intellectual faculties should be stimulated at all levels of the academy, equally in biochemistry and in a class on pathography. But is intellectual rigor the only thing that matters in this debate? No one wants to water down their discipline, least of all "outsiders" accused of softness and marginality. Because humanities scholars in these settings are not training other humanities scholars, but physicians, the goals and emphases of their teaching must be different. To my mind, the issue is not dumbing-down or watering-down, but essentializing, focusing on the heart of the humanities that is of real value to the physician. This may be defined in part by "rigor," but as Wit suggests, it may be defined according to other criteria as well, if we choose to do so.

I do not think that, at this moment, we have agreement on what should comprise this essential humanities core. But it is clear to me at least that the great, unique power of the humanities lies in their capacity to engage the emotions as well as the intellect, to move the heart while provoking the mind. In this regard, the humanities are supremely relevant to the education of physicians, because this balance of intellectual steadiness and emotional tenderness (in the words of Jack Coulehan) is exactly what is required of them in every single clinical encounter. (4) Emotionally connecting with (as opposed to simply intellectually comprehending) issues of multiple perspectives, ambiguity, complexity, failure, suffering, commitment, and devotion (to mention only a few) cannot be avoided in medicine, and can only be learned through engagement with the humanities in some form or other.

And this brings us to Brian Dolan's speculations about "entertainment." Suppose medical students' exposure to the humanities is not always "rigorous"? Suppose it involves attending the above-referenced play Wit; or strolling through a museum; or writing a poem? Suppose the humanities do, at times, "entertain" their students? Who is to say that it is not through "entertainment" that equally important educational experiences can occur? We in medical education should be exquisitely aware of the power of the hidden curriculum, a curriculum that technically does not exist at all, yet shapes student attitudes and values more strongly than any formal course. (5) The method of delivery should be just that - a means to an end. It is because we are often not clear on what we really hope to achieve with our medical students in bringing them into with the humanities that we focus so obsessively on whether our teaching sufficiently conforms to the "rigorous" standards of other aspects of the curriculum.

Humanities are a way to teach people to think about, understand, be moved by and engage with the human condition. If we can accomplish this end, in ways that are rigorous, or entertaining, or both, we will be on the path to creating a new "society" of physicians, who look at patients and doctoring very differently than the present generation. In doing so, we cannot rely on the educational institutions in which we find ourselves, because they were created out of modernist, Flexnerian assumptions about the nature of health, illness, and medicine. We must rely on each other, on communities of individuals, comprised of humanities scholars, clinicians, and even basic scientists who share certain visions and aspirations for healthcare, and who are willing to risk teaching in ways that honor the full potentiality of the humanities in medical education.

References

1. Havel, V. New Year’s address to the nation. 1990.http://old.hrad.cz/president/Havel/speeches/1990/0101_uk.html

2. Havel, V. A farewell to politics. The New York Review of Books. 49:16, October 24, 2002. http://www.nybooks.com/articles/15750

3. Edson, M.. W;t. New York: Faber and Faber, 1999

Coulehan, J.L. Tenderness and steadiness: emotions in medical practice. Literature and Medicine. 14:222-36, 1995

Lempp, H. and Seale, C. the hidden curriculum in undergraduate medical education: qualitative study of medical students’ perception of teaching. British Medical Journal. 329:770-3, 2004

Medical Humanities: Education or Entertainment?

November 8, 2007 at 4:46 pm

Medical Humanities: Education or Entertainment?

Commentary by Brian Dolan, Ph.D., Professor of Social Medicine and Medical Humanities at University of California at San Francisco

A few weeks ago, I hosted a workshop for faculty from a number of campuses who work within medical centers and are involved with medical humanities courses or programs. My opinion at that time was that scholarship and courses in the medical humanities needed to be academically rigorous to gain credibility amongst medical educators who are obsessed with defining skill sets, setting objectives, and measuring the "impact" of course content. I was (and am) not prejudging anyone's commitment to academic standards. But if anyone had experience anywhere close to my own, it probably involved meeting with skepticism from within medical centers about the uses, or "value added," of providing instruction in medical humanities in an already overcrowded curriculum. Fundamentally the challenge of maintaining a role for medical humanities seems to lie in balancing the students' desires for freedom of intellectual inquiry with an institutional pressure to herd.

I asked others what kinds of projects are supported under the name of medical humanities in their institutions. Does a jazz session count? Painting? Poetry writing is very popular amongst students, residents and faculty, but why, I wondered, can't that just be called a hobby? On the other hand, we have an "art for recovery" program, and it raises provocative questions and potential data about the importance of humanities-based therapeutic intervention for patient care. Thinking I was playing devil's advocate, I asked why all this had to be brought further into the classroom and formalized, naming specific skills and objectives to be met through such instruction? Might that raise further problems rather than provide increased opportunities for the students? What follows is a paraphrasing of my thoughts and discussions about this.

Would medical students want to pursue course work laden with the requirements that match the rigor and standards set for students geared for a different degree path? Why not, I thought. When I was in college I took electives to see what other fields were all about and I didn't expect to be given a watered-down version. It would be offensive to humanities scholars to ask them to present their subject in a different way to medical students. Esteemed colleagues of mine who hold MDs and teach courses in writing believe in the rigor of course workathey themselves have enrolled in humanities courses and on occasion received other degrees. On the other hand, I repeatedly hear that medical students don't read, so don't assign too much. And is going into Foucault's notion of the "clinical gaze" really necessary? Is there utility in making medical students genuflect to the humanist-theorists in the way that professional humanists need to do for career advancement?

But who said anything about professional humanists (i.e., people with PhDs in history, literature, philosophy, etc.)? I have also been told that medical students will not really pay attention unless the instructor has a MD. They need role models, leaders who will show them that it is OK for MDs to pursue such interests. Also, unless you have been in the clinic, it's hard to share the emotional reasons why humanities are useful. It sounds like it's therapy, I say, a different kind of utility than opening up new research methodologies for reflecting on the complexities of modern medicine. It then struck me that the distinction between "education" or "entertainment" is not absolute but relative to what one wants out of it. The humanities can represent deeply philosophical, pragmatic, emotionally driven and/or entertaining approaches to understanding the human condition and the social relations of physicians, scientists, patients and the rest of the world.

The dilemma of medical humanities is not that it is reduced to a formulaic set of educational goals or dismissed as a form of entertainment, but that it is a "field" with no boundaries, yet apparently centered on each individual. To think and act like a humanist-physician or humanist-scholar requires an understanding of one's relationship to the rest of the world. Whether one is analytical in approach or expressive, a chronicler of the times or a jazz musician, the humanities supports your form of engagement. It seems counterproductive to reduce this to skill sets and the mechanics of cognition. "The medical humanities" is a form of consciousness about all that is educational and entertaining about being human. It embraces what should be the overwhelming commitment of every medical school: to honor art and humanism in medicine, however that is expressed, and by whomever it is expressed. The lesson of medical humanities ultimately relates to respect for others' views, but formalizing that runs the risk of excluding people from that lesson-plan. My feeling now is that medical humanities should not be curricular-bound; it is too big for that. Rather, it should be articulated and supported as part of campus culture, contributed to by everyone who thinks of themselves as a humanist. This does not exclude instruction or "education," but neither does it dismiss "entertainment." In fact, make the elective or non-credit classes entertaining. After all, that might be more important than subjecting students to another test.