Connections

April 1, 2008 at 9:35 am

Fluorescent cranial nerves
Commentary by Madge McKeithen, M.F.A., writer, and teacher of writing at The New School, New York City

A poem…can uncover desires and appetites buried under the accumulating emergencies of our lives, the fabricated wants and needs we have had urged on us, have accepted as our own. It’s not a philosophical or psychological blueprint; it’s an instrument for embodied experience….After that rearousal of desire, the task of acting…is ours.
Adrienne Rich. "Voices from the Air." What is Found There

Picking up a line

The first symptoms of my son's illness appeared in the second half of 1997. Diagnosis eluded the numerous doctors we consulted. By 2001, symptoms had appeared and worsened to the degree that a special living situation for him and a modification in my professional life were necessary. I left fulltime teaching for writing and a degree that would allow me to teach writing; I began reading poems avidly and writing the story of my son's illness in response to the poems. Blue Peninsula, published in 2006, came from that situation and experience.

Over the last two years, as I have read from this book publicly and in medical and academic settings, I have found myself not infrequently in the middle of conversations that are not fully happening — what could be vital and creative exchanges falling short between health care providers, medical humanities faculty, and the general population (past or future patients). As a writer, a teacher of writing, and a mother of two sons, one of whom is likely to keep us engaged with the medical community regularly and long-term, I ask, "Why the divide, the compartmentalization, the parallel and transverse monologues when literature and the arts offer expanding connections?"

Following it along

Literature is being engaged on multiple sides of the physician-patient dialogue. Medical humanities and narrative medicine programs are offering medical students, residents and physicians the power of literature and art alongside their clinical practice. Patients and advocacy groups are bringing literature into the patient experience as well. And on each side, regular examination of the value of the undertaking, a sense of marginalization, and a desire for a more expanded, richer connection with others involved in similar programs are close to the surface. Good news. Websites, databases and blogs such as this one are connecting the dots, and fledgling programs are benefiting from learning about and possibly collaborating with more established programs.

Facing illness from anywhere in the room can be a lonely business. Why not look wherever possible for connections? Why settle for connections being spotty and erratic, the exception and not the norm?

Time — is the common, unsurprising response. The pace around health and illness can be fast, sometimes urgent. Time as an important factor — important to medical education decisions, to delivery of care, to quality of care and cost considerations, and to the limited resources and energies of all involved — is hard to deny.

Crossing it with others

When I first discussed with a few friends the poems I had collected and how I thought I might use them to tell my son's story, a poet said, "Invite the doctors to leave clinical time to enter poetic time, if only for a little while." As I have suggested "poetic time" to audiences of neurologists and senior citizens, college students and professionals before reading from John Donne or Emily Dickinson or W. B. Yeats, the nods of comprehension have been almost instantaneous.

I invited them to step to the side of the moment's rush, to let a poem hold us temporarily in place before returning to the other content at hand with something we had not, perhaps, been able to identify beforehand as being needed. At Mayo Clinic, the poetic time provided a place from which to consider how to communicate with a patient whose 18-month-old daughter's condition could not be diagnosed until symptoms worsened, a place from which to admit the emotional strains of being the specialist at the end of a long line of unknowns. For senior citizens who spend more time than they would wish in doctors' offices, the poetic time allowed consideration of insecurities, frustrations, and then, the surprise of common ground.

Time, reconfigured by poetry, allows connection.

Cross-disciplinary endeavors in health and humanities are yielding good fruit - hybridized perhaps, new, challenging classification and valuation. Communications and connections are growing and regenerating among the innovators in the field. Is more possible?

Stretching further

Embodied experience, Adrienne Rich's words come back. Actions, small and large, fully experienced and communicated. Internet sites providing descriptive and evaluative information about programs, forums for sharing initiatives and experiments, joint presentations at conferences and workshops, writing, reading, publication.

I imagine a doctor and a patient facing a tough situation, a diagnosis difficult to deliver or to make. I imagine neither of them wanting to be in that conversation. What poem might each hold (figuratively or literally)? What one between them? Many come to mind — part of the beautiful multiplicity of poetry. The patient's poem might invite her to consider herself both fully flesh and more than her illness; it might achieve its lift or transcendence with a surprise twist of humor. The one in the physician's pocket might also invite an approach to grasping his humanity, a setting of resolve or the loosening of familiarity. And between them they might, as William Stafford writes, stumble on words, "a program of passwords. / It is to bring strangers together."(Ref. 1) An important difficult conversation that might not have happened does.

The intersections of literature and medicine, health and humanities, patient and physician bring up real possibilities for new and expanded connections that themselves may generate new possibilities, discoveries, and ways of thinking. William Carlos Williams queried "What kind of a mind…is most likely to make useful discoveries" and answered, "the mind which will be human in its perceptions and skilled in transverse, not perpendicular ways." (Ref. 2) Not only whether but how we connect across these divides will change outcomes. The experience and desire are engaged, the task of acting…is ours.

References
1. William Stafford. "Passwords." In: Passwords (New York: HarperCollins) 1991
2. William Carlos Williams. The Embodiment of Knowledge. (New York: New Directions) 1974, p. 64

 

 

Biocultures: Take 2

February 11, 2008 at 2:27 pm

Designer babies, Rowena Dugdale, Wellcome Library, London
Commentary by Bernice L. Hausman, Ph.D.,Department of English, and coordinator of the undergraduate minor in Medicine and Society, Virginia Tech.

On December 29, I acted as respondent to a panel on biocultures at the Modern Language Association meeting. The panel, "Biocultures: An Emerging Paradigm," was organized and chaired by Lennard Davis, who read from the manifesto (written with David Morris) introducing the recent issue of New Literary History (vol. 38, no. 3, 2007) discussed by Brad Lewis in his August entry to this blog. Jonathan Metzl gave a paper on "Protest Psychosis: Race, Stigma, and Schizophrenia," while Jay Clayton spoke on "Victorian Epigenesis: Inherited Behavior without Genetics." This blog entry is an edited version of my remarks.

Data and truth

Every year I lecture to the Careers in Medicine class at Virginia Tech on the social contexts of medical practice. This fall's lecture was "Against Health," inspired by a conference put on by Jonathan Metzl at the University of Michigan in 2006. Based in a Foucaultian paradigm to explicate the normalizing effects of biopower, the lecture challenged the idea that "health" is an unalterable good based in the truth of scientific evidence. I had focused on the problem in making "health" the goal of life a not a means to a good life, but a substitute for life altogether, such that working for health has become a major preoccupation for many people and is now a measure of goodness, morality, and righteous living. Since "science," through what is now called "evidence-based medicine," provides the ballast for concepts like "health," "health" is unassailable. "Health" cannot be challenged because it is based in the truth of scientific study. But that is only through a very narrow framework for analysis a the same kind of framework that suggests that one's eating habits should be determined by the results of a blood cholesterol test rather than cultural traditions or the local availability of various foodstuffs. I was trying to dislodge this narrow framework by suggesting its stresspoints and problems, by highlighting the historical particularity of lifestyles framed by scientific studies and medical prognostications.

At the end of the lecture, one frustrated premedical student asked me, "what's your data?"

As Lennard Davis points out in the manifesto, "data" is a point of contention between the sciences and the humanities, despite decades of excellent research in science studies. Indeed, we still operate with the understanding that in the humanities we have "critical thinking (i.e., no data) while in the sciences there is strong data, usually conveyed in numerical form. Having no data is tantamount to having no truth. In the cynical view, "critical thinking" might be figured as that activity one engages in the absence of any clear truth, the intellectual game one plays with no data. "Critical thinking" is what the humanities offers the world, but only because the field is perceived to lack true data and the valuable facts that emerge from it.

Why we need biocultures

Any biocultural synthesis thus faces the degraded profile of the humanities in public culture and the hegemony of "science" over "truth." Even in arenas where humanistic knowledge might be especially helpful, it is absent or denied. At the 2006 International AIDS conference in Toronto, the social sciences made it into the program, but the humanities were completely absent. One session I attended addressed "controversies around prevention strategies for sex workers and injecting drug users, showing how politics and ideologies are pitted against "good science"." At this session I was struck by two assertions a 1st, that good science is as an antidote to politics and ideology, and 2nd, that scientists are equipped to identify and overcome ideology. I suggested, in keeping with Len's claims, that in addressing these issues, "scientists should look to . . . humanists and interpretive social scientists who think about the work of ideology and its sociocultural effects."

This is precisely the kind of intervention that Jonathan Metzl is making in his research on the racialized meanings of schizophrenia in the twentieth century. His claim does not merely concern the social determinants of disease categories and understanding, but addresses how the diagnostic process itself is racialized. He argued that schizophrenia actively functions to "enable mainstream America to grapple with" effects of the Civil Rights movement on the meaning of America; this claim demonstrates how biocultural analysis understands diseases as "disease entities," in Len's words. Jonathan's project moves us closer to Len's suggestion that "experiments using 'race' [would] be better a produce more reliable facts a if they employed a biocultural notion of what race in fact means." Feminists have connected mental illness diagnoses to normalized and heavily gendered cultural scripts; it is time to determine how race figures in the construction of mental states and disease entities.

But how do we keep biocultures from being another form of enhancing science's own projects, especially ones that misrecognize the existing and potential contributions of humanistic inquiry?

This is the problematic addressed by Jay Clayton in his paper on the new Neolamarckian epigenetics; he suggests that in policy contexts, "our (that is, humanists') absence from the room skews the resulting image of culture." The time is ripe, he argues (although without cliche), to move into the policy arena through the specific study of literature and an understanding of its historical embeddedness. This deep understanding, as opposed to the vague gesture toward literature as the repository of timeless values, allows literary humanists to engage knowledgeably in the important ethical and policy debates surrounding new technologies, practices, and aspirations in the biosciences. We must enter into what Jay calls the "semi-autonomous realm of policy" a the institutional context that, in his words, "gives critique at least a chance of having real consequences."

Revitalizing the humanities: biocultures in the contact zone

The biocultures initiative asks us to get into the scrum and tangle with the significant scientific and medical issues of the day. This endeavor stands to revitalize the humanities. It does so not only by insisting on putting scientific endeavors in context, but also by rethinking humanistic inquiry itself, particularly how its findings are unique and potentially useful to those who are not by profession nor inclination humanists. Significantly, Jay argues that we must do this by coming forward "as experts in our own fields," not through a flattening of our interpretive acumen or a repackaging of our ideas to "the people." Policy contexts are, indeed, a good match for the kind of analyses we develop in literary and cultural study a attentive to detail and consequence, broadly descriptive but at the same time focused, our interpretive practices tend to take an example, develop an understanding of context, and make broader conclusions with suggestions for caution and specificity. These seem ideally suited to public policy.

In the case study example that Jay provides, current epigeneticists are confident that their support for directed evolution and the inheritance of acquired characteristics, based in "strong" data, will avoid eugenic tendencies and arguments for intelligent design, both construed as ideological overlays on scientific findings. These arguments seem to replicate the "good science" over "bad ideology" claims made in Toronto that I alluded to earlier. Literary analysis allows us to see the mutual and inevitable imbrication of science and ideology, such that the good and bad cannot be disaggregated from the mix so easily and assigned a stable meaning. As Jay points out, culture mediates the meaning of scientific findings in ways that scientists rarely control. The difficulty of separating science from ideology, beliefs grounded in "data" from utopian longings, is captured in Charlotte Perkins Gilman's Herland, another Neolamarckian text devoted to eugenics and presenting a feminist utopia simultaneously enabled and marred by its racist science. The modern history of biology is haunted by the "race problem" because it remains culturally unsolved, and vice versa a the modern history of culture is haunted by the "race problem" because race remains a biological puzzle, seemingly evident somatically but nonexistent in a genetic sense.

Finally, the biocultures paradigm suggests that the answer to "What's your data?" is neither the social construction of knowledge nor the idea of the text. Data is the selective information that we interpret as findings. All disciplines engage in this exercise, as Len suggests in the manifesto. The data themselves are facts, but they are not in themselves significant without interpretation. In literary analysis, reading produces data analyzed through the varied frameworks of criticism. Our expertise is in identifying, selecting, and interpreting the data of textual and discursive contexts, and linking these to broad cultural patterns, both historically and contemporaneously, as well as developing rich understandings of the complexity of linguistic significations.

In the language of my institution's former tag line a "putting [this] knowledge to work" a or, in its new brand a using it to "invent the future" a I want to advocate the serious challenge this expertise represents, especially to status quo humanities. Revitalizing the humanities through biocultures will only happen when we begin to believe that speaking beyond our own kind, and presenting our evidence for others, matters. Because we so often speak in forms of discourse meant only for our own kind (that is, decipherable only by other literature professors), I can only deduce that we do not think our contributions to knowledge make a difference outside our own, relatively enclosed, worlds of practice. As Jay made clear, the answer is not a dumbed down humanism but a willingness to engage with that expertise a its data, its interpretations, and its knowledge in the strongest sense a in the contact zone of public science policy.

Editor’s note: Those who don’t have access on-line to New Literary History will find a similar version of the biocultures manifesto at the biocultures website:
http://www.biocultures.org/index2.php?page=links

Toward a New Aesthetic of the Body

October 21, 2007 at 6:34 pm

Stretching Figure with Vertebral Scoliosis

Commentary by Laura Ferguson, Artist working in New York City

Can a deformed body be beautiful? Yes, through an artist's eyes - and I believe art can help medicine to broaden its vision, and embrace a new aesthetic of the body.

I'm an artist and for the past twenty years I've been using my own body, inside and out, as the subject of my work. My anatomy is an unusual one because of scoliosis, a curvature of the spine, and I found intriguing visual possibilities in the image of a body that was beautiful yet flawed. My drawings are quite intimate and personal, and at the same time strongly based on science, on an understanding of anatomy and physiology, and specifically on medical images of my own skeleton that were made for this purpose.

To help me deal with pain and physical frailty, I turned to movement practices like yoga, Alexander Technique, and neuromuscular training. I learned how to compensate for muscle and joint imbalances and make subtle postural adjustments. I came to know and feel my body from the inside out, becoming more sensitive to its proprioceptive, inner body sensors and signals. I felt more symmetrical, whole, centered, and three-dimensional in my physical being - and better able to convey that sense of myself through the images I made.

I came to understand scoliosis as having a complex rotational dynamic, arising out of a growth process, albeit one that has gone awry. That allowed me to visualize my curving spine as a manifestation of flowing energy: in my drawings it's a graceful and sinuous shape that helps me to endow a still figure with movement.

The most powerful response to my work has come from people who have unusual anatomies themselves, and have never before seen such bodies portrayed as beautiful. I'll let a few of these viewers speak in their own moving and eloquent words:

I have to tell you how deeply exciting and beautiful I find your work. My right arm and leg were amputated two years ago, and I'm just now developing a friendly relationship with my body. You have helped me feel beautiful.

Your pictures have helped me to become more accepting of my body… Your drawings reflect a very whole person, not just a body. The figure is lovely, expressive, open and explorative…. This has had a greater impact than my friends trying to convince me that I can be crooked and desireable both! Well, your work proves that.

Somewhat to my surprise, many doctors and medical professionals also respond strongly to this work. It gives them insights into what it feels like to inhabit such a body, they tell me, and allows them to see beyond the deformed spine to the beauty, humanity, and individuality of the person. Still, almost all the orthopedists who tell me they love my work also try to convince me I should have more surgery - whether or not I've asked them for medical advice. Ultimately, it seems they can't help but see an unusual anatomy as a problem to be fixed.

As an artist, I understand that fixing, healing, transforming an abnormal body into a more normal one, is what gives doctors satisfaction, a sense of accomplishment - that it is their form of creative expression. But the result is that there is no alternative paradigm offered to patients, no acknowledgment that an unusual body might be okay the way it is - that there doesn't have to be a 'fix.'

I realize that the idea of deformity having its own beauty, without the need of fixing or altering, is a radical one. But I believe in an alternative vision of aesthetics in medicine, one that gives more value to process, to empathetic connection, than to fixing or curing. Art is a good place to look for an alternative aesthetic: a place where the less-than-perfect body can be shown to have its own kind of beauty, grace, sensuality, originality.

What is Biocultures?

August 24, 2007 at 8:54 pm

Designer babies, Rowena Dugdale, Wellcome Library, London

Commentary by Bradley Lewis, M.D., Ph.D., Gallatin School of Individualized Study, New York University

In my first contribution to this new blog (which I am very happy to see developing), I would like to tell the medical humanities community about an emerging approach to interdisciplinary work at the interface of biology, medicine, humanities, and culture that many of us are calling "biocultures." (www.biocultures.org)

One of the most challenging problems of contemporary scholarship involves the deep segregation of the academy: between the humanities and social sciences on the one hand and biology and the natural sciences on the other hand. This "two culture" divide has long been lamented for the biases and distortions it creates in knowledge and for the increasing risks associated with disconnecting bioscience capacities from the wisdom of history, culture, and philosophy. But, despite the seriousness of these issues, no one seems to have found a solution to the problem. The two sides of campus are so irretrievably divided that the reorganization of inquiry has seemed impossible.

Yet even as many of us have lamented this situation, a grassroots movement of academic research has gradually emerged that effectively integrates the two cultures. Certainly traditional medical humanities and bioethics are part of this grassroots movement, but more recently they have been joined by scholars in areas like disability studies, cultural studies of the body, gay and lesbian studies, gender studies, Africana studies, Asian-American studies, Latino-Latina studies, science studies, literature and science, public health, medical anthropology, medical sociology, and medical education (particularly professors of medicine and society). These scholars not only intermingle facts and values from the two cultures in their work, many of them break down the "fact/value" distinction all togetheraasking pressing questions about what are the values associated with various research agendas (the making of facts) in the first place.

The main thing missing from this grassroots movement is a common identity. This is why Lennard Davis and David Morris are proposing the term "biocultures" as an umbrella term for this group of scholarship. Davis and Morris define biocultures as a new and "counter-intuitive (but perhaps destined to be commonplace) proposal: that culture and history must be rethought with an understanding of their inextricable, if highly variable, relation to biology" (Davis and Morris, forthcoming). By providing an over arching name to these many scholarships, biocultures consolidates and strengthens this terrain. "For example, before disability studies became a common term, those working in a variety of allied fields and with a variety of impairments did not necessarily see any commonality in their various approaches. But with the advent of an umbrella term, a new and exciting synergy has come to pass. Likewise with nanotechnology, feminist studies, or critical race theory. We are not necessarily nominalists, but we do believe in the power of a name" (Davis and Morris, forthcoming).

To learn more about the emerging biocultures movement you can check out the upcoming special issue of New Literary History that is edited by Davis and Morris devoted to biocultures. Davis and Morris kick off the issue with their "Biocultures Manifesto" which will send chills down the spine of any of you in the medical humanities world who have felt that you are all alone (or almost all alone) in your university. If the biocultures movement appeals to you, please play your own part in its growth. Start using "biocultures" in your writings and courses, make lunch dates with your colleagues down the hall or across campus in similar areas, and set up biocultures reading groups and symposiums. The next thing you know, the two cultures divide will be a thing of the past and the world will be a better place!

Davis, L, and Morris, D. Forthcoming. Biocultures Manifesto. New Literary History.

See web site of biocultures project: www.biocultures.org.