University: West Virginia University
Description of Work:
Before I got tenure, most of my publications fell somewhere in the realms of science and technology/cultural studies and writing pedagogy. My current (and for the foreseeable future) research is concerned with textual and rhetorical practices in health and medicine. In particular, I am working on several projects related to the divergent behaviors of healthcare participants (patients, providers, systems, and processes) and their relationship to debates about compliance/adherence. I also partner with community non-profits and WVU’s Health Sciences Center to help with the writing and editing related to various public health projects. Also perhaps of interest to attendees of this symposium, I am co-editing (with John Jones) a special issue of RSQ on Wearable Rhetorics (forthcoming in Summer 2016) that includes several articles related to health and medicine.
Here is the abstract for the project, “‘No Single Path’: Desire Lines and Divergence, a New Pathography for Health and Medicine,” that I submitted for this year’s symposium:
Because patient compliance is still so widely considered to be the ethical response to treatment advice, the possibility of making sense of noncompliance as anything other than a problem to be solved is often foreclosed. As Segal (2005) argues, “Noncompliance does not need to be obsessively measured and it does not need to be rejigged out of existence. The actions of patients need to be studied not mechanistically but with an appropriately complex theory of human persuasion and human judgment: a theory of rhetoric” (p. 151). In response to this, “‘No Single Path’’” develops a series of theses that can help us pay more productive attention to divergent behaviors in health and medicine—both to make ourselves more aware of the ways in which such behaviors challenge our ideas about what “care” is and to help us craft more ethical, effective systems of care. Informed by scholarship in medical rhetoric (Happe, Segal), disability and queer studies (Dolmage, Yergeau, Ahmed), new materialist feminist theory in science studies (Barad, Mol, Wilson), and design studies (Myhill, Norman), this essay extends the concept of “desire lines” from urban design and landscape architecture to articulate a framework for paying attention to divergent, rhetorical practices of patientism and care based on the premise that the actual (rather than prescribed) paths that people travel in health and in medicine are underutilized, valuable sources of feedback. The divergent paths and pathographies of healthcare participants, I argue, when considered outside a compliance framework that prefigures their ethical value, can evidence the ways that agency is always and already intra-active and care ought to be, therefore, an exploration of emergent, kairotic solutions.
Desire Lines and the “Unbowed Head”: Making Sense of Patient Noncompliance
The work I propose to share at the Fall 2015 “Discourses of Health and Medicine” symposium is a part of my research into transitional care communication practices and on-going debates about patient non/compliance and self-care. “Desire lines” are known in urban design and landscape architecture as the paths that people wear across green spaces. Computer scientists have adopted the concept, suggesting its importance for participatory software design, and I propose that “desire lines” can also make sense of the different trajectories of participants in health and medicine. My “Desire Lines Project,” is a multi-stage project for which I will collect visualizations and narratives of the “desire lines” of healthcare participants (initially, patients) to consider the rhetorical possibility of divergent pathographies. My long-term goal is to use this work to develop a book-length project about reconceptualizing noncompliance in health and medicine more broadly (that is, of all healthcare participants—both patients and professionals). “Desire Lines and the ‘Unbowed Head’,” the article I would like to share at the Fall 2015 symposium, will form the methodological foundation for this larger project. I will be work-shopping a draft of this article this summer at the RSA Summer Institute in the “Developing Theories about Health and Medicine” workshop (led by J. Blake Scott, Jeff Bennett, and Jenell Johnson).
“Desire Lines and the ‘Unbowed Head’” builds on my previous argument (forthcoming in Feminist Rhetorical Science Studies, eds. Amanda Booher and Julie Jung) that rather than questioning the attention paid to noncompliant acts, we ought to explore ways of paying more productive attention to them—both to make ourselves more aware of the ways in which divergent behaviors challenge our ideas about what “care” is and to help us craft more ethical, effective systems of care. Because compliance expectations are tied to the disability system in the U.S. and because compliant behaviors are still so widely considered to be the ethical response to treatment advice, the possibility of making sense of noncompliance as anything other than a problem to be solved is often foreclosed. Moreover, in spite of the fact that clinical studies routinely document the prevalence of a wide variety of forms of noncompliance among healthcare participants, adherence to medication and treatment regimes is often assumed in the development of drug and treatment protocol, and this minoritizing view of noncompliance has undermined care. Because drug approval processes assume compliance, for example, drug protocol for anti-cancer agents do not incorporate evidence of the effects of nicotine on the metabolism of expensive and powerful drugs. Consequently, physicians do not have the information they need to be able to adjust medication delivery for patients who continue to smoke post-diagnosis (and, as one recent study found, this can be as much as 60% of smokers diagnosed with cancer). This has led to both costly inefficiency for payers and less effective treatment for smokers with cancer. The “problem of noncompliance” as I define it, then, is not necessarily or only that it exists, which prefigures that the only logical way to respond to it is to fix or minimize it, but that biomedicine selectively ignores its existence and has not found a way to productively engage with it. Because of this, existing frameworks for making sense of noncompliance and transforming that understanding into actionable knowledge are rare and limited.
Informed by recent scholarship in medical rhetoric (Happe, Segal), disability studies (Davis, Dolmage, Garland-Thomson, Titchkosky), new materialist feminist theory in science studies (Barad, Heckman, Mol, Wilson) and design studies (Myhill, Norman), “Desire Lines and the ‘Unbowed Head’” articulates a framework for improving the textual and rhetorical practices of care based on the notion that the actual (rather than prescribed) wellness paths that people travel are valuable sources of feedback for systems of care. When considered outside a framework that prefigures their ethical value, noncompliant acts can evidence the ways that care is always an exploration of emergent, kairotic solutions and, therefore, the ways in which it is always already rhetorical. As Segal argues, “Noncompliance does not need to be obsessively measured and it does not need to be rejigged out of existence. The actions of patients need to be studied not mechanistically but with an appropriately complex theory of human persuasion and human judgment: a theory of rhetoric” (2005, p. 151). Following from this, rather than assuming noncompliance ought to be “fixed” via measurement, persuasion, or correction, as much of the literature about the subject continues to do, the desire lines framework takes the existence of noncompliance as an important indicator, amplifies the value of what such acts might disclose, and argues for seeking out expressions of and explanations for noncompliant acts—about care practices and compliance frameworks; about agency for healthcare participants; and about complex ecologies of care. Because the desire lines framework I articulate calls into question the requisite shame and blame reactions a culture of compliance tends to summon as well as the humanist ideas of agentic action on which such responses are predicated, my hope is that such a framework can support a revaluing of noncompliance that will be useful to understanding patient behavior—enabling more transparent conversation among healthcare participants (those giving and those receiving care); leading to the identification of emergent, collaborative solutions to the suffering that prompts people to seek care; and perhaps improving what many in critical medical studies identify as the crux of the noncompliance problem: trust between and among health care professionals and patients.