Tag Archives: erythema migrans

Joining the Conversation

What’s exciting about doing interdisciplinary research is that there are many conversations to join, as Graff and Birkenstein would say. (Note: this comes from my favorite writing “textbook,” They Say, I Say – http://books.wwnorton.com/books/webad.aspx?id=4294982902). As I pull my ideas together, it’s difficult to figure out how to arrange them. I talk to my students all the time about how your arrangement should be a writing decision that is inspired by your specific audience. In the case of my dissertation prospectus (which Nick says is merely a snobby word for “proposal”), my audience is my 5-person dissertation committee. However, my project will hopefully appeal to multiple audiences–both scholarly and popular (?)–so I’m trying to think expansively from the beginning.

Here is a brief attempt at physically mapping out who I am talking to and which existing conversations I hope to touch upon:


**Where does disability studies go?!

  • Rhetoric of Health, Science, Medicine: A rapidly expanding discipline within rhetorical studies. Importantly, many recent rhetoric of HSM studies incorporate multiple, multi-genre, mixed, and/or interdisciplinary research methods to fully account for the HSM portions of the projects. This means that rhetoricians are reading peer-reviewed science and medical journals, visiting gross anatomy labs, participating in online chat rooms in illness communities, and so on. These new topics, virtual and physical spaces, temporalities (ha! academic word!) prompt us to consider new research methods, engage with literatures across disciplines, etc.
  • Visual Rhetoric: Historically, conversations in visual rhetoric have revolved around analyzing images similar to how we analyze texts (as “objects”). I am trying to move this work forward by thinking about how creating and circulating images (the “rhetorical construction,” so to speak) is important to understanding how knowledge is networked and reflexive and other rhetoric words. I don’t know much about this, so I need to go back and engage with this literature. Notably, most studies have been about student writing–ranging from videotaping and photographing student writers to looking at handwriting–and don’t talk much about the making portion or about other kinds of rhetorical studies/topics/objects.
  • Feminist Rhetoric:
    • Historiography: In my opinion, there is/should be a turn towards studying gendered practices instead of recovering individual women for the sake of recovering women in feminist rhetorical studies. Recent feminist historiographies tend to situate HSM issues from the past in the present (re: Robin Jensen’s book, Heather Adams’s dissertation project, etc.). I think that my project responds to a recent concern about how current women (?) rhetors will soon be lost, too, and thus need to be studied as well.
    • Multiple Methods: New topics and time periods call for multiple/new/combined methods!

Visual Ethnography

  • Visual Ethnography: Sarah Pink says that visual ethnography is specifically about learning about people’s ways of knowing vs. learning about people themselves. She argues that visual ethnographic work should be inherently reflexive, making the work more nuanced and preventing some of the previous ethical issues. Visual ethnography can include studying photographs taken by people in their communities, participant-solicited photography, digital imagery, and more. Visual ethnography specifically prioritizes images as main modes of analysis as well as objects of analysis vs. representative of something or having only one meaning. What’s interesting is that what researchers might find to be fruitful/productive/interesting might be different from what participants find to be fruitful/productive/interesting, so I’ll need to account for that in my project.
  • Visual Studies: Long history of incorporating visual work into multiple fields, including anthropology, sociology, and more recently, public health, but visuals were most supplementary and rarely the main means of analysis (vs. the object of analysis)
  • Ethnography: Long history of doing in situ work to learn about people, but in the 1980s and the 1990s, feminists and others argued against the previously lauded “objective” approaches to these studies, which sometimes included observing and writing about people without their knowledge. Recent work aims to limit these kinds of encounters…or at least be honest and reflexive about them.

Health Humanities/Arts-Based Qualitative Research*

  • Health Humanities: Area of study that has been developing since the 1980s. Contention as to whether or not it originated in the medical sphere or in the humanities. Until this point, most studies have prioritized the doctor-patient relationship and have specifically aimed to improve clinical practice. Recently, some scholars have been pushing the “health humanities” name and claiming that it implies an expanded research agenda (i.e. beyond the traditional doctor’s office related hospital spaces), but very few groups have published on it yet. There are some current publications that might fall under health humanities, but they do not necessarily identify as “medical” or “health” humanities even though they incorporate those perspectives.
  • Arts-Based Research: Nurses, occupational therapists, physical therapists, social workers, and public health experts, among others, increasingly turn to mixed and/or humanistic research methods to account for experiences of illness, biomedical encounters, and disability. Recent examples include asking female chemotherapy patients to document their experiences with illness using cameras, using photovoice, art therapy, narrative writing (Pennebaker et al. and more), etc. From what I’ve read, these methods supplement or respond to other methods, but major projects aren’t initiated based off of them. That might be changing, as I just read about an NIH-funded project at Vanderbilt that teaches teens with diabetes to create digital narratives about their illness experiences (or something–I’ll have to re-look it up), but at this point, there isn’t much beyond that.
  • Digital Storytelling: This is probably the biggest unknown at this moment. Digital stories are one of many potential “products” to come from visual ethnographies. What’s significant about products is that it can be hard to figure out which products will serve researchers and participants, honor the participants for their time and effort, and not harm anyone, even inadvertently. I think that I can use my rhetorical/teacher/ish skills to help people make visual and other rhetorical choices about how to arrange, display, and circulate their images and stories. Per the failed NIH grant, some might consider that to be “salting the mine” (i.e. prompting my participants to do something that they think I will like vs. doing something “authentic”), but Sarah Pink pretty much says that everything we do can be authentic if we honestly account for it in our own documentation and write-ups. Digital storytelling might also allow me to engage with my participants in a different way–I might create a digital story, too, and include images that they take of me. Or something. I clearly need to read more about this.

Lyme Disease: A Case Study

  • Multi/cross/inter-disciplinary: Lyme has been consistently studied in biomedical circles (including but not limited to  tick-borne disease groups, rheumatologists, infectious disease specialists, ecologists, animal scientists/biologists, neurologists, cardiologists, mental health experts, and more). This study has created a lot of contradictory data about the diagnosis, treatment, and recovery from Lyme. Also, most of these biomedical-oriented studies miss a lot about the human experience of having Lyme Disease, particularly the experience of being misdiagnosed, inappropriately treated, the expense (psychological, economic, and more) of seeking care, etc.
  • Visual: The main “non-subjective” symptom of Lyme is the erythema migrans rash (i.e. the “bull’s-eye), which is only present in about 20% of infected individuals and only present during the early stages of the disease. Compared to CFS, Fibromyalgia, and other chronic, not-completely-understood conditions with ambiguous symptoms, because Lyme has a clear, uncontested visual symptom, it makes it all the more confusing to treat with the visual symptom is not present. Perhaps accordingly, there are four standard-ish Lyme visuals that have nothing to do with ill, suffering, and/or recovering people and thus continue to shift the focus of Lyme from the human experience to the disease ecology (or whatever they’d call it). Images of ticks, Lyme spirochetes, bull’s-eye rashes, and Lyme endemic maps are seemingly unreflexively taken up by the CDC, activist groups, scientists, and more (beginning with the “discovery”/coining of Lyme by Burgdorfer et al. in 1982, as the article included photographs of spirochetes and a map of probable Lyme diagnoses in Connecticut). In turn, allowing Lyme patients to be makers of images will a) perhaps infiltrate the circuit of standard Lyme images, which definitely don’t help anyone with anything (particularly patients seeking care and treatment), and b) allow ill individuals to become authorities in their own health situations, since Lyme patients are often mis/disbelieved for a variety of reasons. Maybe these images will help Lyme patients leverage something–better care? More understanding from confused or skeptical family members? A way to communicate with other suffers and/or the general public?
  • Rhetorical: The contradictory guidelines for diagnosing and treating Lyme Disease are completely rhetorical. Not much has been discovered about Lyme Disease (in terms of scientific studies), but the statistics and “knowledge” about it changes constantly. For instance, the CDC “updated” the number of suspected Lyme cases in the U.S. from 30,000 to 300,000 in May 2015, which is a pretty huge discrepancy. Since no one can even agree on a name for Lyme/its stages (i.e. “Chronic” vs. post-treatment Lyme, etc.), it continues to be a public health concern that can no longer be investigated only via biomedical research methods.
  • Feminist: I’d like to believe that studying historically underrepresented individuals and groups is inherently feminist.
  • Embodied/in situ: I don’t believe that Lyme can only be studied by looking at the discourse. Much like how Latour and Woolgar went to the lab to learn about how research was done, I think that Lyme (and perhaps other health, science, and medical issues and topics) calls for, if nothing else, a multi-method approach. I can learn a lot about Lyme by reading peer-reviewed articles in scientific and medical journals, but I can situate this knowledge in a specific context by studying Lyme activist group websites, visiting support groups, journeying to Lyme, CT to learn about the environment that continues to breed high rates of Lyme, going to Lyme clinics like Hopkins, etc.
  • Reflexive: As a former/current/who knows Lyme patient, I want to account for my research angle and want to make sure that it doesn’t get in the way of my project or answering my research questions.

Now that I’m thinking about it, maybe this digital stuff should go in its own section?

*These are probably separate things, but I’ll parse them out later.



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