Tag Archives: health humanities

Questioning the Lyme Disease Dissertation Project

I’ve been working on finalizing my dissertation proposal for a few weeks now, and I keep having crises of ideas. Despite wonderful support from my friends, parents, #TeamRhetoric colleagues, and advisers, I remain tormented by the following questions:

Should I make Lyme Disease the focus of my study, or is that too limiting? My adviser is probably right when she says that a book about Lyme Disease, like Autism or another particular condition, may be attractive to presses because it will interest a specific population of people and thus might be more marketable. However, I can’t even think that far ahead right now. I’ve read so many articles on the ChronicleVita, and in other places about affirming that your dissertation is NOT a book and that it may not become a book, so even though my advisers think the project is promising in its current form, it’s still hard to imagine it transitioning into a book.

Is it rhetorical enough? WHAT IS RHETORIC? Why am I using rhetoric as a method and lens for analysis? Much of the research about chronic illness, gendered experiences with illness, the value of patient narratives, etc. is coming out of medical sociology and anthropology, social history, history of science and medicine, etc. I know that rhetoric, which studies how arguments are constructed and thus create ways of knowing and making meaning, is a useful way of looking at data. (By “data,” I mean any ideas, facts, or knowledge that can be investigated as a way of answering a question–which can range from narratives to images to lab tests). BUT STILL. I think what might be confusing me is that scholars and activists from these fields are trying to show how constructed–i.e. not natural–these illness things are, and that’s pretty much what rhetoricians do, so I don’t want to feel like I’m repeating work that’s already been done. I’d like to believe that rhetoricians’ perspectives bring something unique to the table, but thus far it has been difficult to parse.

What archives or primary materials am I going to investigate to make claims, and which methods will I use? When I first started investigating the health and medical humanities, I thought their methods were engaging and presented new and exciting opportunities for rhetorical scholarship. Now, however, I have to be careful that my project will be “read” as rhetorical to future job committees and tenure committees, which is forcing me to reconsider some of my (seemingly) radical methods. I spent a lot of time trying to justify why visual ethnography would make for a compelling rhetorical research method (building off of McNely et al.’s work), but I have long since moved away from the *justification* piece. If I’m going to include nontraditional research methods, I will have to spend time and space justifying it…which means that I need to figure out a) what methods I’m going to incorporate, and b) WHY they’re going to be useful and illuminate something new and exciting and different. Again, although I spent so much time toying with this visual ethnography thing, I haven’t figured out if or how it is going to work and what it might do that might be helpful.

It’s funny how these things work out. My undergraduate rhetorical education focused on feminist rhetorical history. I have since moved away from this focus during graduate school for a variety of reasons, but it’s easy to want to return to those methods because I already know how to do them. For example, I could study local and national newspaper articles to chart a revised history of the emergence of LD, which was “discovered” by researchers at Yale…who never really credited the two mothers from Lyme, CT who alerted them to the phenomena. These mothers, Polly Murray and Judith Mensch, are sometimes named in popular publications, but according to some quick researchers, never in peer-reviewed scientific ones (i.e. http://www.nytimes.com/1997/08/10/nyregion/taking-a-new-tack-against-lyme-disease.html). This gets particularly interesting because there has been some research about the sexual and in utero transfer of LD (http://www.scientificamerican.com/article/mothers-may-pass-lyme-disease-to-children-in-the-womb/), which makes me think a lot about the rhetorical characters of LD and how they have informed the LD controversy as we know it. Some sources I’ve read have argued that because LD was discovered by patients and wasn’t easily figured out by researchers of clinicians, it is deeply grounded in community efforts and thus doesn’t easily become the authority of researchers, unlike in many other cases.

Relatedly, I’ve also come upon another conundrum: If chronically ill people with controversial/emergent illnesses are doing collective action work in certain places already, WHY THE F— AM I GOING TO DO MY OWN STUDY?!  Not accounting for and valuing the work people are already doing and doing my own study instead seems to contradict everything I believe about valuing patient narratives and experiences.My preliminary research/internet perusing suggests that ill individuals are hashtagging #LymeDisease, #spoonies, #chronicpain, #chronicillness, and other terms on Twitter and Instagram (and probably other places) to visually and textually document their experiences and get community support. I’m sure there’s more out there, but I’m hesitant to jump in with both feet. What worries me about using social media as a research archive is that it seems ephemeral and might not matter in a few years. (Truthfully, I’m concerned that it will be meaningless by the time I try to publish a book). However, other people (per this Slate article from the other day – http://www.slate.com/articles/technology/users/2016/03/how_spoonies_people_with_chronic_illnesses_use_memes_selfies_and_emojis.html) are taking it seriously, so perhaps I should, too. I guess what’s been hard is that my early searches have been hard to “code,” meaning that sometimes it seems like people are  using these hashtags to gain social capital to sell something or as spam versus using it to build or enter into an illness community. My adviser suggested an interesting solution: come up with a key term or concept to help me “read” (i.e. organize, generate meaning, analyzed) these materials. For example: disability. I could look at all of the Instagram posts with a #LymeDisease tag and try to answer the question, “How do LD patients construct (or not) a disability identity?” With inquiries by disability studies scholars like Alison Kafer about who “counts” as disabled, what terms individuals with disability should or should not take up, and more, I’d like to work on answering this question as part of my dissertation. However, I feel uneasy about using social media to answer it. I could certainly conduct some qualitative interviews with individuals with LD in North Carolina and study them for similar themes. There is very little qualitative research about Lyme Disease AND very little research about Lyme in the American south, so I would certainly be generating new knowledge, but that also doesn’t feel quite right to me.

This has prompted me to consider if I should incorporate digital humanities research tools and methods into the project. LD is very much geographically bound–socially and environmentally–but should I go there?

What ideas might I use for peer-reviewed journal articles vs. THE DISSERTATION? This might seem insignificant, but I think that some of my inner chaos come from trying to narrow my focus for the dissertation but finding perfectly useful, bounded projects that might be interesting to pursue but that don’t fit in the realm of my current project outline. For instance, there are various health poster collections that are perfectly suited for rhetorical and visual analysis, but if they’re not about LD, they probably aren’t a great fit for my dissertation unless I’m directly connecting them back or comparing them with LD ephemera.

***

To begin answering some of these questions, I started playing around (i.e. “researching). I made the following list:

Possibilities for Archives/Materials:

  • Peer-reviewed scientific journal articles about Chronic Lyme Disease/Post-Treatment LD à learn about the emergence of LLMDs and the rhetorical problem of “Chronic Lyme”
  • Interviews?
  • Arts-based therapy ephemera?
  • Hash tag activism on Tumblr, Instagram, and/or Twitter à and/or ChronicBabe.com
    • Leveraging gender and chronic illness – pushing back against traditional patriarchal authorities
    • Femininity as radical, rhetorical reclaiming of authority and identity à paper I wrote for Jane’s seminar

This led me to think about Judith Lorber’s Gender and the Social Construction of Illness, so I used Google Scholar to figure out who had cited her (almost 500 people) and then, with that sect, who had also used the term”rhetoric” in their publication. Here’s a few I came up with:

  • Werner, Anne, and Kirsti Malterud. “It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors.” Social science & medicine 57.8 (2003): 1409-1419.
  • Sim, Julius, and Sue Madden. “Illness experience in fibromyalgia syndrome: A metasynthesis of qualitative studies.” Social science & medicine 67.1 (2008): 57-67.
  • Willard, Barbara E. “Feminist interventions in biomedical discourse: An analysis of the rhetoric of integrative medicine.” Women’s Studies in Communication 28.1 (2005): 115-148.
  • Bell, Mebbie. “Re/forming the anorexic “prisoner”: Inpatient medical treatment as the return to panoptic femininity.” Cultural Studies↔ Critical Methodologies 6.2 (2006): 282-307.
  • Clarke, Adele E., and Janet Shim. “Medicalization and biomedicalization revisited: Technoscience and transformations of health, illness and American medicine.” Handbook of the sociology of health, illness, and healing. Springer New York, 2011. 173-199.

Note: I got up and got a snack, but I still managed to bite off all my nails. :-/

I’m not sure where it will go from here, but I told my advisers that I’d figure it out by Sunday night…. AHHH!

 

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How to Talk About My Project: Part 1 of 1 million

I had an incredibly productive meeting with BM last Wednesday, so this morning, I’m trying to work on one of her suggestions: to get in touch with some Lyme Disease researchers and organizations (in-person meetings preferable). The first step to doing this is probably sending an email…which is actually pretty challenging for me, since I’m not quite sure how I want to describe my project. I’ve titled this post “Part 1 of 1 Million” because if I take seriously my graduate studies in rhetoric, I know that will need to frame the project in different ways for different audiences…and I suspect that, over time, I will consult with many audiences. Some options for describing my project include:

  • A project about the rhetoric of Lyme Disease diagnosis (meaning, the ways that arguments about the diagnosis of Lyme are created, debated, and circulated)
  • A project about Lyme Disease images/visuals, particularly focusing on the bull’s-eye as the least subjective symptom…which causes problems for ill people who suspect they have Lyme Disease but do not have the bull’s-eye to “prove” it.
  • A project about Post-Treatment Lyme Disease and arts-based research methods. Arts-based research methods and how they can illuminate the experience of Lyme Disease diagnosis?
  • A project about the rhetoric of Lyme Disease in which I am hoping to do a case study with a group of PTLDS people using visual ethnography.
  • A health humanities project about the visual rhetoric of Lyme Disease, focusing on the presence or absence of the bull’s-eye in Lyme Disease diagnosis.
  • Other ideas?

My goal is that my project will appear to be incredibly interesting yet nonthreatening.  So interesting and nonthreatening that these researchers, advocates, nonprofit managers, etc. want to invite me in for brief in-person meetings! But I have to get in the door first. Do I even explain what rhetoric is or identify as an English PhD student? (Would “humanities” suffice?) Do I bring up the visual ethnography stuff? (I think that some people outside of the social sciences know what ethnography is, but will the “visual” piece make it more confusing? I can’t just say that I’m trying to do an ethnography, though, because I’m not trying to do a clinical ethnography, which is what that implies).

One way to vet this might be to send it to some scientist/doctors who I already know and to see what they think. Maybe I’ll even ask my parents for their opinions (since they’re trained as an entomologist/pharmacist and an electrical engineer). I also need to think about what I want from these people. I’d like to consult with them about my research, but I probably need to give them something in return. (Besides running a groundbreaking study that changes the way that clinicians and health seekers diagnose and treat Lyme Disease, of course. HAHA IN MY GRAD STUDENT DREAMS).

Right now, I guess I really need to pick 2-3 descriptions: one for Lyme Disease foundation/nonprofit people (more Lyme-technical but less academic jargon); scientists/clinicians (methods-focused, not as Lyme Disease technical because I am not a scientist/doctor?); and maybe begin to think about how I would explain it to potential study participants?

At the moment, I sense that the term/concept of “arts-based research methods” might resonate with study participants because it doesn’t sound biomedical (and thus will hopefully have fewer side effects and not be as big of a risk?) Visual ethnography is a research method, of course, but I’m not an ethnographer by training and I’m not sure that that term will resonate with non-academic people. (My parents think the whole idea is insane, so that suggests that maybe other people like them will also think it sounds insane…whereas arts-based research method/approach sounds so…clean? Safe? Reasonable? Art therapy-ish?) I think this is also an indication that I really need to nail down my central questions (or at least the first clean-ish version of them) before trying to pull other people into my project. I know that these questions will change along the way, but I don’t think it will be productive to blurt out, “Come participate in my ambiguous research project where we’re going to take pictures of staircases and beds and who knows what else that can’t be measured or accounted for like the “non-subjective” bull’s-eye!” In any case, I think I need to actually read some of the arts-based research materials that I’ve culled thus far if that’s the primary conversation that I want to join. But I don’t yet know the politics of the field. Is visual ethnography taken less seriously than visual art therapy or narrative writing workshops, for instance? I guess I’ll have to try this out on a few people and find out…

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My Reserach and the Health Humanities

I took a somewhat experimental health humanities (HH) research course this semester, and before my brain goes to mush from studying for my comprehensive exams, I want to reflect on my developing sense of what the health humanities is and how it might contribute to my current and future projects. I found the scholarship in HH to be limited by its somewhat paradoxical claims vs. published realities, so I am thinking through my ideas based on some of these contradictions. Of course, I understand that HH is a rapidly expanding field, so perhaps it is unfair to be so critical of some of the research topics frequently studied, goals for research, etc. And yet some of it made me cranky, so it’s hard to resist…

I am also trying to hold myself accountable for my writing process. As the pressure to produce smart, cohesive, somewhat stylish writing mounts, the less I’m able to focus. I’ve recently started reading about the process of dissertation writing, and it sounds like the thing that people have the most trouble with is sitting down and DOING some writing. In general, I tend to be pretty good at the sitting down part when I’m feeling well. I often find myself frustrated on days when I seem to be unusually distracted (i.e. in low to medium level whole body pain). My skin feels sharp and staticky, my bones ache, my scalp is tender from having my hair in a ponytail for too long. I eat snacks, look out the window, wish I was doing something else. If I’m dressed like a human (which is usually not the case), I might leave my house for a while and browse sale items at Steinmart or buy four items at Whole Foods. But I’m usually sitting in my bathrobe at my kitchen table, one knee up against the table, head throbbing from squeezing and overextending my jaw, attempting to sip tea that has long turned cold and over-brewed. Also, I typically only allow myself to leave my house (or shower…working on that) if I’ve met my somewhat arbitrary daily writing goals. (That is, when I’m spending an entire day working from home). It’s funny to think that I used to write for pleasure. Now, it’s part of my job, and if I can’t do it–for whatever reason(s)–I can’t really join this profession. So I’m at a critical juncture in which I need to figure this out. I have been writing while feeling terrible for years now, so it’s annoying that I haven’t gotten used to it, found better techniques for producing better work, etc. Like everyone else, I probably have unrealistic expectations for myself about how much I should be writing and how “good” the writing should be. Ugh. In any case, I’ve been able to produce a lot of words and work out some ideas by writing these blog entries, so I’m going to consider it part of my writing process and move forward, hopefully moving past the obstacles I’m allowing to get in my way.

For me, a “good” research and writing day means that I produce writing that actually moves my ideas/arguments/frameworks/theories forward. This usually means that I produce a lot of writing (often on this blog) that is relatively informal but very clear…or as clear as I can make it. As critical as I am of people who believe that their interdisciplinary work will immediately impact the scholarship of multiple fields, it is helpful for me to do writing in a space where there is a theoretical, thoughtful, and somewhat broad audience. I try to write in ways that non-academic people like my parents can understand. I usually don’t achieve this goal, but my attempt to think and speak simply helps me figure out my key questions: What am I really trying to say? Why is it important? As I reread this section, I’m chuckling at the word “important.” In the scheme of things, my reflection on my course in HH is not “important” for most people. It probably never will be. I guess I’m always hoping that, in some small way, I can contribute to solving some greater social problem or helping meet a need of living, breathing people. Many scholars talk about fulfilling this kind of civic duty via their teaching, but I’d also like to do it through my research. Anyway, I’m going to stop this philosophical meandering and get to the health humanities stuff. After all, I have a short critical reflection to write for the class, and I stared at a blank word document for an hour this morning without any “luck,” so it’s time to get started.

[Nail cutting and filing break. Why do I feel a desperate need to groom myself whenever I start writing something?! Sometimes I also get an urge to clean. I was reading about a study that reported that obsessive grooming behaviors, like skin picking and nail biting, can be related to perfectionist tendencies. I haven’t bitten my nails for more than three months (!!) so can’t I chalk this up to not wanting to start to bite them as I’m thinking/writing? #phdproblems].

What HH claims it does vs. what it actually does (based on what I learned and observed during the course):

#1. Bridging the clinical medicine/humanities divide to better educate healthcare providers and solve large-scale health problems. (Is clinical medicine a real thing, or did I just make it up?) It seems like the medical  humanities (yes, a slightly different field) might have made some progress with bridging the medical/humanistic gap, but in my opinion, this has been most effective when clinicians bridge this gap and then teach other clinicians about it. For instance, Rita Charon’s work on narrative medicine is well respected in many fields, and one reason for this is because, as a medical doctor, she has a trustworthy ethos. Charon is able to rely on her experiences in clinical settings, working with diverse patients, etc. to advocate for the worthiness of humanistic ways of thinking in health and medicine.

Unfortunately, I find it less compelling (and, frankly, kind of annoying) when humanists try to do the same thing. I am not convinced that teaching and discussing Frankenstein or any other specific texts with medical students will or should impart wisdom about empathy, power relations in medical spaces, the value of human life, etc. I do think that these texts include interesting commentaries about health and medicine, but in my sort-of educated opinion, there is not enough statistical evidence to support this kind of HH education for medical students. In our HH class, we read many different literary analyses of fiction, poetry, etc. by canonical authors and explanations about how these texts can help doctors do their jobs better by teaching them empathy, compassion, and more. Sometimes, the close readings were strong and theoretically demonstrative of what doctors and other healthcare providers (a key feature of the HH) could learn from reading the texts. And yet I remain deeply skeptical of both demanding this kind of education/change and the idea that literature can make this change. Perhaps I am just a pessimist. It’s not that I don’t think that some healthcare providers need additional training about these things, and it’s not that I don’t think that medical school is structured in a militaristic way that breaks down people and rewards them for quick (albeit sometimes inaccurate) diagnoses, memorization of body parts instead of holistic analyses of individual people’s bodies, etc. I do. But I’m still looking for some social science-based and/or other scientifically-based research that supports this. I don’t believe that science is objective or always true or anything like that, but I think there is something to be said to testing out different research methods for answering a research question. If nothing else, maintaining a critical perspective when discussing this issue will help us more effectively evaluate all future research about it from both scientific and humanistic perspectives.

[Time to search the kitchen for snacks even though I’m not hungry. I guess I’ll chew another piece of gum and try not to distract myself by looking out the window at my neighbor’s adorably lazy cat].

#2. Reach a broad interdisciplinary audience ranging from clinicians to English professors. It is hard to imagine medical students and practicing clinicians reading our HH anthologies or some of the humanities-interdisciplinary HH articles that we discussed in class. I sense that these professionals don’t care about nor do they have time to read humanities journals, materials, or perspectives. Of course, there is the occasional converted doctor (so to speak) who publishes in both medical and humanities journals, but I can confidently say that it is unclear and/or unlikely that their medical colleagues read their humanities publications. Humanities and some social science scholars actually seem to be the people reading HH scholarship–though many of these scholars do not identify themselves as HH scholars even if their work could be classified at HH scholarship. It’s not that this is a bad thing. It seems like HH has exposed humanities scholars to different research topics, questions, and methods that can expand the range of humanistic work. However, based on our reading this semester, it does not seem to have such a broad reach.

#3. The area of “health humanities” is recognizable to many audiences across disciplines and is significantly different from “medical humanities.” Like any other emerging field, HH is struggling to literally create a name for themselves. According to our two main course texts (HH anthologies/readers), HH is different from medical humanities because it makes more of an effort to study and consider the perspectives of non-physicians and extend beyond medicine as the main issue in question. However, based on all of the readings included in these texts, this is not necessarily the HH reality. Most of the texts still prioritized the doctor-patient relationship and, though some mentioned other health professionals, these individuals were not the main focus. In general, ill people themselves were also not the main focus. The most emphasis was placed on medical education/training and re-training/educating current medical providers. This, I suppose, is one kind of “talking back” to the greater spheres of biomedicine, healthcare broadly defined, western values and perceptions, etc., but I found the lack of focus (and writing) by ill people about illness, by other healthcare providers about other kinds of health and wellness, etc. disconcerting and disappointing.

In any case, I worry about identifying  myself as a HH scholar for all of the reasons listed above. Who will take my work seriously if I am not fully committing myself to more than one well-respected research methodology at a time? (My sense is that the recently published HH scholarship highlights interdisciplinary but still adheres to a single-discipline research method. Rhetorical analysis might be the exception, though they don’t usually call it that in the sciences). I am still much more comfortable trying to join more deeply established intellectual conversations in the rhetoric of health and medicine, disability studies, feminist rhetorical theory and practice, visual studies, ethnography, and more. Despite all of this, I DO think that the HH has great potential. (Though I’m going to hedge and say that I believe this potential is based on the determination of a more focused audience, establishment of more widely respected publications, and new key texts). Here are a few examples:

  • Ill individuals and health seekers gather together to record, revise, and distribute their stories collectively (versus in individual self-help-like manuals or illness narratives). One recent example is Allie Cashel’s Suffering the Silence: Chronic Lyme Disease in an Age of Denial. As part of a senior thesis project at Bard College, Cashel interviewed a bunch of individuals living with chronic Lyme Disease and wove together her experiences, their experiences, and a cultural analysis about the diagnosis and treatment of Lyme Disease.
  • “Cultural competence” training for clinicians becomes more sophisticated by blending in some health humanities perspectives, leading medical students to take a more intersectional approach to identifying and treating health seekers. I probably don’t know enough about this to make this claim, but it seems like a nice fantasy.
  • Insurance companies, the U.S. government (including NIH and the like), and/or other people with a lot of money and power find the HH to have a strong value-added benefit and incorporate it into their plans, policies, and funded research projects.

In all, I think it was very useful to take a HH course and to explore HH perspectives and how they might relate to my projects. In terms of my dissertation project, I will probably not situate myself as a HH scholar and instead focus my attention on audiences in rhetoric: rhetoric of health and medicine, visual rhetoric, and feminist rhetoric in particular. I hope that my writing and research will be meaningful and easily translatable to other audiences, such as disability studies, ethnography (maybe), medical and linguistic anthropology (maybe), etc. In general, though, I think that I should try to make my writing more palatable for everyone who might read it, so perhaps I will be able to invite in a large audience if I can make this shift. But for now…it’s time to ramp up my exam studying and add to my understanding of HH, since it is my “minor”!

 

 

 

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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:

Rhetoric

**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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Researching Visual Ethnography

Added to the direct pressures of benefits reform, I felt a weight of expectation and judgement from the images. Neither set of images said much about me, yet they became deeply personal. Since there was no way to escape the heat of the images, I decided to try and make sense of their power. Collating the images, I analyse them here against a backdrop of visual inquiry theory. I consider the process through which their meanings are made, how they shape and reinforce a collective ‘picture in the mind’ of what it is to be a disabled person. I look beneath the surface to examine their real-world impact. Finally, I explore possibilities for contesting these images and for disabled people’s creation of counter images, in order to tell a different kind of story of what it is to be us.

–Liz Crow, “Scroungers and Superhumans: Images of Disability from the Summer of 2012: A Visual Inquiry” in Journal of Visual Culture (2012).

Note: She does not include images in the article because she believes that the images are already culturally embedded.

I think that I need to really get a sense of what visual ethnography is, who does it, how it is done, and why it is done before I move forward. In turn, this morning I did a journal search for visual journals to see who is publishing about it. Without much thought, I typed in “visual” to the library e-journal search page at UNC, and I found a bunch of potentially relevant journals! I’ve listed them here along with some notes about what I’ve discovered thus far. When I landed on the journal’s home page, I first searched for the term “ethnography.” If it did not generate any results, I then looked at 2-10 of the most recent issues of the journal. Sometimes, I also searched terms like “health” and “disability.”

  • Journal of Visual Communication and Image Representation = very technical, didn’t offer anything for my project.
  • Journal of Visual Communication in Medicine = focused on medical illustration and clinical medical photography, both past and present; publishes notes from the Health and Scientific Communication Organization; Wellcome Trust Library holdings; particularly attentive to issues of technology, such as if clinicians should take medical images on their cell phones
  • Journal of Visual Culture = humanities and social-sciences oriented–definitely useful for my purposes; queries into ethnography, health, and disability were fruitful; however, most articles about visual representations of health and disability did not discuss ethnography; “Disability-Visuality” special issue in 2006
  • Journal of Visual Literacy = design theories?
  • Visual Anthropology = useful!
  • Visual Anthropology Review = useful!
  • Visual Communication Quarterly = useful! (some articles about photojournalism)
  • Visual Culture and Gender = useful! published annually
  • Visual Studies = searches for “health,” “disability,” and “visual ethnography” failed–might have to return at a later time

Helpful Articles:

  1. Aguayo, Angela, and Stacy Jill Calvert. “Theatrical Bodies: Acting Out Comedy and Tragedy in Two Anatomical Displays” (Visual Communication Quarterly 2013).
  2. Benin, David, and Lisa Cartwright. “Shame, Empathy and Looking Practices: Lessons from a Disability Studies Classroom” (Journal of Visual Culture 2006).
  3. Bossen, Howard, et al. “Hot Metal, Cold Reality: Photographers’ Access to
    Steel Mills” (Visual Communication Quarterly 2013).
  4. Cant, Alanna. “One Image, Two Stories: Ethnographic and Touristic Photography and the Practice of Craft in Mexico” (Visual Anthropology 2015).
  5. Crow, Liz. “Scroungers and Superhumans: Images of Disability from the Summer of 2012: A Visual Inquiry” (Journal of Visual Culture 2014) –> “And we need to create images that confront in more direct and provocative ways. We need images that use the process of meaning-making for effect, working with and subverting the existing binaries in order to create images that confront and disturb the viewer’s familiar readings” (177).
  6. Nead, Lynda. “Stilling the Punch: Boxing, Violence and the Photographic Image” (Journal of Visual Culture 2011). –> discusses photographing the body in pain
  7. Fewkes, Jacqueline H. “The Seductive Gaze Through the Gold Filter: 
    Representation, Color Manipulation, and Technology Choices
    in Visual Ethnography” (Visual Anthropology Review 2008). 
  8. Garland-Thomson, Rosemarie. “Ways of Staring” (Journal of Visual Culture 2006).
  9. Gonzalez, Jennifer A. “Rhetoric of the Object: Material Memory and the Artwork of Amalia Mesa-Bains” (Visual Anthropology Review 1993).
  10. Gruber, David. “Theatrical Bodies: Acting Out Comedy and Tragedy in Two Anatomical Displays” (Visual Communication Quarterly 2011).
  11. Johnson, Ginger J. et al. “Drawings, Photos, and Performances: Using Visual Methods with Children” (Visual Anthropology Review 2012). 
  12. Lenette, Caroline. “Visual ethnography and refugee women: Nuanced understandings of lived experiences” (Qualitative Research Journal 2013).
  13. Nelson, Erica, and David Howitt. “When target groups talk back: at the intersection of visual ethnography and adolescent sexual health” (Reproductive Health Matters 2013).
  14. Olszanowski, Magdalena. “Feminist Self-Imaging and Instagram: Tactics of Circumventing Sensorship” (Visual Communication Quarterly 2014).
  15. Pink, Sarah. “Digital–visual–sensory-design anthropology: Ethnography, imagination and intervention” (Arts and Humanities in Higher Education 2014).
  16. Stadhams, Dianna. “Look to Learn: A Role for Visual Ethnography in the Elimination of Poverty” (Visual Anthropology Review 2004).
  17. Thorson, Bruce. “A Visual Voice Seldom Heard, Seldom Noted” (Visual Communication Quarterly 2013).
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Research Challenge #1: Summarizing My Project

I’m applying for the SSRC Dissertation Proposal Development Fellowship, which requires that I answer a number of questions about my research. (YIKES). I’m going to try begin brainstorming responses to the first three questions on this blog…

Summarize the current topic, central problem or question, relation to relevant research literatures, methods or approaches, and broader theoretical contributions of your dissertation research project. (Please keep in mind that, if you are selected as a DPDF fellow, your abstract will be placed on the SSRC’s DPDF Program website. Use language appropriate for an interdisciplinary audience and avoid or explain disciplinary-specific concepts or jargon.) * –> (up to 150 words)

My topic is the rhetoric of Lyme Disease. I want to study what kinds of arguments are being made and by whom regarding Lyme Disease diagnosis, treatment, and recovery. In general, Lyme Disease is approached biologically–as an infectious disease–and current studies are being conducted by scientists to learn more about how/when the infection is active, how people respond to different treatments, what treatments might be most effective, how to diagnose it, etc. However, Lyme Disease can (and should!) also be approach rhetorically; that is, attending to the socio-cultural factors that have influenced the ways in which it is discussed in nonspecialist/popular and scientific communities. Science journalists in the New York Times, Washington Post, and other popular sources have begun to investigate the Lyme controversy rhetorically, and I want to follow up on these analyses by studying Lyme discourse in scientific and medical peer-reviewed journals, Lyme and infectious disease research centers, nonprofit organizations that support people with Lyme, online communities where people talk and share resources for dealing with Lyme, and more. Lisa Keranen, Judy Segal, and others are much better at explaining why a rhetorical framework is helpful for studying health, science, and medicine, so I’ll have to rely on them for some support. More broadly, I think that my project is valuable because it will a) verify that much of what we know about Lyme is completely constructed and  does not rely on the results of scientific practice, and b) how ill people can use rhetorical techniques to leverage their Lyme Diagnosis as a means of acquiring better health care.

Introduce your dissertation project for an academic reader who is unfamiliar with your particular topic, region of study, and disciplinary approach. What is the central research question, problem, or puzzle that you want to investigate? Why is your project important and timely? * –> (up to 400 words)

Lyme Disease poses a plethora of rhetorical problems for medical practitioners, insurance companies, policy makers, and most notably, for patients. Lyme Disease is caused by the Borrelia burgdorferi bacterium and transmitted through infected ticks; approximately 300,000 probable cases are reported to the Center for Disease Control and Prevention (CDC) each year, most commonly in boys ages 5-9. Theoretically, Lyme Disease is simple to diagnose and treat, and recovery should begin as soon as it is treated. A diagnosis is made when a medical provider identifies an erythema migrans (EM) (also known as a bulls eye) rash on a patient’s body and/or when laboratory blood tests indicate a positive Lyme Disease result. Infected individuals who are treated with doxycycline or amoxicillin for 14-21 days should recover completely, according to the 2006 guidelines adopted by the Infectious Diseases Society of America.

Yet the diagnosis, treatment, recovery, and even the names of conditions associated with Lyme Disease are sources of fierce contention in U.S. patient and medical communities. Since the EM rash is not always present, many patients receive multiple inaccurate diagnoses based on Lyme’s ambiguous symptoms–extreme fatigue, joint pain, stiff neck, swollen lymph nodes, headaches, and more–and thus do not respond to traditional treatments. Importantly, 10-20% of Lyme patients continue to suffer from these symptoms after their initial infections are treated. This phenomena called “Post-Treatment Lyme Disease Syndrome,” or in some circles, “Chronic Lyme,” has shifted in recent years from a concept circulated in alternative online patient communities to an accepted concern for mainstream patients, media sources, and researchers alike. Some doctors are even calling themselves “Lyme Literate Medical Doctors” (LLMDs) as a way to indicate their expertise with experimental Lyme Disease diagnostic techniques and treatments.

My dissertation takes up Lyme Disease as a case study to reveal the rhetorical complexities inherent in diagnosis, treatment, and recovery from illness. I aim to examine the rhetoricity of Lyme Disease and investigate how people in various Lyme Disease communities leverage aspects of the condition to achieve particular goals. Lyme Disease is one of many conditions that prompt us to consider how diagnosis, treatment, and recovery are constructed rhetorically and for different means. However, the paradoxes inherent in Lyme’s disease lifecycle uniquely illuminate the complex points of encounter between medical practitioners and patients as they–together and separately–confront illness.

My project is important and timely because there is a  steadily increasing number of ill people in need of care and treatment.

  • Public discourse about Lyme is quickly evolving–the transition from Chronic Lyme to Post-Treatment Lyme Disease Syndrome is just one example–and researchers, medical providers, patients, and advocates need to figure out how to respond to the increasingly controversial arguments about diagnosis, treatment, and recovery.
  • A new research center at Johns Hopkins University opened in April 2015 to specifically answer questions and solve problems related to Lyme Disease.
  • Hmmm…

How do you expect your dissertation project can draw from and contribute to existing literature about the topic in a novel or interesting way? * –> (up to 400 words)

My dissertation project is innovative because it will draw from existing peer-reviewed science and medical journals, as well as existing narratives from patients with Lyme Disease, and put them in conversation. Research in the medical and health humanities suggests that medical providers do not read (and thus do not respond to) publications in humanities journals about medicine. (I need to do some research about if and how providers read and respond to patients’ illness narratives?).

  • We can get to the root, so to speak, of some of the rhetorical problems with Lyme by historicizing it. I aim to conduct a rhetorical archeology of Lyme to identify the shifts in its naming and diagnosis.
  • I hope to get at rhetorical analysis via a number of vehicles beyond traditional textual analysis. Like T. Kenny Fountain, I might take an ethnographic approach to some of this work. Hmmmm…
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