Tag Archives: ethnography

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!

 

Advertisements
Tagged , , , , , , , , , , , , ,

Revising Lyme Research Questions

One of my wise advisers from my days as an undergraduate at University of Maryland recently gave me some important advice. As usual, I was complaining about my various projects, particularly about my inability to select useful and appropriate research methods. My adviser said something to this effect: “Why don’t you figure out your research questions before you select your research methods? You can’t figure out how to answer the questions until you’ve chosen them.” SO SIMPLE, YET SO BRILLIANT. (I guess this is why we have advisers). In turn: I’m writing this post because the time has come for me to really nail down my research questions (at least for my dissertation proposal. I know that they will change along the way, but I can’t get the proposal approved without a version of these questions, so here goes…).

I have been working on these questions for some time. Almost a year, in fact. When I teach my students about the research process, they are always frustrated by my assertion that research IS a process–one that is recursive, reflexive, and constantly evolving. (I mean, it’s called “re-search” for a reason!) However, none of that means that the research process isn’t frustrating. It’s hard to keep coming up with versions of the same questions (and some new ones), but hopefully my questions get better and better as I continue to revise them. Here are a few versions:

April 2015:

  • What does it mean to receive a Lyme disease diagnosis?
  • What does that diagnosis allow/not allow? Legitimize/not legitimize?
  • Who is able to receive a diagnosis, and who is not?
  • What do you have to know about lyme in order to self-advocate or receive appropriate treatments?
    • If diagnosis matters so much, what are we to do if we feel that our healthcare providers have misdiagnosed us?
  • In general, what does it mean to have a chronic condition or to live as a chronically ill person? What kinds of evidence are required for women’s chronic illness symptoms to be believed or taken seriously?
  • How do women’s stories complicate our understanding of how they navigate the world while living with disease?
  • When disease names and language change, what happens?
  • How is illness language being turned and nuanced?
  • When ill women are given access to communicate (i.e. online?), what happens?
  • What kinds of rhetorical strategies do chronically ill women adopt to navigate their illness experiences? What kinds of illness language do ill people, scientific, and public communities create, and how does it influence the ways patients are cared for and treated?

July 2015:

  • KEY QUESTION: What is the (if any?) rhetoricity of being “chronic,” and how can chronically ill people (specifically women) leverage their diagnoses, treatments, and long-term care to their advantage (i.e. to get the least harmful, most effective treatments and experiences)?
  • How does a diagnosis change the ways in which an ill person lives, perceives, acts out, and discusses publicly their symptoms/condition?
  • For whom is a diagnosis important, and what does it do? (Patients vs. doctors vs. insurance companies vs. big pharma, etc.).
  • How do patients weigh the risks of particular treatments? (Meaning, when the list of side effects is longer than the list of benefits on FDA-approved medication, why might patients choose to take/not take them?)
  • How are treatments framed differently for individuals with chronic conditions? What does it mean for patients to be treated for psychiatric conditions that occur as a result of chronic illness (forever marking them as individuals with mental disorders)?
  • How do chronically ill people sustain themselves even when there is no hope for recovery? How are traditional conceptions of “cure” and “recovery” reframed for the chronic patient?

October 2015:

  • What does Lyme Disease look like? (And how does this affect who is diagnosed with it–and appropriately treated–and when?)
  • Who circulates images of Lyme Disease? What does the circulation network look like?
  • How do Lyme Disease diagnosis health-seekers/patients envision their connection to Lyme? How do they document their experiences of Lyme, if at all? (Or other ambiguous chronic illness/condition).
  • How do clinicians who diagnose Lyme Disease and researchers who do experiments to learn more about Lyme Disease *see* it–in the lab, in the treatment center, in the exam room? How do these images circulate?
  • What is the history of images of Lyme Disease and their connection to diagnosis?
  • And of course…How do Lyme Disease visuals function rhetorically, particularly in diagnosis situations? How might images/visuals be effective argumentative tools for presenting new ideas/shifting the focusing/reevaluating the stakes of Lyme Disease diagnosis?

November 2015:

  • What is the origin of the standard Lyme Disease images, and how have they molded and circulated between professional and patient communities?
  • In the midst of complex arguments about how long the Lyme infection remains active and if intravenous antibiotics cause more side-effects than healing, four standard images accompany discussions from all ideological perspectives: one or more ticks, EM rashes, Lyme spirochetes, and maps that chart Lyme diagnoses across the United States. Why d0 these images continue to be taken up and recirculated?  How have they have played a covert but significant role in making paradoxical claims about Lyme persuasive?
  • How might visual ethnography reveal new complexities in the diagnosis, treatment, and recovery from Lyme Disease? What happens when we ask integral but invisible stakeholders (i.e. Lyme patients) to become producers of visual discourse about Lyme?
  • How might visual ethnography create new images that provide an alternative, patient-centered perspective on the condition?
  • How might  language, objects, and social actions (including scientific “facts”) function as persuasive tools (which are inherently impartial)?
  • How might a rhetorical analysis of the visual rhetoric of Lyme Disease offer new ways to understand a condition that science of medicine have not yet figured out?
  • How have (and how do) images of Lyme Disease shape(d) popular, medical, and scientific discourses and the practices of Lyme diagnosis, treatment, and recovery?

As you can see, this project has already gone through many shifts…and I haven’t officially started it yet. I guess I should also think about my intended interventions:

  1. Lyme Disease–like many other (particularly controversial conditions and diseases)–is rhetorically constructed. This impacts health seekers’ diagnosis, treatment, and recovery, as well as the ways that knowledge about the disease is constructed, circulated, and contested.
  2. Analyzing visuals (i.e. through visual rhetorical analysis) can help us understand Lyme (and other conditions and diseases) as rhetorical phenomenons. As Jeanne Fahnestock argued in her groundbreaking book, Rhetorical Figures in Science, linguistic figures of speech translate to visual figures in scientific writing.
  3. Guiding Lyme health seekers through the creation of their own images through participant-solicited visual ethnography and digital storytelling (?????) allows them to intervene and perhaps make a difference in Lyme Disease knowledge production. (TBD if I do some kind of study. We shall see?)

I guess I need to go back through and narrow down/select which questions will work for me…but since it’s almost 4:00pm, I guess I should shower or exercise… To be continued!

 

 

 

Tagged , , , , , , , , , , , , , ,

The Winning Email

The other day,  I finally got up the nerve to email the first (and most important) scientist on my list about my project. I combed through the email for what felt like hours (it was probably only 2.5 total–including my drafting from the other day), and I anxiously bounced around my living room awaiting a reply. (To be honest, I figured that no one would reply to my email. After all, most traditional scientists aren’t interested in humanistic research methods or ways of knowing and thinking–at least from what I know). HOWEVER, this scientist emailed me back within four minutes (!!!!), and within an hour, we scheduled a meeting for when I am in Baltimore next week. WHAT?! I mean, I do consider myself to be a professional writer (and a skilled scientific writer and reader at that), but it was still scary to try to articulate my dissertation project ideas in such a scientific way. Here is a copy of the winning email:

 ——

Dear _____,

My name is Sarah Singer, and I am a PhD student at The University of North Carolina at Chapel Hill. I am beginning a dissertation project in which I plan to conduct a case study about the experience of living with Post-Treatment Lyme Disease Syndrome (PTLDS) using visual ethnography. Since there is not yet an FDA-approved clinical treatment for PTLDS, I aim to investigate if a mixed methods, arts-based intervention will improve the quality of life in patients with persistent Lyme symptoms.

I am writing to ask if you would be willing to briefly consult with me about this project. I am especially eager to get your advice about conducting research with the PTLDS patient population as well as how I might frame this project to better support the goals of the broader Lyme Disease research community. I anticipate that my results will contribute to the JHU Lyme Disease Clinical Research Center’s long-term effort to develop interdisciplinary models for understanding all aspects of Lyme Disease.

I will be in the Baltimore area from December 15th-22nd, and if you are available, I would be happy to meet with you at Greenspring Station, the Bayview Campus, or another location. Alternatively, if it would be easier, we could connect over the phone or Skype at your convenience.

Thank you for your consideration. 

Respectfully,

Sarah Singer

——

At this moment, you are probably thinking, “Wow, Sarah–your project seems so ‘together’!” HAHAHA. No. Definitely not. This is probably one of the clearest iterations of the project thus far, but it could be interpreted in so many ways. (I tried to leave things as vague as possible so that…well, frankly, because I’m not really sure what’s going to happen. Which is why I want to consult with some other Lyme experts to see what they think).

In any case, this is a key moment for me: I talked about my project in a way that made someone else want to hear more about it! What’s hard, though, is that this is one of many ways I could talk about my project, I and I will need to get good at talking about it for different audiences. For example, I recently applied to the Rhetoric Society of America Works-in-Progress event, which matches young and up-and-coming scholars with senior scholars in their field to discuss an article, book chapter, etc. that they are writing. This was a useful activity for me because I had to provide a 200 word summary…of a dissertation chapter that I have not yet written. Yesterday afternoon, I got an email saying that I was accepted! YAY! But now I need to get started on my chapter AND figure out how I am going to prioritize the disability studies perspective, which is the focus of this Works-in-Progress group. Now, it’s not that my project doesn’t and shouldn’t have a disability studies perspective–this is very important to me. However, I will need to shift from thinking about my project as a “case study” about Lyme Disease and visual ethnography to thinking about my project as a direct link to the current conversations in disability studies.

 Time to get crackin’! (And prep for this meeting next week. And read for my exams in February. AHHHHHH!)

Tagged , , , , , , ,

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…

Tagged , , , , , , , , , , , ,

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.

 

 

Tagged , , , , , , , , , , , , , , , ,

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).
Tagged , , , , , , , , ,

Rhetoric and Visual Ethnography: Envisioning the Future of Health, Medicine, and Bodies in Practice

Rhetoric and Visual Ethnography: Envisioning the Future of Health, Medicine, and Bodies in Practice

(Note: Trying out a title for…who knows what? I’m not even sure what “bodies in practice means.” I was thinking about doctors practicing medicine and people practicing their illness chronologies before they go to the doctor…but maybe that’s just something I do).

I’ve thought more about it, and I’m concerned that my investigation into Lyme Disease images is going nowhere. Yes, it’s weird/interesting that there are four main images in circulation (the deer tick, the bull’s-eye, the Lyme spirochete, and Lyme-endemic area maps), but…can I write a whole dissertation on it? Since I’ve never written a dissertation/book before, I clearly don’t really know the answer. It’s worrying me.

I’ve been tossing around Jason’s idea from the #TeamRhetoric writing group meeting a few weeks ago: that I write my entire dissertation on visual ethnography as a rhetorical research method. Here’s what I think this might be good for:

A) Demonstrating that LOOKING at health and medicine texts/images (broadly defined) might reveal something new/different/important about them. My exploratory research led me to sociology of medicine and medical anthropology journals that highlighted how visual research methods often (more effectively) illuminate the lives and experiences of underrepresented and systemically disadvantaged people. I know that there are a lot of these individuals who are sick and who are lost in the system—forgotten by doctors and the public at large. Perhaps a project that uses visual ethnography could shed light on some of those experiences that might not otherwise be put at the forefront.

B) Putting people and their bodies into practice. (Note: this sounds like a good idea but I’m not quite sure what I mean by it). I think what I mean to say is that it involves both the “participants” and the “researchers” in the making of the thing—which is TBD, of course.

C) A fantastic article about research methods (if nothing else)!

Here’s what worries me:

A) That visual ethnography isn’t rhetorical (enough). Jason is sure that it is, but I think I’m still lukewarm on the subject. The McNely et al. team is also sure that it’s rhetorical, and I can see how it would work for documenting/doing the writing process. And yet…I’m not sure about it.

B) I have no idea what I am doing or will be doing. Visual ethnography isn’t my field. In fact, I have very little training that supports this line of inquiry! I can take confidence in knowing that I know about rhetoric and power and practice and that that will take me where I want/need to go. But I don’t even know how to operate most cameras and I take terrible selfies, so I’m not sure if the images would even come out “right.”

C) Coordinating with the appropriate partners and experts. If I get the DPDF, I will have a (funded!) opportunity to do this and to consult with experts from the social sciences. However, without this boost, I will have to do this work completely on my own. I have some connections through the HHIVE and other friendly people I’ve encountered at UNC and UMD, but I don’t (personally) know any anthropologists or scholars who do digital work. (Well, Dan and Todd do, I suppose, but they don’t do visual ethnography…).

D) THAT THIS PROJECT MIGHT FAIL COMPLETELY BECAUSE I HAVE NO IDEA WHAT WILL HAPPEN! Theoretically, there is a chance for this to happen in any project. But for the first time, I am honestly not sure about what will come out of this project. In general, when I’ve done text-based research, I always know that there’s something to find that I can use for something, even if it’s not what I originally intended. I mean, there was that one time when I was trying to learn about sex education courses at UMD since it opened in 1856 and the sad archivist had to tell me that no records exist because UMD burned down completely in the early 1900s. At the time, I felt a bit disoriented (and definitely derailed), but the absence of ephemera led me to study something related: home economics. In fact, I probably didn’t have the necessary vocabulary—the search terms and historical language—that would have generated helpful results for my sex education study. (Since they very likely did not call it “sex education.” HA! Actually, I know that it was often called “social hygiene” and went by a few other related names). I am in a similar stage with this project: I don’t yet have the vocabulary to locate the information that I’m looking for…and perhaps it doesn’t even exist.

I guess I’ll find out?

Tagged , , , , , ,

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…
Tagged , , , , , , , ,
%d bloggers like this: