Tag Archives: networks

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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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!

 

 

 

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To do a study or not to do a study?

I had a very productive meeting with some Lyme Disease researchers during winter “break.”Although I found the travel and rushing around to be exhausting, I was thrilled to learn a few game-changing things:

  1. No one has published a peer-reviewed journal article about the rhetoric of Lyme Disease, probably because it is too political.
  2. Very little is known* about Lyme Disease in communities that are impoverished, rural, and/or predominantly made up of people of color. Umm…WHAT?! I guess this shouldn’t surprise me, since the clinics that specifically treat Lyme tend to be located in wealthy, white-majority (sub)urban areas that are not easily accessible by public transportation. (Or at least they are based on my initial observations). Moreover, according to these researchers, Lyme study participants are often recruited from these same communities and thus tend to be white, upper-middle class or wealthy, possibly Jewish, and well connected. (Or at least that’s how I interpreted it. They are people with many social and economic privileges. Much like me).
  3. At this point, there is very little qualitative research about Lyme Disease and/or the human experience of being diagnosed with, treated for, and/or suffering from Lyme Disease.
  4. Visual ethnography workshops could be a promising intervention to improve the quality of life of Post-Treatment Lyme Disease Syndrome (PTLDS) patients, particularly if they are inexpensive and could be facilitated digitally.

Based on this meeting, the most important intervention I could make is writing a clear, well-researched, judiciously worded article about the rhetoric of Lyme Disease and publishing it in Health Affairs or anther similar journal. The visual ethnography thing is an interesting possibility, but it is not as interesting nor as urgent as writing about the rhetoric of Lyme Disease.

This puts me in a challenging position. Where should I begin? How should I spend my time? What is most important and for whom? 

Originally, I imagined that I would run a pilot study to test my (still developing) hypothesis: Participating in a participant-solicited photography/digital storytelling workshop will improve the quality of life of PTLDS participants–at least according to some clinical self-assessments. (I need to work on my phrasing. Yikes). However, this might  be too ambitious for me to attempt at this moment in my career. Aside from studying for my exams and watching Netflix, I’ve been helping Jen get the HHIVE Lab Writing Diabetes Study running… There is so much to do. I have no idea how so many emails would get sent, binders would be ordered, posters would be proofread, IRB revisions would be completed, etc. without our fellow team members, each of whom brings ideas, talents, and key social connections to the project. We are being funded by a UNC FIRE Grant. If I attempt this visual ethnography project on my own–without human resources, without funding, without space, without an enormous amount of time–will I be able to get it off the ground? Just thinking about the little things, such as how will I acquire a phone number/line for recruiting patients (?) and where will I hold the consenting sessions (?), is overwhelming. A few short weeks ago, I was planning to leave campus for the fall semester (or something?) and conduct the workshops in Maryland, since Lyme is much more common there…and make it all happen. Magically. Now, I still believe that visual ethnography is a useful line of inquiry to pursue, but I need to rethink whether or  not I am going to hold an in-person workshop, how I am going to afford it, where I might hold it, etc.

SO MUCH TO CONSIDER. TWO MONTHS TO DECIDE. (Or at least make preliminary decisions so that I can pass my dissertation prospectus defense). To be continued…


*What I mean by this is that very little is known about Lyme Disease in these communities in the peer-reviewed research world. Knowledge about Lyme Disease–truths, stories, lived experiences, ideas, connections–circulates in internet forums, magazine and newspaper articles, youtube videos, art, and more. However, in the medical and scientific communities, the most important (and arguably trustworthy) knowledge comes out of clinical studies, the results of which are published in field-specific journals that are evaluated for accuracy by fellow medical and scientific professionals (i.e. they are “peer-reviewed”). In my opinion (as a budding researcher), the only way to combine these branches of knowledge is to study diverse sources of knowledge-making (such as blogs, Instagram posts, newspaper articles, interviews, etc.) in a scientific way and publish the results in medical and scientific journals. It would also help if all peer-reviewed journals were freely accessible and if the journal articles were written with less jargon so that non-specialists could both access and make sense of them.

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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!)

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Reaching Out

With Jen’s help, I picked a description to start out with for my email to clinicians/scientists: 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. However, this still needs significant revising…and I need to start drafting the email that I’ll send with it. I’m staring with the XYZ Research Center,* since I am most interested in speaking with the researchers there. Here goes!

———

DRAFT:

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 about Lyme Disease in which I plan to do conduct a case study [[Does one “conduct” a case study? Quick Google Scholar search: lyme disease case study…no dice]] with a group of individuals with Post-Treatment Lyme Disease Syndrome using visual ethnography. [[Are my research questions really about PTLDS people or Lyme Disease in general? Lyme diagnosis? Hmmm…]]. I am writing to ask if you would be willing to speak/consult with me for 20 minutes to/about…

–> seek guidance about my research questions (is this research relevant to the center?

–> ask about working with this particular patient population (special  needs or things to be aware of?) accessing the population? (maybe I could recruit from their database?)

–> ???????

Ultimately, the question I am hoping to answer/investigate/explore is…

I believe that this research complements/will support the center’s long-term effort to develop interdisciplinary models for understanding Lyme Disease.

Respectfully,

Sarah Singer

———

I guess this marks a time for confronting another significant problem with my project: I have not completely narrowed down my research questions. In the humanities, research questions evolve as we start doing the research. However, I’m not sure that it works this way in the sciences, and I don’t want anyone to not take me seriously because I seem to be wishy-washy.

Also: what do I want from these people? BM suggested that I have a gentle, open-ended ask, so maybe that’s why I’m so concerned about trying to make decisions about research questions and demands (so to speak).Hmmm….

*Note: At this point, I have chosen not to reveal which researchers I am reaching out to or consulting with. Although I believe that this kind of deliberate avoidance contributes to the contested nature of Lyme, maintaining anonymity seems to be important to clinicians and researchers who treat Lyme patients, and I do not want to compromise the work they are doing to help suffering health seekers.

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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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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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Reflections: Diving into the Wreck

I submitted my Dissertation Proposal Development Fellowship (!) mid-last week. I’m relieved to have turned it in, and I’m excited to move forward now that I’ve sorted out some ideas about my potential dissertation project. Here are some brief reflections:

1. Diving into the unknown is scary.

That’s the point of this particular fellowship, of course–to learn a new research method that might reveal compelling things about your existing topic. Yet planning how I might do so was MUCH harder than I anticipated. I transitioned from knowing exactly what I was doing–rhetorical analysis of health and medical texts (popular and scientific)–to speaking to discourse communities that are completely new to me: visual rhetoric, visual ethnography, social science methods, etc. I was constantly using Google Scholar to find the most heavily cited texts in these fields just to get a taste of what’s going on there. For so long, I’ve pretty much ignored visuals (particularly ones about/for Lyme Disease because they seemed so generic). As Adrienne Rich writes, “The words are purposes./The words are maps.” But now there are also physical maps to consider…and who knows what they mean or if they matter?

Regardless, I did come to an important conclusion: tracing the evolving discourses alone wasn’t doing it for me. At first, I worried that I was a having a millennial moment where I was temporarily bored or stumped by my research and thus needed to immediately jump to what appeared to be the next best thing. And yet I think that studying visuals (and perhaps design) in rhetoric of health and medicine is a fruitful possibility for pushing scholarship forward. I think that we miss out on a lot by only focusing on alphabetic text. Perhaps this is related to J. Blake Scott’s rhetorical-cultural analysis, which (roughly speaking) applies a cultural studies lens to science to help us more effectively figure out what it’s doing and how it is functioning in the world. Many people have made visual arguments about print documents, ranging from Latour and Woolgar writing about how small mammals in a lab get translated into a graph that is then dropped into a text (which disconnects it completely from the original mammals themselves) to health communication scholars analyzing how the design of disease pamphlets impact patients. In turn, I have to figure out what I want and where I fit in. (OR, better yet, what the research tells me).

2. The best research questions are one that you can’t already answer. 

As #TeamRhetoric discussed during last week’s writing group, our students often only want to pose research questions to which they already know the answer: How does caffeine affect the body? What do CT scans do? Maybe what I mean is that these answers become obvious through just a little bit of research–no digging, just aimless Google-ing. Along with everyone else, I already know that Lyme Disease is controversial. It doesn’t take much work to google IDSA vs. ILADS or “lyme disease diagnosis guidelines” before you figure out that there are opposing camps about diagnosis, treatment, and recovery. However, I have absolutely no idea what the standard and patient-generated images of Lyme Disease mean or do–if they have any impact at all. My wonderful boyfriend thinks that I’m trying to investigate something unworthy of investigation–that, by researching the standardization of these images and the history of circulation, I’m trying to make something out of nothing. He’s right that there is a distinct possibility that this project might not generate anything at all. (Though isn’t that a risk with  most research endeavors?) It also might generate something completely different from what I expected. Jen and I kind of laughed at Jason’s suggestion to write my entire dissertation about how to use visual ethnography as a research methods for doing rhetoric of health and medicine scholarship. The project would then be a case study/experiment (as if all projects aren’t really experiments…) that would truly try out something new vs. recovering and restating existing information from a new angle. (Or maybe it would reveal the same things as rhetorical analysis via discourse? Hmmm).

I guess we’ll see what happens? For now, it’s time for me to shower and prepare for an appointment with my new rheumatologist….

 

We are, I am, you are
by cowardice or courage
the one who find our way
back to this scene
carrying a knife, a camera
a book of myths
in which
our names do not appear.
--Adrienne Rich, "Diving into the Wreck" (1973)
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Research Questions/Questioning My Research

It’s funny how the process of creating research questions can prompt you to question your research (and your sanity) entirely! I met with Dan to talk about my Lyme selfies project the other day, and I came away with many insights. Here are a few of them:

  • Most academic monographs don’t have any pictures (or just a few in black and white) because they are incredibly expensive to print. We could say that this is one limit of the genre. My approach could be more of a genre-based approach that argues for the limits of alphabetic text; this would be something I’m very familiar with and would be a relatively easy argument to make.
  • My interest in this might fit into a number of existing academic conversations: visual rhetoric, visual literacy, digital humanities, etc.
  • It might be helpful to look for patterns to see how visual documentation of ill people/their bodies is happening in the vast social networks of the internet. (He highlighted Tumblr, Twitter, and Flickr). This means that I might start my analysis elsewhere–outside of my selfies–so better assess which conversation(s) I want to be part of.
  • Whatever happens, it might be helpful to take time to identify good archives, or strong pools of visuals that I could pull on now or later as part of my dissertation work.

This has led me to some other possibly more fruitful questions, many of which Jason, Jen, and Tiffany pitched at writing group this week:

  • How does a person license photos of their own body for public use? (Or do you?) Is there a kind of “best practices”? What choices do people make?
  • What is it possible for an archive of photos to do? What do I hope/expect that people will do with them, if anything? How do I think they will be circulated?
    • There’s an interesting rhetorical question here about public(s).
  • Can visuals create a space for unheard voices/identities to be recognized?
    • How are visuals a different way of knowing than alphabetic text?
    • Do visuals tell an alternative story?
  • How are visuals being use argumentatively? How could visuals be used argumentatively?
  • What are the networks in which these visual artifacts circulate?
  • How might digital methods/expectations interference/challenge disability studies methods/expectations? What are some effective digital approaches to making sense of things that aren’t alphabetic text?
    • For instance: metadata. Dan suggested that I try not to give text descriptions of my photos because then I’ll be analyzing–and in effect permanently marking–my images and the way the will be used. However, in order to make my photos more accessible to individuals who use screen readers, for instance, I need to embed text into my photos so that screen readers have something to process.
  • How will I catalogue and make sense of these images–my own and other freely available ones?

To prepare myself for a visual project (if that’s possible), I’ve been reading and rereading some scholarship about visual rhetoric, particularly ethnographic methods. This article my McNely et al. has been one of my main sources of inspiration. I thought that their justification for using photographs was compelling, so I’ve included it here:

We have made a concerted effort to use photography rather than videography for two primary reasons: first, as a practical constraint on our field research, we collectively had more experience working with the production and analysis of still images than video; second, and more importantly, we viewed photographs as affording both a medium through which we might better understand and analyze participant knowledge (in granular moments and as a collective whole), and as a mode of representing the complexity of our participants’ work. Our visual methods, therefore, helped us better understand the many genres of writing and rhetorical action that comprised participants’ eventual, public work.

–Brian J. McNely, Paul Gestwicki, Bridget Gelms, and Ann Burke, “Spaces and Surfaces of Invention: A Visual Ethnography of Game Development.” Enculturation (2013).

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