Tag Archives: image

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!

 

 

 

Advertisements
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 , , , , , , , , , , , , , , , ,

Visual Ethnography and Health

I came upon “Visual Ethnography: Tools for Mapping the AIDS Epidemic,” a 1990 article by Eric Margolis (who is quite famous for his visual ethnography work). This article is helping me “join the conversation” about visual ethnography as a method for studying health issues. Interestingly, Margolis was ahead of his time. In the wake of the recent digital humanities tide (manta: “put a map on it!”), Margolis situates mapping illness as an important way to figure out where health issues exist and the best means to treat them. He also describes image making rhetorically. He argues, “Skepticism that statistics do not tell the whole truth actually makes it possible for us to interpret quantitative data. In a similar vein, being aware that visual images distort and misrepresent reality can help us to define an appropriate role for the use of nonverbal images in qualitative studies” (371). Later, he adds that visuals can “mislead differently” than language (and I assume he’s talking about print texts?) (374). Margolis helpfully traces the history of the incorporation of photographs into sociology and ethnography; he also distinguishes this from photojournalism. (Note: one of this first and most famous uses of photograph in anthropology dates back to Margaret Mead and Gregory Bateson’s study of Bali). Regarding issues of health, Margolis argues that photographs “convey a human scales that is missing in volumes of words and statistics” and that they “have the potential to not just illustrate but illuminate; social processes, events, relationships, and meanings can be discovered in photographs and graphic images” (374). As a case study, he analyzes the work of a San Francisco-based health outreach group, which aims to stop the spread of AIDS by tracking it ethnographically and then working in those areas to prevent transmission (375). What’s not so great about this work is that Margolis seems to unreflexively incorporate image of individuals who are part of multiple marginalized groups without any regard for the individuals themselves. For instance, there is a picture of “prostitutes” receiving condoms from a health worker and a “transvestite” sitting on a car. Margolis does not talk about how these images were solicited, if people gave permission to be photographed, what the people in the photographs thought of the photographs, etc.

Thankfully, there are plenty of other texts to fill in the gaps. A 2015 review article about participant photography as a research method in nursing studies by Balmer, Griffiths, and Dunn lays out how researches might plan, create and interpret photographic data, ethical and legal considers, and impact on research. Other recent texts, such as Melvin Delgado’s Urban Youth and Photovice: Visual Ethnography in Action (2015) as well as

Some texts, including Urban Youth and Photovoice and Switza et al., “Visualizing harm reduction: Methodological and ethical considerations” (2015), focus on photovoice. I’m not sure how different photovoice vs. photo elicitation vs. photo production stories vs. visual ethnography are the same or if they are actually separate methods. I’m grateful that Switza et al. has a lengthy literature review about photo methods in health research and points me to Collier (1957) and Harper (2002) to learn about photo elicitation and Wang (1999) and Wang and Burris (1997)  and Wang et al. (2004) to learn about photovoice. A few studies (such as Morrison and Thomas 2015 and Bukhave and Huniche 2015) focus on work and occupation, which usefully intersects with my health humanities research. Others highlight literacy (Wargo 2015).  Apparently these methods fall under “arts-based research,” which is interesting to me because I originally approached my investigation from a narrative-based research perspective.

I’m excited to see what comes of this…but for now I have to go eat dinner because I am getting cranky.

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 , , , , , ,

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)
Tagged , , , , , , , ,

Entering New Territory: Picturing Lyme Disease

So here’s the thing: things are changing. A simple Q&A format clarifies everything and nothing:

Q: What’s the most fun part about research?

A: Things are constantly evolving and you never know where you’re going to end up next!

Q: What’s the most frustrating/scary/difficult part of research?

A: Things are constantly evolving and you never know where you’re going to end up next!

We might say that research is a process that is both recursive and reflexive…which reveals new things as it goes along. When you think you’ve already picked a good topic, found good sites/archives for research, and developed your main claims,this can be rather annoying. I’m currently working my way through this phase; it’s kind of like the denial, bargaining, and other stages of grief. I am frustrated because I know both that my original idea–to study the rhetoric of Lyme Disease–was good, but that my new plan–to study the visual rhetoric of Lyme Disease–is significantly  more compelling.

Thanks to my brilliant #TeamRhetoric Writing Group colleagues, especially Jason and Jen, it has become clear that I should shift my project about the rhetoric of Lyme Disease to focus on visual rhetoric/images specifically. Why this change? I’ve learned a lot about the rhetoric of Lyme Disease in recent history, and as I’ve mentioned in previous posts, I have been particularly unimpressed with the images of Lyme that regularly circulate in popular culture. Photos of ticks and drawings of EM rashes? Maps of where Lyme is located geographically? B-O-R-I-N-G. Not compelling (i.e. seemingly not adding to any particular arguments and appearing to merely take up space at the tops of Washington Post articles). So underwhelming that I started taking photographs of my knees to document my own embodied experiences with Lyme for the fun of it. (See the right side of this blog for a link to some of my selfies). AND YET these underwhelming images are likely a subtle key to the contentious arguments about Lyme Disease–as it exists and as it is imagined.

Evolving questions include:

  • What does Lyme Disease look like?
  • Who circulates images of Lyme Disease?
  • What does the circulation network look like?
    • How do Lyme Disease health-seekers/patients envision their connection to Lyme? How do they document their experiences of Lyme, if at all?
    • How do clinicians who treat 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 of course…how do Lyme Disease visuals function rhetorically? How might images/visuals be effective argumentative tools for presenting new ideas/shifting the focusing/reevaluating the stakes of Lyme Disease?

At the moment, I’m thinking through a few major concerns:

  • Is it possible to do a visual project from/with great attention to a disability studies perspective?
  • I don’t know nearly enough about visual rhetoric.
  • How can I ensure that this will be an explicitly feminist and explicitly intersectional project?

But what I do know is this:

  • Qualitative researchers in the health sciences have reported that visual research methods can reveal new and exciting things about health and medical behaviors and practices, particularly about gender.
  • Scholars in the rhetoric of  health and  medicine haven’t often taken up visuals as a) research methods, or b) objects of analysis. A recent special issue of Communication Design Quarterly, a peer-reviewed journal published by the Special Interest Group for Design of Communication, focused on rhetorics of health and medicine and prompted me to think about designs as visuals….(?)
    • “The essays included here explicitly and implicitly point to different ways that ideas, texts, methods, practices, and technologies work in a variety of healthcare contexts, and more importantly, how that information is designed. The essays also bridge theory to practice.” (Frost and Meloncon 9)
Tagged , , , , , , , , , , , ,

Mulling Over Methods: Grant Proposal, Part II

For the SSRC Dissertation Proposal Grant, I need to think about what new method(s) I want to experiment with for my dissertation. This is the really hard part. YIKES. Instead of freaking out about what I might write and not sleeping for a few days, I’m going to try to draft some ideas below…. If nothing else, doing so permits me to wait until tomorrow to grade my students’ unit projects….

And I’m going to limit my time so that I don’t mess around on Facebook while I’m supposed to be “working.” 9:00pm-9:30pm. GO!

What techniques of investigation might you employ to carry out your research, and how do you expect they will enable you to collect, identify, interpret, and analyze the sources of information (interviews, texts, images, surveys, etc.), for your dissertation research? (up to 400 words)

I guess I should break this down into two parts:

a) “Techniques of investigation”:

Right now, I’m thinking about visual ethnography and interviews as techniques of investigation. I guess it would be good if I picked up all those books I reserved from the library about these things. I think that many rhetorics of health and medicine texts are missing visuals for a good reason: they are expensive to print in  monographs. However, scholars from related fields (like communication design) are thinking about the importance of visuals as part of designing useful texts for patients, displaying disease information, etc. I think it would be helpful to look at Lyme visuals. Notably, there are pretty much no notable Lyme visuals circulating on the internet. Most of the pop science articles about it use stock-like photos of ticks and/or the Lyme rash…which, in my opinion, are not very rhetorically effective. I’ve been inspired by looking at Instagram photos of illness selfies (particularly the very gendered ones of women with chronic conditions in bathing suits), but they aren’t that specific to Lyme. Recently, Avril Lavigne and Yolanda Foster (the woman from Real Housewives who has Lyme) have posted pictures of themselves sitting on exam tables and hooked up to electro-node-things, but I don’t think that they’ve been very rhetorically effective either. This presents a few issues.

1. I think that Lyme discourse is missing pictures of ill people–people’s ill bodies–and that these photographs are rhetorically powerful and thus would help effect change.

2. I’m saying that the photos I have seen of people’s bodies haven’t been very rhetorically effective/useful. A paradox?

I’ve been thinking about this other thread–Lyme and the environment–and I’m wondering if this is a place where visuals can illuminate untapped arguments about Lyme. I’ve read some research in environmental studies journals about how Lyme is spread. Apparently, Lyme is not only passed through deer ticks, and is in fact present in many other small animals who come into contact with humans in areas with a lot of building/development. One article, I think it was the NYT, suggested that it’s unclear if your geographic location or socio-economic status is a better determination of whether or not you might get Lyme. The author didn’t back this up with any supporting research, but the correlation is striking. In any case, I think we’re left to wonder about what Lyme LOOKS like as well as what people who have it LOOK like. If that makes any sense. A bullseye rash is not a person. In fact, it’s completely disembodied (since the photos usually only show an ambiguous body part with the bite/rash on it). Maybe what I’m missing is that the recent photos of Avril and Yolanda are seemingly average/unexceptional–what that’s what Lyme patients look like?

b) How will these techniques help me collect/identify/interpret/analyze these sources of information?:

Right now, I’m trying to have a lot of different source of information:

  • Photos/visuals: A visual ethnographic research method would allow me to create an archive that I could study through rhetorical analysis. I’m not sure if this is what they’re asking.
  • Interviews: MAYBE? I’m going to read Allie Cashel’s (sp?) recent book about Chronic Lyme. In it, she interviews many fellow Chronic Lyme sufferers…I can’t say much more because I haven’t read it. Maybe she’s got that part of it under control. It seems like interviews might be helpful, but I’m not sure what for yet. It would be exciting to talk to clinicians/field experts like Amy Koerber does in her book, but I’m not sure that I have enough ethos to get on their radar. There are also first-person testimonies via Kathleen Hanna’s film, The Punk SingerUnder Our Skin, etc…so maybe this wouldn’t be a fruitful direction?
  • Texts, texts, and more texts: I imagine that I will spend most of my time doing rhetorical analysis of texts about Lyme. Specifically, naming/definitions of Lyme from major interest groups,

Summarize as best you can where you feel most confident in the progress you have made thus far in developing your dissertation research project and what issues or questions you must still resolve in order to prepare a dissertation research proposal. Explain how you hope participating in the DPDF Program might help you to resolve these issues. (up to 250 words)

I am confident that I am going to do a rhetorical analysis/use a rhetorical lens to study Lyme Disease. YAY! Most of all, I want to shift my focus on Lyme and ill women to Lyme and gender and how it plays out. In the same vein, I want to study the everyday practices/rhetorics of people with Lyme in order to honor their experiences and perhaps make more capacious claims about the state of chronic illness in the U.S. I want my project to be explicitly feminist. And I know it’s a good project–there’s a lot of under-analyzed stuff out there (both professional discourse, online forums, etc.)–so I’m joining a conversation, so to speak. Questions that I’m still thinking about that maybe this project could help with:

  • How is Lyme Disease overly/covertly gendered? How? I know that Lyme isn’t gendered in ways that we expect because the largest population of people in the U.S. diagnosed with Lyme are young boys (ages 5-11 maybe?), yet we hear the most about chronically ill women who think they have Chronic Lyme or Post-Treatment Lyme Disease Syndrome and have been misdiagnosed repeatedly and area suffering greatly.
    • I think Lyme Disease is also a race and class issue, and I’d like to explore it using an intersectional approach. I’m not sure how I want to do this. I want my work to be explicitly (and deeply) intersectional, but is this a fruitful direction? 
  • How do ill people with Lyme Disease experience their condition as part of their everyday life/practices? We can easily read snippets of people’s experiences in newspaper articles, magazine features, etc. about their experiences with Lyme Disease, but I want to know more about what it means in their everyday lives. What are we not seeing through our currently available means? 

What preliminary research do you propose to conduct this summer with a DPDF fellowship, and how do you anticipate this research can contribute to the development of your dissertation project? If you have already conducted preliminary research for this project, what further do you hope to learn from additional research this summer? (up to 400 words)

Oops. Time’s up! More tomorrow.

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