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…