Tag Archives: arts-based research

On Being Chronic (and Human)

Although the academic year ended nearly a month ago, it’s still hard for me to believe that summer is here. Unfortunately, this is because I am (still) exhausted. The end of the semester felt like a race against a million (mostly external) deadlines, like submitting my seminar paper, defending my prospectus, grading portfolios, submitting conference proposal and other application materials, etc. I tried to catch my breath after defending my prospectus and then after submitting my seminar paper, but there was more to do and I’d left too little time for myself to complete everything. I spent my two “free” days at home during the least three weeks of May cleaning, since my house was a disaster. (I mean, I needed to find and return some of my library books, which had racked up almost $40 in fines, scrub things down…things I’d been putting off for weeks or months. Ugh). And for some unknown and INCONVENIENT reason, I stopped sleeping at the beginning of May (due to stress?) and decided to move some of my medications around as a result…which of course caused sleeplessness/exhaustion, cold sweats, nightmares, and general malaise. This went on for about three weeks. I also over-scheduled myself, and during this three-week period I bounced between Maryland, New Jersey, Georgia, North Carolina, and South Carolina. The worst part of everything was that I’d planned for the travel to be a kind of “vacation.”

I hate writing about this because I risk sounding whiny and dramatic. (Though I sense this is a tension that challenges other chronically ill people, too). I *did* enjoy a long weekend in Cape May, NJ tooling around with some of my best friends from college. I *did* have fun visiting with my parents and some of my UMD professors when I was in Maryland. I *did* enjoy my first Rhetoric Society of America (RSA) conference in Atlanta; I heard many smart presentations, made great #medrhet connections, and in general I was so glad I made the effort to attend. I *did* have one great beach day at Hilton Head with my grandparents and extended family over Memorial Day Weekend. (Yes, I’m the idiot who left sunny Atlanta/halfway through RSA to fly to Hilton Head Island as it was pelted by a tropical storm).

But it was really hard. In general, I–my body–felt terrible. My hips and knees ached. My appetite was off. My back was sore. My neck was stiff. My skin was oily and itchy and uncomfortable. I took my pain medication and still couldn’t get comfortable. Without sleep, and with sleep interrupted by night sweats and terrifying nightmares, I was a shell of myself. I tried to enjoy what I could of the “break” I’d scheduled for myself, but I felt like I was drowning.

All of this sounds so trite, but I’m not sure how else to explain it. I still kind of feel like I’m drowning.

But I’m taking a chance and writing about it on my research blog because it impacted my work, my thinking, my progress, and most significantly, my process. The worst part–the thing I’m most ashamed of–is that I submitted a very inadequate full draft of an essay that had been accepted for publication in a special issue of a journal. I received the edits at the end of December and was sure that I’d have plenty of time to expand the proposal. I worked on the proposal with one of my research teams, but I am the lead author. As February, March, and April passed, I knew I had the June 1st deadline hanging over my head and was sure that I’d get to it when school ended. I was sure there wasn’t much work to be done; the proposal was 6-ish pages and the final essay could be a maximum of 15 pages plus citations. Our argument was clear, and it was up to me to flesh it out. My wonderful, committed team offered to help at any/all stages of the writing process, but I postponed sharing my draft with them, waiting until I had more time to work on it. I wasn’t ready. The essay still wasn’t really ready when I submitted it–one minute after the 11:59pm deadline. The editors still accepted it, of course, but I’m so embarrassed. The work is sub-par, even sloppy. I didn’t get my thoughts together until the very, very end, even though I’d been thinking about the project on and off for months. I asked one of my wonderful English grad student friends from college to read what I had around 8:00pm the night it was due, so I did get a little feedback (which was extremely helpful and helped me refocus the argument). But I guess what I’m trying to say is that it wasn’t what I wanted.

I have heard that the “my work is never done” problem pervades academia and keeps smart people from submitting their work for review. This might be part of my issue, but I honestly don’t think that I submitted good work. It definitely wasn’t my best work, and I feel like I let my research team down. Of course, this wasn’t the final version of the essay, since the editors will send me back at least one more version before the essay goes to press. However, I know that the next edits are supposed to be finalizing copyedits, not major issues with the writing style or arguments, and I’m ashamed that I submitted work that isn’t really up to par.

I guess I should have asked for help, but I wasn’t sure how. With chronic illness, I never really know when a “flare” or issue with side-effects will come up or go away. It’s not even clear to me how bad the “flare” is until it’s over.

I’ve had chronic illness issues for so long that, for the most part, I’m done being embarrassed by what chronic illness does to my body. (The acne and sweating/freezing bring up a special brand of middle school shame, but I have blundered through the weight gain, bloating, nausea, pain, nightmares, and everything else with as much grace as I can muster). But to have it disrupt my writing and thinking process for a long-ish period of time is/was unbearable. I think I found it even more upsetting because I’d pulled through different illness episodes before without feeling like I’d failed at anything. In college, I did my senior thesis research in bed, wrote rhetorical analyses from my parents’ couch, and punctuated my work with naps, Ben & Jerry’s, and pills, changing my pajamas every few days. And yet I was successful despite all of these things. Of course, I also had every economic, familial, and cultural advantage, which cannot be underestimated. (Like in so many illness narratives, the white, upper-middle class feminine-presenting woman with generous economic and emotional support from her friends and family pulls through). But in any case, it made this particular episode even more depressing than ones I’d experienced previously.

Perhaps this is also because I’m now a writing teacher. I teach the writing process. I preach the writing process. (Well, the idea that there are many processes, some of which work better for different people, and that one goal of first-year composition is to find one or more processes and composing techniques that work for you). Still, I struggled to put words on a page–my low-bar but high-impact goal for moving my thinking and my projects forward. I guess this isn’t surprising since I struggled to figure out what state (mentally and/or geographically) I was waking up in, but my inability to follow a reasonable, long-range-planning writing process made me feel like a failure.

As a writer and researcher, this experience generated a number of questions for me. I am usually pleased when kairotic moments bring up new questions–questions that can help me begin to solve embodied, everyday problems–but instead, these questions are making me nervous. What happens when we fail at a/the writing process? How do chronically ill individuals negotiate collisions of academic deadlines and flare-ups and unexpected complications? How and when do chronically ill academics ask for help, extensions, or forgiveness? How and when do we explain ourselves (or not)? If, how, and/or when do we share information about our health issues in a professional context?

As my incisive partner frequently reminds me, I’m “only human”…whatever that means. 

But for now, it’s time to rest and recover.


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Digital Storytelling?

As I read Sarah Pink’s groundbreaking text, Doing Visual Ethnography (3rd ed., 2013), I’ve been starting to think about a key question: If I have participants do visual ethnography (i.e. some kind of participant-elicited photography)…what am I going to do with the photographs? Also important: how will I make them meaningful/illuminate their meaning and be ethical in this process? (Luckily, I’m trained in the humanities, so the idea treating research participants like humans and respecting them as such comes very naturally to me. According to Pink, this is not always the case…especially when people try to do creepy shit like film or photograph people without their awareness or consent). I was looking through various starts/stops (i.e. “drafts”) of my prospectus (notes) and saw that I had noted at some point that I thought that having participants create digital stories based on their images would be a contentious, aesthetically pleasing, and possibly useful way to compile and display their images. From what I’ve read so far of Pink’s book, visual ethnography can and SHOULD vary greatly based on the sites and historical moments in which research takes place. Apparently, what counts as “visual ethnography” is rather broad (or at least much more expansive than what I was expecting). It can range from compiling photographs and film that participants have already taken and doing an analysis, researcher as photographer, participant as photographer (I think this is called participant-elicited?), and everything in between. Pink place the most emphasis, however, on having reflexivity be part of the research method, since no research method is ever completely “objective” anyway. This claim assuages my fears about claiming some of the same identity groups as some of my potential participants and the pressure for “objectivity” that often remains present in the social science research I’ve read thus far….

Okay, back to digital storytelling. In short: what if I had my participants “do” visual ethnography with me (I’m thinking that, like any good workshop leader, I’ll also do the study?) as a means of putting together a digital story that might reveal unspoken, invisible, and/or un- or under-recognized experiences (and visuals?) of illness.  I met with Dan yesterday, and he suggested that I put together a very specific (workshop-style, now that I think about it) project trajectory. This might look like:

I ask interview participants, ask them to capture the following images, and then put together a workshop where everyone talks/things/composes their images into a digital story.

  • Week 1: Take 7 photographs of your environment to document how it affects your illness/condition, and do 5 minutes of free-writing about the images and the situation (so that you can remember it).
  • Week 2: Take 7 photographs of your own body (“selfies”?) to document how it affects your illness/condition, and do 5 minutes of free-writing about the images and the situation (so that you can remember it).
  • Week 3: Take 7 photographs of the other people who are part of your illness experience to document how they affect your illness/condition, and do 5 minutes of free-writing about the images and the situation (so that you can remember it).
  • Week 4: Workshop.
  • Week 5: Workshop.
  • Week 6: Workshop.

Now, there’s still a lot of thinking to do about these “tasks.” For instance, what are the ethics of asking my participants to photograph other people as part of their story? Do I need to consent ALL of these people? This makes me think about Jen’s forthcoming book chapter in which she talks about how, for rhetorical research methods in situ, vulnerable subjects are relative based on the specific situation and environment.

What’s on my side, I think, is that (according to my google scholar investigations), there have been many successful (i.e. IRB approved) studies that have used visual ethnography to study health and medicine. (Barbara Harrison’s 2002 review article, “Seeing health and illness worlds – using visual methodologies in a sociology of health and illness: a methodological review” has given me a lot of confidence). The two paragraphs below, drawn from the introduction to “Visualizing harm reduction: Methodological and ethical considerations,” a 2015 article by Switzer et al. from Social Science and Medicine, have also proved to be exceptionally helpful. I think this is one of the key *conversations* that I’d like to join!

The use of visual methods is becoming increasingly common and accepted in health research (Fraser and al Sayah, 2011 and Mitchell, 2011). Photography has emerged as a particularly popular visual medium wherein researchers use images to elicit conversation with/or amongst participants; as data artefacts ripe for analysis; as a way of documenting the research process; and/or as a dissemination tool (Weber, 2008). Photography has been used in health intervention research (Shinebourne and Smith, 2011), clinical nursing research (Riley and Manias, 2004); epidemiological research (Cannuscio et al., 2009); and community-based participatory research (CBPR) (Catalani and Minkler, 2010). However, how and why health researchers use photography varies significantly depending on the study, context, and disciplinary frames of the researchers. While there are a number of source books documenting different ways of selecting a visual method (Knowles and Cole, 2008, Margolis and Pauwels, 2011 and Rose, 2012), literature merging both theoretical and applied approaches to visual methods in community-based health research is limited (for a notable exception see Castleden et al. (2008) and Drew and Guillemin (2014)), especially when it comes to CBPR in clinical spaces. Systematic reviews on arts-based methods in health research (Boydell et al., 2012, Catalani and Minkler, 2010 and Fraser and al Sayah, 2011) have noted that researchers employing visual or arts-based methods often fail to describe how they arrived at methodological decisions, leading to a field that Fraser and al Sayah describe as lacking “theoretical clarity.” Similarly, as Mitchell (2011) explains in a chapter onlooking at looking, studies using visual methods most often report on the “products” of research or the stories embedded in the art work (e.g., this is what the photos show us) however, community-based visual researchers should be encouraged to examine the way participants engage with photographs, or the act of photography itself, especially in the context of HIV CBPR where the principles of meaningful community engagement are paramount ( Flicker et al., 2008 and Israel et al., 1998).

This paper explores the opportunities and constraints of using photo-based methods in the context of a CBPR study on how to engage people living with HIV (PLHIV) in conversations about a hospital’s recently introduced harm reduction policy. We discuss our team’s process of selecting, implementing and modifying photovoice – a method in which participants are given cameras and asked to identify and represent issues and solutions in their community – with photo-elicited interviews. In particular, we reflect on key methodological insights from the study to think through the process of doing photo-based work on a stigmatized topic in a small hospital setting. We begin with a description of the research study and setting, a sub-acute HIV hospital in Toronto, Canada; our initial rationale for selecting photovoice as a methodology; and our subsequent adaptations to meet both study- and importantly, community-needs. We foreground the opportunities and constraints of engaging with photo-based methods in our study by highlighting the following: 1) how the act of taking photos assisted participants in visualizing connections between space, harm reduction, and substance use; 2) expectations of participation and navigating daily health realities; 3) issues of confidentiality, anonymity and stigma in clinical settings. Together, these methodological insights allow us to re-think issues of context when applying photography in health research. Rather than viewing context as a neutral backdrop to apply a method (are arts-based methods appropriate?), context should be viewed as an active force in shaping what can or cannot be done or produced within the space (Duff, 2007). These reflections respond to a call by Castleden et al. (2008) for researchers to thoroughly explain how and why visual methods were selected and implemented so that visual methods can be assessed for rigor.


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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.

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