Research never gets far from experience, at least as I practice it. Over the last year, my interests and concerns have changed profoundly due to personal circumstances; while I spent most of the past decade thinking about urbanism and consumption in Japan, the events of the last year refocused my attention on my hometown and on the challenge of caregiving in rural Appalachia. In 2015, my mother was diagnosed with Acute Myeloid Leukemia; she received a stem cell transplant which was successful “on paper,” but she died of a rare complication.
Our experiences and our interactions with the medical industry, hospitals, doctors, and social workers left me with a great deal of personal anger, but also a sense of what is wrong and what is right in how care is approached in a rural setting. Beyond the slogans of “hope” and “defeating cancer,” everyday life can take on a terrible character when another person’s life hangs in the balance of every decision and action you take as a caregiver: “Did I wash the vegetables well enough?” “Should I call the doctor about this symptom, going against the wishes of my mother who is too tired to drive 45 miles to the oncologist’s office, or should I let her rest?” “Is the public restroom clean enough for a woman with a compromised immune system?” Ultimately, “did I do the right thing?” Just as much as medicine, which is a practice, caregiving seems to me as a practice; the trouble is that unlike doctors, caregivers rarely have the benefit of training and experience. Given that I have training in anthropological methods, particularly in linguistic anthropology and photography, I want to begin to speak to these problems.
I have a couple of goals in mind for this blog. First, I want to reflect on what it means to labor as a caregiver. I also want to explore the ethics of caregiving, or indeed, how ethical decisions get outsourced onto caregivers. Second, I want to reflect on rural caregiving, especially on the discrimination that patients often face by virtue of being from “isolated” rural communities. Third, I want to reflect on the economic changes that I see taking place in Appalachia and the south more broadly. Fourth, I have a strong interest in local history, particularly economic history, but also cultural history; I plan to write short pieces on themes that pertain specifically to Johnson County, TN and the surrounding counties. In particular, my mother was an artist, and last summer, she told me about local artists who inspired her when she was young, as well as some whom she thought painted pure kitsch; interestingly, the artists she spoke of were all women, and they are often characterized as folk artists, whether they had formal training or not. I want to share the preliminary research I did on these women and their art. Finally, I plan to share my own photographs.