At some point this year, my dissertation shifted from a (largely unwritten) traditional ethnography to an intentional experiment on writing/thinking/doing disability as a scholar. This was a change borne out of necessity, namely an ongoing writers block stemming from my constant worry about the question of truth. Truthtelling, to be exact. How to form my data into a cohesive project that is 1) mildly elucidating; 2) useful for scholars, families, and professionals in the disability field; and 3) does both 1 and 2 while also doing no harm to my interviewees. This was the hard part.
As both a disability sibling and an anthropologist, I know firsthand that these stories can be dangerous. A family’s tales of stones left unturned, unexamined research studies, the bad luck of geography and time, neglecting to get a second opinion or perhaps listen to the first. Of affective, medical, and therapeutic worlds that have not caught up to the daily needs and lives of these children.
Context is huge, and hugely personal, when dealing with a child with undiagnosed disabilities. I recall a woman I wrote about in my Master’s thesis, whose son’s abilities were seriously compromised by a lack of services during early childhood. I wrote about her experience in my thesis – uneasily, knowing that perhaps I shouldn’t – telling myself that the story was meaningful. Others could learn from this illustration that disability is dynamic and social shaping could be paramount. Did the mother read it? I have no clue. But I mailed a copy to the disability organization where she worked at the time and I’ve thought about it for a decade. In my current work, this was not an experience I wanted to repeat.
I know, too, that in my own family’s disability history there are stories I simply will not tell. Things that have long gone unspoken, that not even my husband knows. Details and ruminations that would traumatize through seemingly sterile memories or the insertion of present knowledge onto past predicaments. And so I remain silent, focusing instead on the generative power of this personal knowledge. As a researcher, I feel obligated to approach the stories of others as I would my own. The question is how to reconcile this new ethics of disability anthropology with disciplinary expectations.
The notion of truth is, of course, fraught. This was captured in the movie classic Rashomon (which every anthropologist should watch), but also more recently in Sarah Treem’s outstanding Showtime series The Affair. I found myself sucked into The Affair’s treatment of truth, memory, and perspective. I became convinced it was directly relevant to my project. And only recently did this start to make sense. Matters of perspective, detail, and the everyday are more subjective than we care to admit, whether as anthropologists or otherwise. For storytellers of the scholarly variety, this raises significant challenges – all the more pressing in research like mine, in which these narratives are embodied physically, emotionally, and intellectually by the children of the parents I interviewed.
Recently, I wrote my first short story in years. It was more of an experiment than anything else, but the words flowed in a way they hadn’t in months. The protagonist was a teenage girl with an undiagnosed sibling, and the story was based loosely on narratives from multiple interviews I conducted for my dissertation, as well as on my memories of growing up with my sister. It’s fair to say it was strongly influenced by my own experiences, yet not at all a piece of nonfiction.
I wrote 20 pages in two days. Twenty decent pages – workable, usable. Twenty pages not of a particular truth, but of a story I felt needed to be told and read. I felt no need to pause to flip through fieldnotes – no need to verify a quote or double check the age of the speaker. I was free to invent the incidentals as I went along. No IRB looking over my shoulder, no anxiety about my research subjects challenging or being harmed by my words. As a scholar, this experiment with fiction was one of the most liberating and productive experiences I have had.
Fiction in anthropology is a taboo. Ditto for our feelings about journalism. Worries of blurring genre lines, about compromising the strength of a discipline that is increasingly challenge by the public as a fanciful holdover from past eras. Sure, we hang our hats on counting Zora Neale Hurston among our disciplinary forebears, but for the most part anthropology thrives on embracing subjectivity while asserting scholarly rigor. It is an argument I largely swallow, but that many in our peer-reviewed society do not. And I cannot help but ask, why bother? If my aim as a scholar and activist is to reach people with my data – which consists, let’s face it, of collections of stories – what is the best medium? Voice? Genre? I am increasingly unconvinced that the answer is a traditional ethnography, particularly if it is published by an academic press and thus largely inaccessible to the public. What’s more, I’m increasingly convinced that the really real that ethnography seeks to capture exists in the composite. I am currently exploring this through my writing, which has become an exercise in distillation and compilation, rather than a comparative analysis of individual cases.
Along these lines, I recently attended a fantastic talk by Viet Thanh Nguyen and Jim Shepard at the Texas Book Festival, which touched on virtually everything I’ve been thinking about regarding fiction versus scholarship. These authors made me think not only of the emancipatory possibilities of fiction version ethnography, but also of its activist potential to fill in critical gaps in our own cultural narratives. How can we use fiction to create new archetypes? For my work, what about the potential to use fiction to carve out a space for undiagnosis as a state and not a stage? For the ambivalent sibling who is neither a martyr nor a failure? To eschew happy endings in favor of something more real. More really real, in fact. I think, too, of Rachel Simon, one of the most well-known disability writers of our time, who has tackled disability themes through both memoir and the novel. And, of course, I think of Rashomon and The Affair, and their reminders to remain wary of truth claims and steadfast narratives, whether from academics or others.
The takeaway? I can say definitively is that I am both intellectually and ethically uneasy about writing a typical ethnography. Rather than be stymied by tedious debates about replicability of findings or the risks of reflexivity, I would prefer to make things up as I go along. I mean this literally, using fiction, reflexive blog posts, jottings, and other experimental or informal writings as an accommodation to help move through the ambiguities and danger zones in my work. Stay tuned.