Ethnographically Capturing the Autoimmune: Textures and Surplus
My New Year resolves to avoid fitting in within academic circles that reductively evaluate and lazily quantify my professional and personal contributions. I am tired of defending: my dissertation, my philosophies, and, ultimately, myself. Mentors and elders have confessed that the purpose of academic hazing is to “discipline” you into conformity and normalize precarity. The reasoning behind this approach is that, if you survive graduate school and compete for a tenure-track position, you will be ready (to perpetuate the same cycle). After thirteen years in this field, I presented for the first time at our annual conference to put into focus the plight of being contingency staff. Despite, however, all the intellectual exploitation involved and no matter how draining the cognitive-emotional can feel, I enjoy being an adjunct (with a union). I get to focus on the part of academia that inspires me: teaching, collaborating, and controlling my time, labor, and motivation. Yet the cultural gatekeeping when “others” become “ethnographers” is real, daunting, and messy. I check most (diversity) boxes on paper. However, in real life, I am still “too different” to summarize, contextualize, and justify my work to a jury of my peers. I am an “expert.” Technically. I stopped explaining myself as of late and no longer feel pressure to prove myself or my theories. Why? I am an “awkward surplus.”
The concept of “awkward surplus” fits and it has compelled me to think beyond reading nature into society and vice-versa. Life is not linear or neat. This vantage point helped dismantle existing binaries that limited my identity as an anthropologist. Conceptually, an awkward surplus can, as Fujimura explains, “help us attend to unanticipated results recognized as problematic or awkward by experimenters and thus ignored in their conclusions.” With the world as my laboratory, I zone in on lines of inquiry into the critically disregarded details that tell their own story. Footnotes matter, as does context. I believe my work reexamines the “unexpected” and “experimental” results that come from using different frames or perspectives or that emerge from overthinking them in conjunction with data from “unreliable” sources (like TikTok, like the word on the street, and like my mother.) All this is to say, I am okay with being perceived as weird or different when being accepted or included can cost authenticity, and that is all I can give this field … my truth—all of me. An awkward surplus creates a space for “scientists and social scientists” to work together in the “production of new knowledge” (Fujimura 2014: 520). It feeds a “weird science” (if you will). I like to lay low, but at the same time my personality does not let me (for a prolonged period). Only now am I learning how to measure my words and actions because I have learned the power of a pause and the magnitude of silence.
I am a queer Latina mother from the “hood” with invisible disabilities and a highly complicated family. I am in love and never envisioned it as an essential part of my future. I focused more on pursuing higher education, which disconnected me from my inalienable right to happiness. For brown girls like me, it was one or the other. I did not grow up around healthy relationships, either. I did however create my kin out of love. Judith Butler’s understanding of kinship highlights that they are “relationships of various kinds which negotiate the reproduction of life and the demands of death.” She elaborates that these relationships “emerge to address the fundamental forms of human dependency, which may include birth, child-researching, relations of emotional dependence and support, generational ties, illness, dying, and death (to name a few)” (Butler 2004:10). Family is more than just a neurobiological story, family is about “affective bonds” (Pitts-Taylor 2016:99). However, it is easy to lose sight of this when we depend on foreign and literal definitions.
My father is blind and used to work as a taxi driver in the Lower East Side. He sold fruit from a food truck he drove with me sitting in the front seat beside him. I was his eyes and indicated to him when the streetlight had changed. I told him if it was red or green. He would drive down Avenue D, looking for parking, while I shouted “stop” whenever I became distracted, and the cars behind us honked to move us along. It was a great responsibility (and burden) for a seven-year-old. It was the most intense game of red-light-green-light. However, I never thought parentification would present real challenges in my life. I was scrappy. I gritted my teeth. I was not affected. I got used to being “different.” It was only when I went to Catholic school and could blend in (because we all had to wear skirts, thanks to the uniform) that I made more sense (to myself). I was raised evangelical though I am now in active recovery from it. My recent years of therapy and a complex PTSD diagnosis have helped me conclude that I was raised in a cult. Even though my mother migrated from rural Colombia to the global capital, my world was small, even in New York City.
Growing up, I was prohibited from cutting my hair and wearing pants, swimsuits, or makeup. My “school clothes” consisted of my old “church clothes” (no matter how young they fit me or how ridiculous they looked). Being ridiculed and excluded was inevitable and godly, according to the church. Ostracizing and shame were integral parts of this Christian way of life. What the religion allowed my mother to get away with was cultivating in my sister and me a strong self-esteem. I was not socialized to blend in or to stand out. This ambiguity of presence engendered anxiety and intense feelings about self-worth. It broke my sister, who sits in jail in New Jersey waiting for redemption.
When I heard Neal Brennan’s “3 Mics”, I started to question how my childhood contributed to the addictive behaviors that became clear to me after fieldwork (Fujimura 2014). I invested so much in my brain, and yet, what my dissertation proved to me was that my brain was also broken. I gained new insight into everything I needed to “fix” before I could fully use my training beyond the classroom. I knew these very emotions would hold up a mirror to my face and clear the smoke. After all, emotions have a function (Wentworth and Ryan 1992:38). It is clear that being valued and adored makes us overly emotional folks “more grounded” (Orloff 2018:77). It took me three years to finally feel inspired and safe enough to share my work while having sufficient clarity around all types of the necessary boundaries I needed to have in place in order to become “unstuck.”
Comedian Chelsea Handler’s memoir, Life Will Be the Death of Me…and You Too! (2019) centers on her quest to make sense of her childhood in the face of the Trump administration. It’s admittedly a dark time for many of us. Her need to be self-reflexive coincided with this moment in history because it proved to be triggering. She discusses how she spiraled and was emotionally overwhelmed by the feelings associated with Donald Trump’s electoral win, which had much to do with her childhood. When reflecting on her trauma, Handler identified unresolved grief that correlated with her parent’s “detached” parenting styles and her struggles with depression. All of these factors were inextricable from her brother’s tragic death, which she had yet to process fully. This overwhelming grief, she shares, “defined” her while also creating a void within that consumed her. Hence, she had to “dig deep” and come to “admit” her pain as a means of “beginning the process of relinquishing it.” Handler also notes that, in her quest to understand her father and find empathy for him, she realized how one person could be many different things even to the same person. She explains, “no person is just one thing.” Facts.
People can be filled with light and affection and be tortured, conning, and dishonest too. Happiness can coincide with great pain as well (Handler 2019). This was something that I had difficulty reconciling, how we can be many things to different people without fully knowing ourselves. How can my childhood have been a traum-edy? Why does it feel like this?
I am empathic but do not claim to be an empath. Clinically, I am. Culturally, I am not suggesting that I have special powers, that I am a Medium or something. I feel everything. Energies, vibes, and feelings. I am learning how to manage this “gift” because after I defended my dissertation, I felt haunted by the memories of fieldwork. Then, one of my dearest friends, Carlos, passed away. I would read my notes from the moments we spent together and from our conversations, which I recorded in my field notes until he got sick. I would read them because it was almost as if I could hold on to him a bit longer each time he appeared in my writing. In this regard, I also considered my note-taking practices during fieldwork. I felt them as a practice of reflection but also as the research itself:formatting the world, helping to bring to the fore the non-innocent nature of our research products and our responsibilities regarding the kind of worlds we are willing (or helping) to enact (Law 2015, Law and Urry 2004).
Carlos was a subject and friend, an informant, and family. Weeks after his death, I got shingles. I remember we were each other’s interviewers in many ways. It wasn’t that I could ask him questions and hear his stories without answering his questions about me and sharing my own stories of mischief and resilience. He knew me. He saw me. He appreciated that my favorite empanadas were the ones he made accompanied by his family recipe of “machacado” (a soup from Mendoza, Argentina). Maggio questions what the “narrative structure of storytelling means to people interested in knowing about different cultures? How can anthropologists use storytelling as a new way of engaging wider audiences?” (Maggio 2014:103). When I shared with Carlos that I had been expelled from two middle schools for being too “sensitive” and “rebellious,” he joked that my admission had dethroned a saint. Even as I write this and remember him, my ears tear up. My body cannot forget his memory, either. He will always be present in every memory of Argentina, family, and anthropology.
However, simply saying I am a “highly emotional” person would be misleading. I feel everything, which correlates in many ways with the symptoms and stressors associated with Multiple Sclerosis. For example, medical doctor and empath Judith Orloff explains these distinctions by noting, “an empath’s body is different from other people’s … Our bodies are porous, so we absorb the positive and negative energies around us into our muscles, tissues, and organs. This can affect our health in many important ways…” (Orloff 2018:29). Whenever I disagreed with my parents, it would take me days to recover. Whenever I would visit them for the holidays, I had emotional hangovers. I started to get sick, from shingles to debilitating pain, extreme fatigue, and pins and needles. However, despite many of these symptoms aligning with the diagnosis, I never attributed it to Multiple Sclerosis because so many were intimately known to be confusing. Unfortunately, Orloff argues, “conventional health care has some serious deficiencies when helping sensitive people.”
Empaths are prime targets for medical gaslighting. By and large, they can be misdiagnosed as hypochondriacs or neurotics, which is a very frustrating way to be treated when you’re vulnerable and in need. Or empaths can be sent to a psychiatrist and given a prescription for an antidepressant such as Prozac or anti-anxiety medications such as Valium or Xanax. While pharma is not recommended for empathic overload, I would seek anything that would slow down my thoughts, soothe my angst, or put me to sleep. I spent a year on Prozac only to be left confused.
“Autoimmunity” is a flawed concept. As a matter of fact, there is even ambiguity about what being autoimmune entails because it is unclear if autoimmune dysfunction is the cause of the disease or if it is simply a consequence (O’Rourke 2013). I developed insomnia over the years, which made me feel like, even if I managed to sleep, I never really rested. This embodied confusion would then generate ambivalence about the consequences of poor sleeping habits and Multiple Sclerosis. Symptoms for both include extreme fatigue. I could not sleep because I would have recurring flashbacks to my childhood, to old family fights, to abuse, which, when I woke up, made the day feel like I had fresh wounds. This is how I would start my days: poorly, by reliving past childhood traumas. I realized this had to do with the stories I had also managed to record in my work. I would feel their pain deeply and see them in my own life.
While empathy may not give us a complete sense of someone else’s experiences, it can lead us to take “prosocial strides to reduce their suffering.” Orloff references a study in Health Psychology in which empathetic parents experience “compromised immunity and low-grade systemic inflammation from having to regularly deal with their children’s depression and upsets” (Orloff 2018:133). I did not know I could not keep the emotions I shared separately. My inside voice is loud and disruptive. It sounds defiant but wiser than the graduate student who once feared it. My program did not teach me listening as method, nor was it treated as an important life skill at home. Growing up, we yelled, but no one ever really heard what we were expressing. Feld and Brenneis wrote in American Ethnologist that “until the sound recorder is presented and taught as a technology of creative and analytic mediation … little will happen of an interesting sort in the Anthropology of sound” (Feld and Brenneis 2004:471). I consider my work to be interested in the soundscapes created and maintained through the ethnographic writing process. My dissertation had texture by way of the playlists that I included about the themes I explored, and then I used them to resurrect the feelings I experienced while writing. What I did not account for was that my “ear” had acquired and created new sounds linked to much more painful memories. Whereas I had never “felt” this way while I read, I did while I remembered and wrote them into existence. What will I ever do with all this surplus of emotions?
Butler, J. (2010). Undoing Gender. Routledge.
Feld, S., & Brenneis, D. (2018). Doing Anthropology in Sound. American Ethnology, (31), 461-474.
Fujimori, J. (2014). Sex Genes: a Critical Sociomaterial Approach to the politics and Molecular Genetics of Sex Determination. In Women, Science, and Technology: a reader in Feminist Science Studies (pp. 507-529). Routledge.
Law, J. (2015). After Method: Mess in Social Science Research. Routledge.
Maggio, R. (2014). The anthropology of storytelling and the storytelling of anthropology. Journal of Comparative Research in Anthropology and Sociology, 2(5), 89-106.
Orloff, J. (2018). The Empath’s Survival Guide: Life Strategies for Sensitive People. Sounds True.
O’Rourke, M. (2013). What’s wrong with me? I had an autoimmune disease. The disease had me. The New Yorker.
Pitts-Taylor, V. (2012). Neurocultures Manifesto. Social Text Online. https://socialtextjournal.org/periscope_article/neurocultures-manifesto/.
Urry, J., & Law, J. (n.d.). Enacting the Social. Economy and Society, 33, 390-410.