The Making of Ignorance: Epistemic Design in Self-Tracking Health

The Making of Ignorance: Epistemic Design in Self-Tracking Health

UC Berkeley UC Berkeley Electronic Theses and Dissertations Title The Making of Ignorance: Epistemic Design in Self-Tracking Health Permalink https://escholarship.org/uc/item/5pn009mw Author Natarajan, Meena Publication Date 2016 Peer reviewed|Thesis/dissertation eScholarship.org Powered by the California Digital Library University of California The Making of Ignorance: Epistemic Design in Self-Tracking Health by Meena Natarajan A dissertation submitted in partial satisfaction of the requirements for the degree of Doctor of Philosophy in Information Management and Systems in the Graduate Division of the University of California, Berkeley Committee in charge: Professor Paul Duguid, Co-chair Professor Annalee Saxenian, Co-chair Professor Juana María Rodriguez Fall 2016 The Making of Ignorance: Epistemic Design in Self-Tracking Health © 2016, All Rights Reserved Meena Natarajan ABSTRACT The Making of Ignorance: Epistemic Design in Self-Tracking Health by Meena Natarajan Doctor of Philosophy in Information Management and Systems University of California, Berkeley Professor Paul Duguid, Co-Chair Professor AnnaLee Saxenian, Co-Chair This dissertation contributes to emergent scholarly work on the dynamics of ignorance in the production of power. Drawing on my study of the health self-trackers who identify under the banner of the “Quantified Self,” I examine the “choreography” of ignorance in two intersecting forces that arbitrate the experience of illness and well being. The first force reflects an emergent phenomenon of individuals co-opting the computational gaze of contemporary mass surveillance and turning it onto the embodied self, a redirection that sees its most vibrant and experimental manifestation in this self-tracking community. The second embraces newly formed and structured efforts that redistribute the attention of American medical science from treating illness to preventing illness. This new medical imperative is anchored to the individual, now called on to adopt tracking technologies not only as an act of self-care, but also as a remedial intervention into the very institutions and scientific processes that many self-trackers believe have failed them. Institutional actors, however, present such pursuits as a “democratization” of American medicine. The Quantified Self provides the anchoring social context from which I access the interplay of these two forces, allowing me to illustrate how three engagements with ignorance — selectivity, uncertainty and obscurity — are implicated in failures of epistemic justice. Ethnographic attention to ignorance remains minimal. Thus, the task of studying ignorance requires epistemic innovations. I explore Charis Thompson’s framework of ontological choreography as a tool to capture and analyze how ignorance is orchestrated to produce desired goals. I argue that the rhetoric of democratization of American medicine and the Quantified Self ethos is largely in service to the perceived needs of dominant groups and the establishment science the individual is called to help reform. I conclude that an analysis of ignorance offers an avenue to examine how novel technologies, new movements and fantastical speculations, all invested in rendering our bodies as “data,” reinforce existing dynamics of power. !1 CONTENTS Acknowledgements ii 1. Introduction………………………………………………………………….………………..1 2. Studying Self-Tracking in the Quantified Self………………………………………………19 3. Selectivity and the Quantified Self’s Epistemic Ethos……………………..………………..42 4. The Productive Uncertainty of the Feedback Loop………………………………….………61 5. Obscuring Participation: Fashioning Self Tracking as a Boundary Object…………….……77 6. Conclusion……………………………………………….…………………………………..95 References………………………………………………………………………………………102 !i ACKNOWLEDGEMENTS This dissertation is the product of the generosity of many people. I am grateful to Tapan Parikh for his support of my academic explorations. The opportunities he gave me have been pivotal in my growth as a researcher and teacher. From Tapan, I learned to trust the learning process and embrace the many different shifts in myself, and in the students I was lucky to teach. Thank you to Jenna Burrell for her guidance during my ethnographic explorations in international development. Juana Rodriguez has been influential since the early days as well. Her brilliant, kind, and incisive intellect has been inspirational. Our conversations are always fun, and I walk away with insights that keep giving in many different aspects of my life. Her vibrant and creative writing style has been a companion encouraging my own writing adventures. Thank you to Juana for pushing me to take intellectual risks and sharing in my excitement. I am grateful for Annalee Saxenian for adopting this project and her belief in my ideas. My exploration of Bay Area counterculture is inspired by her intellectual legacy — I began with only a glimmer of an idea about the significance of regional culture in my analysis, and I am delighted to have discovered this analytical lens through her. Paul Duguid’s mentorship is legendary among PhD students at the School of Information and I am beyond grateful for his mentorship in every aspect of my academic trajectory. Paul has most closely witnessed the ideas in this dissertation develop. As I look back at his guidance and feedback through the many years, I have a deep appreciation for how masterfully he scaffolded my intellectual growth, and the analytical brilliance that underpins this excellence. Paul has generously mentored me in developing and co-teaching my first graduate seminar, and attended to every word, and every component of this dissertation, with a keen eye for detail — every time I asked him. Your influence will permeate the many projects to come. I am deeply indebted to the people I encountered during fieldwork in India and the United States for sharing their lives and experiences with me. Gary Wolf and Ernesto Ramirez could not have been more gracious and welcoming. You have made the Quantified Self a very special field-site and I am lucky to have witnessed the evolution of this community. Thank you to all the self- trackers and self-tracking researchers — I have learned much from you. Special thanks to Dawn Nafus and Dana Greenfield for wonderful conversations in the field and outside. In the School of Information, I’ve been lucky to find a community that never forgets its responsibility to create a more just world. I’ve had many stimulating conversations and I am grateful for the care evidenced in our discussions. Thank you to all the PhD students I have interacted with throughout the years. The array of approaches I’ve encountered through you all has enriched my own learning. I am thankful to fellow students and friends for supporting my growth as a teacher — Richmond, Anne, Gracen, Ellen, Max, Richard, David, Emily, Noura and Nick.M — I have learned so much from you. Thanks also to Maggie Law, whose thorough and thoughtful teaching style remains an inspiration. Sarah and Neha, if it were not for the sisterhood !ii that we’ve built over the years, I am not sure I would have made it through the PhD. Thank you for your endless generosity and sense of humor. I am lucky to have begun this PhD trajectory with two wonderful people, Stuart and Galen, and I am grateful for their friendship. Thank you to Andy and Seb for writing encouragement during the final stages. Special thanks to Ashwin, Nick.D, Laura, Bob, Elisa, Janaki and Rajesh for sharing their experiences. I am indebted to Meg, Nora, Patti, Somuadina, Lety, Siu Yung and Catherine for their help in negotiating the bureaucracy. Thank you to Catherine for her kindness in helping me when obstacles emerged. We are lucky to have you. Thank you to all the friends who have supported me outside of the PhD program. I am grateful to my family — my Amma, Appa and Anna for everything they have done for me. I would not be here if it had not been for their support of my personal and intellectual growth. Thank you to Janusz, Bogusia and Jarek for their cheerleading. I am lucky to have you all in my life. Many thanks to Przemek for his strong support throughout this process and for infusing my life with light heartedness, play, and the most delicious food. My Amma’s embrace of writing and her imaginative intellect enlivened and inspired every part of this process. This dissertation is for her. Thank you. !iii 1 Introduction My day in the near future will entail routines like this: I have a pill making machine in my kitchen, a bit smaller than a toaster. It stores dozens of tiny bottles inside, each containing a prescribed medicine or supplement in powdered form. Everyday the machine mixes the right doses of all the powders and stuffs them all into a single personalized pill (or two), which I take. During the day my biological vitals are tracked with wearable sensors so that the effect of the medicine is measured hourly and then sent to the cloud for analysis. The next day the dosage of the medicines is adjusted based on the past 24-hour results and a personalized pill produced. Repeat everyday thereafter. This appliance, manufactured in the millions, produces mass personalized medicine. (Kelly, 2016:173) Kevin Kelly, writer, futurist and Bay Area counterculturist, is a self-described “protopian” — a protopian, he says, is a person who believes in incremental progress, where technological advancements usher in a few more choices and just a little bit more freedom (Brockman and Kelly, 2014). Unlike a utopian, Kelly states, a protopian understands that with these new options, will also arrive new problems. In his protopian fantasy, Kelly dreams of mundane things — taking his medication and supplements in his kitchen. Co-opting the cybernetic concept of the feedback loop, he envisions himself connected to a sleuth of prosthetic sensors that extract his biology in the form of “information”, setting in motion a continuous process of analysis and incremental augmentation towards an optimized embodiment. Typically, the hallmark of a cybernetic fantasy is the belief that human consciousness can be extracted from flesh bodies and transmitted without loss or modification, the body is merely a vessel, and that too, an expendable one (Hayles, 1999).

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