Reclaiming the Margins in the Face of the Quantified Self

Gabi Schaffzin


Through the lens of my own experiences with a chronic and painful condition, I consider the ways that quantified self devices and services normalize and classify, creating a new kind of relationship to our medicalized conditions. My project seeks to co-opt these technologies in the service of revealing proprietary and arbitrary translations relied on to make decisions using QS devices.


quantified self; art practice; ethnography


andMe. (n.d.-a). Retrieved November 20, 2017, from

andMe. (n.d.-b). Retrieved June 12, 2016, from

Aarseth, E. J. (1997). Cybertext: Perspectives on ergodic literature. Baltimore, MD: John Hopkins University Press.

Anderson, C. (2008, June 23). The end of theory: The data deluge makes the scientific method obsolete. Retrieved November 21, 2017, from

Blake, R. J. C. (2011). Ethnographies of touch and touching ethnographies: Some prospects for touch in anthropological enquiries. Anthropology Matters, 13(1), 1–12. Retrieved from

Bourne, J. (2017, November 19). Police can request your DNA from 23andMe, Ancestry. Retrieved May 10, 2018, from

Cartwright, S. (n.d.). Work. Retrieved November 25, 2017, from

Choe, E. K., Lee, N. B., Lee, B., Pratt, W., & Kientz, J. A. (2014). Understanding quantified-selfers’ practices in collecting and exploring personal data. In Proceedings of the 32Nd Annual ACM Conference on Human Factors in Computing Systems (pp. 1143–1152). New York, NY, USA: ACM.

Davis, L. J. (2006). Constructing normalcy: The bell curve, the novel, and the invention of the disabled body in the nineteenth century. In a L. J. Davis (Eds.), The Disability Studies Reader (pp. 3–16). New York: Taylor & Francis.

Ehlers-Danlos syndrome - SNPedia. (2016, January 26). Retrieved November 25, 2017, from

Epstein, S. (1996). Impure science: AIDS, activism, and the politics of knowledge. Berkeley: University of California Press.

Frick, L. (n.d.). FRICKbits. Retrieved November 25, 2017, from

Fuller, M., & Goffey, A. (2012). Evil media. Cambridge, MA: MIT Press.

Hacking, I. (1990). The taming of chance (1st edition). Cambridge, England; New York: Cambridge University Press.

Hacking, I. (1991). How should we do the history of statistics. In M. Foucault, The Foucault effect: Studies in governmentality (pp. 181–196). Chicago: University of Chicago Press.

Harvey, D. (2005). A Brief History of Neoliberalism. New York: Oxford University Press.

Herper, M. (2015, January 6). Surprise! With $60 million denentech deal, 23andMe has a business plan. Retrieved November 24, 2017, from

Herper, M. (2011, September 27). The future is now: 23andMe now offers all your genes for $999. Retrieved January 25, 2018, from

History of the quantified self. (n.d.). Retrieved June 12, 2016, from

How does my Fitbit device calculate my daily activity? (n.d.). Retrieved January 25, 2018, from

Genotyping technology. (2015, July 4). Retrieved June 12, 2016, from

Kennedy, H., & Hill, R. L. (2017). The feeling of numbers: Emotions in everyday engagements with data and their visualisation. Sociology, 1–9.

Keshavan, M. (2017, April 6). FDA approves simple genetic tests for risk of Alzheimer’s. STAT. Retrieved November 25, 2017, from

Lupton, D. (2013). Quantifying the body: Monitoring and measuring health in the age of mHealth technologies. Critical Public Health, 23(4), 393–403.

Lupton, D. (2014). Self-tracking cultures: Towards a sociology of personal informatics. In Proceedings of the 26th Australian Computer-Human Interaction Conference on Designing Futures: The Future of Design (pp. 77–86). New York, NY, USA: ACM.

Lupton, D. (2015). Quantified sex: A critical analysis of sexual and reproductive self-tracking using apps. Culture, Health & Sexuality, 17(4), 440–453.

Lupton, D. (2016). The quantified self: A sociology of self-tracking. Cambridge, UK: Polity.

Murphy, E. (2013, October 14). Inside 23andMe founder Anne Wojcicki’s $99 DNA revolution. Retrieved June 12, 2016, from

Nafus, D. (Ed.). (2016). Quantified: Biosensing technologies in everyday life. Cambridge, Massachusetts: MIT Press.

Neff, G., & Nafus, D. (2016). Self-tracking. Cambridge, Massachusetts: MIT Press.

Neuringer, A. (1981). Self-Experimentation: A call for change. Behaviorism, 9(1), 79–94.

Ouellette, J. (2015, October 23). 23andMe is back in the genetic testing business with FDA approval. Retrieved June 12, 2016, from

Parapia, L. A., & Jackson, C. (2008). Ehlers-Danlos syndrome--a historical review. British Journal of Haematology, 141(1), 32–35.

Pink, S. (2001). Doing visual ethnography: Images, media and representation in research. London; Thousand Oaks: SAGE.

Pink, S., Horst, H., Postill, J., Hjorth, L., Lewis, T., & Tacchi, J. (2015). Digital ethnography: principles and practice. Los Angles: SAGE.

Ruzek, S. B. (1978). The women’s health movement: Feminist alternatives to medical control. Praeger.

Scarry, E. (1985). The body in pain: The making and unmaking of the world (First issued as paperback). New York, NY: Oxford Univ. Press.

Stoller, P. (2010). Sensuous scholarship. Philadelphia: University of Pennsylvania Press.

Swan, M. (2012a). Crowdsourced health research studies: An important emerging complement to clinical trials in the public health research ecosystem. Journal of Medical Internet Research, 14(2).

Swan, M. (2012b). Health 2050: The realization of personalized medicine through crowdsourcing, the quantified self, and the participatory biocitizen. Journal of Personalized Medicine, 2(3), 93–118.

Swan, M. (2013). The quantified self: Fundamental disruption in big data science and biological discovery. Big Data, 1(2), 85–99.

Tremain, S. (2006). On the government of disability: Foucault, power, and the subject of impairment. In L. J. Davis, The Disability Studies Reader (pp. 185–196). New York: Taylor & Francis.

What is Ehlers-Danlos Syndrome? (n.d.). Retrieved January 25, 2018, from

Why Fitbit. (n.d.). Retrieved January 25, 2018, from

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