Abstract
About a decade ago, I was diagnosed with mitochondrial disease. Specifically, my neurologist said I had a cytochrome C reductase deficiency. The condition would cause progressive muscle deterioration for the rest of my life. The speed and extent of this deterioration were unknown. “It won’t kill you” he said, “You should be more careful about being hit by a bus.” But I would experience continued declining muscle function. As a humanist-trained academic, I had multiple rich, elegant, and highly nuanced tools and frameworks for retroactively analyzing and critiquing my diagnostic experience. But, I had few tools for effectively engaging with and meaningfully acting in the face of my diagnosis. Turning away from retrospective critique and toward positive planning, acting, and engaging with my diagnosis was like looking through a glass window into another world.
It is a self-evident truth that people, whether in creating a new nation or simply beginning a new relationship, seek happiness. That they often go about it in the wrong way does not detract from the sincerity of their quest.
– Roger Cohen (Cohen, Roger. 2015. Mow the lawn. New York Times. June 12. http://www.nytimes.com/2015/06/13/opinion/cohen-mow-the-lawn.html?action=click&pgtype=Homepage&module=opinion-c-col-left-region®ion=opinion-c-col-left-region&WT.nav=opinion-c-col-left-region&_r=0)
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Notes
- 1.
I’ll note here that the social sciences have not experienced this problem to the same extent or in the same way as the humanities. At least in the United States, psychology, sociology, and related fields are well represented (if reduced and simplified) in the MCAT, LSAT, GMAT, and appear to be gaining relevance in Engineering projects reliant on user interfaces, technological adoption, and safety. The humanities have largely been cast as “performance” (art, theater, music) and without practical use in problem solving. This is especially so in the academic contexts in which I have worked (STEM institutions and medicine) where the humanities are seen as something that can potentially humanize professional practice (playing music for patients in a hospital for example) but not having direct influence on professional practice. Ethics could be seen as an exception for the impact it has on professional practice but as Rabinow notes (passim), even here ethics has been cast as largely retroactive (brought in after the problem has occurred as a corrective or critique when actors reach a crossroads and require consult) rather than participatory and constructively embedded in science or engineering as simultaneous production. Few American Engineering programs, for example, have required ethics courses to accompany their technical curriculum.
- 2.
For analysis of academic writing in the Humanities, see for example: Peck-MacDonald, Susan. 1994. Professional Academic Writing in the Humanities and Social Sciences. Carbondale and Edwardsville: Southern Illinois University Press. Martin, J.R. 1993. “Life as a Noun: Arresting the University in Science and Humanities.” In M.A.K. Halliday and J.R. Martin, Writing Science: Literacy and Discursive Power (Chap. 11, pp. 221–267). Pittsburgh, PA: Pittsburgh University Press.
- 3.
The metaphor is now ubiquitous but was coined by Peter Siekevits in Scientific American. See: Siekevits. Peter. 1957. Powerhouse of the cell. Scientific American 197: 131–140. Also see: Cadenas, Enrique and Kelvin Davies. 2000. Mitochondrial free radical generation, oxidative stress, and aging. Free Radical Biology and Medicine 29: 222–30. Shuler, Michael and Fikret Kargi. 2002. Bioprocess Engineering Basic Concepts 2nd ed. Upper Saddle River, NJ: Prentice Hall, 20.
- 4.
Caprette, David R. 2005. The Electron Transport System of Mitochondria. http://www.ruf.rice.edu/~bioslabs/studies/mitochondria/mitets.html. Accessed: 4 June 2021. Also thanks to Tara Mann for walking me through the process again and again.
- 5.
Breathing (respiration) cleans up the separated electrons at Complex IV and converts them into water as waste product.
- 6.
see: http://neuromuscular.wustl.edu/pathol/diagrams/mito.htm, accessed 16 June 2021.
- 7.
See: Cadenas & Davis, passim. See also Mitochondria Research Society, http://www.mitoresearch.org/treatmentdisease.html. Accessed 16 June 2015; United Mitochondrial Disease Foundation, http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934629/k.4C9B/Types_of_Mitochondrial_Disease.htm. Accessed, 16 June 2015.
- 8.
Kuicharczyk, Roza et al. 2009. Mitochondrial ATP synthase disorders: Molecular mechanisms and the quest for curative therapeutic approaches. BBA: Molecular Cell Research 1793: 186–199. See also: Kühlbrandt, Werner. 2015. Structure and function of mitochondrial membrane protein complexes. BMC Biology 89, https://doi.org/10.1186/s12915-015-0201-x. Fernández-Vizarra, Erika and Massimo Zeviani. 2015. Nuclear gene mutations as the cause of mitochondrial complex III deficiency. Frontiers in Genetics 09, https://doi.org/10.3389/fgene.2015.00134. Rich, Peter. 2003. Chemiosmotic coupling: The cost of living. Nature 421. https://doi.org/10.1038/421583a. For mitochondrial disease advocacy groups, see: United Mitochondrial Disease Foundation, www.umdf.org and mito action, www.mitoaction.org
- 9.
Rabinow, Paul. 2011. The Accompaniment. Chicago: University of Chicago Press, 105–107.
- 10.
Rabinow, 2011, 106.
- 11.
Rabinow, 2011, 107.
- 12.
Rabinow, 2011, 107.
- 13.
Herndl poses a related problem that similarly engages with intention in interdisciplinary work with STEM researchers. He writes, “My own experience working on interdisciplinary research teams in science is that it is very easy for the rhetorician to ‘go native’ when he or she is the only rhetorican or humanities scholar on a project. It is easy to adopt the intellectual, ideological, and institutional position that typically dominates a scientific research question” (Herndl, 2017, 8).
- 14.
Rabinow, 2011, 174–75. Situating the problem within the humanities is deliberate here as the sciences and engineering disciplines do not recognize anything particularly distressful in the current disciplinary arrangements of work or resource distribution.
- 15.
Rabinow, 174–75.
- 16.
Rabinow, 175–176.
- 17.
Rabinow, 2003, 29.
- 18.
Taivassalo, Tanja and Ronald G. Haller. 2005. Exercise and training in mitochondrial myopathies. Medicine and Science in Sports and Exercise. 37: 20942–101. See also Taivassalo T. and R.G. Haller. 2004. Implications of exercise training in mtDNA defects—use it or lose it? Biochimica et Biophysica Acta. 1659: 221–31; Murphy, Julie L., et al. 2008. Resistance training in patients with single, large-scale deletions of mitochondrial DNA. Brain 131: 2832–40.
- 19.
American Physiological Society. 2008. Post-exercise caffeine helps muscles refuel. ScienceDaily. www.sciencedaily.com/releases/2008/07/080701083456.htm. Accessed June 18, 2015.
- 20.
Ahola-Erkkila, Sofia, et al. 2010. Ketogenic diet slows down mitochondrial myopathy progression in mice. Human Molecular. Genetics 19: 1974–1984.
- 21.
For discussion, see Price, Jay and Andrew Curliss. 2008. N.C. State fires Mary Easley as scandal erupts. Raleigh News and Observer, June 8. at http://www.mcclatchydc.com/2009/06/08/69687/nc-state-fires-mary-easley-as.html. Accessed 15 June 2015; Bowens, Dan. 2008. N.C. State provost resigns over Easley hiring. WRAL.com: http://www.wral.com/news/local/story/5145960/. Accessed: 15 June 2015. Dean Smith provides a synopsis and discussion in Smith, Dean. 2015. Authority in Higher Education. London: Rowman & Littlefield, 205–208.
- 22.
Though obvious to some readers, I have chosen to elide the names of these locations because their identities are incidental to the narrative purpose. For those wishing textual validation, please contact me off line.
- 23.
Lyon, 145.
- 24.
Lyon, 145, emphasis in original.
- 25.
Lyon146–147.
- 26.
Foucault, Michel. 1988. The History of Sexuality Volume 3: The Care of the Self. Translated by Robert Hurley. New York: Vintage Books, 44. Originally published as: Le souci de soi. Editions Gallimard, 1984.
- 27.
Foucault, 1988, 54.
- 28.
Foucault, 1988, 54–55.
- 29.
Berger, Scott. 2005. The Power of Clinical and Financial Metrics. Chicago: ACHE Management Series, Health Administration Press; Dlugacz, Yosef. Andrea Restifo, and Alice. Greenwood. 2004. The Quality Handbook for Health Care Organizations. San Francisco, CA: Jossey-Bass, 44; Becker’s Hospital Review. 2012. Breaking down silos to improve patient flow, hospital efficiency. DOI = http://beckershospitalreview.com/capacity-management/breaking-down-silos-to-improve-patient-flow-hospital-efficiency.html
- 30.
For details see: http://www.healthcare.gov/compare
- 31.
Duhigg, Charles. 2012. How companies learn your secrets. New York Times, Feb 16. http://www.nytimes.com/2012/02/19/magazine/shop**-habits.html?pagewanted=all. The controversial aspect of this practice was highlighted not so much as the data surveillance story as the story of a distraught father who accosted a Target manager for pregnancy coupons the store had sent to his teenaged daughter. The manager apologized only to receive, several days later, his own apology from the father who subsequently learned that his daughter was indeed pregnant. See, Hill, Kashmir. 2012. How Target figured out a teen girl was pregnant before her father did. Forbes Magazine, Feb 16. http://www.forbes.com/sites/kashmirhill/2012/02/16/how-target-figured-out-a-teen-girl-was-pregnant-before-her-father-did/. Accessed 18 June 2015.
- 32.
Davenport, Thomas and Jeanne Harris. 2007. Competing on Analytics: The New Science of Winning, Cambridge MA: Harvard Business Press, 7.
- 33.
Lewis, Michael. 2004. MoneyBall: The art of winning an unfair game. New York: W.W. Norton. The 2011 movie, MoneyBall was produced by Brad Pitt, Micheal De Luca, Rachel Horovitz and Directed by Bennett Miller.
- 34.
For the MIT analytics and sports conference, see: http://www.sloansportsconference.com/; also see, http://espnmediazone.com/us/press-releases/2013/02/espn-the-magazine-analytics-issue-on-newsstands-friday/
- 35.
In 2012, Democratic campaign data analysts were able to predict inclination to donate to the campaign, likelihood to vote, and the ability of specific advertisements to generate action within very specific and precise demographic subsets. See: Scherer, Michael. 2012. Inside the secret world of the data crunchers who helped Obama win.” Time, Nov 7. http://swampland.time.com/2012/11/07/inside-the-secret-world-of-quants-and-data-crunchers-who-helped-obama-win/?hpt=hp_t2
- 36.
Huckin, Thomas. 2002. Textual silence and the discourse of homelessness. Discourse & Society 13(3): 347–372, 366.
- 37.
Huckin, 366.
- 38.
Again, an admitted privilege of a dot edu email address and the access an academic institution provides.
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Faber, B. (2022). Personal: Intentions, An Autobiography. In: The End of Genre. Postdisciplinary Studies in Discourse. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-031-08747-9_1
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