Link for joining the seminar on Teams
This paper takes as its object of attention how people face life with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND). It is based on a year of fieldwork in Northern California (San Francisco). How is the person suffering with this illness attended to, by others, how do they attend to themselves, a form of attention that is sometimes called “care.” What does that term, care, signify when it concerns a diagnosis of a chronic, degenerative, one-hundred percent fatal, neuromuscular illness, whose most common duration is between two and five years? How do people diagnosed with ALS continue to “live as well as possible, for as long as possible,” a historically recent (1975) normative injunction at the heart of outpatient ALS care? Today, all those touched by the situation of a person living with ALS bear this problem and this task, and I will endeavor to give an initial form to it: given the sense of certitude around the diagnosis; given past experiences of those aware of its usual progression; given the uncertainty of the cause; given a stabilized figure of the illness ––“figure” in the sense of prior instantiations of what is to come––how then to tolerate the experience of illness, how to support those who are confronted with it, how to provide aid or solace? This problem builds on a decade of work that I engaged in collaboratively with my mentor and friend Paul Rabinow, particularly our discussions of Bertolt Brecht’s term Haltung (an “attitude-stance”). In The Privilege of Neglect (2020), one of his last works, one that addresses the bearing, attitude and stance of the figure of the “inquirer” today, the Haltung of science as a vocation is considered, in line with the norms of modernity, as being heroic and critical. There may be some place for a heroic countenance and for critique of how cure and care are mobilized today, but as with Rabinow’s figure of the inquirer, these modern virtues, when excessive, can also be vices. The countenances to bear life with ALS will be multiple. The demand to be heroic can be destructive, just as critical rage against the failures of knowledge in the present can undermine the possibility of finding moments of, and forms for, solace.
ANTHONY STAVRIANAKIS is a CNRS Researcher at the Laboratoire d’ethnologie et de sociologie comparative, University of Paris, Nanterre. He recently published an ethnographic account of assisted suicide in Switzerland, Leaving: A narrative of assisted suicide (California, 2020). He wrote his Ph.D under the mentorship of Paul Rabinow, on the problem of collaboration between social and bio-technical scientists on questions of ethics linked to new developments in bioengineering. Together they subsequently wrote a trilogy of works on the ethics and logic of anthropological inquiry, starting from their experience with biosciences, and branching out to explore domains of both the sciences and the arts under conditions of modernity (Demands of the Day: On the Logic of Anthropological Inquiry (Chicago, 2013); Designs on the Contemporary: Anthropological Tests (Chicago, 2014); Inquiry after Modernism (Haven, 2019). During the pandemic, they wrote an étude that aimed to further refine the conceptual repertoire they had developed, From Chaos to Solace: Topological Meditations (Haven, 2021). The last of these works are open access and available at http://snafu.dog.
In memory of Paul Rabinow
Departmental Seminar Series Trinity 2021
The Anthropology of the Contemporary: Life-building, Uncertainty, and the Future
3pm, Fridays (Weeks 1-5) on Teams (link above)
Convened by Anthony Howarth
