An actor-network of consequential consociates: applying anthropology to one’s personal case

In this post, I am doing something somewhat different from the usual.  I am maintaining the order I think I have established (at least as I look at it, retrospectively): this is an experiment in anthropological theorizing and teaching.  But I am delving further into parts of my life that I have not brought out.

So here it goes: applied medical anthropology

A few years ago, my wife, Susan, was diagnosed with a form of cancer known as “myelofibrosis” (who may not know it under that name might be a topic for another post as the exact name can be consequential—see below).  The “official” diagnosis was made, not surprisingly by an oncologist, the acknowledged, state approved, expert who can transform speech (this is myelofibrosis) into not simply an act, but a sequence of new moves a particular set of others, from the patient, to her family, to insurance companies, must now make. [This would be easy to model as a special case of entry into a particular kind of polity of practice.]

The oncologist told us, as I remember it four years later, something like: “People live with this for 15 years or more … You are likely to die of something else … It will change your everyday life as you will now have to schedule regular medical visits.”  I remember she was altogether good at telling us something that we knew, and much that we did not know: we had certainly never heard of this cancer or of its treatment.  Of course we went to the Internet and learned what we could, talked to her further, and settled into what I am experimenting in calling, for various theoretical reasons, a “new normal.”  Actually, what we learned was not extremely bad news for people entering in their 70s.  The oncologist then (and I will keep emphasizing conversational and interactional temporality) tried a drug that would alleviate the symptoms of a cancer that affects the production by the bone marrow of red blood cells: profound anemia and the attendants limits on mobility.

Susan’s body, in its thinginess and peculiarities, was leading us to various particular disabilities that can be mitigated or expanded depending (de Wolfe 2014).

So, this was actually a good time for us to adopt the car culture of suburbia.  The long walks in Manhattan to which we were accustomed would not have been possible anymore.  We escaped one disability.

Things were relatively stable for a few years.  We had educated ourselves in still another polity of practice.  We evolved a new adaptation to the now extent conditions given our resources and consociates.  This was now our new normal, the culture we could not quite escape (though we tried some bricolage with it).

At that point I would have described our “actor-network” as consisting of:

  •     a general practitioner
  •     a clinic with a staff of
    •    oncologists
      nurses
      secretaries
  •  a   mail order pharmacy
  • a radiology center

That is, ethnographically, these were the people with whom we had to talk in order to maintain the syntagmatic order of the treatment.  Each of the person (but not any) could authoritatively tell us when to show up for an appointment, what tests or drugs to take and when.  This question could be asked here but not there.  This act could be performed here but not there, before but not after this other act, etc. [one should also be able to model this syntagm.]

At that point further actor nodes in the network remained as faint indexes mostly buried in the conversations with the interlocutors we mostly had to address.  We did receive reports from the insurance company about what it was paying the doctors, how much it reimbursed for tests and drugs.  While reading these we were amazed (guilty? thankful for the opportunity?) at the cost of the primary drug: $1,600 a shot, every six weeks.

But cost and attendant controls was not part of the syntagmatic order of the treatment as we experienced it so far.

And then something happened.

In my other life, as long-term employee of Teachers College, I know that insurance companies are big players in constraining what we can do.  Every few years, we are told of long conversations TC has with the various major companies.  We are told about the final proposals and why TC might shift, as it did starting in January 2015, from United Health Care to Aetna.  The cost of these conversations are barely indexed though I have a good sense that it is not trivial, either from TC or the companies: staff time and compensation, consultants, lawyers, writers of glossy presentations, etc.

Anyway, the shift by my “employer” (the term is consequential here) brought to my practical attention the insurance company as we registered on new web sites, a new mail-order pharmacy, new styles of reports, and we continually checked and re-checked that the various doctors that were part of my wife’s actor-network were also “in network” (consequential category in American insurance).

I thought this would only be a minor annoyance and that we would return to the “old” (2014) new normal.

This was not to be.

Aetna told us (clinic, oncologists, Susan and I) that the drug, Aranesp, that had worked at maintaining Susan’s condition for three years was:
a)     experimental for her disease
b)    experimental drugs were not covered by Aetna’s contract with “the employer”
Aetna told us, emphatically, repeatedly, after a variety of appeals by various actors, “NO MORE PAYMENT FOR THIS!” Through this speech act Aetna revealed itself as an inescapable interlocutor in the ongoing conversation.  The expanded text of Aetna’s statement repeatedly indexed two different other worlds:
a) it challenged, successfully, medical practical authority (Aetna did not attack its legitimacy but its everyday consequentiality: what is not reimbursed will not be used)
b) it challenge me to, perhaps, challenge TC about a not so minor detail in the contract it has signed with Aetna (and may or may not have allowed it to undercut United Health Care)

I will not go through the many conversational turns that led, after three anxious weeks to Susan starting a new, and altogether experimental treatment (since we will not know for several months whether it will work) at the (reimbursed after full consultation and authorization) cost of … $11,000 a month (not to mention added visits to the oncologist, more costly tests, a blood transfusion)!!!  (I cannot help but believe that Aetna, as a monstrous network of actors with conflicting authority, confused itself: the outcome is altogether … surprising!)

Who knows that Aetna may be correct in its act and is practicing medicine better than our oncologist (though Aetna is careful, I think, never to shapes its speech as an instruction to “do that”).  But, for now, here is our expanded actor-network of consociates who make a difference:

  •     [the one listed above is still very much active]
  •     various parts of Aetna:
    • the doctor(s) who categorized Aranesp as “experimental-for-this-purpose” and the other doctors who discussed our oncologist’s recommendation (she told us how one of them told her to not get so involved in the case! She was not happy!)
    • the staff members of the clinic who have to check the why’s and wherefore’s of each step, repeatedly, with the staff member of Aetna.  The number of phone calls, waits on hold, recalls, faxes, etc. is astonishing.
    •  Susan multiple calls to clinic, hospital, Aetna special pharmacy.
    •  various parts of Teachers College

There are many anthropological points but, to emphasize my usual themes:

  • these are not matters of social structure (à la Parsons) or modern governmentality (à la Foucault) nor even neo-liberalism.  There are matters of structuring through interlocking conversations that transform the field even as they seek the production of temporary (immortal) new normals.
  • in these conversations everyone “screws around” (Garfinkel) even as they all play deeply with matters of life and death (Varenne & Cotter ).
  • ethnomethodology, conversational analysis, and actor-network-theory (that expands on the other fields) are the most useful starting framework but they are not sufficient
  •  screwing around and playing deeply will always produce something extra-vagant (Boon ) that is not predictable on the basis of efficient rationality.
  • each moment in the evolution of the normal-for-some-now (“culture”) makes sense as a syntagm in a local order.  But this syntagm is always at the edge of catastrophic collapse that leads, in temporality, to

A)  instructions “do NOT screw around! Stay in line! Do what your doctor tells you to do”

B)  efforts to bricolage one’s way out of the order and thus:

THIS POST

References

de Wolfe, Juliette   2014    Parents of children with autism: An ethnography. New York: Palgrave Macmillan

Varenne, Hervé and Mimi Cotter   2006
“Dr. Mom? Conversational Play and the Submergence of Professional Status in Childbirth.” Human Studies 29:41668.

[here is the list of the most common references I use. Many of these are implicitly indexed in this post]

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on ‘Lost’ as educator

if one can teach oneself about, say, the philosopher John Locke, has one learned anything? How would ‘we’ know? Does one know something if no one has certified that she does?

There is a part of me that is half-ashamed in the pleasure I take in such shows as the TV series Lost.  It is of course gratifying to know that many people do.  More interesting is the discovery of what so many of these people are doing with the show.  Let me join them.

I will leave to a student the task of tracing the full extent of what people are actually doing with Lost.  Given its success, I am sure someone has started doing this.  So I will give this student one more issue to trace: Lost can also be explored as a site for education.  I build here on a journalistic piece written for the web site of Christianity Today.  I will do so to highlight the educational aspect of the show and how its fits with what I have been writing about in recent years (2008, 2009).

This piece (posted 5/18/2009) is written by Tyler Charles, a freelance writer.  He mentions some of what people are doing with Lost as they investigate the scientific, literary, philosophical and religious hints the show gives.  Charles lists the books and philosophers mentioned, the major philosophical issued revealed, as well as other matters.  He does not mention anyone exploring the political aspects of the show and yet, particularly in the first season, a major issue was the nature of leadership and the organization of government (“Who made you the leader, Jack?”, “A leader can’t lead until he knows where he is going.” – Episode 5).  Actually, this issue has been reopened with the (divine?) appointing of Locke as leader by “the island.”  I suspect some people are also exploring this since it can open conversations about the very grounding of democracy.

Charles reports that people are following these leads.  They seek to find out more about the physics of time travel and electromagnetism, or what might make John Locke or David Hume important enough persons to have characters named after them.  Of course, there is a wiki site where one can start exploring all this: lostpedia.wikia.com.

The French philosopher Jacques Rancière (who still does not have a character named after him on Lost…) brought out of obscurity a, until now, minor figure of the French Revolution, Joseph Jacotot.  Rancière recounts how Jacotot demonstrated, to his satisfaction at least, that any one, particularly someone who did NOT know the subject matter, could “teach” this matter.  Even more challenging he argued that all the material they needed was one book, Télémaque written by Fénelon.  It was not because the book was a source of universal wisdom but because, to say all this more carefully:

anyone (not quite a teacher) can produce a situation
…… where someone else (not quite a student) can learn
………. what this person must have the will to learn, and that,

given this will,

…… anything (and not necessarily Télémaque)

………. can start this person on the way to find out for herself what she wants to know.

This actually might be the basis for a Lost episode.  Unless it is the point of the whole show where everyone has to figure out, again, what to do next given what has happened to them in the past.

In that perspective, Lost (like probably Star Trek, Star Wars, etc.) is becoming a Télémaque for a generation of people using it as a departure to teach themselves about physics, religion, human relationships, etc., not to mention of course many aspects of what used to be called “literary criticism,” and would now fall under the purview of “popular culture studies.”

The question, for a faculty at Teachers College, of Columbia University, is: when someone teaches herself anything, does she “learn” it?  Does one know something if no one has certified that she does?

on researching autism as “cultural fact”

on modeling “autism” as a cultural fact, that is as an enabling and disabling resource for all those who cannot escape it, whether as “child with autism,” parent or teacher of such a child, administrator of a school with special education classrooms, or as policy maker devising new regulations about how to deal with all the above.

There is a cliche in the sentiment that one of the best part in being a professor is being faced by great students challenging one’s pet ideas.  But a cliche can also be true as I experienced again when Juliette de Wolfe, at the end of a seminar, told me that she was anxious about using one of my favorite conceits.  For close to 20 years, McDermott and I have been writing about such matters as learning disabilities as “cultural facts.” De Wolfe, who is starting a project on the processes for the identification of autism, and who had used the phrase in her proposal, was worried that she was caught in something, that was “static.”

On the spot, my answers were weak and not convincing–certainly they were not convincing to me as I thought about them later.  I had mumbled something about the adjective “static” being possibly an attribute of a research analysis, not of a concept that could be used in any number of ways, that emphasizing “change” is much easier said than done, and that those that claim that they do not want to be “static” mostly produce analyses that end up extremely static.  Had I not been interrupted, I probably could have gone on in this defensive/offensive mode without quite answering a very proper concern about the very justification for social science research, particularly in its anthropological version.

McDermott and I devised the phrase (“cultural fact”) to index our roots in Durkheimian sociology (as reinterpreted by Garfinkel) and in American cultural anthropology and pragmatism.  Earlier I had pointed de Wolfe to the pages in Successful failure (1998) where McDermott and I developed the phrase “cultural fact” we had introduced earlier (McDermott & Varenne 1995).  But these passages are not enough.

To stay with de Wolfe’s concern, let’s say that we are interested in children who are having a difficult life and particularly with those who have, or are caught with, something now labeled “autism,” something that was discovered-as-such in America and in the 1940s.  It is something that was fully institutionalized starting in the 1970s.  Autism may be some thing that has always been there in humanity, though until recently this thing may have been labeled something else, or institutionalized differently.  Just putting the issue this way should make it clear that I am taking here the classical cultural anthropological stance (Benedict 1934).  I make the noticing of autism as a thing with specific personal, interactional, and political consequences, a historical event.  In other words I place autism “in its historical context,” or, more jargonistically, I “historicize” autism.

All this is well and good, but it actually must leave our apprentices in confusion.  What are future anthropologists to do next, after we have historicized autism, or any one of its sub-practices (e.g. the meetings where a child gets officially labeled)?  What is the point of historicizing something?  Actually how do we know that we have actually historicized “it” or that we have conspired in reconstituting something that should never have been constituted in the first place?

I argue that our duty, as anthropologists, is to provide future practitioners (parents, teachers, etc.) with a more systematic account of the constraints which they will not be able to escape.  This, I think, is what Durkheim meant when he wrote of social facts as “imposing themselves,” or what Latour now means when he writes about objects as having “agency.”  What easily disappears in these statements as they have been taken for more than a century is that these are statements about the future rather than the past, or even the present.  As McDermott and I put it “Culture is not a past cause to a current self.  Culture is the current challenge to possible future selves” (2006:8).  As I would put it today, technically, a cultural fact is a model for the set of (dis-)abling properties of the present that make a difference in some future.  The task of the cultural analyst is to discern these properties and report on them in a way that makes sense to at least some of the practitioners.

Thus the task for de Wolfe, as she starts observing teachers and students in an “autistic classroom,” is to build a model of those matters that make a difference as the people she meets build a life together and, in the process, instruct her as to what actually does make a difference.

This is what I advise her to do because this is what all those who care for the children need from an anthropologist: a different account of their experiences that may provide them with new resources for the future they will make with each other.

And we should not worry if this account looks to some as a “synchronic” account.  The account, if it is well done, will of course be synchronic in the Saussurian sense.  Others can write about the history of autism and trace its diachronic evolution.  But history, however interesting, is not quite useful because human evolution, including its cultural (linguistic) evolution is not a rational process in the narrow sense.

given arbitrariness, then instruction…

Professor fiddles with computer in full view of about 30 graduate students.  Complains audibly that he can’t get rid of something on the screen.  One student (or more) suggests clicking on what seems the offending screen overlay.  Professor clicks there, and then clicks somewhat wildly on various options.  Apparent success.  The overlay shrinks.  But now the cursor is wrong.  A(nother? Or more) student suggests something like “click on the ‘x’ in the upper right corner.  Professor complies and is satisfied with the result.  Professor then uses the sequence he has thereby ended as an example of “distributed cognition.”

And now I, the professor expands on this discussion in the context of the class discussion about arbitrariness and culture.  As we move from identifying the properties of a social field (culture, semiotic system, etc.) to acting within this field, the essential question then becomes: how do human beings deal with the arbitrariness of their world, including the ongoing evolution of new forms of arbitrariness.  This, for a social scientist is an empirical question.  For an anthropologist inspired by conversational analysis, this is also one that must be answered through examining closely instances when, arguably, people face arbitrariness in the midst of a collectivity.  Thus the exemplary usefulness of the above example.

Living with computers and other such technologies involves facing on-going changes in the acts needed to accomplish simple tasks.  Depending on much, this can be exciting or annoying.  During a lecture, using a now unfamiliar computer, the latter is probably the most usual personal response (from watching myself and others as the carefully prepared presentation collapses more or less completely).  The issue, in the context of a lecture on arbitrariness, is that in all cases, the act that will resolve the matter and get the computer to do what one expects, cannot be simply predicted.  Familiarity with stylistic choices by software developers (e.g. Windows vs. Macs) can suggest where to look for the solution.  But one soon discovers that familiarity can lead to dead ends (e.g. the version one is now confronting may be newer or older than the one one is used to and the sequence one has used, does not work).

In cultural anthropology and related field, the usual next step is to invoke the need to “learn” the particular encoding of the task.  This is OK as far as it goes but actually does not specify how this is to happen.  “Learning” is also the search for the instructions that will teach them.  But instructing is not a trivial task, as Garfinkel has shown (2002).

And so, in the instance above, we have an “in-situ” instructional sequence.  But it should lead to more to questions about the collective organization of the sequence than on what the professor learned (which is probably going soon to be an irrelevant bit to knowledge given probably changes in the software).

LOL

(Lots of Love?
Laughing out Loud?
Who decides? [the power question]
How does one find out? [the educational question])