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S208

Week 2
11 April 2007

experience and SI
 SI was trying to pose itself as an alternative to the more psychological stimulus-response
assumptions re: how people act toward one another, or toward things like disease. no
intrinsic response; emergent process that unfolds and happens in interaction with one another.
this can be an actual interaction with others, or it can be an inner dialogue with the self
(imagined others react).
 we’re not just receptive beings. active doing / experiencing activity, embedded in social
interactions. no perceptual/essential experience.
 what constitutes the experience is the meaning we make out of it.

experience of illness
 what kind of impacts does it have on the notion of subjectivity? how does it incorporate
notions of structure?
 what do we mean by subjectivity?
 defined as this notion/idea that there is a self-conscious subject. it’s the quality of having
a subject, and of acting self-consciously, to be in the world in a self-conscious manner,
and to take on this perspective of this self-conscious subject.
 having a sense of self, to interactionists, means being able to take oneself as an object.
this is inherent within the notion of subjectivity. acting in the world in a way that
requires self-consciousness and taking oneself as an object (thinking of oneself in the
same way others think of oneself).. having the internal ability to do that = wrapped up in
the idea of the subject
 looking-glass self
 people talk a lot about identity, self-concept, a sense of self. it’s an issue of different
kinds of emphasis, as opposed to notions that are radically different from one another.
the key here is understanding the common assumptions about how the world works and
people’s behavior within it

structure
 one of the main critiques against SI as a school of thought / sociological approach = it did not
deal sufficiently with power. SI does not take the constraining quality / systematic patterning
into account. issues about how people are socialized to act in certain ways
 it’s not that SI is incapable of dealing with it; it’s just more interested in microinteractions
and the meso level. SI trying to present an alternate vantage point to socialization
 agency vs. structure. to what extent is the world of our own making?
 how is one’s response/experience in illness of one’s own making? or to what extent is it a
product of a template?

how does it go from an individual experiencing an illness to a social movement?


 later this quarter, we will discuss role of scientific knowledge and different kinds of
knowledges in a social movement
what does it mean to have an illness? what is the nature of that? what are the
consequences? what shapes the “experience”?
 Alyssa: spectrum. with chronic fatigue, patients wanted legitimation. Murphy, the opposite.
 what’s the difference between legitimation and delegitimation, and what does it have to do
with the experience of illness?
 whether or not a disease is conceived of as legitimate seems to make all the difference.
for a legitimated disease (Goffman: invisible impairment vs. visible one – Goffman),
suffering/disability (Murphy) is constituted by the kind of social mediated pain/isolation..
that is the very nature of suffering. that is what constitutes the illness experience itself.
 Ware talks about a delegitimated disease / a disease that is not yet legitimated. suffering
constituted by the fact that their very experiences are being questioned. their very
understanding of their disease is not socially accepted. that is the quality of their
suffering.
 both of these experiences are socially constituted. there’s this underlying theoretical
constant – this interactional dimension of social life.
 recalling last week’s Goffman article: given certain kinds of conditions/diseases and their
qualities/properties, it raises different kinds of interactional dilemmas. how can we
understand the problematics of navigating through everyday life for people with a whole
spectrum of diseases?
 for those w/ chronic fatigue, their interactional dilemma was whether to attempt to
pass as “normal” or disclose that they are sick (and become vulnerable to their
symptoms being trivialized).
 Murphy. no common understandings of how one interacts w/ those in wheelchairs.
 Goffman and Murphy both talk about the responsibility of the disabled to make the
interaction more comfortable for the able
 not so much an attempt to separate the physical from the emotional; it’s a subjective
experience, and there’s something sociologically important to pay attention to in the
subjective experience. those self-identified as sick/disabled will say that as much as it’s a
physical experience, there’s also the emotional/subjective/social/cultural aspects of the
illness. shifting from disease as biologically based to a richer experience. there’s a lot of
back and forth conversation that needs to happen in our understandings of physical disease
and in our understandings of illness.
 in the readings, you find a lot of critiques of what the biomedical model does/presumes
(physiological processes are key; body as a mechanistic organism). if you place the
individual within a larger context – within a society with cultural ideologies, political
tendencies – then our views of what is “wrong” become redirected, broadened. it has less
to do with the individual with the disease and more to do with the culture that surrounds
that person. attempt to shift object of inquiry – our focus – from the illness experience
itself, to a broader lens upon society.
 the structural functionalists’ concept of the sick role conceived of disease as a temporary
role, given that people did the right things. but what about chronic disease, from which
people never exit? in an attempt to theorize out of the sick role and to think about what it
means for someone to have a chronic illness – that one can never leave – what kinds of
consequences does that have?
 issue of genetic knowledge underscores the increasing importance now in our technological
time of the issue of risk, and how there’s this blurry continuum from having a disease
condition to being at risk for a disease condition, and being at risk for risks. our question
isn’t so much where to draw the line, but from a sociological point of view, it’s how we draw
the line. why is it that over time, the line has increasingly become earlier and earlier
precursors, biomarkers. how is it that risk has become a stand-in for disease? it has the
potential to spoil our identities. beyond possibility of losing one’s health insurance, there’s a
crystallization of broader social conceptions about what it means to have this risk. it’s just
insurance companies’ bureaucratic reaction to what it means to have risk
 if the value added of this interactionist tradition w/in SI is to pay attention to subjectivity, the
consequences of selfhood when confronted with illness.. illness as social phenomenon, not
merely a physical one; then all our attempts to fix the physiological problem are ignoring the
broader issues of suffering associated with the illness experience.
 -----------------
 will the demographic shift lay the groundwork for a cultural shift? at the same time, there’s a
whole discourse around “healthy aging,” an extended middle age – active and productive
later life. image of age without aging. as much as it is that age becomes statistically more
prevalent, ideologically we’re still culturally resistant to what that means.
 going back to the SI tradition, when we talk about increasing awareness of risk.. and
lessening the stigma attached to certain kinds of diseases, what’s ongoing all the time about
the boundaries between the self and the unhealthy other. cultural/social efforts to draw
distinctions between what the “other” has … very reminiscent of what Murphy wrote about.
so even though demographically we may have a rising awareness of risk, and an increasing
population of people entering their 60s, the bounds of what defines health and illness will
shift in response to that. how is that emergent phenomenon continuing to unfold in response
to dominant cultural ideologies?
 also shifting is boundaries of what medicine deems as its jurisdiction, in a thoroughgoing
way (what SI talks about) re: how we make sense of illness, and therefore into an
engagement with medicine.
 the contribution the SI tradition makes.. last week we talked about the notion of society as
being built up. the notion that in our everyday interactions (e.g., experiences with illness,
and interactions with others around our illness).. this is how society gets built up. this is how
medicine, disease get built from the ground up. what is the meaning of an illness for an
individual? in this theoretical tradition, it is concentrated from the ground up. sociological
understanding of how these things actually accumulate over time.
 it’s always mediated through interpretation. there is no essential self that is reacting
instinctually or reflexively. one interprets things outside oneself, and one has an ongoing
dialogue with oneself re: who s/he is. one’s interpretation of something is really all that
matters in determining one’s action as well as social action. you can see from that that there
is no essential experience or essential self. there is no intrinsic quality to an individual; it’s
an ongoing performance. so even though one may be bombarded by ideologies, it’s still the
meanings one makes out of those things that will determine one’s reaction to those things.
a key question is: what motivates people to act as they do?
 SI answers that people act based on the meaning things have for them.
 that’s how we get away from essentializing the nature of illness.
 there are different flavors of phenomenology. some are more sociologically informed.
phenomenology is less about trying to get at the essence of something, than trying to bracket
out what we already know about something. when we talk about socially accepted meanings
of things, phenomenology tries to bracket those out.
 under the SI tradition, the notion of society being built up opens up the empirical possibility
that things may be different in the future, in a way that other more top-down kinds of
approaches don’t make provision for. human agency is built in; it’s central to the theory
itself; it’s central to the way social action is motivated and how social action actually
operates; and human agency is intrinsic to where society comes from.

how do these different accounts of illness experience engage cultural ideologies? how do
they highlight what is normal and normative in our society? what is it about cultural
ideology that has something to do with our illness experience?
 in Becker’s intro: she came to concept of interrogating disruption. in looking retrospectively
at her studies, she realized there was this commonality re: disruptions. common, universal
experience of and response to these disruptions, whether or not they were medical.
embodiment of disruption. this embodied experiences of disruption engaged with
normalizing cultural ideologies.
 how do the authors talk about independence, self-reliance, etc. and their effect on the illness
experience?
 Linda: Charmaz talks about feeling of becoming a burden, which can lead to isolation
 Charmaz talks about the uniquely American emphasis on independence and self-reliance,
discrediting definitions of the self. notions of ourselves as independent beings – both on
a physical and emotional/mental level – become wrapped up in dominant ideas of self-
identity. the ways in which autonomy is so valorized and yet so normalized .. inevitably,
for people who can’t uphold that in their social relationships, that ends up discrediting
their definitions of self – ultimately a central component of loss and suffering
 Becker: the whole notion of continuity. the compulsion we have to narrate continuity for
ourselves – to see our own life as a whole. for Kirk to have that devastated – yet once
normalcy was restored, it was as if it never happened.
 personal responsibility. whether people are seen as culpable for the condition or not. yet at
the same time, there’s this constant personal responsibility to restore normalcy. Kirk really
demonstrated that. he restored – through luck of the draw – normalcy in his own personal
narrative.
 disconnect between notion of autonomy (that underlies informed consent) and subjective
experience of not being informed or in a position to consent.

issue of narrative. narrative with respective to social interaction, and as socially


constructed
 Krista: Becker says narrative is a window to the self
 she initially set out to look for continuity, and in the process she found disruption.
 through the narrative, one is making meaning
 biography actually is the story we tell about ourselves. it’s not the totality of what happens to
us. what’s interesting and meaningful and makes a difference is what elements of what
happened to us we select as being important, and our interpretations of those events
 throughout the Becker reading, she talks about the cultural importance of order and our
ability to impose order on events that happen to us. she uses the word templates – they’re
kind of like cultural scripts about who we are, how we present ourselves to other people. ties
into the Goffmanian notion of life as a drama, life as a stage, with us playing roles on that
stage. we are selective and strategic and sometimes taking for granted / unconsciously
presenting ourselves in different kinds of ways in different places.
 profound nature of disruption of illness is that it places in question what your future is going
to be
 survivor’s guilt – having to rewrite your whole narrative about your present and your future
 our narrative includes notions of our social relatedness to other people

in previous conceptions of illness (structural functionalism, psychology), the patient was


absence; the patient was a site/object to which things were done. in SI, for the first time,
patients became workers – notion that w/ illness came an enormous amount of work that
had been unacknowledged in theories about health and illness. all of the authors, in
various ways, talk about the work patients engage in. what are the different kinds of
work that patients engage in, in these authors’ accounts?
 John: bringing meaning to experience
 Cindy: Charmaz portrayed the work of imagination
 reaccommodating/reworking life into a cohesive narrative. deciding what body
performances one is still able to fulfill. what kinds of social interactions are you going to
attempt to engage in? which will you voluntarily withdraw from?
 the value added of the interactionist perspective.. idea of navigating through your day is not
just getting through tasks of daily living, but also the social relationships one is able to have
and the social worlds one is able to travel in. the subsequent work on the self.. if you’re
socially isolating yourself b/c of risk of failed performances, how else will you buttress your
sense of self? those are no longer available to you. in what ways then will one valorize the
self, or redefine the criteria that make you you?
 work of constructing knowledge.. the causal account. chronic fatigue delegitimized;
sufferers flipping it on its head and describing it as a somatopsychic illness. meticulous
construction of that kind of account, to legitimate the disease.