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S208

Week 8
23 May 2007

Chris Ganchoff
 dissertation research covers 2004 CA Prop 71 re: stem cell research
 California Institute for Regenerative Medicine
 state Supreme Court rejected challenges, allowing CIRM to move forward
 $300 million per year over 10 years
 in 2004, NIH spent $26 million on stem cell research
 originally interested in development in Latin America (peasant movements re: questions of
land ownership / liberation theology – certain reading of New Testament)
 moved on to medicine in science
 Epstein – Impure Science
 picked topic in fall 2001, when stem cell issue was addressed by president in August 2001 –
his first address as president
 his decisions ultimately turned out to be very productive for health social movements
 pro-cures movement has emerged. lay activists supporting human stem cell research
 controversies around ownership of cell lines.. important impact on types of therapeutics
that will be developed by stem cell research
 James Thompson at University of Wisconsin – original paper re: successful
culturing/survival of human embryonic stem cells (funded by Geron). Wisconsin claims
they won patent dispute
 biological therapeutics – uncertainty over who gets what
 venture capital firms only want to invest things that they know will produce a profit in 10
years
 due to the tenuous nature of the field, VC firms have been reluctant to fund the basic
science
 interviewed patient activists and bench scientists who were active on the campaign.
interesting set of questions around scientists’ involvement in electoral politics
 scientists would appear at campaign events saying vote for Prop 71
 also interviewed people at biotech firms to get their perceptions
 participant observation at campaign events, series of conferences re: Prop. 71
 under Prop 71, 50% of revenue goes to state funds to help pay off debt owed by CA
 idea was that revenue would help keep CIRM self-sufficient/self-funding
 for 3 yrs, state assembly cannot make any laws changing these rules. those 3 years have
expired, so now legislature is drafting bills to change this agreement (to ensure CA gets
steady/equitable rate of return) .. so the question of who gets what is still in flux
 opponents of Prop 71 argue there really is no way to assure this
 Beth M: what stops pharma from marking up products, passing on costs to individuals
and insurers?
 state legislature has considered price controls
 it has been argued that biotech has, since its inception, had connections with industry
 many of these people were not professional activists (resource mobilization theory – people
paid to be activists)
 Prop 71 campaign benefited from this configuration
 Prop 71 benefited from creating affiliations with patient activists who had extensive
formal and informal networks (on ostensibly nonpolitical topics)
 Gamson – activists target these (hard-to-pin-down) processes of mobilization
 one of the major rhetorics of stem cell research is ‘curing.’ for disability activists, ‘curing’
means something very different (something closer to eugenics). so disability activists
weren’t as enthused about stem cell research as some other movements may have been
 Robert George – secular argument (counterpart to Roman Catholic ensoulment) re: how
everyone was once an embryo – a stage en route to personhood

 Janet: to what extent was the body of health social movement literature useful, or to what
extent did it consider the pro-cures movement? how did you engage the literature?
 Chris: no coincidence that many of the pieces today are around HIV. paradigmatic health
social movement. activists had to find entry points into fields of expertise. this largely
happened through debates around the clinic, where pharmaceutical objects touch bodies.
stem cell research is nowhere near the clinic, so activists are having to work further
upstream, engaging experimentalist discourses – very basic cellular/molecular biology.
AIDS treatment got through studying epidemiology. that’s one of the major differences.
that opens up different forms of politics. there’s a different set of scripts that activists can
use when they are working farther upstream, when they’re working around
arguments/controversies/claims-making processes in the lab as opposed to in the clinic.
there are many similarities as well. many of the activists come from traditions of already
working in patient advocacy organizations. one of the major roadblocks that Gamson
talks about that faces AIDS activists.. along political/economic lines.. in US, since we
have pluralist/interest group approach to claims making, various disease organizations
petition the government for attention (dollars in NIH funding). in structure of politics,
funding is zero sum (dollar for Parkinson’s is dollar that doesn’t go toward diabetes).
structurally, advocacy groups are pitted against each other. pro-cures movement allows
different disease constituencies to come together and form a provisional coalition of
actors. in that way, the controversial nature of human stem cell research benefited many
of these activists, allowing them to develop discourses/political organization.
 Janet: are health social movements unique? is there something about health/illness that
motivates people who might not otherwise be politically involved? how do we see these as
raw materials, theoretically or conceptually, for what becomes a social movement?
 Tania: liberty to health seems to cross political lines
 John: in many cases, people are concerned with something that may affect them
personally
 Krista: health not recognized as a right in the US
 Beth M: activism in dentistry is entirely professional-driven
 Janet: do you think that in the US, or in a particular Western kind of biomedicine, our
individual focus mediates against a collective sense of identity?
 Linda: push to make individuals responsible for own health could help motivate activism
in our society
 Erica: HIPAA has increased sense of health as private (people not as inclined to talk
about others’ health)
 Chris: tensions between what gets defined as public and what gets defined as private.. this
public-private boundary is precisely what’s at stake in many of these movements.
individualism as causal factor for these movements. calls to maintain health tied to calls to
be politically active. requires certain degrees of social mobilization. you can’t just be upset,
although that is important – grievances alone aren’t enough for a social movement, you need
organization. political opportunities for activist groups to emerge – people don’t think of
dental problems as political problems.
 the collective identities that emerge around struggles for health/illness are not identical to
those of the population with the illness. these identities are constructed, the result of directed
political activity.
 in terms of class and social movements, Craig Jenkins re: farm workers in CA. United Farm
Workers succeeded b/c they were able to enlist elite support.
 Marshall Ganz responds that strategic capacity (leadership) of UFW was very different
from that of prior movements to unionize the farm workers (where auto union leaders
were brought in and asked to organize farm workers)

 Janet: inalienable rights have historically been interpreted as right to be left alone (free from
government or state intervention). but health social movements are more about individual’s
(or group’s) rights to claim certain things from the government. statement of an obligation
that the state has to individuals or groups.
 Cindy: a lot of these movements started around the 14th Amendment (right to citizenship)
– this is where advance directives came from
 Krista: in political philosophy – positive rights (e.g., right to health care) vs. negative
rights

 Janet: new social movements.. is there something new about 20th-century social movements
that distinguishes them from previous social movements? can you give us some background
re: that debate?
 Chris: initially, for many social thinkers, social movements essentially irrational
phenomena (crowds, riots; when people got together, filled with enthusiasm).
constitutional right to assembly – distinction from many European parliamentary
democracies, due to paranoia of crowds (Gustave Le Bon’s The Crowd – Le Bon an
aristocrat trying to maintain power)
 Parsons/Smelser. emphasis on political system, the polity, held in state by set of values
(political culture). specific society has glue, mutual expectations for those in power and
those subordinate. political system largely rational. Smelser’s argument (The Theory of
Collective Behavior): those upset at the system are largely irrational.
 resource mobilization. the problem for structural functionalism was that they were
saying social movements are largely irrational, but the antiwar protests of the 1960s were
occurring on college campuses (arguably the height of rationality). if these people are
irrational, why are they held in such high status? the resource mobilization perspective
shifted the lens on social movements, saying they are eminently rational; you can think of
them like any other organization. you have to have flow of resources coming in.. it’s
rational. RM tradition got much impetus from Mancur Olson (The Logic of Collective
Action) – problem of the free rider. social movements are focused on collective goods.
in fact a built-in logic of nonparticipation when it comes to collective goods. when actors
think about it, they won’t participate, but they’ll be a beneficiary of the movement. the
major way in which movements overcome this problem is through selective incentives –
you get something for your contribution (you get stuff other people don’t get). but this
reduces your overall income. this problem of the free rider leads social movements to
become like normal organizations – they have to produce magazines, they have to
fundraise.. large proportion of their budget devoted solely to survival. social movements
become internally differentiated; they become less radical (tendency toward moderation).
RM theorists use ecological/selectionist model (organizations existing in particular niche)
– social movements forced to occupy certain niches, especially in a dense field (e.g.
antiabortion movements.. 100 groups all petitioning the same set of potential adherents,
who don’t have enough money to help all 100. so the 100 are in competition with each
other to acquire as many adherents as possible). introduces economic logic – social
movements no longer thought of as irrational; they are formal organizations bounded by
economic logic and constraints.
 criticisms of RM theory: question of elite support. RM argues it’s very important for
movements to get elite support b/c they need resources. but elites generally like the
status quo the way it is; why would they donate resources to overturn the status quo? it
doesn’t make sense, and empirically doesn’t seem to be what’s happening. RM seems to
be good at explaining certain social movements, but not social movements in general.
Doug McAdam – political process theory. getting resources is important, but there are
other things that are important as well
 new social movement theory comes out of Western Europe (Germany, France).
Habermas, Offe, Melucci. emerges as enemy of resource mobilization theory. 1985
Journal of Social Research (Gene Cohen, ed.) – debate between RM (Tilly) and new
social movement theory (Offe, Melucci). the latter trying to think broadly through field
of post-Marxism. trying to retain Marx’s critical edge – society has a lot of problems.
critical social science, but they wanted to avoid reductive economic Marxism (that all
politics can be understood by class distinctions). Habermas and Offe thought this was
too reductive. they were trying to make an argument that realm of politics has kind of
autonomy, a logic that does not reduce to class dynamics. Marx’s base determining
superstructure (ideology, politics, law, etc.). Habermas argued economics is important,
but it doesn’t determine politics – politics may have own set of rules/logic that it follows.
Marxist bifurcation of politics into bourgeoisie and proletariat. new group of people
emerging – professionals, lawyers, doctors.. they’re not the owners of the means of
production. they’re not technically bourgeoisie. but they are paid extremely well, they
often have a lot of wealth, and they have extremely high status (Weberian typology). new
social formation emerging – the new class debates, the new middle class. the class field
starting to fragment into these segments, caused in part by this logic of politics. new
social movement theorists argued this new middle class was driving new forms of social
organization. these new forms have certain qualities: reflexivity. RM theorists talk about
how social movements are like formal organizations – an argument with an implicit
endorsement of hierarchy, with information flowing down. but if you look at some of
these movements, their political performance is a critique of hierarchy. there’s a
reflection back on their own movement. decisions made via consensual decision-making.
arguments re: patriarchy, learned practices of gender domination. in older social
movement thinking, that’s not targeting the state or political institutions – that’s targeting
self, interaction. Gamson: targeting everyday life. Melucci: new social movements
calling for change in cultural codes
 norms always systematized. we can have individual political stances on gender roles.
but what predicates that is a system of gender. that’s the level of normative activity that
new social movement theorists were pointing at.
 Janet: double-edged sword. you can potentially gather many people who have ideas re:
what pragmatically should be done about gender; but on the other hand, it’s such a diffuse
target, people may not be motivated to take up such a thing (this is discussed by Gamson)
 Beth: what’s an example of a movement that has changed cultural codes?
 Chris: women’s movement
 Janet: what’s new about new social movements is that part of the target is part of the
system (who we exclude on what criteria)
 Chris: environmental movements. movements target civil society. they’re not calling
for class war
 Janet: Klawiter – three types of breast cancer movements. turning stigma of breast
cancer around. women in cancer walk. attempting to renegotiate what is acceptable
modes of performing the self to varying degrees. toxic tours.
 Beth: but these movements fit into RM theory
 Chris: Swanson: theoretical categories we apply to empirical reality sometimes don’t
fit b/c reality is a complicated, overdetermined process. politics of theory. how do
we adjudicate what seems to be now a changing configuration – movements that are
both formal organizations and explicitly targeting commodification of symbols.
 other important thing in new social movement theory is concept of collective identities.
RM theorist’s selectionist paradigm, it didn’t matter what people believed – just cold
economic calculations. almost borrows from neo-Darwinist doctrine (early arrivers, etc.).
it doesn’t address how people are feeling. Melucci: what’s distinctive about these new
social movements is that they seek to cultivate these collective identities. these identity
categories that can extend historically and posit a future. they become identities we
struggle for to liberate from an oppressive system. these collective identities – this is
what we need to struggle to endorse. 1990s – identity politics emerges out of these new
social movement debates, re: status of political identities. collective identities can
become sources of grievances and thus run the risk of losing the critical edge of
collective identity. they can serve not only for machines for inclusion, they can serve as
devices for exclusion.
 some identity movements reduced the horizon of politics to very crude criteria. some
identity politics arguing that if you’re not a woman, you’re inherently part of the
oppression. a notion criticized by Pat Hill Collins’ notion of intersectionality.
 the logic of identity politics – reverse discrimination. affirmative action. white people
arguing that in certain contexts, they are discriminated against as well. logic of identity
politics can be used for progressive and reactive political formations. the left does not
have a monopoly on identity politics arguments. politics of representation – way identity
categories are constructed and deployed. become key in political struggles over
representation.
 Janet: just b/c you problematize an identity doesn’t mean that it doesn’t become
important. b/c you problematize it, the boundaries of what’s included/excluded is
precisely what politics begins to engage with
 Chris: Butler, etc. in New Left Review (1997)

 thinking of these categories as sites for political mobilization


 John: this privileges biomedicine
 medical institutions have much power, but to the degree they make decisions to deploy
these codes, they have to be recognized as legitimate. medical categories come and go all
the time. they’re overdetermined. to say they’re solely determined by medical
institutions misses thinking about social movements as consequential. 1970s Eliot
Freidson medical dominance. not to cast aspersions on his work – medical professionals
do have an important kind of power – but
 John: things have changed
 Janet: if you’re relying on a medical label to exist already in order to decide that a social
movement exists, you miss how social movements arise from agitation, movement,
political activity toward making things like RSI legitimate. by looking at controversial
diseases or uncertain illness conditions – where claims of credibility and authority re:
who has authentic grounds to speak – is part of the core material that these new embodied
health movements are about.
 Martine: what theoretically distinguishes health social movements from social movements in
general? social repercussions of the illness motivates action more so than the experience of
having the illness itself
 Chris: you’re asking what gives health social movements their analytic specificity.
 Janet: if you remember back to our early reading re: the social experience of illness (e.g.,
Murphy).. their argument was that the experience of illness itself was the social
experience. there is no separate bodily experience. you are arguing for a distinction
between the beingness of woman and the social experience of being a woman.
 Martine: I would say there isn’t a distinction. so if there is no distinction, how are health
social movements distinct from other social movements?
 Janet: Brown trying to argue there is something distinctive about health social
movements. main argument around embodied health movements
 Linda: health can be permeated through anything in our society – the environment, our
food, safety regulations, etc.
 Elena: civic engagement
 Chris: I don’t think civic engagement necessarily amounts to an endorsement of the status
quo. social movements engage at a variety of levels. they’re not mutually exclusive; one
does not only have to work for reformist programs.
 Tania: emergence of new new health social movements? environment, housing, poverty, etc.
do have impact on your health
 very rich literature on environmental justice movement. interesting reframing of
environmentalism emerging in the 1980s, bringing together frame of environment and
frame of civil rights
 Krista: a potential distinction between health social movements and other social movements
is that the former specifically engages biomedicine and the ideology and political economy
associated with biomedicine
 Janet: Barbot’s article. in one of the organizations, they were all about the state needing
to guarantee the proper practice of science. very free market idea – lift all the artificial
controls that the state or economic regulation has on scientific discovery. by virtue of
that, we’ll arrive at the answer of what treatment works best. different organizations.
kind of like different niches.
 Linda: ways stem cell discourse pushed against social norms or taken-for-granted
conceptions?
 Chris: what do you mean by stem cell discourse? there are multiple discourses going on
 Linda: norms about the right to life. what is public and what is private – what are the
rights of individuals to own their own stem cell lines. how does medicine get to own a
part of you
 Chris: in order to do stem cell research, there needs to be a supply of research materials
(e.g., women’s eggs). interesting development has been alliance between pro-life
activists opposed to use of embryos for experimentation and pro-choice feminists who
oppose the possible experimentation on women by science. in California, those groups
are in conversation – they are forming a social movement around this question.
eggsploitation arguments. this field of discourses around the questions around the
potentiality of human life – always possibilities for novel alliances to emerge. Stuart Hall
– the politics without guarantees. when studying a field of discourses, not to analytically
foreclose potential alliances that can be emerge that are surprising. this alliance between
pro-life activists and pro-choice activists is an example of the novel political positions
that are imminent within fields of conflict.
 Erica: at what point do you look back and identify something as a social movement?
 arbitrary historical parameters on a social formation
 Janet: it’s important to acknowledge that there are consequences for deciding whether
something is or is not a social movement. it has consequences for the audience and body
of literature to which you’re trying to contribute. part of the point Klawiter is trying to
make. Race for the Cure a site of social performance – consequences for understanding
collective activism around a health condition. or merely voluntaristic for those
participating
 Beth T: methods
 Janet: interesting that looking at a health social movement involves looking back at
literature and understanding how people are trying to intervene in that debate.
ethnographic observation of participation at a public event. just b/c of theoretically what
you’re saying a new social movement is or involves, it calls for certain kinds of methods
and certain kinds of data collection, b/c of what you’re saying this social movement is
about.
 Janet: Brown: what’s distinctive about health social movements has to do with a very
powerful institution of professional expertise – allopathic biomedicine. Barbot: patient has
sphere of experience that biomedicine needs to take into account. not to say biomedical
knowledge is not useful in treating AIDS, but it needs to incorporate understanding of
individual’s social experience of the disease. lots of different levels at which biomedicine is
being critiqued: it’s not the only legitimate authority; it’s completely missing the prevention
side (Brown, Klawiter); let’s make biomedicine work better.

 Linda: role of media in representing a movement? theorizing re: packaging of movement.


intersection of media and advertisement?
 Chris: depends on what you mean by success or failure. what are the parameters? but it
also depends on what kinds of media you’re talking about. one book by Gamson re:
shaping abortion discourse. they work with a concept they call discursive opportunity
structures (distinct from political opportunity structure). one critique of political process
theory is that it privileges the state. it removes internal factors analytically from social
movement success. level of analysis around media and media representations that might
help us understand certain framings of debates, and the relative acceptance or
nonacceptance of social movements’ positions