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