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Ss2_2009.indd

Science Studies 2/2009
Lessening the Evils, Online:
Embodied molecules and the politics of hope in Parkinson's disease Annette Leibing Virtual communities are an especially rich subject for social scientists studying the dynamic and multifaceted ways that groups negotiate health-related knowledge. What are the forces shaping the health information that virtual community members circulate, evaluate and incorporate? This article explores health information circulating on an international, though mainly North American, email list for people suffering from Parkinson's disease. The dual purpose of the list—of support and knowledge exchange—is shaped by a particular politics of hope, which channels knowledge and projects it into the future. This politics of hope is, at least partly, based on what I want to call "embodied molecules"—the effectiveness of medications created by the list's "cyberbody." Cyberbodies, in this article, are created through the virtual community members' embodied learning. Keywords: Parkinson's disease, pharmaceuticals, embodied molecules, politics of hope, biolearning, Internet To such researches the healing art is… social and cultural embeddedness of much indebted for the enlargement standardization procedures. In his
of its powers of lessening the evils of
recent study on pharmacopolitics Arthur suffering humanity. Little is the public
Daemmrich (2004:160) argues, that aware of the obligations it owes to those
"the authority to govern, that is, to set who… have devoted themselves to these standards…derives as much from the pursuits… (James Parkinson, An Essay ability to classify and characterize people on the Shaking Palsy, 1817; emphasis as it does from the ability to order human relations. This authority is no longer situated solely in the state or medical Ideally, the standardization of profession, but instead is spread across a medications helps guarantee patient network of actors." In fact, as Daemmrich safety in the face of the ever growing (2004: 11) shows, "each of these actors complexity of medication management draws upon smaller and tighter networks in most countries. Studies about to articulate policy positions concerning medication safety often ignore the medical issues." Science Studies, Vol. 22 (2009) No. 2, 80-101 Science Studies 2/2009
This article is about one such network. These communities are an especially By analyzing how patients and their rich site for social scientists wanting to caregivers struggle for good treatment, study the dynamic and multifaceted my intention is to call attention to way members integrate knowledge into the embodiment of information that health-related practices (Wilson and becomes, at least partly, the basis on Peterson, 2002).1 For their members, which truth claims are legitimated. This the online communities can provide bottom-up focus, while rarely used in information, emotional support, a studies of standardization, is important temporary normalization of stigmatized because patients and, especially patient experience; and, to a certain extent, groups, increasingly infl uence and online communities allow participants to shape all phases of the social life of transcend mundane restrictions of time health technologies such as medications and space, in the sense that: people living (Oudshoorn and Pintch, 2003). While geographically apart can connect, people patient groups and their activism is a with mobility problems can be part of common topic in social science studies such a community, and information is in medicine (Barbot and Dodier, 2002; constantly available and not restricted Epstein, 1996), embodied experiences to fi xed hours of consultations with in patient activism have received doctors or self-help groups meeting little attention. This article studies offl ine (Cotton and Gupta, 2004; Hardey, medications and embodiment focussing 2002; Lasker et al., 2005; Seale et al., 2006; on one specifi c scenario: an Internet- Ziebland, 2004).
based patient group.
But how are knowledge and truth It is well documented that, with the on such lists negotiated? What are Internet, access to medical knowledge the forces that literally fi lter the huge has become more democratic (Charland, amount of information on Internet— 2005), leading to more informed something Scott Lash (in Malik, 2005) patients having access to multiple has called "the out of control anarchy sources of information. However, of information diffusion"? Some of Internet searchers are sometimes those social forces, that one might call overwhelmed by information, decision- vectors, following Ian Hacking (1998),2 making and loneliness (Hoffman, 2005) have been documented. For example, or are in danger of uncritically using the infl uence of the pharmaceutical self-prescribed health interventions industry on the production of a range of (Harmon, 2005). This is true in richer health information has been repeatedly nations, and increasingly in developing elucidated (Blech, 2003; Healy, 2004; countries (World Bank, 2006), and among Hemminki et al., 2004; Hogle, 2002; older people who, in many countries, Leibing, 2009 a,b; Rasmussen, 2004;).3 no longer shy away from computer Sarah Nettleton and colleagues (2005: technology (Kaiser Family Foundation, 976) question the purported diversity of 2005; see Goldman, 2001 for Brazil).
information on the Internet, by showing The importance of the Internet for that search engines infl uence the ranking fi nding information on current health of the most popular sites. The websites issues has led to a growing number listed fi rst in results of health-related of virtual communities constituted searches are overwhelmingly "charities, around particular medical diagnoses. medical institutions and pharmaceutical Science Studies 2/2009
companies" and since people most often of the University of Vienna, and click on the fi rst results displayed, these basically consists of using dopamine in have the greatest impact. Additionally, combination with a number of other Nettleton and colleagues (2005) identify drugs, with the combination individually six implicit rules that people apply tailored to each patient. The effects of in deeming a website trustworthy: dopamine treatment generally last for 1. the reputation of the organization up to 10 years. At the end of this period, behind the website (e.g., WHO); 2. the the treatment's side-effects such as professionalism of the organization; 3. dyskinesias (involuntary movements) the website's nationality (preferably that and dystonias (painful contractions of of the user); 4. the website's source of certain muscles) are so disabling that funding (non-commercial preferred); the treatment must be withdrawn. Two 5. the user's self-perception as sensible surgical interventions are possible: and careful; and 6. the repetition of ablative surgery (the destruction of a information on the web. This article selected region of the brain) and deep does not focus on the multiple sources brain stimulation (DBS), the more of knowledge as does, for example, the common one (Freed and Levay, 2002). The excellent study by Barbot and Dodier Parkinson List members were extremely (2002); the focus is more specifi cally on apprehensive of DBS, and some found the incorporation of knowledge regarding the procedure highly traumatizing (see the treatment of Parkinson's disease. also Anonymous, 2005).4 These surgical Parkinson's, a progressive interventions may be used as alternatives neurodegenerative disease, mostly affects to medications, or when medications people over 60 years old, although there have ceased being effective. None of is also a ‘young onset' group. The disease these interventions cures; they only delay was named after James Parkinson's the fi nal phase of Parkinson's disease, 1817 description of ‘shaking palsy' (see although this delay is sometimes for many Roberts, 1997). Parkinson's is caused by years (Correia et al., 2005). An important cell degeneration and loss of neurons in discussion among the Parkinson list the brain, specifi cally in the part of the members is when to start medications brain called the substantia nigra, which and how to avoid surgery. Much of the is involved in the control of movements. information circulating on the list about Today, most experts say that the disease other treatments, for example about is caused by a combination of genetic and alternative medicine, has to be seen as environmental factors. There are different embedded in these discussions of how to forms of Parkinson's, some more virulent, delay the use of last, medical resorts. others causing decline more slowly. The
most common symptoms are muscular The Study Design
rigidity, postural abnormality and tremor.
As of yet there is no cure for Parkinson's The list studied in this article is an disease, although its symptoms unmoderated e-mail list service. It is may be mitigated—temporarily—by predominantly for people suffering from pharmacological and surgical treatment. Parkinson's disease ("we Parkies") but is Current pharmacological treatment for also, to a lesser degree, for their family Parkinson's stems from studies done members and caregivers. Members send in the 1950s by Oleh Hornykiewicz approximately 10-20 messages to the list daily. The list is designed to provide Rabeharisoa, 2008) to describe people a forum for knowledge exchange and grouped around a specifi c pathology or mutual support relating to personal biological marker. Such communities diffi culties arising from living with and constantly reshape how people position treating Parkinson's disease. The list themselves towards the world in which members were notifi ed of my intention to they live, and how people are seen by write an article. Except for three members other individuals and groups. Actor who did not wish to be quoted, there was Michael J. Fox's initial, still incredulous nobody opposed; some of the members reaction to his diagnosis of Parkinson's even encouraged me to write this article disease refl ects what such a positioning, about their struggle. Nevertheless, a disease-linked identity, can entail: "If I to maintain anonymity, no name or had this disease, then I would forever be geographical location is reported in this locked into a prognosis, and with that, an identity I'd had no part in creating. I'd be During one year (2005-2006) all tracked and studied, compared against communications were collected and, others just like me, … to see how I varied following some of the principles of from the norm" (Fox, 2002: 146; emphasis content analysis, the main themes, in the original; see also Anonymous 2005).
issues, and information listed. Thematic Medications are important factors analysis showed that "treatment" was in what one might call identity work. by far the most important issue on the The moment Parkinson medications list and all postings related to treatment work, patients might not only feel were then separated. The material on healthier again, but also regain a sense of treatment was analysed by indexing it normalcy or dignity: "I could walk in the into subcategories that resulted from the street again with pride," said a German importance given by the list members woman after one week of taking her to the following issues: the right dosage, Parkinson medications (Dinklage, 2002). effect on the body (including side effects), It is not surprising that many postings and hopeful (future-oriented) practices. on the Parkinson's list are about fi nding Data was put into context— as much as a temporary normalcy through the right this is possible online (Pearce, 2008)—by medications. Such postings frequently following the discussion threads (and not feature a complex weighing of dosing and just isolating them as categories) and, drug combinations in light of numerous, by identifying core voices that seem to sometimes devastating effects and side-express their opinion with more authority effects. Some postings provide very than others. The following quotes were detailed descriptions of medication-taken from this material. taking. These descriptions of dosing and experience can then be compared The Parkinson Cyber-community and
and contrasted with those of other List its Negotiations of Pharmacological
After the addition of Amanadine Social scientists have used terms such as and Trihexphenidy (generic) ‘biosocialities' (Rabinow, 1996), ‘biosocial twice a day I have cut back on the groupings' (Rose and Novas, 2005), and Sinemet from 4 doses of 50/200 CR ‘emergent concerned groups' (Callon and to 1/2 of that. I take a quick release Science Studies 2/2009
25/100 and one 1/2 a dose of the stomach irritant, so caveats to anyone CR to start the day. Then space out with digestive disorders. I know the other 1/2 doses of CR to fi t my because I've taken it for asthma, as has schedule.… (man with PD5).
my son. The stomach aches are most uncomfortable (woman caregiver).
Trusted knowledge is generally the result of a combination of information provided This example shows that notions such by experts (e.g., researchers) with the as expertise and lay knowledge (e.g. equally important individual bodies of Naiditch, 2007) need to be rethought Parkinson patients having experienced in the light of a constant merging and the drugs. The following example dialogue re-evaluation of different authorities. shows the addition of new information The patient's body ("stomach aches") (from a scientifi c article) to the group's is the primary ground on which such collective knowledge, and the relativizing notions are evaluated and lived. It further of that new information through the List shows that the private and the public member's own experiences with certain are not exclusive domains: the postings, often containing personal matters, are accessible to a large number of readers, Has anyone tried this? (She quotes but also the experiencing individual body from an article by Mally and Stone, merges in some moments with the bodies of other List members, when learning "Adenosine is known to inhibit medications becomes a collective matter, the release of dopamine from as will be shown below. central synaptic terminals. Fifteen In fact, many postings reveal the parkinsonian patients were treated importance and the authority the List has for up to 12 weeks with a slow release for its individual members—an authority oral theophylline preparation …. that at least sometimes surpasses that of The patients exhibited signifi cant ‘traditional experts', such as doctors or improvements in mean objective researchers. The discussions of what is disability scores and 11 reported a good treatment often question health moderate or marked subjective authorities and favour the opinions improvement" (woman with PD). expressed on the List. As Manuel Castells has argued, the ‘power of identity' in Please keep in mind that Theophylline ‘network societies' is often manifest in can be deadly. The drug is used to treat communities of resistance (Castells, asthma, so perhaps someone who has 2004: 30; Stratton, 2000; see also Hardey, used it for that purpose could let us 1999). This is also the case, grosso modo, know if their PD symptoms decreased. for the Parkinson List.6 At any rate, folks with cardiac arrhythmias, coronary artery disease My neurologist prescribed "Neurontin" or a past history of heart attack would to help with the nerve/muscle pain. be well advised to avoid this drug. It I took it for awhile but eventually is not a benign medication. God bless decided to quit taking it. I was hearing (woman caregiver).
too many negative reports about it here on the web. I now take "Naproxen" for It also has a nasty side effect of giving the pain and I think it helps" (man with stomach aches. It can be a serious PD; emphasis added).
I visited my neuro last week. The intern activism; cf. Callon and Rabeharisoa, that saw me for almost 40 minutes 2008) therefore needs to be enlarged: was trying to push sinemet [the most I want to do this by introducing the common Parkinson medication; analytical tool of embodied molecules. A.L.] on me very hard. He sounded worse than the medical sales reps. He Embodied Molecules in critical
insisted that sinemet does not cause dyskenesia! When I told him that Cox-2 inhibitor is important for slowing The concept of embodied molecules the progression of PD, he didn't even is tightly linked to the fi eld of critical know about it. That is the kind of pharmacology. This sub-fi eld looks at younger generation of doctors we are medications as historically embedded. training!…To cut the long story short, I More specifi cally, the fi eld approaches still was not convinced enough to take medication's molecules assuming these sinemet. I have determined to stay out molecules provoke a reaction (effect) of it as long as I can manage (man with in a culturally situated body (affect). It is possible to argue that all molecules are embodied, since bodies are made The List community members often of molecules. Nevertheless, this critical unite to achieve their common goal, pharmacology of which I am an ideally a cure. Rather than fi ghting one advocate uses the term ‘embodiment' to enemy (‘big pharma', ‘the' doctors), emphasize two things: the situatedness this Parkinson group, or, community of of medications (here: the Parkinson resistance pragmatically weighs different group), and the interrelatedness and kinds of alliances that are deemed helpful. inseparability of culture and body (e.g., The example of voting for the democrats Lock and Farquhar, 2007). Embodied in the USA in favour of the legalisation molecules, therefore, cannot be reduced of stem cell research by patients, who to the molecules of the body alone, but are otherwise republicans, shows the can only refer to encultured molecules, as pragmatics of choice: I will show in a moment.
It is the molecules—the small I certainly hope Bush's program (as particles of the chemical compounds of much as I like him, I would have to medications—which act on the body, disagree with him on this), doesn't but not in a uniform way. In this regard affect that [stem cell research] because Andrew Barry's (2005) observation many lives would be lost. I wish he regarding ‘pharmacological matters' is of had a neurologist on his staff (woman importance. Barry, referring to Bensaude- Vincent and Stenger's notion of ‘informed materials', argues that molecules embody These examples show that expertise is information and change identities in constituted of practices in direct relation different environments: "molecules with the experiencing bodies. The should not be viewed as discrete common (and disembodied) analysis of objects, but as constituted in their patient groups and their "dual detour" relations to complex informational and (the successful pushing for their interests material environments" (Barry, 2005:52; through research combined with political emphasis added). The insistence on the Science Studies 2/2009
interrelationship of molecules and their hope from a slightly different perspective. different environments fi nds a parallel One way of explaining the cultural in Georges Canguilhem's cell theory. shaping of what molecules do to people is Canguilhem, in his article La théorie through ‘learning'. Learning is generally cellulaire from 1945, insisted that the understood as a cognitive process of cell is always a center that structures its in- and output of information. However, environment; the same principle applies some scholars in the pedagogical to different degrees when moving from sciences now speak about situated the cell to the person and from the learning, which looks at the sociocultural person to society. The molecules of a aspects of cognition and learning in a medication, depending where they ‘bind' specifi c context (Lave and Wenger, 1991). in the human (or animal), act on different Additionally, learning results in structural bodily systems. Additionally, people modifi cations in the brain, and processed respond differently to the same drug, a information leaves a physical 'trace' of fact which might be partially explained its passage in the brain. Both learning by individual genetic makeup (cf. and the taking of the medications do Aldridge, 1998) in combination with the something to the individual's body—a individual ‘learning' of bodily sensations process that transcends the individual (see below).
and his or her environment.
Much has been written about Learning is certainly linked to ‘embodiment' in the social sciences. This personality traits, which, as Laurence is not the place for reviewing the abundant Kirmayer (2002) outlines, differ cross- literature on this topic (see for example culturally and affect what drugs do Csordas, 1990; Hughes and Lock, 1987; to people and how people 'read' drug Scheper- Nichter, 2008 for an overview). outcomes, effects and side-effects. Roughly, social scientists using the Furthermore, social scientists have long concept of embodiment can be divided demonstrated that our bodily sensations into those focussing on the pre-conscious, are, at least in part, shaped by our social following authors such as Merleau- environment. Howard Becker's classic Ponty and Bourdieu, and those who study "Becoming a Marihuana user" emphasize the interrelatedness of culture (1953) shows that the effects of marihuana, and biology. The concept of embodied its felt bodily sensations, are learned molecules provides a framework closer through an initiation that generally takes to the second approach of ‘embodiment' place in a group. "An individual will be in the social sciences, an approach that able to use marihuana for pleasure only is captured by what Margaret Lock writes when he (1) learns to smoke it in a way about ‘local biologies' (2001: 483): "the that will produce real effects; (2) learns to way in which the embodied experience recognize the effects and connect them of physical sensations, including those of with drug use; and (3) learns to enjoy well-being, health, illness, and so on, is in the sensations he perceives" (Becker part informed by the material body" (see 1953: 35). More recently, Bruno Latour also Leibing, submitted). (2004), in his article about the normative Hope is directly embodied (or, in this dimension of talking about the body, also case, also disembodied), for instance in describes how the senses are "trained" biobanking, when parents store their to feel certain sensations. Bruno Latour newborn's cord blood for future use (cf. (2004: 206) goes so far as to defi ne the Brown, 2005). I want to look at embodied body as "an interface that becomes more and more describable as it learns to be been aware or attributed to other sources. affected by more and more elements". Or, other List members can now dismiss, He gives the example of an odor training as temporary, their own experiences of program (e.g., for fragrances), which side effects after reading that a woman allows the trainee to acquire "a nose", to did not experience the much-feared side be affected by odors that untrained others effects, and other List members may would not discern. The training kit "has even dare to take a medication they had taught them to be affected, that is effected previously avoided because of fears of by the infl uence of the chemicals…" counter indications:(Latour 2004: 207; emphasis in the original). The body becomes articulated Would someone in the USA who takes through this kind of training of the senses Azilect kindly email me a package and, as Latour argues, does something to leafl et? I am told that it is different from the odors themselves. In a similar vein, the leafl et that is enclosed with the I have argued elsewhere regarding the medication in Europe. The US version controversial exhibition of plastinated deals with contra-indicated foods; the corpses called "BodyWorlds" (Leibing, European one doesn't. (man with PD) 2006), that sensations as different as disgust and joy can be felt regarding the Here's some info to start with. …(cites same kind of object, depending on the from the Azilect website) "In order learning process involved.
to prevent a dangerous increase in These fi ndings imply that learning new blood pressure when patients are facts, as in the case of Parkinson research, taking AZILECT(r), they should avoid is not exclusively cognitive; at the same thiamine-rich foods and beverages time these fi ndings imply that symptoms and dietary supplements such as are not exclusively biological. Experience aged cheeses, air-dried meats, pickled entails the embodiment of knowledge herring, yeast extract, aged red wines, through the communal negotiations tap/draft beers, sauerkraut, and soy of sensations. When discussions of sauce. Symptoms of this reaction treatment optimization occur on the include severe headache, blurred Parkinson List, an individual's bodily culty thinking, seizures, sensations of effect and side effect are chest pain, unexplained nausea or shaped through email exchange with vomiting, or symptoms of a stroke. other evaluators. Mainly North American Patients should seek immediate values and cultural scripts structure medical attention if any of these the perception, interpretation, and symptoms occur." (man, unknown PD discussion of bodily sensations. The following examplea discussion about the medication Azilect (rasagiline, I started Azilect about a month ago a monoamine oxidase inhibitor to treat and it helps with my slowness a lot. PD)—shows once more how the body I am doing much better on it along evaluates and shapes information found with mirapex l mg. I was afraid to try online (here from the pharmaceutical it because of the side effects but I have industry). Other List members can now had none. (woman with PD) compare their own bodily experiences against the announced side effects— One could speculate now that the effects they previously might not have woman, who took Azilect although she Science Studies 2/2009
was afraid of doing so, was suffering so hopelessness is expressed, it is generally much that her apprehension was fi nally countered by a solution proposed by superseded by hope (for symptom relief ). someone who has gone through a similar In fact, an important part of medication- experience, even if that ‘solution' is the taking consists of practices related to acceptance of decline and death:hope. Hope can explain part of what is commonly called the placebo effect; it Well I'm starting to think Dad IS at is also a powerful social force fi ghting end stage . he might not have been for medications in development; and it before—but the Haldol [antipsychotic can entail taking medications, including medication] catapulted him there now. those that imply a certain risk, to better He pretty much just sleeps all day. He seems to know we are there .and tries to say a few words here and there but Politics of Hope
we usually can't understand him… Please tell me whatever you ca—even The politics of hope, the motor of many if it's not pretty—so I can prepare virtual communities formed around myself and the family if this is the case! disease categories, are linked to practices (woman caregiver).
that both veil and reveal facts of life … You need to have a frank talk with (see Leibing and Tournay forthcoming). your father's doctor. Then you and In other words, hope can function as your mother need to weigh things a blindspot (e.g., not acknowledging realistically. It's hard to do what dangers), but can also prompt action that essentially feels like "giving up" on a less hopeful people do not need or do patient. We don't want to lose a loved not dare pursue. As Vincent Crapanzano one, but on the other hand, what a (2003; 1985) has argued, hope can also wonderful thing it is to be able to avoid lead to a standstill—when hoping means prolonged suffering for the patient… waiting—however, hope more often (woman caregiver). prompts action (Rose and Novas, 2005). Not all hopeful subjects have the social A second level of hope is medication or biological resources for effective tinkering, as already mentioned: mobilization; the ‘voices' here cited are recommendations regarding fi nding the successful ones, ones that can make the right dose, the right combination, a themselves heard/read. Many people future, a promising treatment or, as in with Parkinson's disease live alone or the following example, reducing the use are only ‘lurking' on the List. With this of Parkinson drugs with their severe side in mind, it is nevertheless instructive to effects and their limited applicability. look at the different levels on which these Great effort is put into postponing or active citizens are expressing and acting optimizing these drugs generally used as out their hopes.
last resorts. Exploring the possibility that A very fi rst level—hope-giving— so-called alternative medicines (cf. Bates happens when List members reach out 2000) may delay or obviate the use of for each other. While hope often involves common PD medications is an important a possible future, hope is also a pragmatic part of the discussions between List force in the present. The postings on members. List members actively share the Parkinson list show that when experiences and stories about substances, diet, exercise and other interventions. knowledge-gathering. Émile Durkheim's Some of them use alternative options description of religion, which he also that otherwise they might have feared conceives as a social pushing force, can trying or even never encountered if they be seen as analogical to hope: "La religion had a smaller network: n'est pas seulement un système d'idées, elle est avant tout un système de forces" We live in Europe and heard about a (1968: 131; emphasis added).7 man over here who was diagnosed First of all, hope is then movement in at least 10 years ago and who has time and space, a ‘social motor'. It is never taken meds and he works part of today's medical culture, a general everyday at a riding stable. We hear value system that suggests that the body he isn't doing too badly. The person can eventually be transformed through who told us about him says he eats technologies (Rose, 2005; Good et al., an awful lot of broad beans. I also 1990). Hope pushes medical technologies heard somewhere that the Pope ate towards a desired goal (e.g., availability), a lot of mangoes which are high in while there are a number of regulating a number of benefi cial nutrients so factors that act against hope: depending on thought I'd add those to X's diet. We the level of analysis one can look at doubt go for long walks every weekend and uncertainty, laws and regulations, and I can say that since adding the biology and availability. The stronger the mangoes he hasn't been dragging necessity for hope's fulfi llment—as in the his left foot. (woman caregiver) case of life-threatening diseases—the less power regulating forces represent. Have you ever heard of In these situations, hope might win x-medication? A right-wing wacko more easily over apprehension. Sarah relative is pushing it on me. I Franklin (1997) talks about ‘hope-looked it up and it is an anti-aging technologies' when analyzing assisted supplement. (man with PD) conception for American couples: "IVF must be understood in part as a ‘hope- Philosopher Ernst Bloch (2001) has technology'. Even when women know it argued that the utopian potential of hope, is most likely to fail,… the investment is the desire for change, is a human trait seen to be ‘worth it'. One answer to this rooted in the most diverse and sometimes apparent conundrum is that it is … the unspectacular everyday matters. Through occasion for hope, fantasy, romance, hope one gets a feeling for the future, heroism or other, non-‘rational', desires something that Bloch described as a state to be satisfi ed which it offers" (Franklin, of "not yet" —a state that is tightly linked 1997: 224; italics in the original). to actions in the present and nourished Hope and apprehension are not equally by past experiences (see also Miyazaki, distributed, but constantly interacting 2003; 2004). Hope, as a social force, is tied agents of change. Wainwright et al. to the sometimes pragmatic, sometimes (2006) see this relationship roughly as desperate, search for solutions. It is an a continuum. Their study looked at the important channeling force, helping translations implicit in UK stem cell people to fi lter and evaluate the research for diabetes "from bench to constant infl ux of information through bedside". They show that scientists in the a combination of utopic and pragmatic lab all had a rather pessimistic view of Science Studies 2/2009
stem cell research, while clinicians were that potential? We have a voice. Our much more optimistic and ‘enchanted' citizenship and our tax dollars give us with the possibilities of such a treatment a voice. My Representative here in X (see also Kitzinger and Williams, 2005). has heard my voice today when I called Nik Brown (2003: 16) observes a similar him to urge him to vote for House pattern: "The further we travel from Bill: HR 810 (the Stem Cell Research the source of knowledge production, Enhancement Act of 2005) which will the more colourful and fl amboyant be coming to a vote in the next few become the promissory properties of weeks (woman with PD). knowledge." Members of the Parkinson List are certainly closer to the ‘hopeful' In the meantime … I will keep calling end of such a continuum, although doubt and writing my legislators to urge and uncertainty from different sources them [those who are against stem constantly challenge and change that cell research] to move into the 21st position. Several messages dampen other century" (man with PD). members' optimism, especially when it comes to the hype about medications This is why it [the Bible] is relevant in development, although optimism to Parkinson's. Too many people generally reigned supreme in the case of who follow it or supposedly do, have stem cell research in particular.
already stymied research for 4 years. I know now there will be no progress …in the last months, there has been in my lifetime because those in power more info about PD in the fi nancial call the shots and they are defi nitely section then in the scientifi c one. Firms anti-science" (woman with PD).
announcing a ´new´ drug which was an old one in a new form, or many drugs in The South Korean scientist Hwang Woo phase 1 or 2. Some get lost on the way. Suk, who claimed that he had cloned All my work is cross-checked (because human cells, was a strong carrier of hope of my profession X) before going out for the people of the List, because his into the world—critical reviews are technique (had it been successful) could vital—though often unpleasant when a be used to generate healthy replacement fl aw is found; it does put the stops on tissue for tissue destroyed by PD: over-optimism (man with PD).
These are auspicious times! The fl oor For the members of the List, stem cell vote on HR810 scheduled for May 24th research is currently the most promising along with the recent announcement pathway for a cure. The members actively of a major breakthrough in stem cell lobbied US American politicians in the research by geneticist Hwang Woo- hopes that the Bush government would Suk of South Korea seems to be a good change the laws and allowing stem cell omen (woman with PD).
research to continue: I would be willing to go to jail if I could Embryonic stem cell research holds be cured of Parkinson's by going to potential for a cure. Are we to sit South Korea, but can't make the $1 by silently and wait for others to million fi ne (woman with PD).
decide if we are to pursue or discard When in December 2005 it turned out political issue. Parkinson patients, their that the cloning of stem cell lines by Woo family, and other actors who might gain Suk was a fraud, hope as a channelling something from this research push for force for truth also became increasingly fulfi llment of this possible intervention. explicit. As one man (with PD) wrote: The desire for fulfi llment is not only linked to the individual's hopes, but This article [about Dr. Hwang Woo also to the general stem cell rhetoric—a Suk] deals with the many factors that rhetoric of hope and utopia, establishing infl uence research results. There is an "economy of loss" for which stem another factor that deserves attention cells would compensate (Franklin, 2005). in our ongoing discussion, that being As Melinda Cooper (2006:3) argues, the hope of the people who are affl icted the discourses of stem cell research are and those that are caregivers including especially relevant for older people, since the professional staff (emphasis they provide a "more malleable concept added).
of biological limits", uncovering a "latent ‘surplus' life, even in the most worn-out And although, after the fraud, those of bodies." who defended stem cell research were Dangers posed by stem cell therapy, criticized by some, as in the following including side effects and the possibility example, the hope linked to stem cell that the stem cells grow into cancer research nevertheless continued. cells, are only rarely mentioned by List members. The communal maintenance For so long we have heard from those of strong hope in stem cell research who seem to have the loudest voices overshadows postings from members in this forum how great Korea was who are more fearful, for whom stem in this research and how far ahead of cell treatments are (still) disconnected the US they were and what a shame it from present concerns (see APDA, 2006; was. Now we see that it was a complete Braude et al., 2005). Harro van Lente fraud (woman with PD).
(1993) has called this "possibility spaces", where promising technologies create How come politicians tell worse lies in spaces of expectations that reign over worse causes all the time and not only apprehensions. The tension created from get away with it, but end up retiring on supporting possible future treatments fat pensions? At least Hwang was trying and its disbelieving, often ironic critics to help (woman with PD).
can be located between what Moreira and Palladino (2005) call a "regime of truth" There is nothing wrong in hoping (what is known) and a "regime of hope" research (in whatever fi eld) will (what might be); each regime aggregating succeed. In this case, the cheating different actors of support and talking and lying scientist will have to give up about different patient subjectivities. and retire from his job. I just wish the The Parkinson List's ongoing debate same would apply to lying politicians regarding stem cell research can be (woman caregiver; emphasis added).
explained by what Moreira and Palladino (2005: 73) call a "mutual parasitism" of The postings regarding stem cell research these two regimes: "Mutual parasitism on the List frame the research as a corresponds to a looping process through Science Studies 2/2009
which different knowledge practices experiences by different individuals, has … progressively generate their own a direct and physical effect back on the epistemic resources by translating each individual bodies. This kind of effect can others'" (see also Brown 2005 for an be described as biolearning. In this usage extensive overview of this tension). of ‘cyberbody,' the relationship with the In reading the Parkinson List postings, computer is not the focus per se, although a general impression emerges: medical computer networking assembles a critical technologies carrying hope are more mass of persons into a disease-based positively evaluated by individuals in community. The shaping of the collective need of a cure than by people who are cyberbody is infl uenced by experience less involved. It is nevertheless wrong (what does medication x do to my to imply that hoping people uncritically body?); expertise and authority, variously advocate any resource offered. One of attributed (cf. what a List member called the (many) mechanisms infl uencing "the loudest voices in this forum"), the decisions regarding optimal treatment use and abandonment of information; and, concomitantly, interacting with the politics of science (cf. Gottweis, 1998); the vector described here as hope, is the and the force of hope, described above. multiplicity of experience of medications While the cyberbody affects and within the group. This experience—a effects people, it does not homogenize communal cyberbody—would mean the experience. In fact, what here is called incorporation of a "mutual parasitism". a cyberbody is an extremely fragile momentary state of truth, because new knowledge can always alter the Cyberbodies are generally described former consensus. Common refrains as human-computer hybrids. Social in postings of List members are that PD scientists investigating cyberbodies may is heterogeneous and that the value of be "interested in the psychotopography ‘the meds' depends on each person's of the human/computer relationship, specifi c phenotype. Nevertheless, the the ways that humans think, feel and evaluation and conceptualization of experience their computers and interact symptoms and effects are negotiated in with them as subjects" (Lupton, 2002:478). threads of discussion through warnings, Scholars like Donna Haraway (1991) have disagreements and recommendations. addressed this relationship as one of the What is at stake in the collective cyber- computer-as-prosthesis or cyborg. In yet group is not only the way scientifi c/ other instances, a cyberbody denotes popular knowledge circulates and is the creation of a "post-human" body, a evaluated and integrated into everyday "wireless, inorganic entity, made of pure practices by its members (cf. Wyatt et bits of information" (Gaggioli et al., 2003: al., 2005), but also the shared experience 77; see Hayles, 1999). of medication-taking. The exchange of In this article, however, a cyberbody is experiential, embodied knowledge often not conceived as an individual human- leads to the question of normality: machine interaction or hybrid, but as a collective material and symbolic body that His medication during the fi rst few experiences bodily sensations created by years was primarily sinemat; however, momentary consensus of the Parkinson during the last 2 years or so, the doctor virtual community. This consensus, has prescribed entacapone (comptan) generated through a multitude of to reduce the down time. Since then, symptoms of aggressive behavior, I was treated with Sinemet along with paranoia and hallucinations have Mirapex, which caused devastating profoundly increased. Is this common? effects on me and my family. We were What are the alternative treatments? not informed and did not realize (woman caregiver) that this medication could cause a gambling behavior, which I was not This attention paid to the negative able to control. This was replaced by effects, as well as the positive effects, Tasmar and Comtan, which made of PD medications is salient because matters just as bad, if not worse. (man many medications used for this disease have numerous and serious side effects. The Parkinson Society Canada's website Furthermore, the medications' side (accessed April 2006), for example, effects may include the development of describes the most common side effects bodily sensations that otherwise might as dyskinesia, hallucinations, nausea, have been attributed to personality or anxiety and insomnia. List members questions of morality, as in this example:can read what these medications do to others on the List and compare those Someone from the X list had experiences with their own: developed the need to gamble, but also homosexual desires (without With my very fi rst dose of Sinemet in being inclined to this before); all this 2000 I was "ON", but it never helped while taking Requip. His wife wanted again even though I took it for a year CR to divorce him; they had to mortgage 4x daily 50/200. I think it was a blue pill. their house. (woman caregiver) I don't take it at all. Nothing happened when I quit. I tried regular Sinemet It would be too easy to conclude that and Stalevo after my DBS surgeries in hopeful practices veil, while practices 2003 and neither helped. Stalevo made related to embodied molecules reveal. me nauseated. I know they really help Both vectors interact constantly in a some people, but I think PD meds are mutual parasitism, following Moreira very problematic" (woman with PD).
and Palladino (2005)—a struggle that is grounded in the experiencing body. Didn't realize at fi rst, but the Mirapex The following quote from a Canadian was causing me to be sleepy all the caregiver shows the battle of fi nding time, and even more depressed. I the right treatment for a heterogeneous fi nally fi gured out that myself didn't disease like Parkinson's and the "calm like this drug, and the doc switched me after the storm" (the title of her article) over to Requip. This made a dramatic experienced through information difference for me (man with PD). gathering within a network: At the time of the research (2005-2006), …Because Parkinson's affects every neither the Canadian nor US American person differently, it was even hard Parkinson Society website listed the side to share experience with others who effect of pathological gambling (but see shared E's diagnosis. Some have Dodd et al., 2005). However, members of tremor, others don't. Some feel like the List alerted others to that side effect's their legs are encased in cement blocks, others still go golfi ng…. Every Science Studies 2/2009
new medication he tried carried its This article also extends the now own side-effects, some of which were common notion that the success of patient worse than the symptoms. We were groups is based on political activism in constantly bombarded with questions combination with knowledge gathering. and decisions… Our faith in God, the Here, the very fi rst instance of evaluation prayers and emotional support of our is located in the body, as the primary family, our church and our friends, and ground of experiencing and defi ning the contact with the Parkinson Foundation world. The use of the term 'embodied in Ontario formed the eye of the molecules' calls attention to the hitherto-tornado… I fi nally reached the right ignored material aspect of expertise. specialists and learned to ask the right As I have shown, lay and professional questions. I devoured any information expertise are often intermingled, and in available through books, magazines this e-mail list have lost their traditional and the Internet. I developed a team positions in a hierarchy. The experiential of health care workers and tried to evaluation of medications can be purely keep them informed as to what was individual, but this is the exception rather going on…Now we have learned to than the rule. The momentary certainty recognize the subtle and not so subtle of taking the right combination or dose of manifestations of this new intrusion the right drugs arrives through a process into our lives… E. is slowly learning of biolearning, of socially-situated, how to live in this new body… (Toews, embodied learning. This is comparable to learning to like the effect of marihuana: "The taste for such experience [of marihuana smoking] is a socially acquired one, not different in kind from acquired This article adds an often overlooked tastes for oysters or dry martinis", writes dimension to studies of Internet-based Becker (1991:53). patient groups. Distinct from studies in The concept of a cyberbody would be the sociology of expectation and related misleading if the cyberbody was assumed fi elds, (Brown, 2003; 2005; Brown and to be as fi xed in time and space. It would Michael, 2003) I have put hope, rather also be misleading if a collectivity was than expectations, at the center of my assumed to be a ‘gray mass' of people. analysis. This is because hope, as Vincent List members do not leave behind their Crapanzano (2004: 98; emphasis added) individualities when they identify with argues, is "a category of both experience other people on the List ("we Parkies"), and analysis." Or, following Hirokazu nor do they eschew their individualities Miyazaki (2004), hope refers to both a when experiencing together with other method and the politics of self-knowledge. members the effects of medications. Emphasizing the interconnectedness While collective learning alters individual of these two levels—a methodological perceptions and even concrete individual framework and the culturally situated effects of medications (sometimes called (‘learned') material effect of medications placebo), people maintain ‘what they on hopeful individual's bodies—is not are' and their multifacetedness. To take opposed to a sociology of expectations, a very general example, men and women but rather complementary to it. evaluate and experience the symptoms of PD differently (Solimeo, 2008); for instance, (gendered) role continuity Acknowledgements
shaped symptom experience. This kind
of difference creates permanent tensions
This article is dedicated to the members in every achieved consensus regarding of the Parkinson List. An earlier and much experiences of drug effects and side- shorter version of this paper appeared in the Newsletter of the Association of Standardization studies might be Anthropology and Gerontology (Leibing, strengthened through extending the ambit 2005). I am grateful for the seed money of their analysis to include emotions such received from the research group as hope, and effects based on biolearning CRÉGES (FQRSC) to develop this study. (the cyberbody). This is true even when I thank the participants of the Festschrift the objective of standardization studies for Margaret Lock meeting during the is the examination of authority. As CASCA conference in Toronto (May 8-12, Brown and Michael (2002, 259) write, 2007) with whom I had the opportunity there "are emerging conventions by to discuss the concept of ‘embodied which 'suffering'", or the demonstration molecules,' and the authors of the of emotion, "evokes 'authenticity' in forthcoming book on "Technologies of the effort to reach a decision (or assess Hope" (Leibing and Tournay, accepted) a risk) and that this 'authenticity' is who helped me refl ect on ‘hope.' I very replacing 'authority' as the means by much thank Jennifer Cuffe for correcting which a decision (or risk assessment) is my English and the two anonymous rhetorically warranted." If Brown and readers of this article for their stimulating Michael are correct, the experiencing (and suffering) bodies and cyberbodies of PD List members are part of this new authority that is based on ‘authenticity.' Daemmerich, quoted in the 1 Social scientists, writing about introduction to this article, claimed Internet communities, often split that the authority for standardization is into two camps: those who ascribe increasingly found in smaller and tighter empowering forces to this medium networks. This kind of authority is not (e.g., through destigmatization when immune to ‘hopeful facts'; particular communicating through the Internet facts become scientifi c reality in part for otherwise stigmatized groups), and because researchers, health professionals those who warn against the negative and policy makers rarely experience, effects of disembodied relationships, in a medication-in-body sense, the social isolation and "thinned selves" implications of scientifi c reality they (Willson, 2001) that result when the assert. In the case of Parkinson's Internet communications replace ‘real' disease, disasters related to pathological social relationships. gambling, and divorces due to unwanted 2 Ian Hacking elucidates how the vector, homosexuality, might have been avoided as a concept used in both mechanics if the patient's body had been taken and epidemiology, is a metaphor for more seriously; in other words, these life "a force acting in a direction. When diffi culties might have been averted if the there are several forces acting in standardization of such medications had different directions"—as is happening taken another road to success.
constantly on Internet lists—"the Science Studies 2/2009
resultant force is the product of the In the case of a French breast cancer different forces and their directions" group studied by Akrich and Méadel (2002), biomedical knowledge is not In an article recounting how challenged by the List members. The pharmaceutical concerns infl uence authors attribute this to the French self-help groups, Keller describes medical system, in which professionals several tactics of how these enterprises often determine the therapeutic infl uence group members to positively strategies without involving the evaluate drugs (2005). One reason for these enterprises' attention paid to 7 We discuss the aspect of hope and self-help groups is that self-help groups religion in the introduction to Leibing may recommend medications on their and Tournay (forthcoming), and show websites and other printed material, how different thinkers try to split off while pharmaceutical enterprises, in the utopian part of hope (sometimes many countries, cannot advertise their called optimism, as in the case of products directly to the consumer. Barack Obama), in order to reach a Examples of mechanisms of infl uence pure state of hope-without-doubt, just specifi c to self-help groups include: as in many religions hope means faith selective fi nancing (sometimes only (e.g., the coming of the Messiah), and key positions, but never groups doubt means lack of faith.
eschewing medications); fi nancing and directing publications; sponsoring online and in person group meetings; infi ltrating discussion forums with Akrich, M. & C. Méadel (2002) ‘Prendre fi ctive caregivers; and directing the ses médicaments/Prendre la parole: conversation towards a certain drug.
Les usages des médicaments par les 4 DBS consists of two interventions. In patients dans les listes de discussion the fi rst intervention, a neurostimulator électroniques', Sciences Sociales et is inserted into the brain. Surgery is Santé 20(1): 89-116.
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