« The culturally con-structed body would be the result of a diffuse and active structuring of the social field.»(Butler 1989)
Sensing technology is becoming widely spread and largely contributes to a new aesthetics and a different representation of body through its data. These body related digital measures aren’t individual endeavors; they take place on privately owned online social platforms, that are organizing new representations through the use of abstract data, mapping and charts. This project aims to define the contextual possibilities and the conditions for community based health platforms, that would benefit from grassroot feminist networks.
As the posthuman body historically maps into the virtual space, encompassing both networked participation and measurements, Marie Flanagan has formulated a critique of ‘Digibodies‘, expressing that they are constructed on a fixed, archaic social structure (Flanagan 2003). This paper will argue that in very much the same way, self quantification idealises participation in health procedures and reproduces inherent social constrictions. Abstract mapping of body data works towards an ideal representation by and through data, it aims to beset all external electronic data that we produce (Zeller 2013), this absolutist position strongly idealizes the potential of quantification tools and contributes to elude basic social issues.
Further more Marina Levina analyses that health 2.0 companies exploit feminist narratives to facilitate female participation in its services (Levina 2012) Indeed, empowerment of the patient can be traced to social revolution, concomitant to the rise of feminist discourse. The Boston Women’s Health Book Collective (1973) or Vancouver Women’s Health Collective(1971), brought the Civil Rights movement to the entire doctor-patient relationship. Mariana Valverde argues women have developed truth telling practices that help them to support eachother and assure knowledge transfert.(Valverde 2004) However, contrary to this original movement, participation and empowerment in the online health monitoring processes seem to strongly correlate to an already set agenda of both capitalist organisation and abstract scientific domination. Marina Levina explains that participation and online care most often implies “data donation” (Levina 2012).
Most importantly “data donation” disconnects data from community and context. Data becomes standard useable in information economy. One can consider this division process in its consequences: alienation and exploitation in the terms presented by Simon Fuchs analysis of new digital labour (Fuchs 2014); and we might ask if, by decomposing individual knowledge into sets of useable information, the person whom was once the repository of all intimacy becomes a transferable character only linked to a referenced set of data (Coons 2014). This quest for a holistic representation of body realm through digital measurement is inscribed in a medical history that has been tearing down personal knowledge and social support; Subrosa art collective has eagerly portrayed many of those losses in the feminine relation to technology and health. Through provocative performances, they have confronted us to the effective passation of knowledge to a sometime intrusive scientific community (expo emmagnics 2001) and/or loss of agency in some essential moments of life (smartmoms 2000)
On the one hand Victoria Pitts already emphasizes the benefits of intimate narratives happening on personnal blogs.(Pitts 2004); and she then identifies some social online tools such as e-mail feedback, mailing lists, chat and comments on personnal website; however in quantified self procedures privacy issues are at stake. Latania Sweeney also presents the value of keeping a personal health record bank (Sweeney, Yasnoff, Shortlife, 2013), but, in medical and in health data the easily retraceable nature of information obviates encryption as a complete solution to privacy protection. (Rosenblat 2014) (Sweeney 2000, 2013). Also and most interestingly artists have also adressed the problem raising a completely different voice on the subject: Salvatore Iaconesi1 choose to independently share information in a unique format; embeded in a personal narrative, asserting that health data still correlates to human endeavor and social facts, asserting and demonstrating the possible nature of personnal and intimate small scale online exchanges and narratives.
In this context it seems relevant to set grounds for an organisation of different usages of health plateforms by enquiring on alternative feminist and technology savy environments. Feminist Hackerspaces present themselves as safe spaces, and they already develop a discourse on care as an opposition to traditional hackerspaces that promote exploit and heroism (Adam 2003 Toupin 2014). Still following an intersectional take on feminism, I will use already experienced creative tools, workshops and gamification processes to tentatively unite feminist hackerspace members into formulating the needs of a feminist participative health 2.0 platform. While Cyberfeminism has long promoted the idea of virtual kinship Blair, Gajjala, and Tulley (2009), it might inform the communities forming around quantification issues; in this context, could existing women networks, including feminist hackerspaces be a fruitfull terrain to create safe and knowledgeable participative communities? And would such an endeavour allow to form the seeds (Keimformen) of alternative participative health networks.
1 Salvatore Iaconesi in his project “la cura” open sources data concerning detection and cure of his brain cancer looking for input and feedback, considering all forms cures, empathic material or spiritual http://opensourcecureforcancer.com/