DATA ACTIVISM
Thinking politically about big data from the perspective of users and citizens.
Data-activism is a new form of civic engagement and political action triggered through the awareness that data is not merely a commodity or a tool for surveillance but is also a metaphor for power (Milan & Velden,2016: 1). Fitting within the wide-ranging category of cyberactivism (McCaughey and Ayers, 2003), data-activism shares similarities with Statactivism, Hacktivism, and Information Politics. Data-activism takes many forms and ranges from resistance to engagement with massive data collection.
Pro-active Data Activism
Pro-active open data initiatives perceive data as offering endless knowledge, and possibilities for society, governments, and companies, and so take advantage of data traces for campaigning, scientific research, civic engagement, and advocacy. An example of such is La Cura, the creation of Italian artist and hacker Salvatore Iaconesi. La Cura was a reaction to his being diagnosed with brain cancer. Together with his partner Oriana Persico they 'hacked' his personal medical data, made it accessible online, and created La Cura as a" participatory performance aimed at redefining the word 'cure,' bringing it out of hospitals […] back into society" (Iaconesi, 2016). Over half a million people contributed to the project, and it still continues today. This project was pro-active in the sense that it re-distributed private data, and most importantly, it opened discussion and debate regarding the privatization of personal information.'The Glass Room, Looking Into Your Online Life' published on Nov 18, 2016 by Mozilla who in collaboration with Tactical Technology ran The Glass Room NYC: https://mzl.la/2gCAcLM