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.
Re-active Data Activism:
Re-active data activities are movements that try to address the fact that once a digital trace is created, it usually leaves our immediate control and lands up in the hands of others. It is a commonly known fact that online activities are "sucked up as data, quantified and classified, making possible real-time tracking and monitoring" (Lyon, 2014: 4). In response, there are practices of resistance and obfuscation, resulting in the development and use of encryption, as well as free, open-source alternatives to centralized software and online services. Demonstrative of this is re-activist group Tactical Technology Collective. My favorite project of theirs is called The Glass Room, an 'Apple Genius Bar' inspired space, offering 'data-detoxes' or sessions to 'de-googlise' your life. Tactical Technology Collective host small workshops and develop easy to use online tools (such as MyShadow.org). They are thus one example of a collective reacting to a growing culture of passive participation by educating citizens as to how their every activity, personal experience, and behavior online is collected and used.
Research is also starting to be carried out in the field of data-activism, particularly by the research collective Datactive who are at the forefront of this topic in their investigations of massive data collection, social movements, data-activism, and civic tech networks. This collective purports that data-activism supports the emergence of unique epistemic cultures within civil society and subsumes the diverse manifestations of "critical" attitudes towards datafication under the rubric of "data-activism" (Milan and Van Der Velden, 2016: 2).