From Parent to Protestor on the Post-Soviet Internet: Locating and Evaluating Political Web Spaces for Families of Children with Genetic Disabilities in Russia

33 Pages Posted: 25 Aug 2010 Last revised: 11 Feb 2014

See all articles by Sarah Oates

Sarah Oates

Philip Merrill College of Journalism, University of Maryland


This paper analyses the role of potential democratization fostered by the internet in the post-Soviet context by studying how the treatment of children with genetic differences has become politicized via online activism in Russia. The paper considers three types of evidence relating to families of children with either Down Syndrome or mucopolysaccharidosis (MPS): 1) how online information and discussion frames personal health issues in politicized ways; 2) measurable links between online engagement and offline activity such as protests, legal challenges, provision of services, or demonstrations; and 3) the role of online ‘social entrepreneurs’ in creating internet capital that translates to offline action. The study employs online research tools including web link analysis to identify the location of significant online content and activity; quantitative analysis of information provision on line; and qualitative analysis of one-to-many informational content and many-to-many discourse among users. The research finds that the internet can serve as a key conduit for encouraging parents to think of seeking help in political, rather than personal, terms. In particular, there would appear to be a strong element of ‘parental politics,’ in that families are willing to challenge the Russian state if they feel that the government has failed in its duty to provide care for their children. Overall, this study provides compelling evidence that the internet does serve a democratizing role in Russia for these groups, finding an element of online aggregation that has been rather conspicuously absent in the more mainstream political organizations such as parties. On a broader level, the study implements a research methodology that can be used as a template for identifying and coding material relating to political action on line in a range of contexts. The study suggests that online political action can be better understood by looking for evidence of ‘political’ discussions across a range of platforms and issues outside of standard party politics – and watching how these nascent political networks can be activated at surprising speed by the combination of catalyzing events and online social entrepreneurs. The paper argues that the future of understanding the political role of the internet is in coming to know the online collective consciousness: The internet as a political force is not about particular websites, blog posts, social-networking groups, or specific bloggers per se, but about comprehending the way in which the internet fosters social consciousness that develops across, around, and among web platforms. This is particularly useful in understanding states such as Russia in which there are few effective democratic institutions or voices for the public in mainstream politics.

Keywords: Internet, Russia, Online Methods

Suggested Citation

Oates, Sarah, From Parent to Protestor on the Post-Soviet Internet: Locating and Evaluating Political Web Spaces for Families of Children with Genetic Disabilities in Russia. APSA 2010 Meeting Paper, Available at SSRN:

Sarah Oates (Contact Author)

Philip Merrill College of Journalism, University of Maryland ( email )

Knight Hall
College Park, MD 20742
United States
3014054510 (Phone)


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