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

Paper prepared for the Political Communication Section Pre-Conference

American Political Science Association Annual Meeting

GeorgeWashingtonUniversity

Washington, D.C.

September 2010

Sarah Oates

Professor of Political Communication

School of Social and Political Sciences

University of Glasgow

Email:

The author gratefully acknowledges the support of the British Academy for this work through the 2010 award of a research grant for the following project: International Potential, National Limits: Investigating the Role of the Russian Internet in Constraining the Social Agenda. The author would like to thank the following colleagues at the University of Glasgow for invaluable help in framing political discussions in terms of ‘personal’ social issues: Mo Hume, Charlotte Pearson, Filippo Trevisan, and Vikki Turbine.

Abstract

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.

Introduction

Searching for political activism on the Russian internet can seem a frustrating and difficult task with conventional research methods. For example, although political parties have websites, there is typically only a relatively weak connection between what they say on line and what they can effectively do in power or in parliament. Nor are there many robust political organizations in Russia that contribute to meaningful political dialogue or debate in a significant way. In essence, the Russian Federation appears to operate without an effective, relatively unified voice for the opposition. As a result, there are a multitude of small opposition groups and blogs, but none that seem to provide significant political capital. Many different political ideas and opinions are mooted in the active Russian blogosphere, but most seem to be broadcasting – rather than aggregating – opinions. This research project takes the approach of looking for political activity across a broader range of issues than party politics, election campaigns, or political protest groups. Rather, this research considers how individuals might seek political responses to everyday social concerns to Russians, such as issues involving health care, welfare, or education. One of the issues to reach relative prominence in Russia in early 2010 was societal attitude and treatment of children born with disabilities, a discussion sparked by a tabloid newspaper article suggesting that parents should be able to kill these children at birth. Far from party politics or social-welfare government web sites, it became clear that the online sphere had become a significant place for support, interest aggregation, and political action on the part of parents of children with genetic-linked disabilities. This paper uses two central case studies: Downside Up for support of families of children with Down Syndrome and two websites relating to mucopolysaccharidosis (MPS), a genetic disorder that causes systematic cell destruction, disability, and premature death. The groups differ in online terms of domestic web linkages, history, and format, yet across their web presence there is compelling evidence of politicization of the health issues. At the same time, some of the discussion about the issues suggests that the conceptualization of rights relating to disabled people is linked to post-Soviet notions of rights as protection of the vulnerable rather than the championing of humanity. However, a rising political voice – that of parents of vulnerable children – can be heard.

This study addresses existing theories about online politicization and presents a research approach that can be duplicated in a range of different national contexts. The research identifies the most significant websites relating to the issues through the use of the most popular search engine in Russia (Yandex.ru) and using Russian-language searches. Starting from the dominant informational website on the issues, the research then uses IssueCrawler to create web-link maps to find the online informational structure and flows relating to Down Syndrome and MPS. In particular, the web link analysis is useful to examining whether online issue networks are domestic (confined to Russian internet domain .ru or Runet for short) or more international in nature. However, knowing where most people are looking is only part of the story. The analysis also uses quantitative content analysis to define what sorts of information and communicative features are offered on and around the central websites relating to Down Syndrome and MPS, ranging from the policies of the groups to detailed information on how to petition to Ministry of Health for new treatment. While this is illuminating, it is also critical to consider the qualitative nature of the comments. How, if at all, are issues being discussed in a political way? Of particular interest is tracking comments that individuals make in forums, both those hosted by the websites and those linked to external websites. A sample of these comments are discussed thematically in an attempt to categorize the shape and direction of the discussion. Throughout this study, it is important to consider some factors from the Russian political context. As an earlier study suggested (Fossato et al. 2008), the role of prominent individual bloggers – what this paper terms online social entrepreneurs – appears to play an important part in online interest aggregation. In addition, Fossato et al. note the importance of catalyzing events, which are not always overtly political in nature but can become politicized through online action. Thus, the paper considers whether there is a visible ‘face’ of the cause that moves among internet platforms and appears prominently in the traditional media as well at times of crisis.

Theoretical Challenges and Literature Review

The study of online political action in post-Soviet states forces social scientists to consider anew the difficulties of importing political concepts and measurements from developed democracies into a very different political sphere. This is exacerbated by several facets of the study on the online political environment, which in many ways is dominated by ideas generated by internet activity in the United States. As studies of the U.S. internet acknowledge, it is difficult to separate the impact of the internet on specific democratic institutions, particularly elections, from broader trends in U.S. politics, journalism, and media audiences. While we can describe the changes and even experience them in our daily lives – most notably the explosion of support for Barack Obama that was reflected and amplified in the online sphere – developing robust hypotheses, research questions, and methodologies that tell us about the long-term effect of online politics is far more elusive. Indeed, does the internet fundamentally change the relationship between the elites and the masses in U.S. politics? While there is some compelling evidence of the online effect, notably in fund-raising and information sharing in U.S. elections, there is still a vigorous debate about whether this is a step-change in U.S. politics or a natural evolution of the existing political system with new communication tools.

In countries in which the political system, particularly elections and political parties, is less an expression of public will and more a reflection of elite power struggles, it is far more difficult to gather evidence of political engagement on line. In a range of non-free states, it is possible to monitor a wide range of discussion about politics on line. However, it is far more difficult to link political discussions to effective political action. For example, there are a range of political party websites in Russia, including a relatively popular and interactive site for the Communist Party of the Russian Federation with a lively internal forum for users (Oates, 2010). Yet, the presidential manipulation of the electoral and party systems means that voting does not carry the same democratic value in Russia as it does in Western countries such as the United States or the United Kingdom (Oates, 2006). Thus, the link between being a political party supporter or member does not translate into potential power in the same fashion. In addition, the ability to aggregate interests into traditional political institutions, ranging from action groups to unions, remains constrained in Russia by relatively repressive arrangements on public meetings and a dearth of common social spaces (Evans et al., 2005). Thus, while there have been studies of political party websites in Russia (March, 2006; Oates 2010, Semetko and Krasnoboka, 2003), it is difficult to link them to comparative findings about the role of political party websites as an important supplement to democratic communication (for example, see Norris, 2003). This is in contrast to considerable optimism about the ability of the internet to facilitate democratization in post-Soviet states (as discussed by Semetko and Krasnoboka): Margolis et al. (1999) suggest that citizens could use the internet to become more informed about their favored political parties, learn more about issues from party websites, or investigate political choices via the internet. At the same time, Bimber (1999) defined the value of the internet as offering new opportunities for citizens to learn about issues, learn about candidates, try to persuade others how to vote, or even to organize political action in its own right. In addition, parties could use the internet to identify and respond to public interests (Smith and Gray, 1999). The problem with applying these benefits of the internet in Russia is that the ability of parties to aggregate public interest has been steadily eroded by media manipulation at elections (Oates, 2006); a lack of trust in political parties; the presidential domination of national politics; as well as the co-optation of the electoral party system in favor of a party that supports the administration and now dominates the Duma. Thus, while Russian party websites have grown in terms of information provision and functionality (as defined by Gibson et al. 2003), a study of party or even candidate websites them does not yield the same insight into daily politics as it would in most Western countries. Nor does Russia have a lively or effective network of civil organizations such as political advocacy groups, unions, community associations, or interest groups that could be assessed and measured for their online interaction.

It is quite unsurprising that either political party web sites or those that are overtly political in nature attract relatively little attention. Analysis by Hindman (2009), as well as common observation, shows that most of the internet traffic is related to adult entertainment, including pornography. A classic mistake made by internet researchers, though, is the assumption that there are clearly separate domains for entertainment and politics. Owen (2006) challenged this by pointing out that young people often talk about politics or become political engaged through social contacts. Thus, while a study of traditional websites, forums, social-networking pages, Youtube, Twitter and other internet locations related to political parties, candidates and causes offers insight into some aspects of the intersection of the online and political spheres, it is missing much of the potentially important discussion, aggregation, and possible catalysts to political action in other parts of the online sphere. The challenge, however, is finding what is relevant in an enormous sea of online activity.

Russia Online

Finding relevant online content is particularly challenging in Russia for rather paradoxical reasons. While there are relatively few strong social groups that would have the parallel online presence, there is a lot to look at in Runet. Russian interaction and content on line is growing at a furious pace. According to the measurement by World Internet Stats, 42.8 percent of the Russian population was on line by June 2010 ( with an estimated 59.7 million users out of a population of 139.4 million. The organization reports an increase in usage of 1,826% since 2000 and that Russian internet users now make up 12.6 percent of those on line in Europe. These figures suggest that Russia’s growth in internet usage, which Cooper (2008) estimated to be relatively low two years ago given Russia’s economic development, is outstripping that of most other European nations. With the exception of nations that started from very low penetration in recent years (e.g. Belarus, Macedonia, Albania, and Bosnia-Herzegovina), Russia has the highest growth in internet usage in Europe (which had an average growth in internet penetration of 352 percent). In fact, Russia has the largest number of people on line in Europe with the exception of Germany, which edges out Russia with a reported 65.1 million people on line. Russia has now overtaken the United Kingdom, which had 51.4 million people on line as of June 2010. This paper will not reflect in depth on the reasons for the rapid growth in Russia vis-à-vis other European countries, but it is worth noting the both the proliferation of mobile phones with internet capability as well as the relative enthusiasm of Russian presidents Vladimir Putin and Dmitri Medvedev for the internet are probable drivers of this spectacular growth in use (Saunders, 2009).[1]

If so many Russians are on line, what are they doing there? The top ten internet sites in Russia (as measured by the internet-ranking company alexa.com) give some insight into the activity (see Table 1: Top 10 Websites in Russia). The list suggests that the Runet has developed robust ‘native’ sites, not least as a Russian search engine (Yandex) is much more popular than Google.ru or Google.com. Indeed, it would appear that Google.ru is little different in popularity from the internationalized Google.com search engine. Russians also prefer a domestic Email system, as well as interact in terms of social-networking and blogging on Russian platforms: V Kontakte (In Contact), Odnoklassniki (Classmates), and LiveJournal. In other words, while the concept of social-networking is universal, it is not always dominated by Western favorites such as Facebook in other countries. While it is unsurprising that search engines and an Email portal are very popular, the interesting question that remains is what Russians are saying and doing on sites such as V Kontakte, Odnoklassniki, and Live Journal?

(Table 1 about here.)

The activities of Russians online have been the subject of the extremely useful and timely Digital Icons project, which has published several studies of Runet (see for information and free downloads). Saunders makes the point that the content and role of the internet varies a great deal across post-Soviet countries, underlining the idea that it is important to understand the political role of the online sphere in national perspective (also see Oates, 2008). He highlights the theory of digital divide as codified by Norris (2001) with three critical dimensions: “This divide is not simply one of information ‘haves’ and ‘have-nots,’ but a multidimensional phenomenon that encompasses three distinct aspects: a global divide, a social divide and a democratic divide” (Saunders, p. 12, emphasis in original). Goroshko and Zhigalina (2009) are more optimistic that Runet can provide a place for political aggregation that is relatively free from government oversight. Certainly, there is evidence of its great popularity, which is particularly interesting given the relative lack of online commerce that has blanketed the West. Figures from Goroshko and Zhigalina suggest that 11 percent of the world’s blogs can be found on LiveJournal and quote Kurchakova (2006, p. 134) about the flexible nature of LiveJournal: