“Hey there in the Night”: The Strategies, Dilemmas and Costs of a Personalized Digital Lobbying Campaign

Abstract

This chapter analyzes the strategies and dilemmas of a digital storytelling campaign evolving around the plights and struggle of families with severely ill children in need of constant care. The campaign, organized by parents fighting to stop government cuts in health and welfare benefits, started on social media. Stories and pictures of the children soon went viral, caught the headlines of the national established news media, and impacted the political agenda. This parent initiative epitomizes newer trends in advocacy and lobbying in which citizens organize in ad-hoc campaigns and networks made possible by social media, and where compelling storytelling can outmanoeuvre established political actors. Social media and autobiographic stories provide effective tools for grass-root movements, but also pose a range of dilemmas and ethical concerns related to individual exposure, vulnerability and privacy rights. The focus here is how non-professional activists balance, negotiate or sacrifice privacy protection and control with their messages in the name of winning a larger battle where high personal stakes are involved.

Whose stories are told and who is made responsible? Human-interest framing in health journalism in Norway, Spain, the U.K. and the U.S.

“…For these pressure groups it is essential to use a personal narrative to gain media attention, and adapting to the media’s formats, style and news values has become crucial. Studies of media content (Seale, 2002; Stroobant et al, 2018) and also of professional health advocacy groups (Figenschou and Thorbjørnsrud, 2020; Fredheim, 2021; Thorbjørnsrud and Ytreberg, 2020), suggest that lay people figuring as victims of disease tend to conform to commercial and media dramaturgical criteria for what makes a good story. Moreover, interests that conform with the dominant medical hierarchies (Album and Westin, 2008), representing well-funded patient interest groups will dominate over critique representing marginalized groups or critique of the knowledge regimes or treatment paradigms of a biomedical field (Briggs and Hallin, 2016).…”

“…Studies of the media strategies of organized health interest groups and patient movements indicate that media's appetite for compelling personal stories interacts with the need of these groups to engage the audience, raise awareness and impact political decisions (i.e. Figenschou and Thorbjørnsrud, 2020). Reflecting the impact of media bias, studies find that health advocacy groups adapt to the preferences of the media and forward representatives that are more in line with the media's preferences for youth, pretty faces and charismatic personalities rather than representative of the standard patient suffering from the affliction in focus (Thorbjørnsrud and Ytreberg, 2020).…”