What’s in a Smile? Politicizing Disability through Selfies and Affect

Journal of Computer-Mediated Communication What’s in a Smile? Politicizing Disability through Selfies and Affect Aya Yadlin-Segal This article focuses on selfies and empowerment of individuals with physical disabilities. By exploring the #FSHDselfies campaign as a case study, I discuss the role affect plays in mediated advocacy for the representation of non-normative bodies, allowing disabled individuals to gather as a community and disrupt contemporary beauty standards. I draw on the case study to rearticulate the term “community of affect” (Climo, 2001) as the socio-political structure that promotes marginalized groups’ negotiation of collective identity and communal action geared towards cultural, social, and political change. This community can be seen as a sub-section or a specific discursive space categorized under “affective publics” (Papacharissi, 2014). I show in this context how participatory forms of representation open a space for negotiation and criticism of marginalized groups on the one hand, while oversimplifying the complex and diverse lives of minority groups on the other hand. Keywords: Disability, Online Advocacy, Selfies, Affect, facioscapulohumeral muscular dystrophy (FSHD), Burden of Representation. doi:10.1093/jcmc/zmy023 Introduction My hands were shaking and my stomach was doing somersaults. You can do it, the voice in my head said. I was absolutely terrified. When I hit “post” on my first ever selfie in honor of the FSH Society’s awareness and fundraising campaign, #FSHDselfies, my anxiety only heightened. Then my photo got a like. Then another (…) By dinnertime, there were hundreds. From elementary school friends to high school and college classmates, to former neighbors, the CEO of my former employer, and even friends of friends I have never met posted selfies and words of support for me. I definitely found out what it feels like to “go viral”! (Kelly Mahon on the #FSHDselfies campaign, FSH society newsletter, 2014) Corresponding author: Aya Yadlin-Segal; e-mail: Editorial Record: First manuscript received on May 25, 2018. Revisions received on August 27, 2018 and October 09, 2018. Accepted by Lee Humphreys on October 11, 2018. Final manuscript received on October 12, 2018. First published online on 5 December 2018. 36 Journal of Computer-Mediated Communication 24 (2019) 36–50 © The Author(s) 2018. Published by Oxford University Press on behalf of International Communication Association. All rights reserved. For permissions, please e-mail: The Department of Politics and Communication, Hadassah Academic College, 37 Hanevi’im St. Jerusalem, 9101001, Israel A. Yadlin-Segal What’s in a Smile? Politicizing Disability through Selfies and Affect Affect and participation online Affect theories are a set of critical approaches that explain the relational nature of bodies, emotions, environments, and “others” (Ahmed, 2004/2014). As a theoretical lens, affect occupies an important position in media studies, a locus for understanding media production, consumption, and texts. Affect can be understood as a cultural practice (Döveling, Harju, & Sommer, 2018), articulated both as representational form (e.g., in artistic objects, media texts, cultural artifacts, etc.; Jameson, 1991) and as a reactive process simultaneously informing and informed by emotionally saturated objects and subjects (Massumi, 1995). While affect might be theorized as a pre-personal and non-conscious process detached from emotions (Grossberg, 1992), I steer away from the dichotomy of mind and matter to embrace a cultural approach that theorizes affect as a socially constructed process saturated with ideology, one that is not prior to intentions, meanings, reasons, and beliefs, but rather, inseparable from them and the way they circulate in society (Ahmed, 2004/2014; Massumi, 1995). Journal of Computer-Mediated Communication 24 (2019) 36–50 37 Like others who took part in the #FSHDselfies campaign, Kelly goes through life with facioscapulohumeral muscular dystrophy (FSHD; also abbreviated as FSHMD or FSH), a largely unheard-of form of muscular dystrophy. The #FSHDselfies project was a social media campaign aimed at raising awareness and funds for FSHD. A philanthropist who requested anonymity pledged a US$1 donation to the FSH Society (a Massachusetts-based non-profit organization) for each selfie posted with the campaign hashtag, #FSHDselfies. The campaign, held between 7 July 2014 and 13 January 2015, set a goal of 5,000 selfies to assist ground-breaking research of this health condition and to promote public awareness. By means of an empirical case study, I examine the relationship between selfies and affect as reflected in a cultural production of disability images through the #FSHDselfies campaign. To understand this process, we first need to grasp the nature of this health condition. FSHD is a genetic disorder occurring in one in 8,333 people. It is identified by progressive loss of all skeletal muscle, noticeable in facial (Facio), back (Scapula), and upper arm (Humeral) muscles, hence FSH Disorder. The physical limitations patients of this rare condition experience are varied in nature and range from minimal loss of muscular strength that limits movement, to significant reduction of bodily abilities (FSH Society, 2018). The hashtag-selfie project stressed that among its other effects, FSHD damages facial muscles, rendering patients unable to smile. The campaign called them, alongside friends and family members, to share a smiling selfie via social media and use the #FSHDselfies tag. To explore this case study, I address selfies as a communicative medium that reveal the multiple dimensions of marginality experienced by individuals with physical disability. This view aligns with other studies addressing selfies as a medium that allows marginalized groups to reclaim control over body aesthetic (Tiidenberg, 2014). A selfie—“a photograph that one has taken of oneself, typically one taken with a smartphone or webcam and uploaded to a social media website” (Oxford dictionary online)—is an assemblage of subjectivities that displays a complex discussion of what different cultures value, dismiss, or contest (Hess, 2015; Senft & Baym, 2015). Selfies hold social, cultural, and political importance, acting as educational tools that raise care and consideration towards “others” (Warfield, 2018), helping users negate body-shaming practices and social taboos (Tiidenberg, 2014), and empowering marginalized groups in contexts such as race, class, and gender (Murray, 2015; Nemer & Freeman, 2015; Tiidenberg & Gómez Cruz, 2015). The scarcity of research on selfies and disability as a whole, and on selfies in the context of disability and affect in particular, points at the importance of this article and its contribution to an understudied cultural phenomenon. What’s in a Smile? Politicizing Disability through Selfies and Affect A. Yadlin-Segal Disability and media between the offline and the online Mainstream media represen (...truncated)