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Abstract

This article examines the experiences of people with disabilities, a traditionally marginalized group in US politics, with social media platforms during the 2016 presidential election. Using focus groups with participants with a wide range of disabilities, the significance of YouTube, Twitter, and Facebook is discussed. Results highlight ambivalent experiences with these platforms, which support some elements of political inclusion (more accessible and more relevant election information) but at the same time also exacerbate aspects of marginality (stress, anxiety, isolation). Four coping strategies devised by participants to address digital stress (self-censorship, unfollowing/unfriending social media contacts, signing off, and taking medication) are illustrated. The relationship between these contrasting findings, social media design and affordances, as well as potential strategies to eliminate an emerging trade-off between discussing politics online and preserving mental health and social connectedness for people with disabilities are discussed.

Keywords

disability elections social media mental health marginalization YouTube Twitter Facebook

Thirty years after the Americans with Disabilities Act (ADA) was passed, people with disabilities in the United States continue to be marginalized socially, economically, and politically. As disability theorists have noted, disability itself is rooted in the complex relationship between inaccessible environments—both physical and social—and physical and mental impairments (Shakespeare & Watson, 2010). This parallels one of the key tenets of marginality theory itself, making disability a condition that results from an unresolved clash between software (environmental barriers) and hardware (impaired bodies and minds) variables (Gatzweiler & Baumüller, 2014, p. 35). Given the growing centrality of social media as information sources and social interaction channels, it is important to ask whether they are helping to redress this imbalance for people with disabilities by eliminating exclusionary barriers or, instead, creating new barriers and marginalize them even further.

In light of this, this article explores the experiences of people with disabilities with social media platforms with a specific focus on elections. In doing so, this study advances our understanding of the changing interrelation between technology, citizenship, and disability. The key question is whether social media use, in the experience of people with disabilities, boosts essential political activities (accessing election-related information, discussing elections with others, and organizing to raise the visibility of disability issues) that foster a more inclusive form of citizenship (Lister, 2007a). These issues are explored through focus groups with US voters with a broad range of disabilities carried out during the 2016 presidential election.

Findings are twofold and highlight the current ambivalence of social media use for citizens with disabilities in conjunction with polarizing political environments. While participants felt that platforms such as Facebook and YouTube enabled them to become better informed voters, negative social media interactions, context collapse, and the high frequency of social media posts about the election also generated stress and anxiety that incentivized coping strategies likely to exacerbate isolation and detrimental to political inclusion for people with disabilities. The links between these contrasting findings, community dynamics, and platform affordances are discussed with a view to addressing the need for people with disabilities to choose between following and discussing election information on social media on one side, and safeguarding their psycho-social well-being on the other.

Disability, Citizenship, and Political Marginalization

Contemporary conceptualizations of citizenship emphasize political rights and equal access to democratic processes as antidotes to marginality. People who lack a fair chance to participate in democratic politics, citizenship theorists argue, risk becoming “second class citizens” (Tisdall & Kay, 2003). In particular, feminist citizenship scholars have focused on political rights and champion a model of “inclusive citizenship” based on accessible political processes, as well as on tightening the link between the “formal” politics of parties and elections with the “informal” politics of community organizing and everyday interactions (Lister, 2003).

Like other groups that have traditionally been under-represented in conventional institutions, people with disabilities tend to gravitate toward “informal” political spaces including community organizing and grassroots advocacy, which they find more flexible, open, and accessible than the “formal” politics of parties, campaigns, and elections (Prince, 2009). In particular, the United States has one of the most established and successful disability self-advocacy movements in the world (Vaughn-Switzer, 2003). At the same time, however, election participation among Americans with disabilities has lagged behind Americans without disabilities by a substantial margin in recent decades (Matsubayashi & Ueda, 2014), with turnout among the former up to 10% lower than among the latter (Schur & Kruse, 2014).

Lower levels of participation among people with disabilities are both a consequence of exclusionary barriers—illustrated in detail below—and also a source of further political marginalization. This applies to several democratic countries. For example, researchers in the United Kingdom (Barnes & Mercer, 2003; Equality and Human Rights Commission, 2011) and Canada (Prince, 2009) found that people with disabilities are severely under-represented among candidates because parties have tended to place stigma on disability, which they see as a campaign liability (Barnes & Mercer, 2003). If groups “do not participate in elections on a regular and visible basis, then needs central to their lives remain at the margins of our politics and policy making” (Prince, 2009, p. 134). Given that parties and politicians perceive people with disabilities as less engaged, this group is especially susceptible to regressive policy measures as the recent case of the UK disability welfare reform shows (Trevisan, 2016). More broadly, given that there are relatively few candidates and elected officials with disabilities, this group often lacks appropriate input and representation in policy decisions that affect them directly (Lister, 2007b).

Both domestic and global frameworks for disability inclusion such as the 2002 Help America Vote Act (HAVA) and the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD) have recognized the political marginalization of people with disabilities and sought to address it. Articles 21 and 29 of the CRPD outline the essential requirements for equal participation in elections. In addition to accessible voting systems, they include equal access to information; freedom of expression and opinion, including equal opportunities to discuss election issues with others and participate in public debates; and the ability to organize and raise the profile of disability issues. However, several barriers remain that prevent people with disabilities from fully exercising these fundamental rights on an equal footing with others. Barriers go beyond persisting issues with the accessibility of polling places and procedures (Schur & Kruse, 2014), and include the inaccessibility of much election-related information, as well as limited opportunities to engage in political discussions.

For example, there remain crucial accessibility gaps in some of the main sources of political news. Despite the work of digital accessibility advocates, TV viewers with vision or hearing problems continue to experience issues such as lack of audio description, poor quality captions, and lack of sign language interpretation (Ellis & Kent, 2015). Similarly, many election-related websites are at best partly accessible. A recent study showed that none of the websites of the 2020 Democratic primaries’ candidates was fully accessible at the time of the first televised debate in June 2019 (Miami Lighthouse for the Blind, 2019). This helps to explain why Americans with disabilities, who usually tend to be more interested in politics than those without disabilities (Igielnik, 2016), have been tuning out of traditional political news in recent years (Powell & Johnson, 2019), and makes studying their experience with emerging information sources—particularly social media—especially important.

Furthermore, people with disabilities tend to have smaller social circles, interact with others less frequently, and be more isolated than people without disabilities (Mithen et al., 2015). A total of 61% of people with disabilities spend most of their time alone, compared with 28% of non-disabled people, due to access barriers and stigma that prevents them from engaging with others outside their homes (Macdonald et al., 2018, p. 20). This restricts opportunities for talking about politics, both with other people with and without disabilities. Lower group involvement is linked to lower levels of political participation, particularly among older people with disabilities (Schur et al., 2005). In addition, lack of contact with others has been shown to fundamentally depress the disability vote (Kjellberg, 2002).

Although different barriers affect individuals in different ways depending on their circumstances, their combined effect is to curb participation across the entire disability community, creating the conditions for political marginalization and second-class citizenship outlined above. To create a more inclusive form of citizenship, theorists argue, any barriers that stifle “participatory parity” need to be removed (Faulks, 2000; Fraser, 2003). For people with disabilities, this means eliminating obstacles and building new opportunities to engage with election information, discussing politics, and organizing on an equal footing with others. Social media use has implications for all these processes and therefore it is important to explore the experience of people with disabilities with these platforms.

Disability, Social Media, and Participation

Social media use is at the center of a burgeoning literature on political participation. However, the significance of these platforms for people with disabilities’ participation in elections has yet to be explored. The relationship between disability and digital technologies is complex. In recent years, digital disability research has expanded through a “third level digital divide” approach that explores the outcomes of people’s interaction with new media from a social, economic, and personal perspective (Ragnedda, 2017). This is a pivotal shift because it introduces the experiences of disabled internet users and non-users to the research process. For example, this work has found that the use of digital platforms has supported substantial revitalization in disability rights activism. Digital disability scholars have argued that social media are suited to disability self-advocacy because people with disabilities “are already using them in their everyday life” (Ellis & Goggin, 2018, p. 358). For example, Facebook and crowd-sourced blogs have supported participatory protests against social policy reforms and controversial election results in the United Kingdom and the United States (Ellis et al., 2015; Trevisan, 2017, 2018). Similar examples exist also in Eastern Europe and Africa (Haller, 2017).

In light of this, it is important to examine the experiences of people with disabilities with social media in the more “formal” political context of elections. The most recent data show that, in the United States, over two thirds of people with disabilities aged 18–64 regularly use the internet (Anderson & Perrin, 2017), which makes this an area ripe for investigation. In particular, it is important to consider factors that may foster different experiences for people with disabilities compared with people without disabilities.

Approaches to political content and interaction on social networking sites are influenced by pre-existing attitudes that make people who are less interested in politics less likely to “speak out” online, particularly when they are concerned about potential conflict (Vraga et al., 2015). Therefore, it is interesting to note that people with disabilities have tended to be more interested in politics than people without disabilities (Powell & Johnson, 2019), including during the 2016 election (Igielnik, 2016). This makes it especially important to better understand the experiences of this group because high levels of political interest have been shown to deepen and extend engagement with political social media content (Bode et al., 2017) and make it less likely for people to self-censor on these platforms (Vraga et al., 2015).

In addition, internet users with disabilities are more likely than users without disabilities to engage in several activities including downloading videos, sharing their own content, and posting to blogs (Dobransky & Hargittai, 2016). This not only supports the expectation of disabled users as active users but also points toward specific platform affordances that may have special significance for people with disabilities. Users with disabilities’ interest in video content makes the investigation of video-sharing platforms particularly relevant. Furthermore, disabled users’ preference for expansive platforms such as blogs (Goggin & Noonan, 2006) makes this group’s experience with platforms that afford less space such as Twitter especially important to examine.

For these reasons, this article, which stems from a larger project on disability and digital political participation (Trevisan, 2019), explores the experiences of people with a range of disabilities with some of the main social media platforms during the 2016 US presidential election. By placing the experiences of disabled participants at the center of the analysis, this study aims to “attend to what disabled people say and think” (Shakespeare & Watson, 2010, p. 72), providing a fundamental perspective on whether these platforms help redesign democratic politics to be more inclusive for people with disabilities, or instead exacerbate their political marginality.

Method

The three essential dimensions of political inclusion discussed above (equal access to information, opportunities to discuss politics with others, and opportunities to organize and raise the profile of disability issues) provide a useful framework for understanding the experiences of people with disabilities with social media during elections, and fundamentally informed this study. In particular, the results from eight focus groups with 43 people with a broad range of physical, mental, and communication disabilities are discussed here.

Focus groups helped capture complex experiences and enabled the emergence of new themes throughout the study. With some notable exceptions (e.g., Alper, 2017), research on disability and the internet to date has adopted a quantitative approach (e.g., Dobransky & Hargittai, 2016; Macdonald & Clayton, 2013). These methods necessarily limit the input of people with disabilities to responding to relatively narrow questions. In contrast, focus groups provide the space that is necessary to articulate complex experiences, discuss them with others, and ask follow-up questions.

Given the inherent diversity of the disability community, both with regard to disability and other backgrounds and identities that intersect with it, focus groups enabled a diverse set of participants to compare their experiences. In addition, nearly half of disabled Americans have disabilities in two or more domains (physical, mental, and communication) that cannot be easily separated (Taylor, 2014, p. 10). Indeed, some barriers and experiences (e.g., stigma and discrimination) cut across the disability community. Others, however, are likely to be more relevant to certain parts of the community (e.g., captions’ accuracy or the lack of audio description in television news), which makes it important to point out specific experiences where possible. As the first study on this topic, this work took a broad approach and involved participants with a range of disabilities to identify key trends, while also providing useful pointers for further research on specific social media platforms or parts of the disability community.

A focus group guide was designed to ask participants to discuss their experience with social media in relation to the three dimensions of political inclusion outlined above, in addition to broader information-seeking behaviors and comparing social media with other platforms. Questions were structured in such a way not to prime participants about particular social media and let them bring up whichever ones they felt were most relevant. In their contributions, participants focused heavily on Facebook, Twitter, and YouTube, with others such as Instagram and Snapchat mentioned only a handful of times across the entire study. This reflects the status of these three platforms as particularly popular and politically relevant, enabling a useful comparison between trends in the disability community and those for the general population.

This initial study did not focus specifically on partisan elements of social media use and participants very rarely linked their experiences to party affiliation or ideology. This does not necessarily mean, however, that partisanship is unimportant to how people with disabilities experience politics on social media. A majority of participants in this study were Democrats and this should be factored in when interpreting results. Future work should explore differences between ideologically diverse groups more directly.

Given the focus on marginality, it is important to acknowledge one specific limitation of focus groups. Ensuring that focus groups are accessible and inclusive for people with communication and learning difficulties, as well as other disabilities associated with communication challenges such as autism can be challenging. As this study included several participants with communication disabilities and deaf and hard of hearing people, multiple strategies were employed to ensure they had opportunities to contribute on an equal footing with others.

Participants with communication or learning difficulties were included in smaller (e.g., four to five participants) focus groups, which tend to work better for them (Fraser & Fraser, 2001). One focus group was dedicated specifically to deaf participants and included two sign language interpreters who worked simultaneously to facilitate and capture interaction as naturally as possible. Furthermore, most participants were acquainted with each other, which has been shown to improve contributions from people with communication difficulties through knowledge of each other’s situation and mutual support (Barr et al., 2003). The focus group guide focused closely on lived experiences and avoided unnecessary abstract leaps, which can be difficult to articulate for people with communication difficulties and cognitive deficits. Finally, the moderator has extensive experience of qualitative research with people with disabilities and engaged in iterative checking to mitigate the challenges that some participants may encounter in reviewing transcripts (Nind, 2008, p. 12).

Participants and Data Analysis

Focus groups took place in late 2016 and early 2017 at Disabled People’s Organizations (DPOs) and Centers for Independent Living (CILs) in the Baltimore-Washington region.¹ These organizations publicized the study on their premises and circulated calls for volunteers on social media and email lists. The researchers were responsible for choosing participants from volunteer pools with the aid of a screening questionnaire distributed in accessible formats that focused on disability, interest in politics, internet and social media use. Forty-three participants took part in the study across eight focus groups of 4–10 people each. Participants received a shopping voucher as a token of appreciation. Owing both to the geographical area and the pool of volunteers, focus groups included more Democratic supporters. However, an effort was made to ensure that each group included at least one or more Republicans. On average, participants reported a fairly high level of interest in politics (7.1/10). Recruitment for new focus groups stopped once thematic saturation was reached.

Disability distribution among participants broadly mirrored US Census data for disability domains (Taylor, 2014). Over 40% indicated that they had multiple disabilities. More specifically, 29% had a mobility problem, 29% were blind or visually impaired, 20% were deaf or hard of hearing, 20% had mental health or psychiatric issues, 15% had degenerative conditions, 13% had learning disabilities, and 9% were autistic. The median participant age was 31 in a range from 21 to 78. Slightly more participants identified as female (56%) compared with male (40%). One participant identified as transgender and one as non-binary. In terms of race, 49% of participants identified as White, 42% as Black, 4.5% as Latinx, and 4.5% as mixed-race.

Nine in ten participants said they regularly used the internet with three quarters using at least one social media platform. Facebook was the most widely used platform (72%), followed by YouTube (51.2%), Twitter (35%), Instagram (30.2%), and Snapchat (18.6%). Many participants had experimented with social media platforms in the past and were able to discuss that experience too. Among these, a fifth said they did not use any social media at the time of the study. Their perspective transpired less prominently in focus group discussions. This is obviously a limitation of this study and future work should investigate the experiences of non-users more directly. In particular, all but one of the participants who did not use any social media at the time of the study (n = 8) were blind or visually impaired. This is consistent with observations by the author over several years investigating disability and new media that blind and low-vision people tend to be at a disadvantage compared with other people with disabilities, which makes understanding their perspective particularly important.

Focus groups were video-recorded, transcribed, and uploaded to NVivo 11 for thematic coding, which was carried out by a team of three researchers. Coding was conducted both inductively (open coding) to identify the topics and experiences of greatest importance to participants, as well as deductively from the focus group guide and moderator’s notes to check for themes of particular interest such as the three dimensions of political inclusion outlined above. Key codes quickly emerged around Facebook, Twitter, and YouTube, and additional codes followed about participants’ specific uses and experiences with each one of these platforms. Axial coding was then carried out to discover relationships between coded categories, particularly platforms and key dimensions of political inclusion. Any contradictory cases were reviewed collectively with the aid of field notes and video recordings until a consensus was reached.

Social Media Experiences

Overall, participants characterized the 2016 election as “addictive.” A consensus emerged in all but one of the groups that this resulted from a combination of controversial campaigning techniques—particularly by Donald Trump—with extremely frequent social media and mobile news notifications. Thus, participants put their smartphones squarely at the center of their election information diet. It is useful to consider how this was articulated for each of the three main platforms discussed by participants in detail.

YouTube

Participants consistently described YouTube as the social media platform they valued the most. Nearly half (n = 19) said that YouTube enabled them to access election information that was both more accessible and more relevant to them compared with that available through other media, particularly television. Two main functions of YouTube supported this positive assessment.

First, participants highlighted YouTube’s ability to support election content created by other members of the disability community to address specific information and accessibility needs on which other media fall short. For example, deaf participants mentioned news and current affairs programs created by deaf media professionals and distributed through YouTube including i-Deaf News, the Daily Moth, and D-PAN.tv News, which started streaming news in sign language during the 2016 election campaign. One participant explained,

a lot of deaf people used [. . . YouTube] news shows in ASL [American Sign Language] that talked about the election. Those were good [. . .], helping deaf people realize they can vote, and encouraging them to vote. (Rachel, 34)

More broadly, participants praised YouTube-based community-generated news services that focused on disability-related election issues, because they fulfilled a demand for information that is specific to the disability community, whose interests and concerns tend to be under-reported or completely ignored by traditional news outlets (Haller, 2010). That said, one notable exception that is important to point out here are blind and low-vision people, who experienced YouTube considerably differently from other participants due to its orientation toward visual content and because of the scarcity of audio descriptions. Instead, these participants highlighted online radio programs and podcasts as useful sources of election information.

A second function of YouTube that participants identified as particularly beneficial was the ability to adapt content originally distributed elsewhere—for example, by legacy media organizations or election campaigns—to make it more accessible to people with specific accessibility needs. This was particularly important in conjunction with the coverage of key election events and because the 2016 campaigns struggled to integrate multimedia content effectively on their disability-related web pages, as I discussed in detail elsewhere (Trevisan, 2019). In this context, YouTube was particularly useful for participants who have difficulties processing verbal information or language. For example, one participant pointed out:

YouTube is also really good for people who have learning disabilities or ADD, ADHD, whatever. ‘Cause you can stop and go back and watch the same part over and over and over again until you understand it. (Sandra, 26)

One implication of catching up with the debates on YouTube instead of watching them on live TV that should be pointed out here is that this prevented participants from participating in double-screening, which involves engaging in live discussion about televised events on social media platforms, particularly Twitter. This suggests that many people with disabilities face a choice between watching key election events in an accessible format and double-screening, which excludes them from an emergent political discussion practice.

Twitter

Participants ranked their experiences with Twitter at the other end of the spectrum compared with YouTube. Although over a third of participants were Twitter users, they also rated it poorly as a platform for people with disabilities to follow the election. This is counter-intuitive as other research highlighted efforts Twitter made recently to become more accessible, which have enabled it to support participatory disability advocacy campaigns (Parsloe & Holton, 2018) and “give voice” to specific sections of the disability community (Brunner et al., 2018).

Participants put their negative experiences with Twitter down to two main issues. First, they found the Twitter interface, amount of content, and pace of posting to be overwhelming. This issue was brought up in five different groups and cut across a diverse range of disabilities. For example, one deaf participant explained that he did not “like the format, the way that you read it. [. . .] On Twitter, it’s a little bit overwhelming, seeing so many posts back to back. I just don’t bother” (Ian, 34). Furthermore, a young autistic participant also said that “wading through all of that [content on Twitter] to get to the information that I personally care about can be tough” (Ronan, 24).

Second, participants also felt that the limited length of tweets made them unsuitable to communicating meaningfully about disability. Disability is complex, participants explained, and, even when tweets link to separate websites with more extensive information, “so many people don’t read the articles, [. . .] and [. . .] all it [Twitter] is, is headlines and headlines can be so deceptive” (Scott, 38). These comments provide an important contrast to previous research that showed that people with disabilities favor platforms that provide them with the space to share their opinions and experiences more exhaustively and effectively, particularly blogs (Goggin & Noonan, 2006).

These findings have specific relevance for initiatives that seek to mobilize people with disabilities within elections and beyond. One notable example in 2016 was #CripTheVote, which was the most prominent disability-related “hashtag campaign” launched during the election (Mann, 2018). #CripTheVote relied heavily on Twitter to reach a variety of publics. However, despite relatively high interest in politics across all focus groups, only a handful of participants said they were somewhat familiar with this campaign, with two of them saying that they had found out about it outside of Twitter, on the Huffington Post and YouTube, respectively. Furthermore, only one participant said they actively engaged with #CripTheVote on Twitter and explained that they did it only because it was required as part of their work for a disability organization.

Facebook

Participants demonstrated a more ambivalent relationship with Facebook. On one hand, Facebook was described as the most common source of election information. On the other hand, Facebook was criticized as a platform characterized by digital propaganda and negative interactions. Strikingly, six out of eight groups discussed Facebook as both the “most” and “least” valuable source of election information in roughly equal measure.

One specific benefit, participants said, was that Facebook enabled them to build a network of trusted “recommenders” who suggested disability-related election information that was under-reported or ignored by the main news media. One participant explained that she

added a lot of people in the disability community [to her Facebook network . . .] to see what they would post and how they felt about certain things that might be happening in the news and with the election. (Laura, 25)

Participants in three different groups also praised Facebook for highlighting geolocation-based information, crediting it for providing polling place details and candidate names on election day, increasing their likelihood to vote. Thus, participants who used Facebook liked that they could get relevant election information from a platform that was already integrated in their media diet. In particular, they compared Facebook favorably to Twitter. This is remarkable considering that, until just a few years ago, Facebook had significant accessibility issues (Ellis & Kent, 2011), but has since improved substantially.

While participants assessed Facebook positively as an information resource, their views of it as a platform for discussing the election were drastically different. Nearly half of participants said that they argued with others on Facebook over the election. These negative Facebook interactions occurred especially frequently with close friends and family members. For example, one participant explained that “I had no idea what my family’s views were politically, but now with Facebook [. . .] there are those family members who are very strongly conservative, and I just avoid the topic [of elections] altogether” (Rachel, 34). This had a heavy toll on participants across all the groups, who said their interactions about politics on Facebook and mental health status were negatively correlated. A third of participants specifically linked relapses of depression and anxiety with these tense discussions. Summarizing this experience, one participant with psychiatric problems described it as a constant state of “low level anxiety. And then when I think about certain things or hear something, then my—it just—that low level anxiety becomes dread” (Sylvia, 52).

The fact that so many participants framed their Facebook conversations about the election as traumatic raises important concerns. Indeed, the competitive election environment is naturally stressful and information overload is a fairly common issue for social media users (Schmitt et al., 2018). Nevertheless, these dynamics are likely to have particularly profound effects on people with disabilities because they are at much higher risk of social isolation and mental health problems than non-disabled people (Macdonald et al., 2018; Mithen et al., 2015). In light of this, it is useful to review the strategies that participants adopted to cope with digitally-induced stress and anxiety, and discuss their implications for citizenship.

Coping Strategies

Participants across all focus groups discussed how they tried to contain the fallout from stress and anxiety linked to negative social media interactions during the 2016 election. Four main “coping strategies” emerged from these conversations, all of which applied primarily to Facebook and brought on unwanted consequences. A first common coping strategy was self-censorship. Participants in six out of eight groups expressed consensus over the fact that it is best not to discuss politics on social media, singling out Facebook in particular. For example, one participant said that, although there were “some social issues that are very important to me, [. . .] I’ll try to stay away from things that are extra political in nature [on Facebook]” (Jason, 24). This approach runs contrary to expectations for people who are particularly interested in politics and value social media for political activity, who typically are likely to respond to negative feedback rather than self-censor (Gearhart & Zhang, 2015).

A second common coping strategy was unfollowing, un-friending, or blocking other users. Nearly three quarters of participants who used Facebook said they had unfollowed or unfriended a close friend or family member after they had negative interactions with them on Facebook about the election. For example, one participant from a self-described “blue-collar” community said that she

deleted a lot of people off Facebook. [because] It’s really hard to see people that I grew up with thinking a certain way and being pulled into these lies on Facebook, and then getting into arguments with them because they don’t believe that it’s not true. (Laura, 25)

Some took a “blanket” approach, unfriending between 20 and 75 Facebook contacts, which made their networks not only smaller but also more homogeneous. Others were more strategic and filtered out selected people, typically close friends and family members. This was consistent with a known pattern for which people experiencing digital stress are particularly likely to sever ties if they are in a close relationship with those involved (Weinstein et al., 2016).

A third coping strategy involved signing off social media platforms entirely for some of time. This method was discussed in half the groups. Importantly, participants recognized that, by withdrawing from Facebook, they likely missed out on some election updates. However, they also felt that this was a necessary trade-off. One participant who deactivated her account for two months highlighted the growing politicization of Facebook, which, she explained, had become “politics all day, every day. [. . .] it’s kind of one of those things: do you want to be a well-informed citizen, or do you want to be sane? I’m not sure” (Mary, 33).

Finally, the fourth strategy involved seeking advice from a doctor or, in extreme cases, taking medications without consulting a doctor. Although only two participants said they took medication unsupervised, it is worth noting that this seriously endangered their health. For example, one participant explained that he “almost ended up in the hospital [because he was] on extra anxiety medication. [. . .] I got sick by October [2016] and going into the beginning of November my blood pressure was in stroke range, all of that” (Mark, 32).

A majority of participants adopted multiple coping strategies simultaneously. All of these except self-censorship fall into a group that psychologists have termed “active coping,” which includes attempts to reduce digital stress by managing connections and resources (Lim & Choi, 2015). People with disabilities who unfriended or unfollowed others, signed off social media, or took extra medication showed a degree of agency by trying to take control of the situation. However, these choices ought to be weighed against the broader context of political marginalization described earlier. The emergence of a trade-off between following and discussing election news on social media on one side and preserving one’s mental health on the other is particularly problematic, as is discussed below.

Discussion and Conclusions

To fully understand the experiences of Americans with disabilities with social media platforms during elections, it is useful to situate these findings within the political marginalization context and inclusive citizenship framework illustrated at the start of this article. The picture that emerges from this analysis is a mixed one in which social media use currently serves to address some aspects of marginality for people with disabilities but at the same time risks exacerbating others.

Platform Affordances and Political Inclusion

The experiences discussed in focus groups highlighted that specific platform affordances have important implications for redressing barriers that prevent many people with disabilities from participating in elections. In particular, people with a range of disabilities have been able to capitalize on the participatory nature of YouTube and the networked structure of Facebook to create and disseminate supplementary and alternative content that addresses accessibility issues and the scarcity of disability-related information on traditional media. These affordances and the ability of these platforms to support a wide range of options help users with disabilities be better-informed voters. In contrast, information relayed through Twitter emerged as comparatively less meaningful or even confusing, which has additional implications for digital disability organizing.

YouTube was praised for providing enhanced opportunities for customization of information to users with disabilities. Although work to make YouTube fully accessible needs to continue, for example, by implementing a truly reliable automated captioning service, it emerged here as an innovative and versatile platform that supports community-generated news and delivers election information to people with disabilities. Using YouTube to promote disability-related election content can be regarded as an evolution of traditional “disability media” services, which have long sought to bring relevant information to people with disabilities through the most effective technologies available (Haller, 2010). That said, YouTube enables grassroots agents to expand the range of information available to people with disabilities in dramatic ways by adapting content originally posted elsewhere and, unlike more traditional disability media, distribution on YouTube goes beyond subscribers.

Similarly, Facebook emerged as a valuable source of election information for disabled users because of its networked structure that supports content distribution. Participants stressed opportunities to connect with others with similar life experiences and shared interests, which, they said, enabled them to access disability-related election resources that otherwise they would have missed. As was noted above, meeting people with similar interests and concerns, particularly other people with disabilities, can be difficult for many people with disabilities due to environmental, financial, and social barriers. CILs and DPOs can foster these connections but are only available to some people with disabilities. Facebook dramatically expands opportunities for connecting with other people with disabilities and similar life experiences. This emphasizes the particular importance of online “communities of interest” for people with disabilities, which form through the activation of latent ties between people with common interests and experiences who are separated by distance and other barriers (Haythornthwaite, 2005).

Given the enthusiasm among participants for such “communities of interest,” it is useful to consider their potential for mobilizing people with disabilities in elections. Like for access to information, focus groups suggested that these processes too are closely tied to platform affordances. Indeed, campaigns such as #CripTheVote have “expand[ed] the boundaries of hashtag social activism” (Mann, 2018, p. 615). However, whether this kind of initiatives can engage effectively average people with disabilities depends on the platforms used and the experiences of people with disabilities with those platforms. To this end, focus groups highlighted that elements of the Twitter “experience”—including its interface and pace of posting—make it well suited to generating visibility and “buzz” but less so to organizing a critical mass of citizens with disabilities. Thus, a multi-platform approach such as the one implemented by anti-austerity disability activists in the United Kingdom (Trevisan, 2016) might be more useful to engage this diverse group.

People With Disabilities and Context Collapse

Despite the value of these platforms as sources of accessible and relevant election information, social media use—particularly Facebook—was also associated with stress and anxiety for most participants. This triggered a set of coping strategies that effectively restricted opportunities for them to regularly and meaningfully interact with others. This has fundamental implications for the ability to participate in elections by discussing important issues and sharing one’s point of view.

Research on whether new media technologies enable minority groups to tap into support networks and share their experiences has shown that participation in social media groups about disabilities and chronic illnesses generates support and improves psychological well-being for people with disabilities (Rains, 2018). However, studies have also shown that intense social media use and “always on” lifestyles are associated with additional stress, anxiety, and depression, particularly among young people (Primack et al., 2016).

Indeed, digital stress and anxiety are exacerbated by issues and events that encourage frequent and compulsive social media use (Dhir et al., 2018), of which the 2016 election was a prime example. Furthermore, previous work also identified online political activity as an initiator of stress more generally (Hisam et al., 2017). This makes people with disabilities a particularly high-risk group for two reasons. First, they tend to be more interested in politics than people without disabilities, as was discussed above, which may encourage frequent and compulsive use. Second, the prevalence of mental health issues, which are strongly intersectional and constitutional of impairment, is particularly high in the disability community compared with the general population (Honey et al., 2011), increasing the risk of such problems relapsing or worsening within this group.

The strategies that participants employed to try to mitigate digital stress and anxiety also have important implications for marginality and political participation. The picture that emerged from this study is one in which attempts to manage social media interactions about politics can in fact alienate people with disabilities from important support networks, with consequences for political participation and social inclusion more broadly.

This dynamic played out especially frequently on Facebook. Alongside new “communities of interest,” Facebook also supports novel and often unwanted interactions with members of existing networks. This situation is far from unusual on Facebook, where the merging of new and existing networks typically requires users to navigate multiple contexts simultaneously, which generates dilemmas in users (Vitak, 2012). Indeed, most of the coping strategies highlighted here including self-censoring, unfriending or unfollowing others, and withdrawing from social media are fairly common among Facebook users (Liu et al., 2017). However, specific underlying circumstances generate more severe implications for people with disabilities.

In particular, people with disabilities are much more likely to be socially isolated than those without disabilities, with more than six in ten people with disabilities spending most of their time alone (Macdonald et al., 2018; Mithen et al., 2015). Therefore, their strategies to deal with context collapse and negative Facebook interactions not only reduce opportunities to discuss politics with others but also risk exacerbating already critical levels of isolation. Furthermore, as social capital and mental health tend to reinforce one another (Almedom, 2005), this creates a vicious circle for which severing social media ties can weaken mental health and vice-versa, with negative implications for this group’s marginalization.

More broadly, this corroborates the idea that context collapse “takes on meaning in relation to normative expectations and affordances within a given environment” (Davis & Jurgenson, 2014, p. 483). Digital coping strategies tend to weigh more negatively on people with disabilities compared with people without disabilities because the former are less likely to have sizable social networks to turn to when important relationships become strained. Similarly, this also raises an issue of freedom of expression given that informal networks are particularly important venues for people with disabilities to participate in political discussions.

Looking Ahead

Ambivalent experiences with social media use during elections present many people with disabilities with an impossible choice between keeping up with and discussing politics on one side, and prioritizing their psycho-social well-being on the other. This trade off curtails opportunities for people with disabilities to take rational steps toward reducing political marginalization (Gatzweiler & Baumüller, 2014, pp. 35–36). Lifting this constraint requires solutions that reduce stress and disincentivize coping strategies that exacerbate isolation, eliminating the forced choice between political social media interaction and mental well-being. Recommending detailed solutions to this problem is beyond the scope of this study. However, the role of grassroots interaction in the beneficial uses of social media identified here such as creating, sharing, and watching accessible election-related YouTube content, as well as the activation of latent ties on Facebook, suggests that developing truly effective solutions will necessitate the direct involvement of the disability community. Co-created solutions could take multiple forms including curated information streams, mobile applications, and training programs that help people manage unwanted social media interactions and beyond. In any case, it will be crucial for these design processes to be centered on the voices and experiences of people with disabilities.

Footnotes

Acknowledgements

The author would like to thank Lucia Cohen, Robert Rodriguez-Donoso, and Erin Spaniol for their help with data collection and analysis.

Declaration of Conflicting Interests

The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: The author is grateful to American University for supporting this research with a Faculty Research Support Grant.

ORCID iD

Filippo Trevisan

Notes

Author Biography

Filippo Trevisan (PhD, University of Glasgow) is an assistant professor in the School of Communication and Deputy Director of the Institute on Disability and Public Policy (IDPP) at American University in Washington, DC. He researches digital mobilizing and organizing, as well as the impact of new media technologies on political participation, civic engagement, and citizenship. He is the author of Disability Rights Advocacy Online: Voice, Empowerment and Global Connectivity (Routledge, 2016).

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“Do You Want to Be a Well-Informed Citizen,or Do You Want to Be Sane?” Social Media,Disability,Mental Health,and Political Marginality

Abstract

Keywords

Disability, Citizenship, and Political Marginalization

Disability, Social Media, and Participation

Method

Participants and Data Analysis

Social Media Experiences

YouTube

Twitter

Facebook

Coping Strategies

Discussion and Conclusions

Platform Affordances and Political Inclusion

People With Disabilities and Context Collapse

Looking Ahead

Footnotes

Acknowledgements

Declaration of Conflicting Interests

Funding

ORCID iD

Notes

Author Biography

References