Navigating visibility and risk: disabled young women’s self-presentation practices on social media

ABSTRACT

Visibility is a requirement of neoliberal postfeminist girlhood and social media is often attributed with the capacity to provide disabled young women with visibility that they lack elsewhere. While some attention has been paid to the intersections of gender and disability through the self-presentations of disabled young women who are known as disabled content creators, such as bloggers and YouTubers, this article goes beyond this to examine how disabled young women represent themselves on social media as part of their everyday practices. Using a combination of discursive textual analysis of Twitter and Instagram accounts and semi-structured interviews with five disabled young women, I explore how affordances such as Twitter retweets play a key role in how disabled young women navigate their visibility online as part of their self-presentation practices. I argue that visibility is potentially risky and disabled young women’s social media use is shaped by concerns about harassment and questions about the ‘legitimacy’ of their disabled identities that operate at the intersections of gender, disability and race, stemming from their experiences of ‘systemic disbelief’. Finally, I situate these self-representation practices within the context of the COVID-19 pandemic.

KEYWORDS:

• Disability
• social media
• visibility
• young women

Introduction

Young women are widely acknowledged to be the primary users of social media and a growing body of work has explored how femininity and young womanhood are produced in online spaces (Shields-Dobson, 2015). At the same time, social media is attributed with the capacity to provide disabled young women with visibility that they mostly lack within traditional media by inviting disabled people to ‘perform their disabled identities in ways that are not possible elsewhere’ (Todd, 2018, p. 35). That is not to deny, the fact that these online spaces are structured by the same ableist social norms as offline, which can make social media difficult or impossible to use for some disabled people (Kent, 2020). Research on disabled people’s use of social media has tended to focus on issues such as education and activism (Sarkar et al, 2021). While some attention has been paid to the intersections of gender and disability through the self-presentations of disabled young women who are disabled content creators, such as bloggers and YouTubers (Christensen-Strynø & Bruun Eriksen, 2020; Hill, 2017; Todd, 2018), this article goes beyond this to examine how disabled young women represent themselves on social media as part of their quotidian, everyday practices. In doing so, it aims to shed light on the experience of being a disabled young woman in the contemporary moment. Disabled people often feel concerned and anxious about their visibility on social media, and use various strategies to manage their visibility and negotiate whether to conceal or disclose aspects of their disabled selves (Bitman, 2022; Hendry, 2020). In this article I explore how disabled young women navigate visibility and present themselves on social media. I examine how they negotiate their ‘networked privacy’ (Marwick & boyd, 2014) in order to manage their visibility, as well as how key affordances, such as Twitter’s retweets, enable them to be strategically visible online. I argue that these practices are shaped by concerns that being visible online is potentially risky and how this concern is indicative of the ‘systemic disbelief’ (Hale et al., 2021) they have experienced as disabled young women. Finally, I briefly consider how the COVID-19 pandemic has impacted their social media use and situate this within boarder pandemic discourses.

Disabled girls, social media and visibility

Young women’s use of social media is typically situated within a postfeminist cultural context (Shields-Dobson, 2015), which addresses girls as confident ‘can-do’ girls who are expected to ‘make their private selves and ‘authentic’ voices highly visible in public (Harris, 2004, p. 125).¹ Contemporary postfeminist culture demands that young women make themselves visible in ways that are managed and controlled (Banet-Weiser, 2018). Visibility is not only ‘the ability to be seen’ but also ‘symbolic or representational visibility, which is about the legitimacy of some phenomena, people, groups or objects to be noticed, perceived or articulated’ (Hendry, 2020; Tiidenberg, 2018, p. 13). As Carrie Sandahl (2003) notes, disabled people with visible impairments often experience ‘social invisibility’. Sandahl notes how ‘in disability contexts, what theorists describe as “visibility” might be better understood as the condition of “being apparent”. In other words, the concept of visibility itself relies on a metaphor that assumes able-bodiedness’ (Ibid: 54). On social media disabled young women are expected to ‘narrate their bodies, their experiences and their feelings in ways that render disability intelligible, palatable and sexy’ (Todd, 2018, p. 45). As I have argued elsewhere, young women who perform as disability content creators are expected to represent themselves in line with the neoliberal ideals of ‘can-do’ (Harris, 2004) girlhood by being motivated and motivational for non-disabled people by ensuring that their disability is visible – but not too visible – in ways that are palatable for non-disabled audiences and in keeping with the logics of social media (Hill, 2017). This also means that the most visible disabled content creators are white, and recent work has started to critique the overwhelming whiteness that characterizes social media cultures, such as body positivity content, that purport to seek to make all bodies visible and accepted (Johansson, 2021) As part of their ‘authentic’ self-presentation, disabled young women are expected to give honest insights into their lived experience of disability in ways that produce positive affects, such as helping to educate non-disabled people about disability, without being too challenging. However, those who do not carefully manage their visibility and conform to this narrow set of norms become vulnerable to (further) exclusion and harassment (Banet-Weiser, 2018; Hendry, 2020). As I shall go on to explore, the disabled young women who took part in this study were intensely aware of this and carefully managed their visibility and disability disclosure, particularly in relation to their disabled identities, because being too honest about their disability online was deemed too potentially risky.

Method

This study uses a qualitative mixed methods approach of textual analysis of social media posts and semi-structured interviews to explore how gender and disability intersect within young disabled women’s use of social media and their self-representation practices. Participants were recruited via an advert on my personal Twitter and Instagram accounts, which offered the opportunity to take part in research into how disabled young women present themselves on social media to those who were a) aged between 16 and 25; b) identified as a disabled girl or young women; c) live in the UK. I attempted to reach a wider audience by using relevant hashtags, such as #disability, #selfie and #DisabilityPrideMonth. This call resulted in five young women taking part. Four of the young women were white, and one was mixed raced.² While this is clearly a research limitation, it is in keeping with the logics of visibility noted earlier. I chose to advertise the study via my personal Twitter and Instagram accounts rather than via a dedicated research project account because this would enable me to reach more people and also enable participants to see how I present myself as a disabled woman online in an effort to reduce researcher-participant hierarchies in line with feminist approaches to research. This approach impacted recruitment in the sense that the young disabled women who took part were all graduates or postgraduates with a keen interest in research who worked in areas such as Higher Education or the not-for-profit sector, which is somewhat reflective of my own social media network as a disabled academic. The decision to analyse Twitter and Instagram posts in this study was dictated entirely by the young women, as these were the accounts that they permitted me to view as part of the research.; some allowed me to follow them on both platforms, while others provided just one platform. However, they discussed their use of other platforms such as Facebook and Reddit during the interviews. The social media posts used for analysis were all posted after the participants had consented to take part in the study and up until the end of April 2022. This means that the data includes 167 Tweets and 38 Instagram posts in total. Although I viewed some of the participants’ Instagram Stories as part of the research to enhance my understanding of their self-representation practices, I have not included them in this data due to the fact that they disappear within 24 hours. I conducted textual analysis of the social media posts, examining how visual images such as selfies were presented in relation to placement, facial expressions, lighting and filters as well as analysis of written Instagram captions and tweets. I also informed the participants that they were welcome to follow me in return, as discussed. Participants were given a £20 gift voucher as a token of appreciation.

This analysis of social media accounts was combined with semi-structured interviews in order to get a sense of how these practices are situated and understood by the participants as part of their lived experience. I carried out some preliminary social media analysis prior to each interview to get a sense of emerging themes and any areas that it would be useful to elaborate on during the interviews. In some cases, the young women identified and spoke about specific social media posts that they thought best exemplified the themes of gender and disability, and why they posted them. I then carried out further textual analysis of the social media posts following the interviews. The interviews took place in July-September 2021 and March 2022. Participants were invited to choose an interview method that was most accessible for them, which resulted in four interviews taking place over a video call platform, while one participant chose to answer questions via email. Interviews typically lasted for one hour and I used the transcripts provided by the online platforms – with some editing for clarity – for the analysis. The interviews were coded to capture recurring themes. While a study involving five participants is undoubtedly small, it does not claim to be representative. Rather, the combination of social media analysis and semi-structured interviews means that the data is rich and illuminating. Furthermore, this combination of social media ethnography (Pink et al., 2016) with semi-structured interviews positions this research in line with those who ‘argue the need to conceive of digital spaces as real spaces and built environments, in which the ‘disadvantaging of particular groups is not incidental but the logical product of designing our online spaces for certain publics at the exclusion of others’ and contributes to work that seeks to problematize the simplistic binaries of ‘online’ or ‘offline’ and ‘showcase the slippage of experience and affect between them’ (Mendes et al., 2019, p. 38). Indeed, it was clear throughout the study that certain affects ‘stick’ to the disabled young women, moving with them through online and offline spaces, and their experiences offline informed their activities online and vice-versa.

Ethics

Ethical approval for this study was granted by the Humanities and Social Sciences Ethics Committee at Newcastle University. Participants gave informed consent to be interviewed and to allow me to follow them on social media for the duration of the project. They were informed that I would only follow them on platforms that they gave me permission to view and gave me the usernames for, and they were able to delete or hide any posts that they did not want me to view or include in the research. Only posts that were posted on or after the date that the participants signed and returned the consent form have been included as part of the data, and they were informed that they had the right to withdraw at any time prior to publication. Participants have been given pseudonyms and anonymized in the research. This includes not giving very specific details about their impairments. While I do not mean to suggest that experiences of disability are universal – indeed, their experiences as young disabled women vary across life course and impairment – to give such specific information may compromise this anonymity and I have avoided this as far as possible. Focusing on impairment also risks ‘medicalizing’ disability and reinforcing a ‘hierarchy of impairment’ (Burch, 2021, p. 83).

The affects of shame and stigma

While neoliberal postfeminist culture insists that young women make themselves and their ‘authentic’ voices visible online, the young women who took part in this study were highly ambivalent about doing so, and evoked deliberate strategies to manage their privacy and visibility on social media. They were particularly aware of how disabled people are expected to share insights into disability and ‘narrate their bodies, their experiences and their feelings’ (Todd, 2018, p. 48) but were not comfortable doing this themselves, as Katy explains:

I can’t understand how people feel comfortable tweeting as much about their personal conditions as they do. I’m not saying it’s wrong because, obviously, that can be quite informative but, for me, I don’t. I wouldn’t feel comfortable with that.

Although the young women often felt unable to share details of their experiences of disability on social media, they highlighted the pedagogical benefits of such content, as following disability content creators had enabled them to learn more about their own illnesses and impairments as well as a number of others. While they appreciated the insights disabled content creators provide into the realities of living with disability or chronic illness by posting about being in pain, for example, they would not do this themselves as they felt that this would be ‘moaning’ and ‘not worth’ posting. This is indicative of how, in postfeminist culture, disabled girls are expected to function as ‘happiness objects’ whose value is located in their ability to orientate neoliberal citizens in the ‘right’ ways (Todd, 2018). They must present a ‘happy disabled identity’ to reassure others by ‘passing’ and hiding signs of pain and fatigue (Sheppard, 2020, p. 45). While more recent postfeminist culture has made space for more complicated ‘negative’ feelings, such as anxiety, insecurity and expressions of pain, these are not available to all young women and only available in certain ways (Dobson & Kanai, 2019). This is the case for the disabled young women in this research, who mostly did not feel able to post about difficult feelings related to pain and experiences of discrimination. This is further evident at the intersections of gender, disability and race. Jessica, who is mixed race, discussed how she felt excluded from and under-served by disability content on social media that is structured by the logics of neoliberal postfeminism which privilege whiteness. As she explains, social media accounts that are ‘about “my life with a disability” is a white people thing’, and such content fails to take white privilege into account and acknowledge the relationship between ableism and white supremacy.

The young women attributed this reluctance to make themselves visible and share their experiences of disability on social media to feelings of stigma, shame and internalized ableism. Goffman’s (1963) account of stigma has been highly influential to disability studies, particularly in regard to disability disclosure on social media (Furr et al., 2016). For Goffman stigma emerges through the relations between people, so impairment itself is ‘not inherently stigmatizing but becomes so in interaction, when meanings are ascribed to bodies deemed to be outside the social norm’ (McLaughlin, 2017, p. 244). As well as relations between people, stigma also describes a ‘relation of self to self’ as people learn to ‘judge themselves against the incorporated norms’ and come to understand how they might be viewed and judged by others (Tyler, 2018, p. 750). As Katy explains, ‘There are so many elements of being disabled that you feel ashamed about and it’s not because of how you feel about your disability, it’s how other people make you feel about your disability’. Similarly, Catherine described how being ‘constantly made to feel as if I am “too much” emotionally … makes me hesitant to be open about myself as I feel that I might be judged as oversharing’. Catherine’s feelings highlight how demands for authenticity on social media are structured by ableist ideals that rely on a neurotypical understanding of gendered social norms – which Catherine says she does ‘not understand the point of’ – and how these social norms are used to construct ‘appropriate’ femininity that is not ‘too much’.³ Jessica discussed how she experiences stigma as a mixed race disabled young woman, as ‘by being openly and obviously disabled I’m giving the world something else to use against me’. Although Jessica does identify as disabled on social media, this has not always been easy, As Bailey and Mobley (2019) argue, for Black people, ‘stigma further complicates acknowledging disability, as it places an already precarious self at further risk of marginalization and vulnerability to state and medical violence, incarceration, and economic exploitation’ (p. 25). They use the myth of the ‘strong Black woman’ to highlight how by suggesting that Black women are ‘uniquely strong’, Black women are ‘disallowed disability and their survival is depoliticized’ (Ibid: 21). While Black people’s disavowal of disability is a common narrative, Black disability studies scholars such as Sami Schalk (2022) have noted how this is only a partial narrative that fails to take into account the ways in which whiteness and racism have excluded Black disabled people from the disability rights movement, as well as the field of disability studies. Moreover, Black disabled people’s participation is often not acknowledged, as it may look different from more mainstream disability politics. Jessica’s self-presentation and participation on social media is therefore complicated by her mixed race identity, as she feels that she ‘can’t fit in with either narrative’; that is, the narrative of disavowal that is commonly attributed to Black disabled people, as well as dominant understandings of disability that are underpinned by white supremacy, leaving her feeling like she has ‘no place to sit’.

Feelings of shame and stigma meant the young women employed various strategies to manage their visibility. They all spoke of various social media accounts across a number of platforms and were understandably selective about which accounts they allowed me to access as part of this research. The management of audience dynamics is paramount for these disabled young women, and they drew distinctions between people they know online or offline, disabled or non-disabled, and generational distinctions, such as older family members. They felt unable to talk openly about disability on platforms where they are followed mostly by people they know ‘in real life’, such as family members because they may be concerned, surprised or may not understand how the young women feel. This is exemplified by Catherine who says, ‘On Instagram I am followed by more people who I know in real life, so I share less about my internal state’. Catherine’s Instagram account is indicative of this, as it solely documents her hobbies and promotes a consistent autumnal aesthetic with complementary colours and designs. Although she does upload selfies, the captions are brief and do not reveal her thoughts and feelings. She also does not explicitly talk about being disabled. As Furr et al. (2016) note, young disabled people – under 35 years old – are more likely to adopt a ‘secure’ approach to disability disclosure online, and this is reinforced by the young women in this study, who were all in their early twenties at the time of taking part. More broadly, this careful management of privacy and visibility is in keeping with how, as Marwick and boyd (2014) argue, contrary to popular media discourses young people care deeply about their privacy online and employ a range of strategies to ensure that their privacy is maintained. This ‘networked privacy’, they argue, ‘invokes the constellation of audience dynamics, social norms, and technical functionality that affect the processes of information disclosure, concealment, obscurity, and interpretation within a networked public’ (p. 1026).

When the young women discuss their experiences of being disabled online, they prefer to do so either anonymously, such as Katy, who told me about her anonymous Reddit account where she discusses disability topics, or privately, such as Catherine, who has a separate private Facebook account with no ‘friends’ added, which she uses to participate in disability groups. Ali’s Instagram account is dedicated to their performances as a political drag queen, and as such does not contain any real name identification. Ali is also ‘very selective’ about who they allow to follow this account, where they discuss disability, mental health and other political issues. Ali attributes this strict audience management to wanting to ‘be loud’ without ‘people I know in real life interjecting’. Here, being ‘loud’ is associated with expressing political opinions. By contrast, Ali only appears out of drag on Instagram Stories. Unlike posts on Instagram’s main grid, Instagram Stories are fleeting, as they are only available to be viewed for twenty-four hours unless saved by the user. In this way, Instagram Stories function similarly to Snapchat, which has been discussed in relation to its temporality and duration as offering, among other things, privacy and a feeling of secrecy (Handyside & Ringrose, 2017). These affordances enable Ali to control their visibility and privacy, while also suggesting that they are less comfortable talking about their experiences when not in drag. Ali explained in our interview that they were attempting to post more Stories when not in drag and talk more honestly and openly about the realities of living with disability but that this was difficult to do due to feeling obliged to present a positive disposition in keeping with the kinds of self-presentation practices that commonly appear on social media from disabled content creators that perpetuate broader neoliberal discourses, as discussed earlier. It is clear, then, that the young women take great care to manage their ‘networked privacy’ (Marwick &boyd, 2014) and visibility. While their impairments and illnesses varied, their accounts of their experiences of disability were similar in that their sense of their disabled identity has changed over time, and they used to be able to ‘pass’ as non-disabled. This does not simply mean that their impairments have worsened or become more visible; rather, their understanding of disability and willingness to identify as disabled has changed. They are therefore reluctant to discuss their experiences of disability on social media where they are followed by family members and old school friends who knew them offline during a period in their lives when they were more able to ‘pass’ as non-disabled.⁴ Engaging in ‘content management’ (Marwick & boyd, 2014) by refraining from talking about disability on these accounts is preferable to managing their audiences because social norms and expectations make it difficult to refuse follow requests or ‘block’ ‘real life’ friends and family. As Bitman (2022) notes, disabled people’s online self-presentations are often judged and evaluated by non-disabled people, who consider offline ‘passing’ as more ‘authentic’. As I shall discuss later on, the idea that offline acquaintances may react negatively or question their disabled identity was a key concern for the young women in this study, and it emerged specifically at the intersections of gender and disability.

Retweets and hashtags as self-representation practices

Twitter plays an important role in how the disabled young women in this study present themselves online. Four out of the five young women offered their Twitter accounts to be included in the study, as they considered Twitter to be one of the social media platforms that they used the most, particularly in regards to discussing disability. Previous research has highlighted how Twitter usefully facilitates disability activism through the use of hashtags and provides a space for building community and acquiring and sharing information with other disabled people as part of a ‘disability public sphere’ (Sarkar et al., 2021; Sweet et al., 2020). The hashtag – one of Twitter’s key affordances – is noted for being a vehicle for making social phenomena visible’ (McCosker & Gerrard, 2021, p. 1902) and providing ‘ambient affiliations’ (Zappavigna, 2011) by connecting users who would not otherwise be connected. Indeed, the young women all spoke of choosing to use Twitter to participate in disability hashtags, which enable them to feel connected to others with the same impairments and illnesses, to learn from others and to share experiences when non-disabled friends may not understand. Here, I go beyond this focus on community building and information gathering to argue that, as Twitter’s key affordances, hashtags and, importantly, retweets are ‘tool(s) of visibility’ (McCosker & Gerrard, 2021) that play a key role in these disabled young women’s self-representation practices.⁵ In observing the young women’s Twitter accounts I noticed that they frequently retweeted posts but rarely created their own tweets. Katy and Nia reflected on this during our interview, both saying that they mostly retweet (as opposed to quote tweeting) tweets by others, rather than creating their own tweets, primarily to avoid negative responses and harassment from other Twitter users. These retweets were mostly about aspects and experiences of disability, as well as other social justice issues. I argue that these retweets are an important part of the young women’s self-representation practices as, when examined as a whole, they give a clear insight into their experiences of disability and sense of identity. The young women retweet ideas and experiences that they can relate to and highlight issues that they think need to be tackled. In doing so, they create ways ‘to be seen’ through being affiliated with others while managing their visibility. This careful management of visibility is furthered by the fact that when they create their own tweets – as opposed to using the retweet function – they tend to avoid using first person ‘I’. This creates a distancing effect, drawing attention to their experiences and feelings but in a way that is not individualistic and instead situates their experiences within wider political structures. During our interview, Nia explained that she mostly retweets because she is ‘scared of putting [herself] out there’ – a sentiment shared by the other young women in the study – and in the next section, I explore how the young women perceive online visibility as risky and how these concerns are located at the intersections of gender and disability.

Experiences and perceptions of the risks of visibility

The idea that social media visibility is risky permeated the young women’s accounts of their use of social media and these feelings clearly shape their online self-representation practices. Much of the hesitancy that the young women said they felt about posting details about themselves and their experience of disability online was framed as a concern about potential reactions they might get. As Ali says, ‘you don’t know how people are going to react’, while Nia noted how she could ‘feel them thinking, even though they wouldn’t say it to me. Probably I fear them thinking’. Catherine similarly explains that ‘I imagine that if people were anonymous on platforms like Instagram, I would have acquaintances react negatively to my mentioning that I’m autistic’ (Emphasis added). In highlighting how potential reactions are imagined or anticipated, I am not suggesting that these disabled young women do not experience harassment as a result of stigma. Indeed, they shared instances of discrimination and harassment or of not being taken seriously they have experienced during our interview. They have also witnessed other disabled women being harassed online. Rather, I want to draw attention to how the affects of stigma ‘stick’ to disabled young women, travelling with them on- and offline. In her study of the affects of ‘everyday hate’ on disabled people, Leah Burch demonstrates the ways in which disabled people are excluded from physical spaces and how these exclusions also ‘occur beyond the body’ and have deep affective impacts (2021, p. 74). She notes how:

What ‘sticks’ comes to shape how we anticipate social encounters within particular spaces and therefore, how we do, or do not, situate ourselves within them. Whether this fear is based upon prior experience or the stories of others, it demonstrates a clear impression whereby bodies come to be felt as out-of-place

(Ibid: 84)

While Burch’s examples of ‘everyday spaces’ are physical (offline) spaces, it is clear that ‘sticky encounters’ (Ahmed, 2014) that occur offline as well as online shape how the disabled young women navigate and manage their visibility online, and in particular how they make use of the specific platform’s affordances to do so, such as by representing themselves through retweets.

All of the young women spoke about feeling reluctant to make their disabled selves visible on social media because of concerns that people, particularly people they also know offline, will question whether they are ‘really disabled’. It is through this concern about the legitimacy of their disabled identities that the specific intersections of gender, race and disability – and youth, to an extent – are most apparent. They all spoke about struggling to get diagnoses for their symptoms and to be taken seriously by the medical establishment. Jessica recalled being told ‘it’s all in your head’, Katy, Ali and Nia all spoke in various ways about how doctors were sceptical or dismissive about their chronic illnesses, while Catherine described how she had spent a long time ‘heavily masking’ her autism, which may lead people to ‘doubt’ whether she is ‘really autistic’, highlighting how autistic women are often misdiagnosed more often than men due to their ability to ‘mask’ and common perceptions about what autism ‘should’ look like (Bitman, 2022). Additionally, women, more so than men, are more likely to experience chronic illness. As Maya Dusenbery (2018) argues, women experience the interconnected system problem of the ‘knowledge gap’ – where medical research has tended to focus on men’s bodies, and conditions that affect women have typically been viewed as less worthy of research – and the ‘trust gap’, as women’s accounts of their symptoms are frequently not believed and dismissed. It is little wonder, then, that this ‘systemic disbelief’ (Hale et al., 2021) that the young women have experienced has led to concerns that their experiences will be doubted or questioned if they post about their experiences of disability on social media. Ali expressed a specific concern that posting about being disabled online would lead to being labelled an ‘illness faker’ in forums such as ‘r/illnessfakers’ on Reddit. Reddit is a notably hostile platform for disabled people, as disability is frequently disavowed by commenters who reinforce broader media discourses around disabled people as ‘benefit scroungers’ who take from the ‘hard-working taxpayer’ (Burch, 2018). The r/illnessfakers subreddit has over 27,000 members dedicated to monitoring ‘chronic illness influencers’ – the majority of whom are young women and non-binary people – to find ‘inconsistencies’ within their social media posts that can then be used to show that these influencers ‘exaggerate or fake their illness for profit’ (Hamilton, 2020). Here, misogyny and ableism intersect, highlighting the particular forms of surveillance and harassment that disabled young women experience online. While attention has been paid to women’s experiences of online harassment (Duffy & Hund, 2019; Vickery & Everbach, 2018), little attention has been paid to the intersectional experiences of disabled women and how they experience harassment online. This would benefit from further research, as it is clearly a significant concern for disabled young women that impacts how they present themselves online. This example of ‘r/illness fakers’ also further reinforces how disabled young women’s online self-presentation practices are burdened by interconnected cultural expectations, whereby visible physical impairments are culturally synonymous with disability, so those who are able to ‘pass’ as non-disabled are more likely to be considered ‘fraudsters’ or ‘fakers’, as passing challenges the ‘brittle binary of disabled/non-disabled, which is relied upon as a means of measuring and mapping deservedness in an advanced capitalist bureaucracy’ (Cooper, 2016, pp. 135–136). Meanwhile, gendered social media discourses are underpinned by what Duffy and Hund refer to as ‘the social media axiom of consistency’ (2019, p. 4991) that requires women’s ‘authentic’ self-presentation to be consistent between their online and offline personae. Therefore, disabled young women whose impairments are ‘invisible’ and/or fluctuating, and who are able to ‘pass’ are seemingly most at risk from being branded inauthentic ‘fakers’. This also reinforces the importance of the use of retweets as part of the disabled young women’s self-representation practices, as these do not require embodied visibility in the same way as more visual-centric platforms such as Instagram.

The COVID-19 pandemic and shifting social media use

In this final section I briefly want to explore the impact that the COVID-19 pandemic has had on the young women’s use of social media. They noted that their use of social media increased at the start of the pandemic, as they used it to keep up with news and communicate with friends. They also appreciated the accessibility of online events that they would not normally have been able to attend before the pandemic. However, they soon felt the need to reduce their use of social media and avoid ‘mindless scrolling’. This, I argue, is partly a consequence of increased hostility towards disabled people whose lives were further devalued during the pandemic. The UK government’s response to the pandemic laid bare the extent to which disabled lives are devalued through the continued reinforcement of certain pandemic discourses, which were perpetuated by government ministers, the media, and individuals. These pandemic discourses sought to uphold ideals of normalcy by reassuring ‘healthy’ people that the majority of people who died from COVID-19 had ‘underlying health conditions’ and this was presented as a tragic but inevitable consequence of the pandemic (Hill, 2023; Ryan, 2021). This hostility towards disabled people was clearly felt by the young women, particularly on social media. As Nia says, ‘There’s something especially difficult about seeing that. You can’t even deny it anymore. There’s no possible way that you can pretend that that’s not really how people feel, it’s right there’. The impact that this had on most of the young women’s willingness to be visible on social media was most notably articulated by Catherine:

I deleted my public Facebook account because I began to take a greater interest in privacy, as I became a more isolated – and more paranoid – person as a result of the pandemic. I also made most of my social media private, as the world feels like a more terrifying place after living my social life primarily online in the last year and being exposed to more and more of the worst of people.

In contrast, the pandemic made Ali and Jessica somewhat more inclined to talk about disability on social media, while still navigating their visibility. I have discussed how the pandemic enabled Ali to begin performing political drag on social media elsewhere (Hill, 2023), so I won’t discuss that further here. Although she had previously advocated for mental health, Jessica was spurred into posting more about disability in 2020 after receiving a Do Not Resuscitate (DNR) order from her doctor during the pandemic: ‘I was twenty four … and the government looked at my diagnosis and decided that my life isn’t worth it’. Since then, Jessica has increasingly used her social media posts to highlight examples of disablism and how eugenics underpins many dominant discourses of disability that are presented as common-sense truths. Her selfies are comparatively rare examples – at least within the context of this research – of embodied visibility and the detailed captions mostly situate her experiences within a wider political context, such as the COVID-19 pandemic, to demonstrate that ableism is systemic rather than an individual problem. Jessica’s increasing disability activism on social media has coincided with her increased use of mobility aids and her posts highlight how she navigates this new aspect of her disabled identity. She often posts selfies where her wheelchair is clearly visible and positioned alongside celebratory hashtags such as #InternationalWheelchairDay while also highlighting accessibility issues. Despite expressing feelings of unbelonging and ambivalence towards disability content creators in our interview Jessica’s more recent Instagram posts have increasingly adopted the generic conventions used by disabled content creators, such as selfies where mobility aids are noticeably visible, to draw attention to a particular issue (Hill, 2017) as she explores her changing disabled identity. This is sometimes knowingly commented on in the captions, such as by acknowledging that learning to take selfies correctly is difficult. Drawing on the ‘semiotics’ of disability, such as a wheelchair (Siebers, 2004, p. 13) can be a strategic way of raising awareness of disability, as Jessica says that ‘you do get more engagement when you look more disabled’. This further reinforces how social media practices are powerfully shaped by dominant understandings of disability, where visible physical impairments are granted more legitimacy through user engagement.

Conclusion

Disabled young women, along with other marginalized groups, are increasingly encouraged to make themselves visible on social media in keeping with the logics of ‘neoliberal inclusionism’ (Mitchell & Snyder, 2015) that purport to value diversity on the condition that that this visibility is palatable to non-disabled audiences and adheres to broader cultural understandings of disability (Hill, 2017). However, the young disabled women in this study felt that it was too potentially risky to be visible on social media and this impacted how they presented themselves online. While they appreciated following disabled content creators who share insights into their experiences of disability, believing that they performed a valuable pedagogical function, the young women largely felt that they could not present their own gendered and disabled identities in the same way. It is also clear that dominant discursive and cultural understandings of disability shape social media practices. The young women’s reluctance to make themselves visible was underpinned by concerns that non-disabled people would question the legitimacy of their disabled identities, resulting in harassment. This was a prominent concern that impacted how they presented themselves online and future research would benefit from exploring the intersections of gender and disability in online harassment, as disabled women’s experiences have been largely overlooked. Their experiences of ‘systemic disbelief’ (Hale et al., 2021) shaped their self-presentation practices, as they carefully managed their visibility through managing content and navigating audience dynamics. Key affordances, such as Twitter’s retweets function, played an important role, as retweeting enabled the young women to align themselves with certain ideas and draw attention to disability issues while maintaining a critical distance that ensured a focus on the wider political context and social justice rather than the individual. Indeed, their accounts of how they identified as disabled were politicized and rooted in the social model (Oliver, 1983) of disability that emphasizes societal barriers as the cause of disability rather than something that is located within the individual who has something ‘wrong’ with them. This article has also briefly considered how the COVID-19 pandemic has shaped disabled young women’s social media use and it is clear that hostile policies, media discourses and attitudes were acutely felt by the young women, which in turn impacted their social media use in a variety of ways. This article has presented the initial findings of an ongoing project, which would benefit from examining disabled young women’s self-presentation practices on other social media platforms beyond Twitter and Instagram. Nevertheless, in exploring how disabled young women navigate their visibility and perform their identities online as part of their everyday practices, I hope to have begun to draw attention to what it means to live as a young disabled woman in the contemporary moment.

Acknowledgments

I am hugely grateful to the young women who took part in this research. Thank you for sharing your time, energy and expertise. I would also like to thank the anonymous reviewers for their generous and constructive feedback on an earlier draft of this article.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Notes on contributors

Sarah Hill

Sarah Hill is a Lecturer in Media and Cultural Studies at Newcastle University, UK. She is the author of Young Women, Girls and Postfeminism in Contemporary British Film (2020), published by Bloomsbury Academic. She is currently researching disabled girls’ and young women’s online self-representation practices and her previous work on this topic has been published in Girlhood Studies and Feminist Media Studies.

Notes

1. I use ‘girls’ and ‘young women’ interchangeably throughout this article in keeping with the tradition within girls’ studies to view girlhood as a cultural construct, where the categories of ‘girl’ and ‘young woman’ are slippery and overlapping, rather than a fixed, essential biological state.

2. Here I am using the langue that the participants used to describe themselves.

3. This is consistent with Bitman (2022), who also found that autistic women managed their self-presentation because they felt that they were ‘too much’ for neurotypical people to cope with.

4. I am not suggesting, that passing is in any way easy, as it involves a great deal of ‘taken-for-granted extra labour’ (Cooper, 2016, p. 122).

5. Hashtags, along with the ability to re-post others’ posts, are not exclusive to Twitter but are significant features for this platform.