Introduction

Since the public release of the World Wide Web in the early 1990s, the number of internet users has exponentially grown. As of 2024, over 5.4 billion people worldwide have access to the internet (Petrosyan) — a growth largely attributed to the spread of information and communication technologies (ICTs), which are a broad range of hardware and software that create, store, and transmit information, such as computers, mobile phones, broadcasting services, social media, etc. ("Information and Communication Technologies"). Social media and social network services, in particular, dominate activities online (Dixon), playing an influential role in generating and distributing content while also functioning as an invaluable outlet for self-expression and interpersonal exchange. With regard to disability,¹ a 2017 survey in Canada showed that 80.5% of persons with disabilities aged 15 and over use the internet (Statistics Canada), and several studies concur that ICTs like social media provide substantial utility to people with disabilities by offering them tools that could overcome challenges encountered in real life (Romele et al. 4; Taylor 11-12; qtd. in Dobransky and Hargittai 315-316). In the following sections, theoretical frameworks from Foucault, Zitzelsberger, and Agamben will be used to examine the relationship between social media and disability. Furthermore, by reframing social media as an apparatus, I will argue that while social media serves an empowering role in a disabled person’s sense of individual and collective identity, it functions rather ambiguously — ultimately hindering the genuine expression and understanding of disability and embodiment.

Reframing Social Media as an Apparatus

Akin to other digital technologies, social media has been examined for its political, socio-cultural, and economic dimensions. From a structuralist perspective, social media can be considered an apparatus (or dispositif), which Michel Foucault defined as a “... heterogeneous ensemble consisting of discourses, institutions, architectural forms, regulatory decisions, laws, administrative measures, scientific statements, philosophical, moral and philanthropic propositions – in short, the said as much as the unsaid. […] The apparatus itself is the system of relations that can be established between these elements” (194). More than half a century after Foucault coined the term, the apparatus still carries considerable weight; our current Information Age is defined by the ubiquitous reliance on digital technologies, and thereby yields opportunities for the apparatus’s constituents to be reproduced online, often with a comparably active presence that maintains or extends its reach. This ability is naturally facilitated by social media as it enables the formation of micro-to-macro scale networks, which consist of “information, ideas, personal messages, and other content” that are shared between users online (“Social media”). Accordingly then, it can be argued that social media is also a tool of power and knowledge.

Negotiating and Imposing Disability In/Visibility on Social Media

In relation to disability, the dynamics of power and knowledge exist in practices and discourses that shape the experience of disability, both by non-disabled and disabled people. Such shifts are reflected in Hilde Zitzelsberger’s qualitative study of women with congenital physical disabilities, in which she identified three processes that describe how the participant’s disabilities were made visible and/or invisible: negotiation — implementing strategies that foster a disabled person's desire to be seen or unseen (148); imposition — other people imposing their perceptions of a disabled body (147); and transformation — a disabled person self-determining the value and meanings of their body after reflecting on their experiences (149). Although the interactions between the participants and other people occurred in physical environments, these processes can likewise be applied to online spaces.

Among the various negotiations that take place on social media, perhaps the most prevalent is the creation of a digital identity, which is a self-descriptive profile made of data voluntarily provided to a social media platform (e.g. Facebook, LinkedIn), usually including a real name, photo(s), location, social activities, network of connections, etc. (Romele et al. 4; Donath and Boyd 72). This type of negotiation is distinct as it allows a person to disclose or withhold certain information about themselves, which is not always possible or ideal in in-person interactions — this especially may be the case with a visible disability or another physical marker of difference (Ellis and Goggin 129; Furr et al. 1353-1354). For people with visible and non-visible disabilities alike, control over their engagement and presentation on social media (i.e. the digital identity) can be beneficial depending on the intention. For example, many people with disabilities use social media as an alternative method of connecting with new and existing people, and to access spaces dedicated to disability communities (Anderson et al. 549; Dobransky and Hargittai 315-316; Furr et al. 1359-13; Taylor 12), such as local and International  discussion forums, support groups, virtual events, online healthcare providers, disability advocacy organizations, and so on. Notably, some people may also choose to use social media but not identify their disability as a preventative measure against discrimination, exclusion, prejudice, and stigma (Furr et al. 1355-1358; Dobransky and Hargittai 316; Heung et al. 12).

Nevertheless, people with disabilities are prone to impositions on social media, whether or not their disability is reflected in their digital identity. Several sources examining social media usage in different locales reveal that people with disabilities encounter issues such as cyberbullying, abuse, externalized and internalized ableism, mis- and disinformation, exploitation, and doxing (Anderson et al. 549-550; Cocq and Ljuslinder 79; Ellis and Goggin 132; Heung et al. 3, 6-11; UK Parliament). Moreover, these impositions are linked to policy, systemic, and technological barriers that generally discourage or prevent the use of social media and other web-based technologies; oftentimes, this manifests as limited access to assistive devices or support persons, inaccessible web design and content, lax social media corporation policies regarding hate speech and discrimination, underfunded government resources for people with disabilities and other underserved populations, limited or lack of access to the internet and connected devices, insufficient digital literacy skills, and low levels of income and education — the latter two of which are consistently reported among the disability population in Canada (Anderson et al. 546, 550; Banaji and Bhat 30-32; Dobransky and Hargittai 316-317; Newman et al. 560-564; Taylor 1, 12-13).

In effect, the processes of negotiation and imposition align with Foucault’s explanation of power as productive and repressive (119). As demonstrated, a digital identity offers a greater degree of inclusion, functionality, and flexibility in an online social environment, and thus may be regarded as a source of empowerment for someone with a disability. However, this can also be counteracted by direct and indirect impositions that reinforce many of the same inequalities impacting people with disabilities in real life, namely low socioeconomic status, participation restrictions, and activity limitations.

The Conflict Between Digital Identity and Disability 

While negotiation via digital identity may help people with disabilities navigate the social media apparatus, the power embedded in this process is jeopardized by a problem beyond the aforementioned impositions. To illustrate this issue, Giorgio Agamben stated “it is only through recognition by others that man can constitute himself as a person” (46). Essentially, recognition relies on the premise that observation is a form of power specifically enacted by or upon a person (Foucault, “The Subject of Power” 781, 788-789). In the case of social media, however, the person and their identity are substituted with an online user and digital identity, which merely serve an extrinsic purpose. Agamben observed a similar anomaly in identification techniques (e.g. the mug shot, fingerprinting, and the Bertillonage) that were originally used in the late nineteenth and early twentieth centuries to identify criminals and those at risk of deviancy (48-50). The use of biometric data was subsequently extended to all humans as a method of authentication (Agamben 50-52), which is now commonplace in passports and surveillance camera footage, for instance. Close parallels thus emerge between biometric data and digital identity, in that both are composed of textual and visual representations of a physical being — in other words, they are disembodied constructions.

Consequently, a digital identity warrants concern because its inherent disembodiedness undermines the bio-psycho-social model of disability. The material body is imperative to a holistic understanding of disability embodiment, which involves “a way of thinking about bodily experience that [...] includes pleasures, pain, suffering, sensorial and sensual engagements with the world, vulnerabilities, capabilities, and constraints as they arise within specific times and places” (Wilkerson 67). The body is imbued with meanings and experiences, yet these become fragmented or nullified by the digital identity since it can only mirror but not embody a person or their subjectivities. In turn, not only does this breed poor judgment of selfhood and disability, but it also replicates the "clinical gaze”, a Foucauldian concept that refers to the modern practice of pathologizing a patient (Misselbrook 312). Counterintuitively, such an approach displays indifference as the embodied perspective of a patient becomes displaced by a strictly medical paradigm. And to make matters worse, the understanding of embodiment is further complicated when one considers the recent spread of false identities, deep fakes, and the normalization of self-diagnosing online. 

Notes

1. Refers to physical, sensory, mental, and developmental conditions that may have been present at birth, caused by injury, accident or disease, or developed over time. A disability may also be visible or non-visible. In addition, due to the fluidity of self-identification within disability communities, “disabled person/people” and “person with a disability/people with disabilities” will be used interchangeably in the text.

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