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Who is Researching Disability in Facebook?


This is my first post of 2011, I’d really appreciate your thoughts to develop these arguments. Comments, as ever, are welcome!

At New Year I met some new people and began explaining my PhD research into Disability and Social Networks (no doubt more technically and tediously than my audience had hoped). In the following discussion a ‘disability’ vignette came up. A reveller described how a colleague at work was currently out of the office sporadically, due to anxiety. She was signed off work on grounds of stress. However, word had spread around the office that, despite the leaves of absence being taken, this person had posted several upbeat messages on Facebook over weekends, including photos from parties and other social events. Others in the office were beginning to question the reality of her mental health on this basis.

My own research highlights how the boundaries of disability shift in social networks, as disability and ability are ascribed and mediated by peers, tools and the social context. To me, this vignette highlights the complexity of disability and its representation online, alongside some worrying developments in disability-surveillance.

Research into Facebook highlights powerful social norms that are enacted in social media due to context-collapse. Importantly, Facebook in particular, is an upbeat space where users present their ‘best’ self for scrutiny before a mixed audience of friends, family, associates etc; lots of different contexts are collapsed into one. As a result, many people upload their only best (sometimes airbrushed) photos, comment with only their wittiest witticisms and so on. This instigates a powerful norm of ingratiation. In research interviews, the disabled students I spoke to repeatedly stated that Facebook was not a place to publicly express depression or serious mental illness. Indeed, for some, the only signifier of such disabilities in networked publics was silence, a lack of interaction resulting in greater isolation. Such silences may be noticed by attentive friends, however, as we will see, to insurers and employers, it is noise, not silence, that attracts the most attention.

Somehow, Facebook interactions known to be private and frivolous, have become caught up in a legal and corporate project to define how much disability is required to qualify as disabled. In these terms, Facebook is conveniently identified as the inside track, the Truth of what is going on. Within this, any number of assumptions about what constitutes a disability are enacted. More importantly, an underlying concern can be perceived regarding the force with which the boundaries are decided without reflection. I would argue that these moves ‘discipline’ disabled people. In this way, disabled people must perform a strictly defined role. The abilities of a disabled person are rendered suspect: and, according to this view, there is nothing more offensive than a disabled person who is not disabled, or not disabled enough. Within this dichotomy there is no room for grey areas, i.e. the complexity and diversity of impairments that exist in day to day life. Grey areas are difficult; it is much easier to render these issues in cartoonish black and white.

A recently example comes from the Chicago Tribune (also printed in the LA Times).  The Tibune highlight how insurers are looking to Facebook for evidence to challenge claims.

If someone receiving disability benefits for a bad back brags on Facebook or Twitter about finishing a marathon, chances are their insurance company will find out and stop the cheques.

Chicago Tribune

The newspaper leads with an extreme example, the ‘person with a bad back’ signed off work, who then posts to Facebook that they have completed a marathon.  This vignette is offered as the quintessential disability con.  Underneath this headline, however, any number of more complex cases cascade; including the mundane case of the person experiencing anxiety attacks, signed sporadically on and off work and but maintaining a social life. Expressing such a life in Facebook is important – to challenge stigma and resist isolation. However, whilst employers and insurers stalk the network, I’m concerned that users will be forced to choose between performing Normal according to non-disabled network norms OR performing the externally defined role of the Disabled Person. Increasingly, physical or cognitive impairment has nothing to do with it.

7 Comments leave one →
  1. 02/02/2011 2:14 pm

    I guess Facebook will be the preferred bidder for this Tender then:

    “The Department for Work and Pensions has published a tender worth up to £2m for the supply of biographical data to identity online benefit claimants.

    The chosen supplier will provide biographical data to supplement information already available to the department, according to a notice published in the Official Journal of the European Union on 26 January.”

    • slewth permalink
      10/02/2011 2:56 pm

      Hi DeusExMac

      You make a very interesting point. I don’t believe that Facebook are in the market for government tenders (!) however, clearly Facebook profile data is of increasing value to third parties. Returning to my article, I think there are 2 related issues at stake – that relate to your observation, one is a seemingly straightforward issue of privacy settings, data ownership and the degree to which one can protect oneself from state scrutiny. The other however, is the sticky problem of how inferences are constructed and shared within private networks amongst colleagues and friends, and how this information can move to public domains (the office). Whilst a network is undifferentiated (all ‘Friends’ are ascribed the same access to a person’s information) there is a greater pressure for disabled people to manage or perform disability to a collapsed context, without more nuanced spaces for authentic expression. Perhaps this is a microcosm of the DWP issues you highlight?

  2. Elizabeth permalink
    04/02/2011 8:03 pm

    I’ve been researching disability blogging, and I’m curious to know how you see the differences between blogging and facebooking. I’d been thinking about the question of ideal audience(blog, memoir, autobiography) verus real (facebook) audiences and how that constricts self-reflection, as well as the severely proscribed space and design elements of facebook. Your comments about the hyper-public nature of facebook are really interesting! I’ve just read an article about the metaphors for blogging (spatial versus bodily) as affecting ideas of privacy and audience. If you’d like to converse about the issue via email, just send me one at the email address I’ve given.

    • slewth permalink
      10/02/2011 2:45 pm

      Thanks for your comment Elizabeth. Defining social networks against other social technologies can be difficult, as they incoporate so many different tools. As you observe, audience-type (formal or informal, public, semi-public) is a vital aspect. However, I think volition is also an issue. Where a blog is a controlled front, in SNSs identity is harder to control. Identity is mediated by the affordances of the interface, peers and the wider culture of the network. Students I interviewed broadly concieved Facebook as a mandatory part of student life, with opposing outcomes. In particular, some of the students I interviewed did not want to use Facebook at all – they maintained their profiles only as a point of contact, or to ‘clean’ their online identity – for example tracking photos of themselves uploaded by friends, to un-tag photos of themselves and so forth. In this sense, some disabled students’ use of facebook can be understood to be counter-surveillance and reputation management.

  3. 27/02/2011 5:08 pm

    This isn’t my field of research (that’s disability and the Christian churches), but it overlaps with my campaigning work. A lot of disabled people are very worried about this at the moment, to the point that some have been deleting their twitter accounts. You might find our discussions on this over at ‘Where’s the Benefit’ useful – .

    Your research sounds very interesting. I hope your thesis completion goes well!

    • slewth permalink
      28/02/2011 11:05 am

      Hi Naomi. Thank you for sharing the link to Where’s the Benefit. The discussion you cite absolutely demonstrates the crux of the problem for disabled people with some very powerful examples of ‘discipline’ in action. This is extremely worrying – especially considering the claims made for digital participation in the nation’s political life.


  1. Who is Researching Disability in Facebook? « 32 Days Remaining « Better Disability

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