Abstract

Very little is known about the online habits of people labelled with intellectual disability. What little information there is focuses more on demographic descriptors rather than any analyses of issues specific to that group. Hence the vast majority of the literature is firmly focused on more generic issues as they affect the general population. Some very few disability dedicated studies, however, have examined homepages maintained by individuals who live with Down syndrome. Here at least is evidence of a field of inquiry that recognises there may be particular aspects of web based communications that deserve special interest. The dynamics of web based communications are fast moving and the relatively static homepage has subsequently given way to Web 2.0 technologies. Here the recent and exponential increase in the popularity of blogging as a means of mass communication has attracted much comment in both popular and specialist quarters. Its ease of use and near universal availability has prompted massive sociological inquiry. But again the profile of people living with intellectual disability is absent from the debate. Our study reports on a project in which adults with intellectual disability were assisted to access the web in general, and the 'blogosphere' in particular. Our focus is on the means and methods by which the participants were able to manage their off and online identities. We look at the language employed, the layouts used and the way the online messages and postings reflected or distorted the actual lived experiences of these proto-bloggers. Notions of authorship and audience also contribute to the debate as these issues raise questions about sense of self, disability as a cultural construct and our ability to negotiate the increasingly important virtual world of the web.

Introduction
1.1 This report of a study conducted with people labelled as having an intellectual disability centres on the researchers' reflections on how the people participating in the project handled issues of presenting themselves in an online environment, specifically within the activity of blogging. This takes place against a media background of frequent warnings issued to the public regarding the dangers of the 'bogus' identities within internet social spaces that are either preying upon our children or turning confidence tricks to part us with our money. Much more prevalent, however, is the everyday management of online identity carried out during routine interactions by the vast majority of internet users. This represents, we argue, a more common manipulation of how we wish others to see us than can occur in other locations in our everyday lives.

1.2 This report of a study conducted with people labelled as having an intellectual disability centres on the researchers' reflections on how the people participating in the project handled issues of presenting themselves in an online environment, specifically within the activity of blogging. This takes place against a media background of frequent warnings issued to the public regarding the dangers of the 'bogus' identities within internet social spaces that are either preying upon our children or turning confidence tricks to part us with our money. Much more prevalent, however, is the everyday management of online identity carried out during routine interactions by the vast majority of internet users. This represents, we argue, a more common manipulation of how we wish others to see us than can occur in other locations in our everyday lives.

1.3 Our thesis is that identity arises out of the meeting between 'self' and 'other'. We present some arguments from a symbolic interactionist perspective to support this. For people living with intellectual disability, however, we argue that this perspective, while still viable, can limit the construction and presentation of identity. Our study centred on an exploration of how this might be enacted within online behaviours and practices. Thoreau comments that:

'The Internet is often lauded as a development that has positive spin-offs with regard to disabled people. One of the Web's supposedly revolutionary attributes is the opportunity it provides disabled people to communicate online and be viewed in the same way as non-disabled Internet users'.

1.4 The assumptions behind this perspective provided a starting point for the project. Like Markham we too felt that 'The extent to which information and communication technology (ICT) can mediate one's identity and social relations should call us to epistemological attention' . So, with our hands rigidly by our sides....

The Blogging Project
2.1 With these and similar ideas developing we decided to undertake what became known to its participants as the blogging project[1]. The project rested on a primary interest in how individuals labelled with an intellectual disability presented themselves in an on-line environment. The study was qualitative in approach and could be described as being informed by an interactionist variety of ethnography. The project involved signing the participants up to a commercial blogging site and guiding them through a process of composing and posting blogs. We also took the opportunity at this stage to enrol the participants onto a well known social networking site where blogging was a regular activity. Data were generated through the observations recorded in field notes by the researchers. The blogs themselves were also viewed as data sources as were the evaluation data gathered at the end of the project. These included a self completed questionnaire and a structured focus group. The researchers also kept reflective notes of their discussions. Further reflective commentary was produced though regular meetings to discuss the processes of the study.

2.2 The study underwent ethical scrutiny and received approval through the research governance processes of Sheffield Hallam University. The aims of the project were to:

• explore the potential of widely available computer mediated technologies (CMT) in relation to their use by individuals labelled with intellectual disability
• uncover the sense of self apparent in the daily lives of the lay participants
  
• provide added value through participation to the person labelled with intellectual disability through the chance to develop new relationships with adults outside of their immediate family or professional support networks, and also
• encourage the learning of new IT skills that could be valuable across a range of social and work-based setting
  

Background

3.2 Even before the popularisation of web-related activity took hold the novelist William Gibson ensured that the neologism 'cyberspace' became a necessary part of the critical vocabulary. Soon after an academic literature on computer mediated communication (CMC) or information communication technology (ICT) emerged in response to the commercial development of the world wide web (WWW) in the early 1990s. Online activities such as games and gaming formed an initial focus of interest and from there associations with online identity developed. Rheingold  charted the emerging terrain of web related activity, pointing out how communities of interest could form around the new technology.

3.3 Writing at a time when the web was still in a condition to have been described as 'so various, so beautiful, so new' Arnold, Turkle  remarked that 'Every era constructs its own metaphors for psychological wellbeing'. Now with the age of the blog so evidently upon us must we all enter the 'blogosphere' to know who we are?

3.4 Jones explored the matrix of possibilities that surround identity and communication in what he termed 'cybersociety'. In his chapter on the landscape of the internet he introduces a challenging dichotomy when he discusses 'being' and 'doing' . Much web content, he argues, is 'written' as text. This is still the case. That being so most web communities rely on narrative means of communication. Reading and writing therefore constitute much of what people do online. This is never more applicable than when applied to the activity of blogging.

3.6 When Chandler examined the more sociological implications of online identity this signalled the beginning of a more sophisticated analysis which relied less on the novelty of net communication to a focus on the cultural shifts that were implicit within emerging media applications. In considering issues around representation it now seems natural that ethnographers would colonise their corner and the work of Hine  and Markham demonstrate how this can be achieved.

3.7 Hine speaks directly to our own interests and concerns with her remark that web pages can be thought of 'as identity performances on the part of the author' . Markham for her part declares that 'That the computer-mediated construction of self, other, and social structure constitutes a unique phenomenon for study' .

3.8 Rebecca Blood was an early commentator who chose to use the medium to deliver her message. Writing in her own blog, Rebecca's Pocket, she spoke of the 'power of weblogs to transform both writers and readers from 'audience' to 'public' and from 'consumer' to 'creator.'(07 September 2000). This transformation from one identity to another did not happen in our experience but the potential remains for those who can negotiate the demands of producing written materials.

3.9 Herring et al. variously investigate the practice of what is referred to as the 'genre' of blogging in an effort to locate the 'blogger' as an identity as well as by 'type' and 'purpose'. Here the work considers the variables of age and gender in the context of developing web technologies but the analysis stops short of (dis)ability Herring .

3.10 Ren et al. conducted a review of online communities, focusing on how the managers of these groups use design to influence the outcomes in terms of commitment of members to the social networks. This review found that the literature discussed membership categorisation in terms of 'bonding' groups and 'identity' groups. The conclusion was that newcomers would feel more welcomed in identity-based online communities than in bond-based online communities . This has relevance to our study where our findings suggest the participants align themselves in terms of identification with their marginalizing 'label' in the performance of their online activities.

3.12 For whatever purposes, the interface of language based communication and the technologies associated with the internet provide space for sociological enquiry into emergent forms of identity. The pace of web development is such that investigations of any particular application need to be well timed to maintain currency. Answers need to be found and fast for as Beer and Burrows note in the abstract to their article, the phenomenon known as Web 2.0 may be 'moving faster than our ability to analyse it'.

3.13 As such the application itself, in this case the weblog or blog has not, as yet, attracted too much critical attention. Our research, which examines the use of blogs by individuals living with intellectual disability, therefore, has the advantage of novelty in this field.

3.14 Even now when the phenomenal growth of e-based publishing via personal web-pages, blogs and on-line diaries has demonstrated that there is a huge audience, more basic issues such as the absence of an electricity supply, phone lines or wireless connections disenfranchise many. And when Tim Berners Lee argued for access regardless of disability as a way to guarantee the universality and uniqueness of the web he did so at a time when bandwidth was still a major restriction. Merchant is aware of this when he says that 'technological innovation is not homogenous in its uptake or effects' . Accessibility issues, however, albeit of a more social construction, can still provide difficulties. For even given the sheer ubiquity of the blog people labelled with intellectual disability scarcely feature in any associated analysis. For example, the survey of web use carried out by Dutton and Helsper failed to identify people with intellectual disability as a separate category within their review of use by people with disability and health problems. Here uptake was reported at 36 per cent of the 'disabled'[5] population in contrast to 77 per cent of the 'non-disabled' population . As in many other areas of social life people living with a variety of disabilities appear to encounter barriers when trying to access the democratic potentials which are otherwise so freely available. Parsons et al. allude to this when they remark that :

.... policy statements and guidance from the UK government have underlined the importance of ICT for adults with intellectual disabilities specifically, as well as for the population in general, through the potential it offers for social inclusion' .

3.15 The web has forced a paradigm shift in thinking around the communication and ownership of knowledge. Surfacing technological applications such as blogs, podcasts and wikis[6] offer the potential within an accelerated media culture to resist invasive technologies of subordination and surveillance. Labelled individuals of any background now have the means to broadcast and develop new social movements. For people labelled with intellectual disability the opportunity exists to promote notions of participation, resistance/resilience, community and democracy/citizenship.

The processes of the project

4.1 The intention of the study therefore was to understand how people communicated online and to determine if this activity would afford insights into how their identities were presented in this medium. To investigate this we introduced a version of the Twenty Statement Test This was developed initially as a narrative examination of self-reported identity but in order to arrive at a neat unit of analysis the authors broke the test down into twenty discrete statements. Taken as a psychological parlour game it's easy to play. Do try this at home. People should make a list of twenty statements about themselves. There are just two rules. These statements must be true. The statements should begin with 'I am...' or 'I am a ...'. Our motivation here was to gain some insight into how our informants thought about themselves. We also wanted to provide some material for the participants to share online.

4.2 This approach had the benefit of allowing the participants free reign on what aspects of self they chose to highlight or suppress. Naturally we were keen to see if anyone elected to share the label of intellectual disability. Given that they were operating within a virtual environment with no immediate 'others' to gauge against, with no visual cues to guide reaction, would the participants feel less obliged to conform and present an anticipated 'self'? Or would the interactive nature of blogs and blogging recreate the rules of engagement found in the offline 'real' world and thus coerce the participants to produce online selves of a more genuine variety? As Robinson suggests,
'Offline self-ing is built on interrelated interactions that do not stand in isolation. In parallel fashion, blogging requires sequential interactions that inform each other, such that interactional flows result from contributions from both bloggers and audiences that are predicated on each other'.
We will see below how this interaction manifested itself in the study.

The Blogs..... and how we used them

5.1 In this section we go on to examine in detail the actual blog posts and to interrogate them for clues that might illuminate the identity of the bloggers in their performance of this activity. The blogs served a dual purpose. They were at once the vehicle by which the participants expressed themselves and they were simultaneously the vehicle by which we as researchers attempted to interrogate their posts for meaning.

5.2 Each participant was assisted by an undergraduate student to sign up to a commercially available blogging site. They were able to choose their own background colours/designs and to choose an online name. In making these choices they were managing their online appearance. But the most telling aspect was of course the content of the blog itself. Being a largely text-based medium blogging relies on literacy as well as some ability to use a computer and although each participant had a dedicated assistant this of itself did not fully remove some of the barriers.

5.3 For example, one of the participants 'L' opted to compose her own blog, entitled 'L's First Blog' and typed two lines on the subject of 'what did you do this week'. L then sat back and declared 'That's enough'. In the feedback session we suggested that L had probably done more than two lines worth of living that week. The response was, 'I find it hard to write it down but it's easy to remember in my head.....'

5.4 Another of the group 'C', who was unable to type asked her supporter to comment. The supporter remarked:

'C did want to write things but I don't type fast enough for her. And she didn't want it to be boring so I said I'd change it. She wants to do more on the computer but she doesn't feel there's much time for her to do it'.

These examples illustrate the dilemma. People labelled with intellectual disability may lead interesting and varied lives but find difficulty in expressing this. Some, such as C feel the need to embellish. The published blogs and the communication around them suggest paucity of lived experience. But how much is this to do with actual lives led and how much is determined by the medium? Two examples are shown to illustrate this.

5.5 The following post is from P. It is one of only two posts this person made. The online name chosen was 'the ferret' and of course an online name is the first step in assuming an online identity. The blog was entitled 'the adventure'.

'cycled to Rother Valley country park, had a drink, watched the water skiers then back home. got in about 8, fell asleep then about ten had some supper, watched TV till 3 then went to sleep. got up about 9.15 and got the bus to town. from there I got the train to Sheffield and caught the bus up to the university for the blogging project (this is LIVE!!!!!)'.

5.6 Whatever else we may deduce from the post the author has clearly appreciated the subtleties associated with the proximity of the audience as they deliberately breach the conventions of the fourth wall with the final exclamation '(this is LIVE!!!!!)'. Here the capitalisation of the letters and the multi-speech marks call attention to the dilemma of commenting on daily life while simultaneously living it.

5.7 This post is from L again, who chose to keep her own name.
'My name is L. I live in derbyshire. I am doing this so I can learn more about blogging. I like working and swimming. I work in a clothes shop in derbyshire were I work on the till and sort out the clothes. The clothes that I sort out it is up to me which ones we keep and which ones we get rid of. The shop I work in is a charity shop'.

5.8 L and Ferret both composed and typed their blogs independently. They are presented here as they appeared, unedited.

'The day starts off with my Dad taking me to meet my support worker and a friend. We have lunch which is very good, lots of sandwiches and fruit. Than we go to the class room to work on blogging'.

5.15 With these details they appear to publicise their differences when the medium permits them to focus on other aspects of their lives. Is the label of intellectual disability then so pervasive that it dominates their every waking moment? Or is intellectual disability now less stigmatising than it once was and therefore deemed less worthy of the effort required to deny its existence? Certainly for our participants, and probably for the many millions of others who inhabit the blogosphere, what you see is definitely what you get.

E-veryday life and identity

'The whole point of a diary is that you write it every day, as infallibly as you brush your teeth. .......... A diary is not about the highlights, it's about the quotidian, it's about what you think and do on a dull day as much as on an exciting one' (Lyn Barber, The Observer, 31.12.2006: p8).

6.1 What opinions are we entitled to form based on reading personal accounts of daily life? The Great Fire of London, for example, was a major historical event recorded for posterity but it tells us little of its recorder. The sense of self available from diary-like entries is more evident in routine recordings and in our research this is clearly the case where newsworthy events do not feature.

6.2 Edgerton's landmark study suggested that many individuals living with mental retardation (sic) had to work hard to negotiate everyday life. Made well aware of their own apparent social deficiencies by long institutionalisation such people adopted a 'cloak of competence' just to get by and, on re-settlement into the community, lived with a fear of their diagnosis being discovered.

6.3 It was around this time that Goffman's work was having an impact on sociological inquiry. We believe that his mid-twentieth century views retain resonance despite the twenty first century nature of blogging. In studying blogging in this context we are examining the interface and inter-relationship of communication and stigma. Blogging is clearly an interactive process that relies on various levels of communicative skills and strategies to communicate something of the sense of self of the blogger to a wider and generally distant and anonymous audience. What we found was that for the individuals we were working with the reciprocal nature of the process stalled and the anticipated dialogue with the blogosphere became a monologue. Without the anticipated feedback the online process of identification came to resemble the 'real world' experiences of the group: they were effectively being marginalised and silenced. Hall alludes to this when he emphasises a more postmodern line on identity. Speaking of the relationship between subjects and discursive practices he refers to 'the politics of exclusion which all such subjectification appears to entail' .

6.4 The net result is that efforts to manage identity, whether conducted in a virtual or 'real' environment, are apt to founder where there is no reciprocity. Our identity is, after all, not a self managed project but is constructed with and by our interaction with others.

6.5 The schemata below are a representation of how we reached an understanding of what was happening within the blogging project. In (Figure 1) we use the example of someone with no label of intellectual disability to draw upon the theoretical insights of interaction and identity formation, the role of presentation of self in these formulations and interpretive processes that serve to produce continuous and evolving notions of identity and our relations in the world.

6.6 In (Figure 2) we take an individual with the label of intellectual disability as the exemplar to represent our interpretations of what we saw happening in the project. We suggest that identity arises through the processes of presentation of self to 'others'. This presentation is interacted upon and between the self and other actors, these interactions are subject to interpretation in a reciprocal process resulting in the formation of identity. Gergen considers that identity is constructed, and constantly reconstructed, through relational processes - that is, identity formation does not arise as an individual's personal and private cognitive structure but is constructed through discourse (narrative accounts). This indicates that the establishment of identity relies on dialogue not monologue, the self must interact with others to 'story' the identity, and that identity depends on others validating the story. According to this source at least:

'Identities ..... are never individual; each is suspended in an array of precariously situated relationships. The reverberations of what takes place here and now - between us - may be infinite'  

6.7 Our reflections led us to consider that the intellectual impairments the participants live with interfered with their presentation of self. This is particularly true when considering the importance of Goffman's ideas around face work. Of even more significance is a virtual environment where exaggerated face work is often the central feature of interaction. Here any lack of sophistication will be exposed and lead to interference in the interactive and interpretive processes as described in the schemata. We suggest that this incomplete presentation, evidenced by the content of the posts, gave little material for interaction with and interpretation by 'others', so limiting the formulation of the on-line identity. In what now follows we go on to highlight how we applied some theoretical thinking to the blogs and the bloggers. The discussion and conclusion suggest directions for future investigations.

Discussion

Understandings of identity

8.1 The Twenty Statement Test used in the project examined the idea of reflexivity, introduced by Mead as essential to a sense of self . Mead also promoted the notion of self as more than physiological and emphasised the social aspects when he said 'The self, as that which can be an object to itself, is essentially a social structure, and it arises in social experience' .

8.2 Impression management, face work or presentation of self all require that the individual engages with his/her 'audience' whether this be in routine social encounters or in online fora. People labelled with intellectual disability are disadvantaged in this process. They often lack the vocabulary or the social skills to negotiate such situations in a way that promotes a positive image. This extends into the realm of syntax and semantics where incomplete command of vocabulary might provoke disinterest or a less favourable response from potential audiences. But beyond the technical limitations of language as explored in the previous section we now move on to discuss more general issues as they relate to the web presence of people labelled with intellectual disability.

'The potential of the internet to elicit a response is particularly significant for the dispossessed who can use the various tools available to them to voice themselves and utter a call for acknowledgment to which a responsible response could be expected'  

8.4 From the posted content and from discussions held during the project we were able to identify with the functions identified by Mitra . The disability label was certainly an issue in their sense of self and how that self is presented to others. As mentioned previously in the context of the blogs, all of the participants made some reference to their 'disability' either by outright claim or by description of their daily routines.

8.5 In her responses to the Twenty Statement Test, C noted her membership of a local self-advocacy group and also of Mencap. Two others in the group referred to their support worker in the course of descriptions of routine life. None, however, made any attempt to renegotiate or explore this initial presentation of identity save for using an assumed name and this was a suggested tactic designed to offer some protection through anonymity. Perhaps this identifies a barrier to processes of identification, a notion that their identity is frozen by their label?

8.6 Seale in a study that examined homepages created by people living with Down syndrome noted the tendency for obvious difference to create stigma. In the sample of twenty individuals all 'acknowledged membership of the Down Syndrome group to some extent' . Some of Seale's sample opted to promote their social competence by advertising their preferences for popular culture . This was mirrored in our study where boy bands and television programs were frequently referred to in the profile section of the social networking site in a way that suggested an ownership claim or process of identification was being offered. This effectively highlights similarities with mass audiences while not denying the unique identity of the user. But even so, the relatively static nature of the homepage means that while presentation of self can be altered, manipulated or otherwise modified the label of disability is not directly challenged as it might be in the correspondence arising from a blog.

8.7 This introduces the 'voice' and the anticipated responses alluded to by Mitra . The following by L attracted eight posts, all from people directly involved in the project and over a period of one week:

uni work 'I do different things at the university such as working with social work students. We explan about people with learning disablitys about how to work with us'.

Conclusions

a) The research was funded by and carried out in collaboration with the Centre for Interprofessional e-learning (Sheffield Hallam University and Coventry University).
b) The funders have imposed no restrictions on free access to or publication of the research data.c) The authors have no financial or non-financial conflicts of interest.

Notes

1. The blog is a form of electronically written diary or personal communication. Precise figures are difficult to come by, not least because of the ferocious rate of uptake, but some estimates put the number of blogs in existence at over 100 million and rising (http://technorati.com/).
2. Goffman coined the term in The Presentation of Self in Everyday Life to stand for the elements of time, place and audience which he regarded as crucial to everyday role performance. This borrows from the work of Burke, K A Grammar of Motives where a similar notion of 'dramatism' was suggested.
3. MUDs: multi-user domains. MMORPGs: massively multiplayer online role-playing games.
4. http://www.secondlife.com/
5. 'disabled' in this context is defined according to strictly medical model thinking.
6. podcasts: a podcast is a series of digitised media files which are distributed over the internet. The term podcast can refer either to the content itself or to the method by which it is syndicated. wikis: a wiki is a piece of software that allows anyone to collaboratively create, edit, link, and organize the content of a website (http://en.wikipedia.org/wiki/Wiki).

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