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Understanding Disabled Children and Digital Technologies
Introduction
In the previous chapter, I set out the interdisciplinary approach adopted to explore the multifaceted and complex relationship that exists between disabled children and digital technologies. In this chapter, I will continue this discussion by bringing together contemporary approaches to understanding disabled children and digital technologies in order to frame the study and provide a robust foundation for the book. First, it is important to understand why there has been a shift towards challenging the lack of focus on research carried out with disabled children and listening to disabled childrenâs voices (McLaughlin et al., 2016). Changes have been influenced by key developments within the social studies of childhood (James and Prout, 1997) and disability studies (Shakespeare, 2013) outlined here. Second, the chapter will set out a range of approaches for understanding the social uses of technology. This is an essential part of taking a grounded approach to understanding the relationship between disabled children and digital technologies within the context of inclusive education. Third, I will provide an overview of new material perspectives to show how further research could benefit from these. Finally, I set out how critical disability studies approaches influence the ways that disabled childrenâs uses of digital technologies are understood within the book.
Understanding Disabled Children
Childhood Studies
With the emergence of the social studies of childhood in the 1990s, new perspectives arrived in relation to the conceptualization of children and childhood. In turn, this provided a foundation for developing new perspectives in relation to disabled children and young people. These were in response to earlier views of children, much criticized within both childhood studies and disability studies (Watson, 2012). Indeed, defining children and childhood has never been straightforward. In the 1960s, Ariès (1962) pointed out that there are many variations in how children and childhood have been defined throughout history. Furthermore, there are differences in how each society defines children when distinguishing children from adults; importantly this can lead to different outcomes for children as the way in which children are conceptualized frames their lives (James, 2011).
In addition to these differences, childrenâs roles have also changed throughout history. Traditionally, children were expected to contribute financially to the economic survival of their families and this meant that âstrong bodiesâ were needed to carry out physical labour (Jensen, 2003). Developments in the nineteenth century in psychology then added recognition of the additional importance of peopleâs moral, intellectual and emotional welfare. Consequently, by the second half of the twentieth century, predetermined indicators of child development had been determined with monitoring of both physical and psychological markers being widely accepted in order to track the transition to adulthood.
During this time, very little attention was given to the childâs social, cultural or historical context until Vygotsky (1986) showed how these factors affected child development (Ytterhus et al., 2015). This shift in emphasis continued in the 1990s when sociologists, geographers, philosophers and anthropologists added their perspectives to the study of children, alongside views drawn from developmental psychology. This reinforced the significant role of society, history and sociocultural context within childhood (Ytterhus et al., 2015). Incumbent within these shifts in perspective was the view that children were no longer viewed as passive ânominal ciphersâ developing towards adulthood (Jenks, 1996, p. 10). Instead children were considered to be independent, agentic human beings already engaged in shaping their own experiences, outcomes and lives (McLaughlin et al., 2016). This changed the view of children as being âmaturing, unfinished beingsâ (âbecomingsâ) to being viewed as actors in their own rights and having their own needs (âbeingsâ) (Qvortrup, 1994). The change also underscored the importance of paying attention to childrenâs views and taking their experiences more seriously. As Ytterhus et al. (2015) state: âListening to what children say about their everyday lives and experiences allows new ways of theorising and acting based on their understandings in relation to various larger issues of social relations of policy and practicesâ (p. 18).
The emphasis and recognition of childhood as socially constructed, unlike the biological view that had preceded it, led to the development of a âcultural politics of childhoodâ (James and James, 2004). Mayall, for example, argues that childhood is inherently relational (2002). Children can be seen as a minority group living their lives in relation to the dominant culture of adults in the same way that other minority groups are subject to a dominant culture. James and James have described childhood as the âstructural unitâ occupied by children (2004). They state: âPut simply, then, the cultural politics of childhood asks about the outcomes for children, who may live very different lives and whose everyday experiences may be quite diverse, of inhabiting a unitary âchildhoodâ that is regulated and ordered by sets of laws, policies and social practices that work to sweep aside any differences between themâ (p. 11). They argue that understanding how social institutions impact childrenâs lives is crucial. Extending this view, Jenkins argues that cultural politics are key to understanding childrenâs participation in society in different geopolitical contexts and it is in the negotiation between the child and cultural politics that their identity is produced (Jenkins, 2008). Corsaro calls this process âinterpretive reproductionâ to describe how children are active participants in shaping their own lives within the constraints of institutionalized practices (Corsaro, 1997). Moreover, other authors point to childrenâs agency to argue that children can be active participants in shaping the inequalities, hierarchies and exclusionary processes in the spaces they inhabit, often enacting âthe normalising and marginalising norms of childhoodâ (McLaughlin et al., p.16). Carrying out research with children and listening to their views, therefore, may be one of the ways that children can be enabled to challenge inequalities within their own lives and disrupt the processes that exclude them.
There is agreement then that conceptualizations of childhood have had important implications for disabled childrenâs lives particularly in relation to cultural politics and the policy and practice affecting their lives. Both childhood studies and disability studiesâ approaches are concerned with childrenâs rights, participation and connectivity. Children are often recognized as active agents and as the subject of study rather than the object (Watson, 2012). Yet disappointingly, childhood studies have paid little attention to disabled children (Moran-Ellis, 2010). Research with disabled children is underdeveloped and perspectives about disabled children may have resulted from studies carried out with disabled adults rather than children. Therefore it is possible that new models are needed to understand disability in childhood (Watson, 2012). These could include new materialist approaches that deliberately cut across different disciplinary borders. It makes sense, therefore, to consider the new materialist turn together in one section later in this chapter rather than within the discrete sections on childhood, disability and technology studies.
With this in mind the next section will illustrate how earlier conceptions of children in childhood influenced disabled children and how more recent developments in childhood studies have impacted contemporary perspectives.
Disability Studies
The biological bias through which children were viewed until the 1970s assumed that childhood should follow âa staged universal, regular and predictable patternâ (Burman, 2008, p. 41). The focus was on ânormsâ and this impacted disabled children and young people with negative consequences. Once children had failed to meet developmental goals, they were identified as âotherâ and judged to be failing (Walkerdine, 1993). Tisdall (2012) calls this the âmythical gold standard of ânormalâ â failing to recognize, for example, that most people have impairments at some point in their lives and capacities vary widelyâ (p. 183). Likewise, child development criteria produced a set of standards that worked to create the âproblemâ of the disabled child (Davis, 1995) and situate them outside of ânormalâ (Moore et al., 1998, p. 1620).
It is not difficult, therefore, to see how standards of normal/abnormal have negatively impacted disabled childrenâs lives and identified disabled children as inherently problematic. Implicit within these values is the typified notion of the individualized child and an absence of the social context within which they live (Curran and Runswick-Cole, 2014). Disability viewed as âabnormalityâ has led to research on children within the context of special education (Egilson et al., 2015) that has taken little or no account of disabled childrenâs childhoods more broadly (Curran and Runswick-Cole, 2014). Instead, much of the early research has framed disabled children as being a burden. Disabled childrenâs own perspectives are mainly absent from this research and this has produced the effect of objectifying and silencing disabled children (Watson, 2012). Disabled children have been typically depicted âas passive and dependent, and research has stressed the causal role of impairment and tended to individualize the problem of disabilityâ (p. 193). Consequently, interventions were concentrated at the level of individual support. Disabled children and young people were often viewed as incapable, vulnerable and as needing ongoing support. This has reinforced the perspective that disabled children and young people could not be actively included in society. Moreover, disabled childrenâs lives were characterized in terms of social exclusion and marginalization (Ytterhus et al., 2015). As noted by Curran and Runswick-Cole (2014), ironically the focus and assumption of âvulnerabilityâ tend to remove the focus from disabled children and their familiesâ own concerns and experiences. Disabled childrenâs childhoods are thereby reduced to meeting and negotiating âadverse social conditionsâ (p. 126) rather than warranting a challenge to exclusionary processes and inequalities that underpin the valuing of all childhoods equally (Curran and Runswick-Cole, 2014).
The development of the social model of disability represented an important shift in how disabled people and children are perceived within society in general. It moved the agenda from a focus on impairments to one that sought to reduce the disadvantages faced by disabled children and adults (Watson, 2012). Attitudes to disability and research perspectives about disability were challenged when the British Disabled Peopleâs Movement in the 1970s conceived of the social model of disability (Campbell and Oliver, 1996). It became a political tool to challenge and explain disability in social terms and to campaign against segregation and exclusion (UPIAS, 1976). Disabled academics have drawn attention to the Marxist materialist basis and fundamental workings of capitalism that underpin commonly held views of disability and impairment challenged by the British Disabled Peopleâs Movement (Oliver, 1990; Thomas, 2004). In the late eighteenth and early nineteenth century in Britain, the requirement to sell labour meant that those who were not able to work could not support themselves (Thomas, 2004). From this followed enforced dependency, workhouses, institutionalized care and segregated education. Michael Oliver (1990) and Colin Barnes (1991) were instrumental in refining the social model to enable the development of a sociological approach to disability. In the social model, Oliver (1990) and others argue that disability arises because of the way that society is organized and the social relations that construct dis abled peopleâs experiences. In this approach, emphasis is given to social and environmental barriers that prevent disabled peopleâs participation in society. This means that the deficit or restriction is assumed to be located in the social order, rather than in the individual, thereby turning attention away from the individual towards the social structures that exist within that society.
There has been much discussion about the social model since its inception with some authors arguing that there is not one social model of disability but a range of social contextual approaches; and much debate about where âdisabilityâ resides across the continuum between impairment and disability (Shakespeare, 2013). While recognizing that the British social model is useful for political argument, Shakespeare and others argue that the social model is somewhat basic and unsophisticated, and therefore, too limited as the basis for a theoretical model (Shakespeare, 2006). Disability is complex and multifaceted while the social model is perhaps more one-dimensional and thereby offers only a ârelatively small windowâ (p. 194) through which to consider disabled childrenâs lives (Shakespeare and Watson, 2010). Contrary to the social model, both Shakespeare and Watson have argued that it is not just the environment that disables people, it is also âtheir bodiesâ. These traits can lead to limitations such as being in significant pain or having a shorter lifespan (McLaughlin et al., 2016). Moreover, the social model may fail to recognize individual experiences of impairment (Crow, 1996). Indeed Barnes and Mercer (2010) have agreed that the model was never intended as a social theory of disability but more of a âpragmatic attempt to identify and address issues that can be changed through collective action rather than medical or other professional treatmentsâ (Barnes and Mercer, 2010, p. 96).
While acknowledging critiques of the social model, it is widely recognized that the social model has been of huge importance to both the development of the Disabled Peopleâs Movement in the UK and the development of disability studies as an academic discipline. It has significantly influenced UK government policy and European Union policy, and is enshrined within the Convention on the Rights of Persons with Disability (United Nations, 2006; Watson, 2012). It has been argued that the social model has been âemancipatoryâ facilitating the removal of discriminatory practices and barriers and enabling individuals to have more rights and decisions over their own lives (Ward, 2013).
In relation to disabled children specifically, the alignment of childhood studies and the social model of disability led to calls for research to reduce the disadvantages disabled children experience (Watson, 2012). At the same time, changes in government policy occurred such as the Children Act 1989 and the Children (Scotland) Act 1996 that challenged how disabled children had previously been viewed. Research also sought to challenge previously accepted social, cultural and environmental structures, practices and barriers (particularly by adults), which worked to exclude disabled children and position them as tragic victims within their own lives.
Importantly, research built around the social model and more nuanced interpretations illustrates the impact of different contexts and situations on disabled childrenâs lives. Connors and Stalker (2003; 2007), for example, carried out research with children to understand how disabled children experience disability. They drew on Thomasâs interpretation of the social model. Thomas argues that âthe body and embodied statesâ (p. 573) are important in framing disability and it is not just a matter of challenging external barriers. She incorporates disability into âa relational understanding of disabilityâ where disability is defined as 'a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional well-beingâ (Thomas, 1999, p. 3).
In contrast to Oliver and others, Thomas argues that impairments can restrict activity and that these limitations are not irrelevant. She terms these âimpairment effectsâ (p. 43) to describe restrictions which are âdirectly associated with or âcaused byâ having a physical, sensory or intellectual impairmentâ (Thomas, 1999, p. 42).
Thomas claims that any research needs to take full account of both âdisabilityâ and âdisablismâ, a term devised to describe the experience of âdisabilityâ within society, in terms of socio-structural barriers (Thomas, 1999; 2007). She argues that this twofold approach is needed to address issues of âdisablismâ alongside impairment effects (2007). Thomasâs approach enables consideration of what she calls âbarriers to doing and barriers to beingâ (2007), the latter exploring the psychological and emotional impact of impairment. Using this framework, Connors and Stalker show how disabled children experience âimpairment effectsâ (2007). Nevertheless, they found that the larger impact on disabled children is from psycho-emotional effects. These are the âbarriers to beingâ rather than âdoingâ and include hurtful stigmatizing reactions and experiences of being excluded. Connors and Stalker argue that these have a potentially longer-term impact on disabled childrenâs identities and well-being. They report that
in thinking about disabled childhoods, âimpairment effectsâ, âbarriers to doingâ and âbarriers to beingâ all seem to have a place. Our findings suggest that the last of these may have particular significance during the childhood years, when young people are going through important stages of identity formation, which may lay the foundations of self-confidence and self-worth for years to come. (2007, p. 31)
Given the limited evidence base for research with disabled children, Connor and Stalkerâs findings are useful in relation to how disabled children experience childhood. It is also an important study for showing how a more nuanced account of the social model of disability can explore the interplay between both structural and individual issues and the impact of these on disabled childrenâs lives.
Cr itical Disability Studies
Over the past decade, the emergence of critical disability studies has opened up new debates about the social model and disability. The notion of difference and how it is constructed has been challenged by drawing on postmodern studies, cri...