Identidad

During the late 1990’s and 2000’s, work exploring the everyday lives of disabled children emerged as well as research on methods and strategies to involve disabled children in the research process. A highly significant piece of work was the ‘Life as a Disabled Child’ Project (Watson et al., 1999). This project was the first time in the UK that disabled children had been included in research based within the ‘new’ sociology of childhood paradigm. The project aimed to present disabled children as active and agentic in their everyday lives and able to contribute fully to the research process rather than as passive, dependent victims as epitomised by ‘traditional’ research that has been focussed on

‘impairment, vulnerability and service use’ informed only by the views of parents and professionals. The project highlighted how the views and experiences of disabled children varied, both between children with different impairments but also amongst children with the same impairments, and thus emphasised the heterogeneity of disabled children. Using a variety of qualitative methods including participant observation, interviews and focus groups in diverse settings (schools, family homes, residential homes, social and leisure clubs)

59 over 300 young disabled people were included in the project. Four key themes emerged from the data: adult surveillance, the creation of the disability category, peer relationships, and identity.

Adult surveillance was observed and described as occurring by many of the young people in environments that were highly structured. Watson et al.

(1999) also noted how it influenced the research process itself. Young people highlighted how the high levels of adult surveillance negatively impacted on their need for privacy and also influenced and limited peer relationships and social interaction. However, many of the examples of the high levels of surveillance observed were confined to the school settings with little written about how this might manifest itself in a family home setting. The research did highlight some resistance to such surveillance asserted by some young people emphasising again the agentic capabilities of the young disabled people.

It was observed that children were primarily categorised as disabled by adults and this ‘bounded children’s experiences’ (Watson et al., 1999:3).

‘Disabled’ was the dominant label applied to the young people and everything related to them was explained by their impairment rather than other differences or similarities, for example, gender, age, race. The young people themselves were more ambivalent about the use of the ‘disabled’ category.

Peer relationships were often limited for disabled young people.

Physical, attitudinal and communication barriers were ‘barriers to doing’ and

‘barriers to being’ (Thomas, 1999) and restricted and prevented peer relationships from developing. A common occurrence of bullying was highlighted by young people and the effect this had on them in terms of their confidence and self esteem. Again, however, there were a number of disabled young people who had been able to resist the process of bullying and ‘stand up for themselves’.

The young people in the project had a fluid and ever changing view of their identity as ‘disabled’. Their definitions of disability varied and were often contextually based. For instance, some described how they were not always disabled.

60 3.4.2 Connors and Stalker (2003, 2007) ‘Exploring children’s experiences

of disability’: disabled children and sibling viewpoints

Connors and Stalker (2003, 2007) also sought to combine ideas from childhood sociology and disability studies and their study aimed to explore disabled children’s understandings of disability and the ways in which they negotiated the experience of disability in their daily lives. Threaded throughout their analysis was a particular emphasis on the social relational model of disability. They argue that the social model of disability is not applicable to children as its focus on systems and social factors fails to incorporate children’s real and heterogeneous experiences of disability. Some of the main concerns of the social model of disability are focussed on such material factors as employment and economics which have very little relevance to disabled children (Cocks, 2011).

Connors and Stalker (2003) conducted a two-year study exploring the lived experiences of 26 disabled children aged 7 to 15 years. Through interviews with the children (which often took place in the children’s family homes) they found that the disabled children in their study experienced disability in four main ways: impairment, difference, other people’s behaviour towards them and material barriers.

Many of the children talked about their disability in terms of ‘impairment’

and the effects of the impairment on their daily lives despite there often being little discussion within families about impairment. The majority of disabled children framed impairment medically but it was rarely framed as a tragedy.

Connors and Stalker (2007) highlight this as interesting given the usual association between the medical model of disability and the viewing of disability as a tragedy. For many of the disabled children, impairment was seen as ‘no big deal’ and ‘just one of those things’ and there was a common attitude of

‘having to get on with it’. However, in line with the social relational model of disability a number of disabled children did refer to and identify ‘impairment effects’ (Thomas, 1999) as leading to restrictions in activity. Examples of these impairment effects included repeated chest infections, having pain, tiring easily and finding it difficult to carry out school work.

61 Very few disabled children in the Connors and Stalker (2003, 2007) study discussed the concept of ‘difference’. The majority of children focussed on similarities between themselves and their non-disabled peers. This was in direct contrast to parents who focussed much more on the differences between their disabled children and others. When disabled children did acknowledge and discuss difference and feeling different it was often as a direct result of poor management on the part of professionals and settings that the children had most contact with, e.g. school. Connors and Stalker (2007) discuss how schools with stringent ‘inclusive’ policies, whereby difference is not acknowledged, can actually have a detrimental effect and magnify feelings of difference for disabled children because ‘rules and procedures designed for the majority do not always fit the minority’ (p27). In other schools, specifically special needs schools, difference is focused on but again this can be poorly managed and have a detrimental effect on disabled children and their sense of identity. One example of this was a teacher at a school who referred to pupils as either ‘wheelchairs’ or ‘walkers’.

A number of disabled children did make reference to ‘barriers to being’

(Thomas, 1999) whereby the hostile and unthinking words of others led to them feeling inferior, which did highlight their feelings of difference. Examples of these actions included people staring at them, talking down to them, inappropriate behaviour, inappropriate comments and overt sympathy. Bullying by other children also seemed to be a common experience for disabled children. In line with the work of Reeve (2004) the effects of ‘barriers to being’

and the resulting psycho-social disablism can be particularly significant and detrimental to disabled children (as opposed to disabled adults). Disabled children are vulnerable because of their less powerful position but also because childhood represents a time when identity formation begins and negative experiences as a result of ‘barriers to being’ can have long lasting detrimental effects on self confidence and self worth.

‘Barriers to doing’ (Thomas, 1999) were also identified and discussed by disabled children in the Connors and Stalker (2003, 2007) study with reference to restrictions of activity placed upon them by social or physical factors such as

62 lack of access to leisure facilities, transport difficulties, lack of after school activities, and limited help with communication. These physical barriers were particularly pertinent for children with physical and sensory impairments compared to those with learning disabilities, once again highlighting how disabled children are not a homogenous group.

Connors and Stalker (2007) conclude that the overarching theme that emerged from their research was that most of the disabled children presented themselves as much the same as others. This insistence on sameness may have occurred for a number of reasons. Firstly, it may be due to societal (both at a macro and micro level) pressures to conform and to not stand out in any way. Secondly, as self-directing agents, the children may have actively chosen to ‘manage their day-to-day lives and experiences of disability in a matter of fact way’ (p30). Despite recognition of impairment effects and barriers to ‘being’ and

‘doing’, the children actively resisted being defined as ‘disabled’. However, Connors and Stalker (2007) dismiss both these reasons and argue that the theme of sameness was so prevalent in the disabled children’s accounts because disabled children simply do not have a language with which to discuss difference and thus:

Perhaps the children were neither ‘in denial’ nor fully in command of resisting the various barriers they face. (Connors and Stalker, 2007: 30)

They argue that this is because many disabled children have little or no contact with disabled adults so do not have positive disabled role models and they rarely have opportunities to share their experiences with other disabled children. Because of this disabled children have little choice but to strive to be the same as non-disabled children. In criticism of the social model of disability, Connors and Stalker (2007) argue that disabled children’s focus on sameness further evidences the model’s exclusion of disabled children’s experiences and narratives and failure to empower disabled children as it has disabled adults.

Furthermore, they argue that the social model of disability cannot be considered a true ‘counter-narrative’ when children’s narratives have played little part in its construction and they conclude that:

63 There is a need for a two-way process in which disabled children have access to ideas and information about social models of disability, and social models of disability take account of their experiences and understandings. (p31)

Connors and Stalker (2007) also conclude that for their study the social relational model of disability (Thomas, 1999) is a useful framework to apply and can go some way to inform our understandings of disabled children’s experiences as reflected by the disabled children’s discussion of ‘impairment effects’, ‘barriers to being’ and ‘barriers to doing’.