Theoretical framework

The new sociology of childhood, which became prominent in the 1980s and 1990s, espouses the idea that childhood is a social construct rather than a universal phenomenon (James and Prout, 1990). In the new sociology, children’s inferiority to adults is not determined solely by their biological development but is also effected through intergenerational subordination to adult knowledge and authority (Mayall, 2002). Moving away from the perception of childhood as inferior to adulthood, the new sociology of childhood had the standpoint that a child is a social actor capable of shaping the world around them while at the same time being influenced by that world (James and Prout, 1990; Qvortrup and European Centre for Social Welfare Policy and Research, 1994; James, 1998; Prout, 2002). It follows from this standpoint that children are not only ‘humans in becoming’ embarked on a trajectory of socialisation to reach the gold standard of adulthood but are also beings whose views and experiences are worthy of investigation in their own right (Matthews, 2007).

Thinking of children as social actors represented an epistemological shift in childhood research and children were no longer regarded as passive research objects. Instead of doing research on children, researchers strived to do research with children and privilege their voices in the knowledge generation process (Mayall, 2000; Christensen and James, 2017).

However, at the time when works in the field of the new sociology of childhood were gaining traction, when it came to disabled children, their voices were still largely absent from childhood research (Wells, 2017). The claim of the new sociology of childhood that children are competent social actors posed a challenge for the inclusion of disabled children. When assessed against the normative standards of biological development, disabled children are likely to be identified as lacking, deficient and incompetent (Davis and Watson, 2000; Curran et al., 2018).

Rather than viewing disabled children’s capacities and competence as determined by their age or impairment, my research is underpinned by the view that children’s capacities are relational and situational (Coyne and Harder, 2011; McLaughlin, 2020). This view holds that it is possible to enhance children’s capacities for participation in decision-making processes or in research through actions undertaken by adults, including age-appropriate or disability-related adaptations of research procedures and decision-making processes (Keravica, 2023).

My research is squarely situated within the growing field of disabled childhood studies that emerged in response to the absence of disabled children from childhood research (Curran and Runswick-Cole, 2013; Runswick-Cole et al., 2018). The scholars writing in this field have attempted to move away from research on children’s impairments and toward research that aims to reveal disabling structures that marginalise disabled children. (Shakespeare and Watson, 1998; Priestley et al., 1999; Connors and Stalker, 2007; Stalker et al., 2012). The underlying principles of disabled childhood studies are the positioning of the voices and experiences of disabled children in the centre of inquiry and the challenging of all normalisation practices (Curran et al., 2018, p.45).

Disability studies scholars have warned that the social model of disability may not be enough to account for the experiences of childhood disability, not least because of the impact of impairments on children’s lives and the lack of homogeneity and a common identity among disabled children (Connors and Stalker, 2007; Watson, 2012).

In my research, I adopt the socio-relational understanding of disability espoused by Carol Thomas (1999; 2004). According to the socio-relational understanding, disability is a ‘product of the social relationships between those with and those without impairments in society’ (Thomas, 2004, p.28). In Thomas’s view, these social relationships are oppressive and marginalise disabled people into a position of inferiority and powerlessness. Thomas builds on the social model of disability and establishes a distinction between restrictions that stem from a disabling environment and restrictions that are impairment effects related to the nature of the impairment (Thomas, 1999). In other words, the socio-relational understanding of disability elucidated by Thomas helps us to understand that the restrictions on activities that disabled people face may have origins in both people’s impairments and socially-produced disablism. This understanding also shows it is helpful to distinguish between impairment effects and disability as a form of social oppression as these are very different causes.

In the ongoing empirical study, I was interested to learn to what extent disabled children participate and have a say in decisions about their medical treatment, focusing on elective orthopaedic surgeries recommended to alleviate impairment effects. The study involves three groups of research participants: disabled children and young people, their parents and healthcare professionals. In this paper, I report the findings from the data collected from disabled children and young people and their parents, focusing on the parts of medical encounters that may have disempowering effects on children and that discursively shape participants’ understanding of disability with relevance to independent living.