Introduction

The independent living philosophy is underpinned by the concepts of autonomy and the self-determination of disabled people [1]. The independent living philosophy, according to Morris, is grounded in three elements: equal opportunity to exercise choice and control, the struggle for an interpretation of the concept of ‘independence’ that does not imply self-sufficiency and the control of disabled people over the assistance they receive (Morris, 2004, p.427). Disabled people have struggled for a long time to be recognised as adults and fully human and to retain choice and control over their lives (Quinn and Arstein-Kerslake, 2012). The perception of disabled people as dependent has led them to be treated as children and to experience denial of their agency and self-determination (Tisdall, 2012). They are often considered as lacking the capacity to make decisions in their lives and being dependent on the care of others (Arstein-Kerslake and Flynn, 2017). In this regard, disabled adults and children experience similar forms of exclusion on the basis of the perception that their dependency is natural and inevitable due to the presence of impairment or in the case of children, their age (Clark, 2018).

The risk of infantilisation looms large in the lives of disabled people and is embodied in laws and policies, which may promote legal capacity deprivation and the institutionalisation of disabled people, and in family relationships, which may be imbued with paternalism and overprotection (Callus et al., 2019). Frequent infantilisation means disabled people often need to point out that they do not want to be treated as children (Safta-Zecheria, 2018). However, while disabled adults are striving to break away from the status of ‘eternal child’, the position of disabled children within the disability movement and society as a whole remains unchallenged (Keravica, 2023). While the struggle for the universal right to legal capacity for disabled adults resulted in the codified human rights standards enshrined in Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), children are considered as in need of adults’ protection and assistance due to their not-fully-evolved capacities (Sandland, 2017). Under the protective paradigm, it is assumed that the adults involved in a child’s care are best positioned to determine the best interests of that child (Campoy Cervera, 2017a).

Unlike adults, children cannot exercise their choices freely and may be subjected to paternalism in order to help ensure their full and harmonious development. In the context of healthcare, this paternalism usually takes form in laws and policies that set the age of consent for medical treatment or require children to demonstrate a threshold level of competence, as assessed by a healthcare professional, in order to make autonomous decisions (Alderson, 1990). Children under the age of majority may be the subject of paternalistic interventions undertaken by adults as their legal guardians and in the name of their best interests (Godwin, 2011). Disabled children face the risk of exclusion from decision-making processes in matters important to them due to their age or the presence of an impairment that may lead adults to consider them incompetent (UNICEF, 2013). In the context of these forms of exclusion, what is the relevance of the independent living philosophy for disabled children?

The European Network on Independent Living, a pan-European disabled people’s organisation that promotes independent living, makes the following claim in relation to disabled children:

If disabled people are able to experience independent living from a young age then they are afforded similar opportunities to develop their own life course and personal networks as their non-disabled peers. (European Network on Independent Living, 2014, p.19).

This claim demonstrates that independent living for disabled people does not suddenly start once a person reaches the age of majority. This understanding leads us to think about the ways in which disabled children can be supported and encouraged throughout their childhood to exercise their agency, develop capacities and acquire the experience needed for independent living.

In this paper, I begin by outlining the theoretical framework underpinning my study, drawing on the epistemological framework of the new sociology of childhood and Carol Thomas’s work on the socio-relational understanding of disability (Thomas, 2004a; Thomas, 2004b). This section is followed by a consideration of the study design and methodology and related ethical issues. I continue by exploring children’s participation through the lens of human rights, analysing how a child’s right to be heard is construed from two human rights treaties, namely the UNCRPD and the UNCRC (Convention on the Rights of the Child, 1989). I move then to present emerging findings from my qualitative study that involved disabled children and young people and their parents from England and Serbia. The findings presented relate to the meaning of disability that families develop through encounters with healthcare professionals and the implications of these meanings for disabled children’s potential for independent living. Finally, in a discussion section, I reflect on the key lessons learned in terms of the ramifications for disabled children’s prospects for independent living.