Children’s participation in the matters that affect them

The view of children as social actors has been reinforced by human rights standards. The UNCRC marked the realisation of the need to accord children with a set of rights that go beyond protection and make provision toward empowering them to express their views and take part in decisions about their lives (Fass, 2011). The UNCRC thus aimed to achieve:

…the balance between viewing the child as the object of caretaking who requires various services and protections from adults and the rights of the child to act fully in his or her capacity as a person (Fass, 2011 p.18).

The repositioning of the child in society and how childhood is seen is reflected in the four key principles of the UNCRC where the participation principle (respecting the views of the child) was introduced alongside three other principles, namely non-discrimination and equality, primary consideration of the child’s best interests and the right to survival and development (Committee on the Rights of the Child, 2009). While being heavily focused on child protection and provision in a number of articles, the UNCRC embodies its principle of participation in Article 12. This article is commonly referred to, in abbreviated form, as ‘the right to be heard’, ‘the right to participate’ and ‘the right to be consulted’, however, each of these forms falls short of capturing the entirety of the requirements of the article (Lundy, 2007).

Article 12 of the UNCRC entitles all children to the right to express their views freely and to have those views taken into account when decisions are being made in all matters that affect them. It further requires adults to consider the age and maturity of the child when deciding to what extent the child’s views will influence a final decision. The more mature a child is, the higher weight should be placed on their views as a recognition of their ‘evolving capacities’, another key concept introduced by the UNCRC. Participation in decisions that affect them is not an obligation but a child’s choice (Committee on the Rights of the Child, 2009, para. 16). Children should be able to choose whether and to what extent they participate.

Adults charged with the duty to make decisions on behalf of children should be led by the principle of the child’s best interests (Committee on the Rights of the Child, 2013). The determination of what constitutes the best interests of a child is not an exercise that should be based entirely on the views of adults. Children’s wishes need to be ascertained, made integral to the decision-making process and balanced against other factors, including the need to protect children from harm (Archard and Skivenes, 2009). That a child’s views differ from those of adults must never be the sole reason for deeming that child is immature or incompetent. If a decision contrary to the child’s wishes needs to be made by the adults, then, at least, the adults should provide feedback to the child, explaining why another course of action was necessary (Committee on the Rights of the Child, 2009).

The UNCRPD includes a standalone article on disabled children (Article 7) which in its third paragraph largely reflects the content of UNCRC Article 12. While space precludes an exploration of the differences between the human rights norms related to child participation enshrined in the UNCRC and in the UNCRPD (see Keravica, 2023 for more information), it is worth mentioning that the UNCRPD introduced an obligation for adults to provide disability- and age-appropriate assistance to children so that they are able to enjoy the right to be heard effectively.

Even though the right to live independently and be included in the community enshrined in UNCRPD Article 19 is commonly associated with the notion of self-determination and the level of autonomy that only adults may be entitled to, the Committee on the Rights of Persons with Disabilities, in its General Comment No. 5, recognised the importance of disabled children’s participation stating the following: “Respecting the evolving capacities of children with disabilities and supporting them in having a say in choices that have an impact on them is critical” (Committee on the Rights of Persons with Disabilities, 2017, para. 75). The Committee also emphasised the need to respect children’s evolving capacities in its General Comment No. 1 on legal capacity by setting up the obligation for States to “ensure that the will and preferences of children with disabilities are respected on an equal basis with other children” (Committee on the Rights of Persons with Disabilities, 2014, para. 36).

It follows from the General Comments of the Committee that disabled children’s right to have their say in decisions that concern them, including in the area of healthcare, is not a game of all or nothing. While they may not be entitled to the same full legal capacity as adults, the right of disabled children to live independently incorporates some degree of choice and control over their lives as guaranteed to them through the ‘right to be heard’. In fact, the more children get consulted and involved in important decisions that concern them, the more their capacities evolve and the more experience they accrue (Lansdown, 2005). Opportunities for a child to express their views and to participate actively in the determination of their best interests form the basis of their increasing levels of autonomy. To fully implement the right to live independently, the actions of States parties must be extended beyond those targeted toward disabled adults and due attention must be paid to disabled children’s views during their childhood.

The following sections explore disabled children’s participation rights in the context of individual healthcare decisions, the focus of the research study.

Disabled children’s participation in decisions about their healthcare

Disabled children are more likely than non-disabled children to Receive medical attention, including both general and specialised healthcare services, and to spend a substantial amount of time in hospitals and rehabilitation programmes (Bricher and Darbyshire, 2005; Kuper et al., 2014). Due to perceptions of impairments as a problem and disruptive to a child’s development, disabled childhood is often marked by various forms of remedial treatments, therapies and surgeries that seek to restore bodily functions or ameliorate impairment effects (Priestley et al., 1999; Mclaughlin and Coleman-Fountain, 2014; McLaughlin, 2017).

The social model of disability as a ’big idea’ of the disability movement underpins both disability studies and the independent living philosophy (Oliver and Barnes, 2012). The model focuses on the analysis of the disabling environment, squarely locating the problem in society and its treatment of people with impairments. While the social model thinkers have never denied that medical interventions may be useful to stabilise initial conditions (Oliver, 1996, p.36), there is a general tension concerning the idea of using the power of medicine to ’fix’ impairments. Oliver contends that “many disabled people experience much medical intervention as, at best, inappropriate, and, at worst, oppressive” (Oliver, 1996, p.36).

Still, the question remains as to what constitutes appropriate medical intervention. It is often mentioned that appropriate medical interventions are those to which disabled people have freely consented. However, disabled children are often legally prohibited from making such decisions and it is usually their parents and healthcare professionals who are tasked to decide what is in the child’s best interests (Elliston, 2007). Further, if the presence of impairment is unquestioningly considered negative and harmful for a child, then there is very little space to challenge decisions to pursue treatments that promise to ’fix’ the impairment (Nelson et al., 2012). Previous research has documented that childhood impairment provokes uneasiness among parents and that their main response is to seek a medical solution to minimise the impairment (Nelson et al., 2012). Even when medicine cannot eradicate an impairment completely, parents may feel an urge or moral duty to ’do something’, influenced by social perceptions of ’normality’ (Parens, 2006). The strong drive to do everything possible to get their children as close as possible to an ideal of ’normality’ may cause parents to pursue elective treatments which pose risks and are imbued with uncertainty (Nelson et al., 2012). Parental sense of moral duty to ’do something’ by any means may effectively reduce the space for children to voice their views and to have those views seriously considered.

In my research, I focus on elective impairment-related paediatric orthopaedic surgeries and disabled children’s participation in treatment-related decision-making processes. This focus allowed me to recruit children with a range of different impairments who experienced orthopaedic treatments. The literal meaning of ’orthopaedics’ in Greek is ’child correction’ or ’straight child’ which illustrates the extent to which such treatments are influenced by the ideology of normality (Shakespeare and Watson, 1998).

It is not my intention in this paper to question whether the medical interventions experienced by the children and young people who took part in the research were warranted or not. In fact, many of the disabled children and young people interviewed said that they experienced benefits from the orthopaedic surgeries they had, such as alleviated pain, improved gait or posture and greater comfort when participating in their favourite activities.

The experienced benefits notwithstanding, decisions to pursue certain impairment-related medical interventions may have unintended consequences. The power of medicine, by establishing the hegemony of normalcy and pathologising all conditions that deviate from the standards of typical development, may instil in parents and children the understanding of impairment as abnormal (Cooper, 2013). Watson and Shakespeare warn that exposure to frequent hospitalisation and corrective treatments may lead to internalised oppression in children and the development of feelings of self-hate (1998, p.20).

I consider impairment-related orthopaedic surgery to be a material-discursive practice imbued with ethical dilemmas and the values and meanings people attach to disability and life with an impairment. The findings I present in this paper draw on the parts of my interviews with disabled children and young people and their parents that revolved around their understanding of disability and the motivations that led them to opt for medical intervention. I contend that those understandings are largely shaped by encounters with healthcare professionals and the (un)substantiated promises of a cure or medical fix.

In the following section I present four themes relevant to disabled children’s potential for independent living: understanding of independence, perception of disability as a negative difference, pathologisation of impairment and disempowerment of children in encounters with healthcare professionals.