Are students with hidden disabilities having their voices heard in education policy?

Prout’s (2000) ‘new paradigm’ of childhood began a quiet revolution in how young people were understood sociologically. They began to move from being constructed as unable to enact agency (Smith, 2007) and dependent on adults to facilitate their participation in society, towards being viewed as competent social agents, capable of fully engaging in society (Prout and James, 2002).

These two conceptualisations of children and young people met in Uprichard’s (2008) model of children as both ‘beings’ and ‘becomings’. ‘Beings’ are active social actors, able to enact their own agency and ‘becomings’ are individuals who are acted upon by social structures, lacking the capacity to enact their own agency.

In this article

This article explores how young people have been viewed within educational discourse, and how their position within literature has been adopted into, or rejected by, governmental discourses relating to education.

It is undertaken in a climate where the needs of the majority of young people with Special Educational Needs and Disabilities (SEND) are met in the classroom (DfEDepartment for Education - a ministerial department responsible for children’s services and education in England, 2010) and where Education, Health and Care Plans (EHCPs) are feared to be available only to those with ‘visible’, medicalised disabilities (BDA, 2012).

The structures influencing young people and their ability to navigate these structures, young peoples’ capacity to enact agency and their empowerment (or oppression) by governmental structures will be discussed.

Young people in literature

Despite young people being constructed as dependent and incapable social agents within literature (Wyness, 1999; Smith, 2007; Corsaro, 2011; Wyness, 2012), in 2002, Prout suggested that a new model of childhood was emergent: the ‘New Paradigm’ of childhood in which young people were no longer viewed as dependent and vulnerable. Rather, he argued that they were beginning to be viewed as capable actors, able to enact agency and fully participate in ‘society’. This standpoint was based on changes in policy, such as within the SEN Codes of Practice (DfES, 1994; DfES, 2001) where consideration of children’s and young people’s views was required.

Although young people had the ‘right’ in statute to participate in education policy processes, Wyness (1999) contested that educational reforms in effect placed barriers to prevent pupils participating in policy processes at school-level. Such a view of childhood was reflected in work undertaken by Smith (2007), where children’s difficulty in exercising their ‘participation rights’ in education was highlighted.

The fact that, within statute and policy, young people have the ‘right’ to participate in policy processes and decision making, and yet cannot access those rights, suggests that the ‘New Paradigm’ of childhood proposed by Prout (2000), and reinforced later by Prout and James (2002), was inadequate for modelling young people’s experiences and ability to access policy processes. It seemed thus that a model which allowed for young people to be ‘actors’ and ‘acted upon’ was necessary.

Uprichard’s (2008) model of ‘childhood’ where young people are dually viewed as actors (beings) and acted-upon (becomings) is a powerful tool for understanding young people’s position within governmental discourse surrounding education.

‘Beings’ and ‘becomings’

The Special Educational Needs Code of Practice (DfES, 1994) explicitly required the voices of young people to be considered in processes surrounding securing appropriate provision to meet their needs. This view was maintained in the 2001 Code of Practice (DfES, 2001).

However, work by Jans (2004), Smith (2007) and Shevlin and Rose (2009) suggests that despite young people’s voices being sought in policy it was difficult for them to actively participate and contribute meaningfully to dialogue relating to provision for their needs. This suggests that young people are construed as both ‘beings’ and ‘becomings’ in this context; although their views are sought, in reality their ability to actively engage is limited. Reasons for this vary, however, Parsons (1992) suggests that a key factor limiting young people’s participation in society is that of their biological immaturity, which ontologically positions them as not yet ‘full’ people and subsequently deficient.

The dichotomous construction of young people within policy continued with the ‘Every Child Matters’ report (Boateng, 2003), in which some children and young people were framed as ‘vulnerable’ and ‘at risk of harm or neglect’ (Boateng, 2003: 5). One reading of the following statement could suggest that young people’s agency was potentially limited and they would be subordinated by the desired outcomes of the report, depending on the definition of ‘educational failure’: ‘Our aim is to ensure that every child has the chance to fulfil their potential by reducing levels of educational failure’ (Boateng, 2003: 6).

Concurrently with the ‘Every Child Matters Report’ (Boateng, 2003), the Code of Practice (DfES, 2001) underscored the importance of children’s and young people’s active engagement and contribution to discussions relating to their own educational provision. As such, these dichotomous views of policy demonstrate the active construction of young people within governmental discourse and policy as both ‘beings’ and ‘becomings’ in line with Uprichard’s (2008) conceptualisation of childhood and children.

The current policy position

The active inclusionAn approach where a school aims to ensure that all children are educated together, with support for those who require it to access the full curriculum and contribute to and participate in all aspects of school life of young people’s views and voice in education policy is a theme which continues in the Children and Families Act 2014. Preceding this act were multiple publications authored under the 2010 Coalition Government, where young people were framed differently and at times, in conflicting manners.

In ‘Support and Aspiration: A New Approach to Special Educational Needs and Disability’ (DfE, 2010: 15), young people are viewed as subject to barriers to learning and that these barriers act to negatively impact on young people’s chances at academic success. This document also suggests that young people with SEN often live in disadvantaged circumstances; their home context subjugates young people with SEN, impinging on their capacity to enact agency.

Writing concurrently with the development of the Children and Families Act 2014, Machin and McNally suggest that government policies affect young people’s academic achievement. Thus, we can see that within some government discourse, young people are viewed as subjects, constrained by the structures surrounding them. In such contexts, we can see that young people are conceptualised within policy as ‘becomings’, incomplete people who cannot yet fully engage with society due to structural constraints.

However, within the Children and Families Act 2014, the voices of children are sought with regard to young people’s provision for their education and also with regard to living arrangements. This is not a new theme; young people’s views have been sought ‘officially’ within other policy frameworks and practices. However, the Act and the associated Code of Practice (DfE and DfH, 2015: 22) purport to facilitate access to support systems for young people and their families, through the active contribution of young people to their own ECHP development and process. Indeed, in the Code of Practice (2015: 22), states that:

‘Local authorities must consult children with SEN or disabilities, their parents, and young people with SEN or disabilities in reviewing educational and training provision and social care provision and in preparing and reviewing the Local Offer. It is important that they participate effectively in decisions about support available to them in their local area.’

As such, we can see that within policy, young people are viewed as active social agents, capable of contributing meaningfully to policy processes. Where young people’s voices and own experiences are viewed as important, it suggests that they are not constructed as ‘incomplete people’ in need of protection and wholly dependent on adults. As Prout (2003) suggests, there was political space created for the voices of children to be heard (on paper at least), and for children to be viewed as capable social agents, a conceptualisation of young people which has been carried into the Children and Families Act 2014, and the SEND Code of Practice (DfE and DfH, 2015).

These constructions of young people (as active social agents and as acted-upon subjects) within policy, reinforce the strength of modelling children as ‘beings’ and ‘becomings’ in line with Uprichard’s (2008) work. We can see that within current policy relating to education, young people are viewed in a manner congruent with this model. However, this model alone does not consider the position of young people with hidden disabilities within current policy frameworks.

Individuals with hidden disabilities are potentially less identifiable, and may not readily be able to participate in processes aimed at people with medicalised impairments.

Understanding ‘hidden disability’

Oliver (1984) argued that medicalisation of impairments and disabilities precludes individuals from self-identification as ‘disabled’. His view was that much literature surrounding disability related it to physical characteristics of the body rather than other types of learning impairment or disability.

This representation of disability does not readily consider hidden disabilities, such as specific learning difficulties or autistic spectrum disorders, according to Dowse (2001). Thus, individuals with hidden disabilities are potentially less identifiable, and may not readily be able to participate in processes aimed at people with medicalised impairments.

In this way, parallels can be drawn between conceptualisations of young people and that of those with hidden impairments. Both groups may be seen as ‘incomplete’ and unable to fully participate in society (Oliver, 1984; Wyness, 2012): young people due to their lack of biological maturity (Parsons, 1992) and separateness from adults (Wyness, 2012) and those with hidden disabilities due to their liminal position within the ‘disabled community’ (Oliver, 1984) and their incompleteness arising from their impairment (Watermeyer, 2009).

Identification of hidden disabilities

EHCPs are created to meet the educational needs of young people, based on identification and subsequent assessment by Local Authorities (DfE and DfH, 2015: 23). Such assessment can be undertaken for medicalised conditions and impairments via health professionals. However, as noted by the British Dyslexia Association (BDA, 2012), assessment of the needs for young people with impairments such as dyslexia is more problematic. The BDA asserts that specific learning difficulties, such as dyslexia, may be more problematic to detect due to their diverse manifestation in different individuals. Teachers and schools may not have the means to assess individuals for dyslexia due to resource constraints (Ross, 2017a; Ross, 2017b). As such, the needs of young people with hidden disabilities may go undetected within current education policy.

Through seeking their voices in decision-making processes, but not clearly defining these processes for young people without an ECHP, governmental discourse obscures the voices of young people with hidden disabilities.

Constraining structures and enacting agency

Pilot studies (Craston et al., 2012; 2013a, 2013b, 2013c) which were undertaken in the preamble to the assent of the Children and Families Act 2014, were commissioned to see to what extent young people could engage with proposed policy changes. It was found that both young people and their families found it difficult to access decision-making processes in the pilot studies (Craston et al., 2013a, 2013b, 2013c).

It was noted that young people without an ECHP found it problematic to access decision-making processes within these policy-structure pilot studies. This begins to suggest that there are problematic processes within current policy frameworks relating to the construction of young people ‘on paper’ and their own, lived experiences. Both Craston et al., (2013a, 2013b, 2013c) and the BDA (2012) have noted that for young people with hidden or less clearly defined impairments, accessing policy and decision-making processes was challenging.

The problematic nature of accessing decision-making processes links directly back to the conceptualisation of young people within policy discourse, both written and enacted. On paper, within the 2014 Children and Families Act and the SEND Code of Practice (DfE and DfH, 2015), young people with disabilities, be they hidden or more perceptible, are constructed as being capable social agents, whose voices are sought in relation to their educational provision.

However, in reality, when attempting to meaningfully engage with the policy process, young people were unable to do so (Craston et al, 2013a, 2013b, 2013c; Ross, 2017a). As such the conceptualisation of young people within policy, mirrors Uprichard’s (2008) understanding of young people and children as both ‘beings’ and ‘becomings’. That is, young people are subject to external structures but also able, to some extent (in theory at least), to enact agency and actively participate in policy processes.

The liminal position of young people with hidden disabilities is likely more vulnerable to structural constraints than that of young people without hidden disabilities, due to their dependence on teacher-differentiation to facilitate their access to the curriculum in the mainstream classroom (DfE, 2010: 63). The budgetary and resource limits of schools and teachers also mean that young people with hidden disabilities are likely to be constrained by lack of resources and in-school support (Ross, 2017a), and subsequently more reliant on their parents/carers for support.

Thus, the current policy framework for provision for young people with hidden disabilities appears to constrain these young people through actions and policies aimed at improving their access to suitable support and provision to meet their needs. Through seeking their voices in decision-making processes, but not clearly defining these processes for young people without an ECHP, governmental discourse obscures the voices of young people with hidden disabilities and thus renders them unable to participate in discourse in a meaningful manner.