Disabled Childhoods

Monitoring Differences and Emerging Identities

Janice McLaughlin, Edmund Coleman-Fountain, Emma Clavering

• Publisher: Routledge
• Year: 2016
• eBook ISBN: 9781317748908
• Edition: 1
• Topic: Social Sciences
• Subtopic: Health Care Delivery
• Index: Social Sciences

A crucial contemporary dynamic around children and young people in the Global North is the multiple ways that have emerged to monitor their development, behaviour and character. In particular disabled children or children with unusual developmental patterns can find themselves surrounded by multiple practices through which they are examined.

This rich book draws on a wide range of qualitative research to look at how disabled children have been cared for, treated and categorised. Narrative and longitudinal interviews with children and their families, along with stories and images they have produced and notes from observations of different spaces in their lives – medical consultation rooms, cafes and leisure centres, homes, classrooms and playgrounds amongst others – all make a contribution.

Bringing this wealth of empirical data together with conceptual ideas from disability studies, sociology of the body, childhood studies, symbolic interactionism and feminist critical theory, the authors explore the multiple ways in which monitoring occurs within childhood disability and its social effects. Their discussion includes examining the dynamics of differentiation via medicine, social interaction, and embodiment and the multiple actors – including children and young people themselves – involved. The book also investigates the practices that differentiate children into different categories and what this means for notions of normality, integration, belonging and citizenship.

Scrutinising the multiple forms of monitoring around disabled children and the consequences they generate for how we think about childhood and what is 'normal', this volume sits at the intersection of disability studies and childhood studies.

Part I

Theoretical and methodological practices

1 Theorising disabled childhoods

Our book explores disabled childhood across a number of related fields. These reflect the overlapping importance of the formal institutions that are present in disabled children and young people’s lives, and the everyday interactions that inform their emerging sense of identity. To do so we work across a number of conceptual frameworks. Whilst these offer much to understanding childhood disability, on their own they do not sufficiently capture the range of social practices, structures, localities and relationships that inform how disabled children and young people make sense of their world and find ways through it. The arguments that have developed within disability studies are strong influences on our work, and are found across the book. What we do here is lay out what we bring from other research approaches, which can bring greater depth and complexity to our understandings of disabled childhoods. We begin by discussing some of the key ideas of childhood studies and how they can be used to think about disability (which is something they do not do); we then highlight how childhood studies writers have traced the emergence of monitoring practices regarding children in the health, educational and welfare institutions of the Global North. In the next part, we will explore the value of bringing ideas from embodiment studies into our account, and then finish by linking our work to ideas from within social studies of technology. Together, these approaches enable us to engage with the ways in which the material and the discursive come together within relational networks of meaning and practice in the multiple settings of disabled childhoods.

Childhood studies

Jenks (1996: 2) asks ‘In what ways can we possibly begin to make sense of children’? This question remains at the centre of childhood studies, but with remarkably little attention given to disabled children and young people, a gap Moran-Ellis (2010) has acknowledged in her review of sociology of childhood in the UK. A quick, and granted unscientific, survey of indexes of key childhood studies texts highlights a remarkable absence of disability. For example, the recent and high profile compilation, The Palgrave Handbook of Childhood Studies (Qvortrup et al., 2009) does not include disability in the index, although it does have two references to illness. In contrast, disability in childhood has been given significantly more attention within disability studies (Connors and Stalker, 2007; Runswick-Cole and Curran, 2013; Traustadóttir et al., 2015; Watson, 2012). Here can be found an important range of literature and research exploring the historical institutionalisation of disabled children and young people; the abuses they have experienced in such institutions and other walks of life; their exclusion from society via segregation; and their gradual (and faltering) greater presence in society via policies and advocacy for social integration in areas such as education. However, the relative disinterest in childhood studies is peculiar and important. It not only means that aspects of disabled children and young people’s lives are under-considered, it also means that the purpose of childhood studies is left unachieved. Studying disabled childhoods is not just about what this uncovers about disability, it is also about what it says more broadly about childhood and adolescence. In particular, we would argue that studying disability draws into the open the institutional formation of norms of childhood that affect all children and young people. The importance of focusing on a category of children and young people who are framed as incapable of being ‘normal’ lies, at least in part, in uncovering how their position as outsiders to childhood and adolescence plays a vital role in privileging those who are within it.

Childhood studies has at its roots a desire to move beyond the hierarchical and linear thinking of developmental psychology – a discipline which has for a long time dominated academic debates and understandings of childhood (Burman, 1994). While more willing to accept cultural variation than it is sometimes recognised for (Rogoff, 2003; Vygotski, 1929), developmental psychology nevertheless prioritises a way of studying children and young people’s lives which concentrates on them as individuals – outside of history and context – learning about and adapting to the world around them. It also positions the academic interest as focused on how they develop towards adulthood – what Lee (2001) argues is a focus on children as becomings rather than beings and which Turmel (2008: 19) summarises as an interest in children as ‘nothing more than a human form maturing towards adulthood’.

Developmental psychology has never fully escaped implicit, and at times explicit, hierarchies of what kinds of children and young people, and what kinds of behavioural traits, are best; not so much for the child or young person but for social order and cohesion. A strong element informing that hierarchy is the notion of the ‘well adjusted’ child or young person who has acquired the social skills that ensure she is able to fit in and engage with others. The problem with this hierarchy becomes obvious in the context of disability: if the goal of understanding development is to ensure that the right environment is created for the child to move towards successful adulthood, then disability is always already in deficit. It is always going to be harder to make up for that lack and repair the child to the path that should be the goal. Childhood studies asserts that children and young people are not just ‘nominal ciphers’ (Jenks, 1996: 10) developing towards particular ideals of adulthood, instead they are already present in the world as people who shape it. The interest in childhood moves away from identifying how to raise the right kinds of children and young people towards highlighting the confinement contained within prescriptive accounts and measures of the good child and child environment (James et al., 1998; James and Prout, 1997). Challenging that confinement involves a deeper understanding of the lives of children from their perspective.

To develop this deeper understanding of children and young people’s lives, childhood studies operates through two interrelated conceptual and methodological approaches. First, it adopts a broadly social constructionist framework that emphasises the variability of norms associated with childhood. Second, it asserts the importance of children’s participation in research about their lives (James, 1993, 2007). If children are active in creating their worlds, then it is imperative to speak with them in order to understand how they do so (Prout, 2000a). The methodological aspect of childhood studies will be discussed in the next chapter; for now we will focus on briefly laying out the constructionist foundations to childhood studies.

From a social constructionist position, childhood is ‘neither a natural state nor a matter of age – but a basic component of personhood devised as a totality … childhood is a figure of life, a nomadic and mobile figure, continuously re-emergent, outlined and moulded in a given culture’ (Turmel, 2008: 32). Historical analyses have used this way of thinking to capture the dynamics involved in producing childhood as a changing and varied social phenomena (Cunningham, 1991; Plumb, 1975). Ariès’ (1962) key argument that childhood did not exist in Western Europe before the eighteenth century remains – while critiqued on several grounds (Archard, 2003; Pollock, 2003) – a corner stone of this form of study. Ariès proposes that during the eighteenth century versions of childhood emerged through (some) children’s separation into different spaces within the home and education, the development of styles of clothing unique to children, the emergence of cultural materials (toys, literature, music) designed specifically for them, and the appearance of ideals of who the child was. Children were framed as either to be protected due to their inherent vulnerability, or to have their wildness tamed into the performance of social order. Subsequent to Ariès, other historians and sociologists have mapped the evolving dimensions of childhood, linking changes to the social times (Gillis, 2009). Various writers have detailed how the practices of childhood have further delineated into distinct age brackets, as children have split into babies, infants, young children, and adolescents (a comparatively new creation). Therefore, for childhood studies, the answer to the question ‘what turns children into children?’ (Honig, 2009: 64) lies not in understanding children’s developing cognitive ability and moral consciousness, but instead in exploring the making of the institutions of childhood and the way children live within those institutions.

Within this social constructionist approach an important distinction is made between the formation of the norms of childhood and the lives of actual children and young people. The cultural apparatus that children and young people exist within are informed by what they do within them. Corsaro (2005) uses the term ‘interpretive reproduction’ to capture the active participation of children and young people in shaping their lives, within institutionalised set limits to the scope of that participation:

The term interpretative captures the innovative and creative aspects of children’s participation in society … children create and participate in their own unique peer cultures by creatively taking or appropriating information from the adult world to address their own peer concerns. The term reproduction captures the idea that children are not simply internalising society and culture, but are actively contributing to cultural production and change. The term also implies that children are, by their very participation in society, constrained by the existing social structure and by societal reproduction.

(orginal emphasis, Corsaro, 2005: 18–19)

While children and young people draw from, and limitations are produced by, the structures imposed by institutions, spaces do exist within their own peer cultures where they develop their own cultural worlds. As with other social actors, children and young people interact with the norms of being that surround them, creating opportunities for both the playing out of those norms and the challenging of them (Hardman, [1973] 2001). As should be evident from Corsaro (2005), children and young people’s engagement with childhood norms emerges through the interactions they have with others. Their active presence does not occur through their individual actions or intent, but through what develops in conjunction with those around them. Everyday interactions bring broader norms and values into being, and enable the translation of those norms and values into local contexts.

Acknowledging children and young people’s active presence in constructing childhood leads to two important implications. First, children and young people are important actors, through the relationships they are part of, in changes in and resistances to institutional norms. In looking at their everyday active presence in their social worlds, an important aim is to capture ways in which they provide alternative imaginaries to the dominant norms that seek to circumscribe their possibilities (Burke, 2012; Goodley and Runswick-Cole, 2010; Holt, 2004). Second, it also involves acknowledging that they can be participants in shaping the inequalities, hierarchies and exclusionary processes within the spaces they inhabit. The inequalities and exclusions children and young people experience are not just a product of the top-down imposition of normalising and marginalising norms of childhood; they are also a product of their enactment of them. It is important in studying disabled childhoods to also capture children and young people’s participation in generating the boundaries that are our central concern: the boundaries between those judged as acceptable and those framed as the other for being outside the norms of that location.

Already it should be clear that examining the interrelationship between institutionally-produced norms of childhood and the intricacies of children’s lives is more productive of understanding disability than developmental psychology. First, the measures and criteria of developmental psychology are reframed as social constructs, linked to institutional visions of what a future successful adult citizen looks like and the steps required to reach that ideal state. Second, understanding why disabled children and young people ‘fail’ to meet such measures no longer involves examining their individual inadequacy; instead it involves studying the inadequacies of the measures to capture different ways, styles and paces of development and ways of being both a child and an adult. Third, such measures of appropriate childhood have been, and continue to be, politically problematic for the segregation and discrimination that they enable. Residential living and segregated education for disabled children and young people was the norm in many countries, including the UK, well into the middle of the twentieth century. Such segregation was a marker of the ways in which disabled children and young people were positioned as outside of normal childhood, so could be removed from its usual pathways. The absolute seclusion of institutional segregation may have been reduced (not eliminated) in the UK and elsewhere, however, disabled children and young people are still measured against norms of development that define them as lacking, undermining the scope of integration. Finally, scrutiny of institutionalised models of child development is integral to an understanding of the disabled child or young person as a political category. The differences in capacity that disabled children and young people enact and display become disabilities through the distance between them, the norms of appropriate childhood being, and the social and material worlds built around the expectation that those present can enact those norms.

What we draw from childhood studies is a need to engage with both the institutions of childhood (Chapters 3 and 4) and the interactive social worlds of children (Chapters 5 through 7). Childhood studies has also influenced our overall focus on monitoring and surveillance within the book, as being vital to establishing and disseminating the norms and identities of disabled childhoods.

Monitoring and surveillance

Monitoring of children and young people has been a prominent theme in childhood studies, because it is a key feature of the institutions of childhood. Processes and technologies for monitoring and surveying children and young people are core elements through which ideals of childhood are policed and certain categories of children and young people placed outside it. From Ariès (1962) onwards, writers have argued that surveillance of children has developed alongside the concept of a separate and defined period of childhood. The social history of these moves point to the interplay of overlapping goals and visions of childhood in the emergence of these practices and institutions of observation in Europe and elsewhere in the eighteenth and nineteenth centuries. Industrialisation and urbanisation were key contexts, which saw the influx of large numbers of children into both the factory workplace and the overcrowded urban environment, bringing questions about their health, wellbeing, behaviour and safety (moral as well as physical) to the fore (Blackford, 2004; Cunningham, 1995; John, 1984). The growing scope and status of medicine and public health made it possible to collect data on infant mortality, child abuse, factory injuries, housing conditions and problems such as malnutrition, which provided important statistics for social and political debates on the consequences of rapid industrial and urban development. The plight of children was used by both newspapers and charities to highlight the problems of poverty emerging in major cities. In response, across much of the Global North, a series of legal changes removed children from the workplace and placed them instead in education (Cockburn, 2013; Sealander, 2003). Alongside this, transformative public health initiatives saw advances in housing and sanitation that produced significant improvements in child mortality and morbidity (for example James (2000: 26) quotes a reduction in infant mortality in the UK from ‘148 per 1000 live births in 1841–1845 to 50 in 1941–1945’).

As public health initiatives began to produce improvements in health outcomes for children, Turmel (2008) argues that the focus of monitoring shifted from the prevention of illness and disease to the monitoring of children against the developing standards of ‘normal childhood’. It is here, in the late nineteenth century across Europe and the US, that he argues we see the growth in processes through which normal child development was established and then children monitored and measured against (Gleason, 2005; Kellmer-Pringle, 1975; Woodhead, 2009). The institutions of education, welfare and medicine were given the job of evaluating children against these developmental criteria (Markus, 1996). Parents and children became partners in this project of institutional authority, through their deference to it and participation in the range of advice on good childrearing practice (Steedman, 1995).

Over time, the regular comp...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• List of figures
• Introduction
• PART I Theoretical and methodological practices
• PART II Monitoring institutions
• PART III Relational identity and practice
• PART IV Implications
• Index