Theorising the Lives of Disabled Children: How Can Disability Theory Help?

Theorising the Lives of Disabled Children:How Can Disability Theory Help?Nick WatsonStrathclyde Centre for Disability Research, Institute of Health and Wellbeing, University ofGlasgow, Glasgow UK

The emergence of both disability studies and the new social studies of childhood has seen a

new approach in the study of disability in childhood. The focus has shifted from an explora-

tion of impairment to one that prioritises the social with disabled children themselves placed

at the centre of the research. This article concentrates on disability studies and examines its

influence on the research agenda and its impact on childhood research on disability. It also

critically examines recent developments in disability theory and their usefulness for providing

an understanding of the lives of disabled children. The article finishes with recommendations

for future research in the area. © 2012 The Author(s). Children & Society © 2012 National

Children’s Bureau and Blackwell Publishing Limited.

Keywords: children, disability, health, impairment, experience.

Introduction

Disability studies and the social studies of childhood, whilst both different in theirapproaches and ideologies, share some common themes; both are driven by a desire to turnthose they work with, children and disabled people, from the objects of study to the subjectand to present them as active agents, and both approaches are also firmly wedded to theconcepts of rights and participation. There are, however, differences in their approaches. Incontrast to many of the writings found in the social studies of childhood, disability studies,through the ideas contained in the social model of disability, accentuate the material. Thismodel was first developed in Britain as a political tool by disability activists to explain dis-ability in social terms (Union of Physically Impaired Against Segregation, 1976) and wasused as the basis for political campaigning. Disabled academics such as Michael Oliver(1990) and Colin Barnes (1991) refined the model to produce a sociological approach for thestudy of disability. Its focus is on the societal and environmental barriers, which serve toexclude and disable people, rather than on their impairment.

This article concentrates on disability studies, examining its influence on the researchagenda, its impact to date on research with disabled children and on disabled childhoods,and how recent developments in disability theory can aid future research into, and ourunderstanding of, the lives of disabled children. Although this article does not examineChildhood Studies research, there is one point that it is important to make with regard todisability and childhood: research on disabled children is still marginalised. In the UK, it isestimated that 9 per cent of children aged 11–15 are disabled as defined by the UK’s Disabil-ity Discrimination Act (Office for National Statistics, 2010), yet disabled children are rarelyincluded in research on children and childhood. Issues pertaining to disability tend to bereserved to research that focuses on disabled childhoods and it is rare to find references to

CHILDREN & SOCIETY VOLUME 26, (2012) pp. 192–202DOI:10.1111/j.1099-0860.2012.00432.x

© 2012 The Author(s)

Children & Society © 2012 National Children’s Bureau and Blackwell Publishing Limited

disability in more generic childhood research. This contrasts greatly with social markers suchas gender, ethnicity and social class, which have now become mainstreamed.

This article aims to present an overview of disability theory and examines how it can add, andhas added, to our understanding of the lives of disabled children. It begins with a brief reviewof early work in the area and then moves on to look at the impact of disability studies onchildhood research. The article moves on to examine two developments in disability studies,namely what Carol Thomas (1999) described as impairment effects and psycho-emotional di-sablism; and, second, the ideas that have emerged from what has been called Critical DisabilityStudies (CDS) (Meekosha and Shuttleworth, 2009). The article concludes by drawing on ideas,which are being put forward by those taking a critical realist approach to the study of disabil-ity and presents potential future directions for research with disabled children.

Early research on disabled childhoods

Early research on disability in childhood tended to ignore what disabled children themselveshad to say about their lives and instead focused on the views and perceptions of parents/carers and professionals. This research emphasised the experiences of living with or ofacquiring a chronic illness or condition, with disabled children being presented as passiveand ‘vulnerable’. Research also focused on service provision, in particular education.

Early research on disability and children had, for example, documented how families withdisabled children experienced a range of social and economic difficulties (e.g. Breslau andothers, 1982; Cohen, 1999; Office for National Statistics, 1985). There was also a great dealof emphasis on the impact of a disabled child on the family, on their care needs and on the‘burden’ they imposed on families (Baldwin, 1985). Disabled children were seen as passiveand dependent, and the research stressed the causal role of impairment and tended to indi-vidualise the problem of disability. As a direct consequence of this, most interventions,which were aimed at helping disabled children, tended to be focussed at the level of individ-ual need. Moreover, the voices of disabled children themselves were frequently excluded,and the research focused on the perspectives of parents, professionals and other adults (Bald-win and Carlisle, 1994). This often had the effect of objectifying and silencing disabledchildren. Not only were the views of disabled children absent in much of this research, butso too was any analysis of the social experiences of disabled children, and there was afailure to explore fully ‘the cultural context within which the experience of social isolation,segregation, and poor self-image were lived’ (Davis and others, 2005, p. 325).

The early to mid-1990s saw a change in the research agenda for disabled children from onethat focused on impairments to one that prioritised action to reduce the disadvantage facedby disabled children. Driven by ideas emerging from two relatively new research paradigms,the social studies of childhood and disability studies, and also in part from changes in publicpolicy such as the Children Act 1989 and the Children (Scotland) Act 1996, a new researchagenda emerged that challenged pre-held beliefs on disabled children.

Through the 1990s, work from the social studies of childhood such as Priscilla Alderson’s(1993) Children’s Consent to Surgery, Bryony Beresford’s (1997) Personal Accounts: InvolvingDisabled Children in Research and from disability studies research projects such as the Lifeas a Disabled Child project (Watson and others, 1999) and Kirsten Stalker’s (Connors andStalker, 2003, 2007) work on Children’s Experiences of Disability reappraised the way that

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CHILDREN & SOCIETY Vol. 26, 192–202 (2012)

disability and childhood had been researched. These authors all warned of the dangers offocusing on disabled children as objects of welfare or medical intervention. They argued forthe adoption of participatory methodologies to ensure that the voices of disabled childrenthemselves were represented in the research. Children were active participants in the researchprocess and were presented as social agents who actively negotiate their lives. This new par-adigm also unpacked social, cultural and environmental structures, practices and barriersand, in particular, adult behaviours, which acted to exclude children with impairments.Research highlighted the effect of different environments on children’s lives from the per-spective of the children themselves, looking at, for example, how mainstream and specialschooling impacts on the experiences of disabled children (Davis and Watson,2001) and atdisabled children’s involvement in decisions about their healthcare (Garth and others, 2009).

The influence of disability studies in research on childhood disability

The Disability Studies perspective, put forward by Oliver (1990) among others, argues thatdisability arises as a result of the way that society is organised and that social relations areparamount in constructing the experiences of disabled people. Under a social modelapproach, the focus is on the social and environmental barriers faced by disabled people andthe way cultural processes and policy frameworks either promote or deny inclusion.

The social model has been extremely important, both to the development of disability studiesas an academic discipline (Oliver, 2009) but also, importantly, to the development of theDisabled People’s Movement in the UK (Hasler, 1993). It has influenced UK Government pol-icy (Prime Minister’s Strategy Unit, 2005), European Union policy (European Commission ofthe European Communities, 2003, p4), and is contained in United Nations’ (UN) documentssuch as The Convention on the Rights of Persons with Disabilities (UN, 2006). It has enabledthe identification of a political strategy, namely the removal of barriers, and it has formedthe basis of the case for anti-discrimination legislation (Barnes, 1991). This model has alsobeen personally liberating for disabled people; no longer, it is claimed, are they the problem,it is society that is the problem. As a result of the social model, disabled people were able tounderstand that they were not at fault: society was (Crow, 1996).

However, the social model is not without its critics, and there have been an increasing num-ber of people who have argued that the model is not as all embracing as it might be. It is,some argue, too simplistic and is better suited to the political arena as radical rhetoric for amovement than as the basis for an academic model (Shakespeare, 2006). This article nowmoves on to discuss these critiques and some of the recent developments that have emergedwithin disability studies and how they may be applied to research with disabled children.

Disability theory and children

There is a considerable body of research to suggest that disabled children and their familiesare subjected to discrimination and disadvantage and that the disadvantage experienced bydisabled children and their families is persistent (Emerson and Hatton, 2007; Office forNational Statistics, 2010). Many of these may be the result of social barriers, but it is toosimplistic to suggest that the experiences of disabled children can be reduced solely to ananalysis of such barriers. Disability is a highly complex variable, it is multi-dimensional andit cuts across the range of political, social and cultural experiences. Whilst the social modelprovides a valuable political tool, it only offers a relatively small window through which to

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examine the lives of disabled children and by focussing solely on the material its analysis isperhaps too one-dimensional (Shakespeare and Watson, 2010). Disabled children are not ahomogenous group and neither are they a cohesive collective with a common identity andinterests (Corker and others, 1999). There are many particular subgroups all of which experi-ence disability in different ways. For example, ethnicity and ethnic background affect theexperience of childhood disability (Hussain and others, 2002). Emerson and Hatton (2007)have pointed to the impact of social class on the experience of disability in childhood. Theirresearch suggests that the increased rates of mental health problems found in children andadolescents with a learning disability are the result of poverty and living in areas of highsocial deprivation. Gender may also impact on the experience of childhood disability (Emer-son, 2003). Disabled children living in the Global South also experience disability differentlyfrom those in the Global North (Filmer, 2008; World Health Organisation, 2011).

Furthermore, how impairments impact on individual children’s lives is another area that hasbeen neglected. Disabled feminists such Jenny Morris (1991), Sally French (1993) and LizCrow (1996) have all criticised the social model for its failure to include the individual expe-riences of impairment:

As individuals, most of us simply cannot pretend with any conviction that our impairments are irrel-evant because they influence every aspect of our lives. We must find a way to integrate them intoour whole experience and identity for the sake of our physical and emotional well-being, and,subsequently, for our capacity to work against Disability. (Crow, 1996, p. 7)

Children who have acquired their impairment, children who were born with their impair-ment, children with a progressive condition, children with physical impairments, sensoryimpairments, mental health issues and intellectual disabilities or a combination of the abovemay all experience different outcomes and have differing needs (Shakespeare and Watson,2001). Children who are disabled experience limitations which may have little to do withsocial organisation. As Thomas (1999) argues, impairments can of themselves be limiting.These limitations may make it impossible for them to participate fully in the community orin an activity, either because they have a narrow margin of health, or the technology doesnot exist that would enable them to participate. There are also some children who may notwant to participate, for example, children with some forms of Autistic Spectrum Condition.This is discussed more fully in the next section.

Disabled children have different needs and it is difficult to develop a ‘one-size-fits-all’model, research agenda or policies to meet these needs. Barnes and Mercer (2010) haveresponded to these challenges to the social model by arguing that the model never claimedcompleteness and that it was never intended to be a social theory of disability. They arguethat the social model is ‘a pragmatic attempt to identify and address issues that can be chan-ged through collective action rather than medical or other professional treatments’ (Barnesand Mercer, 2010, p. 96). Whilst this may be an acceptable distinction to draw from the per-spective of political activism, from a social theory perspective it is difficult to sustain and itonly provides a partial explanation of life as a disabled child.

As a result of these criticisms, new schools of thought and new ideas on disability researchhave emerged from within disability studies. Two recent key developments in disability the-ory and their application to childhood research will be explored in greater detail in the nextsection of the article. It opens with a discussion of Carol Thomas’ (1999, 2007, 2010) recent





work on impairment effects and psycho-emotional disablism, followed by an examination ofwhat Meekosha and Shuttleworth (2009) have termed Critical Disability Studies.

Impairment effects and psycho-emotional disablism

As a response to critiques of the social model, Thomas (1999, 2007, 2010) has developed anew, albeit still materialist approach to disability, which she terms a relational understandingof disability. In her approach, disability is defined as:

… a form of social oppression involving the social imposition of restrictions of activity on peoplewith impairments and the socially engendered undermining of their psycho-emotional well-being.(Thomas, 1999, p. 3)

In contrast to the strictly materialist model of Oliver and others, Thomas accepts that peoplewith impairments may face some restrictions of activity as a consequence of their impair-ment. She argues that these restrictions do not constitute ‘disability’ and she has introducedthe term ‘impairment effects’ (Thomas, 1999; p. 43) to describe restrictions which are‘directly associated with or “caused by” having a physical, sensory or intellectual impair-ment’ (Thomas, 1999, p. 42).

Impairments are not, she argues, irrelevant and they and their effects combine with disable-ment and any research on disability must engage fully with both (1999, p137). She has alsocoined the term ‘psycho-emotional disablism’ which she employs to define disabling situationsthat can arise through the actions of close family members, professionals, or other individualswith whom disabled people have direct contact (see also Reeve, 2006). This form of disablismexists in addition to disablism experienced within society at large (Thomas, 1999, 2007).

At the root of Thomas’ work is an aim to provide a full and complete analysis of the experi-ences of disabled people. She has argued for a two-pronged approach to the problems ofdisablism and in so doing seeks to develop an understanding of disability that incorporatesboth the socio-structural barriers and restrictions that exclude disabled people and the socialprocesses and practices which, by placing limits on disabled people’s inclusion, damage thepsycho-emotional well-being of people with impairments. Her approach aims to develop amodel that allows an examination of what she terms ‘barriers to doing and barriers to being’and in so doing develop a sociology of disablism and a sociology of impairment and impair-ment effects (2007).

Connors and Stalker (2003, 2007) were among the first to apply her approach to the study ofdisabled children. They conclude that ‘the social-relational approach can help in our under-standings of disabled children’s experiences’ (Connors and Stalker, 2007, p. 31). The conceptof impairment effects, they contend, allows an analysis of the different experiences of chil-dren with learning disabilities compared with those with physical and sensory impairment.In the children’s accounts, it is the experiences of being excluded and made to feel inferiorthat hurt the most and do the most damage. Connors and Stalker (2007) suggest thatdisabled children face greater ‘barriers to being’ than ‘doing’ and these barriers may be ofparticular importance to young people:

… in thinking about disabled childhoods, ‘impairment effects’, ‘barriers to doing’ and ‘barriers tobeing’ all seem to have a place. Our findings suggest that the last of these may have particular

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significance during the childhood years, when young people are going through important stages ofidentity formation, which may lay the foundations of self-confidence and self-worth for years tocome. (p. 31)

Whilst these findings point to the potential offered by Thomas’ approach, there are issuesthat her approach fails to address. First, discrimination rather than the presence of animpairment or chronic illness remains the key definition for disability and consequently, itassumes what it aims to prove, namely that disabled people are oppressed (Shakespeare andWatson, 2010). It is also often difficult to separate out what is an impairment effect andwhat is disablement: the two are linked, as Thomas (2010) herself acknowledges. For exam-ple, if a young person with an impairment is depressed, it is often not possible to separateout if that depression is associated with their condition, with their own reaction to havingthat condition, with other people’s reaction to having that condition, with the oppressionand social exclusion they may be experiencing, or with some other unrelated issue. There isa danger in Thomas’ work that impairment and disablement may become envisaged as dualsystems rather than a complex interwoven matrix. Discussions on disablism may become adebate about boundaries and about whether a particular experience arises as the result ofimpairment effects or of social processes.

Critical disability studies

Critical Disability Studies has emerged as a concept over the last decade and has sought topresent a challenge to the predominantly Marxist/materialist line found in more conven-tional disability studies’ approaches. Mairian Corker (1999) was among the first to developthis approach to disability and her ideas have been taken up by writers such as Tremain(2005), Goodley (2010) and Campbell (2008). They have drawn on the ideas of Foucault, But-ler, Derrida and Deleuze and Guitarri and have sought to unpack disability in terms ofknowledge and power. The focus in much of this work is on how current ideas about disabil-ity have come to dominate our approaches to disability and how our ideology on disabilityhas been constructed. Shildrick (2007, p. 233) has described CDS as being:

… broadly aligned with a post-conventional theoretical approach. It seeks to extend and produc-tively critique the achievements of working through more modernist paradigms of disability, such asthe social constructionist model. (p. 233)

Meekosha and Shuttleworth (2009) locate the origins of this development with a general con-cern about the binary nature of disability studies and the impairment/disablement divide, a by-product of its simplistic materialist focus; the emergence of an interest in disability within thearts and humanities and an attempt by theorists to distance themselves from policy makers andservice providers who have sought to co-opt the social model and use it for their own ends. Atthe heart of CDS is a challenge to the very categories ‘disabled’ and ‘non-disabled’, and anattempt to break down the dualism impaired/non-impaired and explore how these dualismshave obscured connections between people with and without impairment. Their argument isthat, as we can have no unreconstructed access to the body, impairment, like disablement, hasto be viewed as a product of discourse. This approach contends that through this analysis, a cri-tique of the discourse that surrounds disability can emerge.

Goodley (2009) and Goodley and Runswick-Cole (2011) have been at the forefront of apply-ing this approach to disabled children. Goodley (2009) contends that in doing so:





we open up the disabled body to consider the careful ways in which parents and their children findpossibilities for lives that are clearly worth living. (p. 269)

Writers within this paradigm reject many of the biological labels applied to disabled people,arguing that they create an unnecessary divide between disabled and non-disabled people(Goodley, 2010).

CDS has been a useful and interesting development. It has enabled an exploration of thesimilarities that exist between disabled and nondisabled people, a point that is reinforced bythe Office for National Statistics (2010) survey. CDS have encouraged a critical view of cate-gories and this development has to be welcomed.

However, there are a number of dangers in this approach. It is, for example, hard to see howa theory that denies the existence of basic categories can promote the development of com-munities of resistance. If the categories of impairment and disablement are reduced to dis-course, discrimination and exclusion can become the effect of the beliefs held by individualsand social relations can be reduced to people’s understandings of them. An example of thisis found in Goodley and Runswick-Cole’s (2011) recent article on children and violence. Inthis article, much of what the children say about the violence they experience is subsumedin the theory and their very important testimonies lose their power as the promotion of thetheory behind the analysis becomes more important than the findings generated by thesedata. CDS has no conception of the real, and despite its calls for the recognition of diversity,it has done little to challenge the exclusion. It is hard to see how the approaches it advocatescan promote, improve, reform or radically engage with the inequalities, injustices and miseryexperienced by millions of disabled people around the world.

The way ahead: thoughts on a new approach to childhood disability

Many of the models and approaches to the disability issues discussed above are problematicin that researchers get bound up into a particular ideology. This can limit both the researchthey wish to do and the methods they adopt, and the freedom of children to represent theirlives in the way they wish to (Shakespeare and Watson, 2010). Disability cannot solely bedescribed as a health problem residing in the individual, nor is it solely the result of oppres-sive practices, and neither can it be reduced solely to discourse (Shakespeare, 2006). Rather,disability arises from the complex interaction between the person with an impairment andthe complete physical, human-built, attitudinal and social environment (Birkenbach and oth-ers, 1999). There are many different levels of analysis that can be applied to the study of dis-ability. With this in mind, writers such as Shakespeare (2006), Shakespeare and Watson(2001) and Shakespeare and Watson (2010) have been drawn to the writings of Bhaskar andother critical realists in their approach to disability.

Taking a critical realist approach to disability, Bhaskar and Danermark (2006) argue thatresearch on disability can be explored at the following levels:

� Physical� Biological� Psychological� Psycho-social and emotional� Socio-economic

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� Cultural� Normative

In the past, it could be argued that much of research on childhood disability from within the dis-ability studies paradigm has tended to engage with the latter three areas and has either down-played or ignored the first four categories. If we are to uncover what it is like for a child to livewith an impairment, all of these areas have to be explored as do the links that can be drawnbetween and among them. Table 1 shows a schema adapted from Shakespeare and Watson(2010) outlining the levels of intervention that any study of disabled childhood could focus on.

It is also important to point to the fact that many of these models and much of this workhave been developed in work with disabled adults. Whilst attempts have been made to applythem to the study of disabled children, the experiences of children may be different, and wemay need to look at developing new models that can allow us to explore what it means tobe a disabled child. The development of such a paradigm might include:

1. An approach that allows disabled children to contribute fully and actively to the researchagenda, enabling them to identify what they see as being the most important. Childrenshould be given the space to define disability in their terms to allow for the intersectionof childhood and disability. What is important to children may not be seen as importantto adults and vice versa. Whilst questions about their engagement with health and socialcare professionals, the rehabilitation process or the use of assistive technology are funda-mental, we also need to ensure that we ask children for their perspectives and allowthem to identify what it is that gives their life quality.

2. An approach that allows for the heterogeneity of disabled children’s social experiences.Disabled children live in a variety of social settings and as a result their experiences willbe many and varied. And neither disability nor impairment need be their defining char-acteristic. An approach to childhood disability should also include issues such as socialclass, gender, parental and family experiences, ethnicity and geographical location. Thepotential intersections that these factors may create with impairment need to be exam-ined.

Table 1: Schema of interventions for the example of a child with cerebral palsy

Domain Example of intervention

Political Campaigns for civil rights and welfare servicesCulture Leisure, sport and recreationSocial Advice, care and support services and social protection. Short break provisionEducation Going to a mainstream school, accessing tertiary educationEconomic Benefits, employment opportunities, parental supportEnvironmental Appropriate housing, accessible schools and barrier removalPsychological Counselling and peer support for both child and parentsTechnological Special seating, wheelchair provision and other aids to daily livingTherapeutic Rehabilitation, e.g. physical therapies and speech and language therapiesNursing Training in self care to prevent pressure soresMedical Treatment for pain and spasmPrevention and publichealth

Nutritional advice during pregnancy, immunisation, accident prevention, bettermaternity care, etc.

Basic science Stem-cell research in pursuit of cure

Source: Adapted from Shakespeare and Watson, 2010, p. 66.





3. An examination of the longitudinal nature of childhood, which takes into accountchange over time. Childhood is a time of rapid change and children and young people’sviews of themselves may change over time. We need to accommodate this fluidity andexplore changes associated with impairment that might occur as a result of age, such asincreasing mobility restriction and pain associated with their impairment, as well aschanges that occur with their ageing and development as they mature as children andyoung people. As young people age, they may become more aware of their own identityboth in terms of disability identity and in terms of their gender, their sexuality, their eth-nicity and their relationships with others.

4. An exploration of the category disability. Disabled children include those drawn from arange of diverse conditions such as attention-deficit hyperactivity disorder (ADHD), dys-lexia, Duchenne’s muscular dystrophy, spinal cord injury and cerebral palsy all of whichwill impact on children’s lives in different ways and many experiences will be highlyspecific to that particular group. For example, the medical dimensions of a progressivecondition such as Duchenne’s, the psycho-social subjectivities of cerebral palsy, or thecultural resonances of ADHD will all produce different outcomes; whilst there is somestrength in aggregating the disability experience, there is also a danger that issues ofsignificance may be lost.

5. An emphasis on disablement, oppression and exclusion and where possible, the develop-ment of approaches to challenge these. Disabled children face many barriers in theirday-to-day lives and we must ensure that any work in this area not only documentsthese but also, importantly, provides us with alternative strategies.

Through bringing together these five areas, a new approach to the study of disability in child-hood can emerge. All of these different elements interact and interplay with one another andwithout such an approach, there is a danger that only a partial understanding of disability inchildhood will emerge. The approach identified here would allow for the development of a morecomplete and nuanced understanding of disability in childhood, one that combines the social,the psychological and the biological without prioritising or privileging one over the other.

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Correspondence to: Nick Watson, Strathclyde Centre for Disability Research, Institute of Health and Wellbeing, Uni-

versity of Glasgow, Glasgow G12 8RT, UK, Tel.: 0044 141 330 3916. E-mail: [email protected]

Accepted for publication 25 May 2011

Contributors’ details

Nick Watson is Professor of Disability Studies and Director of the Strathclyde Centre for Dis-ability Research at the University of Glasgow. He has written widely on a range of disabilityissues including disability and childhood, disability and technology, disability and identityand disability theory.

202 Nick Watson




Documents

Theorising the Lives of Disabled Children: How Can Disability Theory Help?