FormalPara Key Points

  • Traditional models of resilience have often suggested that disabled children cannot be resilient.

  • Resilience is often conceptualised as an individual trait or quality of a human being.

  • We understand resilience as the dynamic interplay of the human and a host of resources around them.

  • Disabled children’s resilience is boosted through their networks and access to a host of resources including community participation and acceptance which seek to promote positive identities.

  • Disabled children experience their bodies and minds in ways that are deeply embedded in cultural scripts and societal stories of disability.

  • In the context of economic crisis and austerity measures, resources that support disabled children’s resilience are under threat.

Introduction

In this chapter, we question models of resilience that are built on the idea of individual normative development in spite of adversity or threat. We describe the limits of such an approach and its failure to take into account the cultural contexts in which resilience emerges. We further describe the ways in which traditional models of resilience have excluded disabled children from the category of ‘resilient’ child. We argue for a theoretical understanding of resilience underpinned by a social constructionist approach . A social constructionist approach to resilience allows us to recognise and celebrate resilience in disabled children’s lives, as well as revealing the role that a range of resources play in enabling resilience. Finally, in a context of austerity , we argue that it is vital to contest models of resilience that attempt to locate responsibility for developing resilience (or lack of it) within individual children and families, and to focus on the wider cultural and societal contexts that enable or stifle disabled children’s lives. Our work is informed by a research study, Resilience in the lives of disabled people across the life course, funded by the UK disability charity Scope (for information about the research visit: disability-resilience.wordpress.com. For information about the funder visit: https://www.scope.org.uk). Here, we focus on the experiences of disabled children and young people and their parents/family carers.

Childhood Resilience

In the global North, resilience is the popular contemporary term used to describe a person’s ability to ‘bounce back’ or ‘to succeed against the odds’ (Runswick-Cole and Goodley 2013). Discussions about resilience are often held in reference to children’s lives; indeed, childhood is constructed as a ‘sensitive period’ for the development of resilience (Masten 2001). A popular view dominates: children, when properly nurtured and parented, will build the resilience they need to cope with adversity in their adult lives (Lowe et al. 2015). At the same time, previous research indicates that it is important that children are not overprotected or completely shielded from risk and adversity as they may, then, miss the critical period in their development in which resilience must emerge:

[i]ndividuals are not considered resilient if there has never been a significant threat to their development, there must be current or past hazards judged to have the potential to derail normative development. (Masten 2001: 228)

The hegemonic view is that resilience can be boosted by others but, simultaneously, one has to overcome hardship in order to be considered resilient. Hence, resilient children will make resilient (and productive) adults (Masten 2001). In a time of austerity and economic crisis, the call for children (and adults) to build their resilience has acquired a new sense of urgency. And so, in England , the government has placed a particular emphasis on ‘character education’ in schools, including resilience building (Department for Education 2015). To conceptualise resilience as an individual quality is a classic functionalist account of the child and disability. Popular conceptions and governmental conceptions merge to individualise notions of resilience, capacity, bounceability and resistance.

Such a view of resilience jars with our politicised understanding of disability and childhood. As we have suggested elsewhere (Runswick-Cole and Goodley 2013, 2014), the application of individual, trait-based models of resilience in disabled people’s lives has often been problematic. Here, we re-articulate our call for a move away from traditional functionalist understandings of resilience, and draw, instead, on social constructionist models of resilience that view resilience as the product of social and environmental factors rather than individual (normative) development (Ungar 2004; Runswick-Cole and Goodley 2013, 2014) .

The Problematic Relationship Between Disability and Resilience

Two accounts of disability and resilience dominate—both of which are problematic for disabled children and adults. On the one hand, there is the view that disabled people can only be considered resilient if they achieve (normative) goals in spite of their impairments (Runswick-Cole and Goodley 2014). These reports appear in the popular media in England as ‘triumph over tragedy’ stories (Swain and French 2000). The Paralympic Games provided the press with a glut of such stories where disabled athletes demonstrated their resilience by achieving sporting excellence in spite of their impairments (White 2012). Carr (cited in White 2012) describes such stories as ‘inspiration porn’ allowing non-disabled people to ‘get off on’ stories of disabled people’s resilience. On the other hand, some disabled people are deemed unable to be resilient simply because they are (too) disabled—the presence of an impairment is enough to exclude them from the category of resilient (Runswick-Cole and Goodley 2014). For example, disabled children with complex needs are not seen, under trait-based and developmental models of resilience, as having the ability to bounce back or to triumph over adversity . Their impairments are conceptualised as inherently limiting; stifling the emergence of resilient behaviours and attitudes.

And yet, to add to the disability-resilience confusion, some disabled people are described as resilient simply because they have an impairment and are living ‘ordinary’ lives (Runswick-Cole and Goodley 2014). A story from our own experience illustrates this point well. We attended a conference with research partners to our current project Big society? Disabled people with learning disabilities and civil society (bigsocietydis.wordpress.com). The partners are members of a self-advocacy organisation who regularly deliver training to practitioners. At the end of their presentation, a member of the conference organising team came up to thank the presenters and said how ‘brave’ they were to have done their presentation. It seemed that the presence of the label ‘learning disability’ meant that there was an automatic assumption that the speakers had overcome some form of adversity (their learning disability) to deliver their presentation—despite the fact that presentations were part of their ordinary, day-to-day working life. There is something deeply patronising in the accreditation and identification of resilience.

We saw above that Masten argues that resilience can only emerge if a child has experienced ‘past or current hazards’, and that she goes on to say that those hazards must ‘have the potential to derail normative development’ (Masten 2001: 228 our emphasis). This positions disabled children, yet again, in an awkward relationship to resilience (Runswick-Cole and Goodley 2014). Often, disabled children acquire the label ‘disabled child’ precisely because their development has been judged to be non-normative—their development is ‘delayed’ or ‘disordered’. Understandings of resilience premised on notions of ‘normal’ development mean that many disabled children are automatically denied entry to the category of ‘resilient child’. Resilience research positions disabled children’s lives and experiences outside of what is considered to be the natural variation (Michalko 2002) making it impossible for them to escape the normative shadows that haunt their lives (Overboe 2004; Curran and Runswick-Cole 2014).

The Consequences of Failing to Be ‘Resilient’

A failure to meet the ableist standards set for entry into the category of ‘resilient child’ has potentially risky consequences for both children and their parents/family carers. As Ungar (2005: 91) points out, those individuals perceived ‘to lack resilience’ are often blamed for their ‘perceived lack of inner strength to overcome “their lot in life”’. Children who ‘lack resilience’ are ‘disruptive’, ‘disordered’ and ‘troubled’; while parents who fail to raise resilient children are deemed to have poor parenting skills and become the subjects of professional scrutiny and intervention (Lowe et al. 2015) as ‘troubled families’ (Department for Communities & Local Government 2012). A focus on resilience as an individualised character trait obscures the attitudinal, systemic and cultural factors that create difficulties in children and families’ lives (Young et al. 2008). In a time of austerity , this approach to resilience serves those invested in rolling back state support, because it is individual children, young people and families that are held to account, rather than the actions of governments and the provision of services (Goodley et al. 2014). And yet, resilience, as Masten (2001) describes it above, can only be defined by reference to set of culturally normal behaviours (Ungar 2004). And so, the failure to pay attention to the different cultural contexts in which resilience emerges clearly undermines the coherence of individual, trait-based models of resilience.

In contrast to such models of resilience, Ungar (2005) offers an explanation that takes into account the social and cultural context. He argues that there are ‘unique pathways to survival ’ (Ungar 2005: 91) and that the ‘[p]athways to resilience are a many splendoured thing’ (Ungar 2007: 19) (a quote we rather love). The promise of ‘unique pathways’ to resilience conceptualised as a ‘many splendoured thing’ opens up the possibility that disabled children , notwithstanding their seemingly non-normative childhoods (Curran and Runswick-Cole 2014), might gain entry into the category of ‘resilient child’.

Resilience as a Network of Resources

We follow Ungar (2004) in arguing that resilience can never simply be a matter of building individual capacity, it must also be a case of challenging social, attitudinal, cultural, economic and structural barriers which threaten people’s lives (Young et al. 2008; Runswick-Cole and Goodley 2013). In this view, resilience is: ‘the outcome from negotiations between individuals and their environments for the resources to define themselves as healthy amidst conditions collectively viewed as adverse’ (Ungar 2004: 242; our italics). This relational understanding of the phenomenon of resilience sits far better with our postconventionalist approach to disability which seeks to understand the promotion of human capacities through interdependent networks of support (Goodley 2014).

Following Ungar (2004 cited in Runswick-Cole and Goodley 2014), we identify these resources as:

  1. 1.

    Material resources: this refers to access to financial, educational, medical and employment resources, as well as access to meet more basic needs such as food and clothing.

  2. 2.

    Relationships: here, the focus is on relationships with significant others, including peers, adults and children/young people including family members and people from the wider community .

  3. 3.

    Identity : identity refers to a personal and collective sense of self. Identity is concerned with purpose, self-appraisal of strengths and weaknesses, aspirations, beliefs and values, including spiritual and religious beliefs.

  4. 4.

    Bodies : these resources refer to the influence of one’s body—including impairment—in relationships with others’ people and resources;

  5. 5.

    Power and control: here, the focus is on the experiences of caring for one’s self and others, as well as having a sense of being able to affect change in a person’s own social and physical environment perhaps to access health , education and community resources.

  6. 6.

    Community

    1. (i)

      Community participation: refers to having the opportunity to take part in the local community through a host of activities including recreation and work.

    2. (ii)

      Community cohesion: refers to feeling a part of something larger than one’s self whether this is a social or spiritual community.

  7. 7.

    Social justice : relates to having a meaningful role in community and a sense of social equality.

(Adapted from Runswick-Cole and Goodley 2014)

Each of these resources overlaps with and is interconnected with the others (Fig. 1):

Fig. 1
figure 1

A network of resilience

Full size image

Our exploration of resilience in the lives of disabled children and young people, described below, was informed by this theoretical understanding of resilience as a social construct.

Methodology

As we have outlined above, this chapter discusses a study carried out at the Research Institute for Health and Social Change at Manchester Metropolitan University with Scope, the UK disability charity, called Resilience in the lives of disabled people across the life-course (2011–2012). The project had a number of aims:

  1. 1.

    to explore what resilience means to disabled people at different stages across the life course;

  2. 2.

    to explore how resilience, or a lack of it, has affected disabled people’s ability to negotiate challenges and make the most of opportunities in their lives;

  3. 3.

    to understand what works in building resilience amongst different groups of disabled people;

  4. 4.

    to develop a toolkit for use by Scope’s policy and services’ functions that outlines what Scope means by resilience, what does or doesn’t work in supporting people to become resilient and what we can do to build resilience in disabled people throughout the life course.

These aims were explored through four research phases: a literature review, a life story phase, a focus group phase and a community of practice phase (Lave and Wenger 1991) in which disabled people and researchers worked together to produce a toolkit for use by Scope in their service delivery. Full details of the project, recruitment, ethical approval, methods, findings and outputs from the project, including research reports, can be found at: disability-resilience.wordpress.com. This chapter reports on the findings from the life story phase that included 11 interviews with disabled children and young people and 11 interviews with parents/family carers, with reference to aims 1–3 of the research outlined above.

The children and young people in the study had already acquired a wide range of impairment labels. A life story approach was adopted in order to enable children and young people to participate in the research (Goodley and Runswick-Cole 2012). Life stories offer insights beyond children and young people’s personal worlds, reflecting contemporary social, political, policy , service, community and family contexts in England as well as revealing the wider social, structural and cultural factors that shape disabled people’s lives.

Ethics

Following the principles of disabled children’s childhood studies (Curran and Runswick-Cole 2014), the research team took questions of voice seriously when listening to children and young people. We reflected on how we might respond sensitively and ethically to children and young people’s concerns throughout the research project (Cocks 2006). We were constantly checking if the participant appeared to be tired or fed up, and if they were happy to continue. Participants chose their own pseudonyms in the stories below. We did not rely on modes of research production that were dependent on speech alone, instead using photos, maps, drawings and simply spending time ‘being with’ (Morris 2003) children and young people.

Analysis

Our approach to analysis was underpinned by a theoretical approach to resilience based on the social constructionist model of resilience outlined above and developed by Ungar . Life story interviews allowed us to explore with storytellers, the significance of resources for resilience in their lives as well as the ways in which resources interconnect with one another. We read and re-read the stories drawing on the network of resilience above , to guide our readings.

Below, we re-tell the children’s stories in reference to the resources we identified above. We take each of the resources: material, relationships, identity , bodies and minds, power and control, community participation and cohesion and social justice , in turn.

Material Resources

I am 10, live at home with my mum and brother and sister in Northwest town. I go to school there. I have a cat called Riley and love playing Minecraft [a computer game]. My favourite food is chicken. I am very shy and don’t like noisy, crowded places. I pick things up quickly, but anxiety can make it difficult for me to talk to people. I don’t like being given direct orders, asking is better! I like my laptop, or something I really wanted and got. I like…my cat Riley, my computer and playing Minescape [a computer game]. Familiar people, places and routine – family; home; school; feeling welcome, included and valued; being clever. (Mark, disabled child)

My name is Annie, I am fourteen years old and I go to a special school. I live with my mum, dad and my brother who is eleven. My big sister, who is 23, lives nearby with her family. I love my mum and my dad and my sister and my brother very much. They say that I am happy go lucky, I smile a lot and that I teach them what the important things in life are. I like music – especially the Backstreet Boys and S Club 7 and Kylie Minogue to calm me down or the Eagles at night time. I like to try and take wet wipes out of their packet. I like throwing them behind me. (Annie, a disabled young person)

A safe and supportive home emerged as key conditions of a resilient life for disabled children and young people. While children and young people did not mention money, the benefit system nor the pressures of their parents’ balancing finances, they did talk about a host of material conditions of everyday life. These included prosthetics, and adaptive devices, such as wheelchairs, augmentative communication and hoists. They and their families reminded us that these devices are expensive and difficult to get hold of. When such resources are denied to disabled children and young people, their resilience and that of their family is severely reduced. If the resources needed to be mobile or to communicate are unavailable, this clearly also impacts on disabled children and young people’s sense of identity and self-worth.

Identity

Children and young people spoke to us about their developing a sense of being different from other children. While a disabled identity brings with it a sense of difference and otherness, children’s identities were also intimately tied to specific interests and activities that they were involved in. Children’s stories give a real sense of who they are through music, play and popular culture. At the same time, they remind of the complex ways in which identitie s are formed in a social world in which disabled identities are often viewed as lacking, deficient and Other. For many children, their encounters with notions of difference begins with the responses of other people to their bodies and minds.

Bodies and Minds

Childhood diagnosis may provide a functioning impairment label (Mallett and Runswick-Cole 2016) that allows services and professionals to respond to the needs of children. For others, diagnosis brings uncertainty.

So she has global developmental delay. They should just write down a paragraph which says ‘we have no idea what it is’! I’ve got a friend with cerebral palsy, I was sure Peppa had cerebral palsy too and I was banging on about it ‘please can we scan her?’ They scanned her and she doesn’t have it. But my friend said she had thought that Peppa had CP as well. But a colleagues of hers had told her ‘Oh well, of course, you’ve got cerebral palsy because when you were being diagnosed that’s what they called anything they didn’t understand and now they call it global developmental delay’, so it’s obviously it is just that same catch all the term ! But we’ve got better scans now so we can look at them and say ‘oh it’s not CP, after all’. (Janice, a mother)

We sat there and asked a couple more questions and with a big huff, the consultant said ‘listen Mrs ***** I can’t tell you if your daughter’s got cerebral palsy or not, what I can tell you is…’ and the words cerebral palsy drifted through the air, and at that point there was just this white noise and I could see her mouth moving, I don’t know what she was saying after that point, I didn’t listen…I didn’t know what cerebral palsy was, I didn’t know what it meant. I knew it was something drastic but I wasn’t sure what. As we travelled back in the car, Chris [partner] was swearing, he was saying she didn’t know what she was on about, she was grasping at straws. When we got home Chris disappeared. I found him upstairs on the computer and he had put ‘cerebral palsy diagnosis indicators’ into the computer. (Cate, a mother)

These dealings with health professionals around diagnosis have been widely documented in the literature (Larson 1998). Diagnosis both gives a label to difference (which might be viewed as a way of accessing services and support and, therefore, as positive), whilst potentially pathologising the child (which can be felt as negative). As we saw above, labels can play a powerful role when decisions are made about which children are, and are not, categorised as resilient.

Growing bodies are often precarious bodies. As bodies change this creates difficulties for their parents in lifting children and places greater demands for expensive adaptations. Families are marked by the stress of operations, hospital visits and rehabilitation that drain resilience (Murray 2000, 2003). The body is often understood by medical, health and psychological knowledges in very negative ways, and, yet the body is, also, a key site for the development of a resilient identity : an identity that is aware of one’s own body and the need for other people to respond supportively (Shildrick and Price 2009) . Children were very much aware of their bodies and had clear ideas about how others should touch, respond and respect them:

I am very shy and don’t like noisy, crowded places. I pick things up quickly, but anxiety can make it difficult for me to talk to people. (Mark, a disabled child)

I don’t like it when people have cross or loud voices Being in a busy shop without my headphones in. It is OK for me to go in there if you remember to put my headphones on before we do! (Annie, a disabled young person)

Parents/family carers played crucial roles in enabling their children to develop a positive sense of identity and shaping what it was possible for their children to achieve.

Brian and June told us:

We just decided that we would give Gabby what we would give to any of our children so she went to brownies, guides, she learnt to play the piano, she did ballet and tap. Obviously her achievement levels were lower but that didn’t matter, she was getting things back from it and she was learning. At six she started gymnastics and she went to her first games in Dublin when she was seven and she did gymnastics from seven to sixteen. She retired at sixteen but she still does swimming and fitness.…she has been to Russia, Estonia, Denmark, Germany and the United States.

Her parents’ support made it possible for Gabby to identify as an athlete.

As we can read from the visual network, the body is a key site through which a host of other resources are made visible from fighting for equipment ( social justice ), having an accessible shower room (material) and struggling to traverse inaccessible environments (community participation). The child’s body can only be understood in its social, cultural, community and relational context. Bodies disrupt environments and demand cultural change to enable children’s resilience to emerge.

Children’s accounts of their bodies reveal that the body cannot be separated from the world in which it is situated: bodies become known, marked, felt, understood and reacted to in relationships with others (Michalko 2002), and these relationships are always imbued with issues of power , control and communication.

Power, Control and Communication

Being supported in their communication is key to children having a sense of power and control in their lives. Children complained that they were not asked for their opinions. Instead, as is often the case in childhood, their views were spoken via proxies.

I do get involved in review [annual review of the statement of special educational needs] meetings, but it is hard to say when you are not happy with things, and they tend to have more meetings about me than with me. At the last review, there was some person on the list I didn’t even know, the reviewing officer or some woman! I do join in, they do ask me what I would like to say but their stuff comes first and then they ask me. (Diane, a disabled child)

Asad told us, in contrast, that the fact that his parents spoke English as an additional language, meant that professionals had to speak to him:

English is my first language but my mum and dad’s first languages are Urdu and Punjabi. So generally, when we met with doctors and so on, I would communicate with the doctors because my parents didn’t understand as much English as me. So professionals would explain it to me, tell me about where to get advice and so on and I would tell my parents . As I got older, my parents’ English got so that they understood.

Asad’s story reminds us of the importance of access to information in the lives of families of disabled children as a key resource in creating resilience (McLaughlin et al. 2008).

While acknowledging the limits of choice and autonomy afforded to (disabled) children, it is important to acknowledge the power, control and communication of parents and family members that is essential to supporting resilient childhoods: all the disabled children we spoke to cited their families as allies.

This raises important questions about advocacy and support in the lives of disabled children who do not live with their families or whose families are unable or unwilling to speak up for them for a variety of reasons, including the complexity of the systems and services on offer, living in poverty or the additional challenges faced if English is an additional rather than first language. If familial resilience undergirds the resilience of disabled children, then children without resilient families face significant threats . The importance of the role of wider communities in children’s lives is revealed.

Community

The children were keen to share with us how they liked to spend their time. These activities indicate forms of community participation that encompass specialist and inclusive contexts including respite and short breaks, playing on the computer at home, watching DVDs in your bedroom, eating chocolate, digging in the garden, getting dirty, eating fish and chips, and dressing up.

Children shared with us what might be seen as quirky and unusual interests and activities as evidenced by Annie:

I like it when a spoon drops on the ground – whoops!!

Their accounts broaden our understandings of childhood participation , play and leisure. Some children preferred quiet and solitary activities. Others were more interested in being with a crowd:

My perfect day: I would be with my family. I would get up slowly and everything would be very calm. I would listen to music all day and have the mirror ball going. I would be in the sunshine and I would be able to go on the beach and put my feet on the sand. Then I would go in the hydro pool and splash about and I would have a bath too and splash about in there – I’d play splish, splash, splosh! And I would eat LOADS of food! When I came home, I would have my thigh massages and stay up late! (Annie, disabled young person)

Children described community cohesion as the willingness of others to support them in their activities. Parents, and family carers play a crucial role in educating others in their community , while, at the same time, children are themselves resilient agents of change demanding social justice .

Social Justice

Disabled children, through their very presence, demand social justice:

We never used to complain, right letters, speak out, particularly, we aren’t the sort of people that would necessarily say, this is wrong. We’d probably have a chat about it, put our names down on petitions every now and again but to be on the front line fighting, you know is a rally awkward position for me and Craig to be in, and we’ve had to learn to be in that position. The only way I think we’ve managed to do that is by thinking in many ways this is not for us, this is for Summer and Summer can’t advocate for herself, and if we don’t do it then her life will be undoubtedly disadvantaged. So that has been really, really hard I think, learning to fight, when it’s not the actual kind of default kind of mode really. (Cate, a mother)

As the story above suggests, they have the potential to act as catalysts for the emergence of resilience on the part of their families and allies. The emerging resilience of children is enmeshed in their disabled identities and embodied differences. While children do not appeal to legislation or policy rhetoric, the underlying messages of rights-based practices and discourses were evident in their accounts.

As Annie put it:

I need people who…Care about me; Listen to me and learn from my family; Take the initiative; Fit in with my family; Follow my routines with food and medication and sleep’. And so to remind you some of the things that are important to me:

  • My family

  • Learning about me and what my needs are

  • Caring for me and about me

  • Fitting in with me and my family

  • Listening to me and my family

Clearly, the actions of all the adults in children’s lives, not just family members, were important. Sometimes, children described the ways in which adults created barriers for disabled children participation in schools and communities:

So I had a teaching assistant to support me in school from primary school until about Year 8 in high school, but I used to get really frustrated because the teaching assistants weren’t helpful. They just said: ‘you can be like everyone else if you just try harder’ and I felt confused, because I didn’t want to be like everyone else. I decided I had outgrown this sort of support. I don’t want a teaching assistant any more. (Jim, a young person)

At break time, I have to sit in a room with all the disabled children. I don’t really know why because, well I used to have to go to the toilet at break, but I don’t now. It seems like they’re trying to club all the disabled children together, we’re not ordinary friends, if I made an enemy of one of the people in there or something, if I had an argument with one of them, I’d still have to sit in there with them. (Diane, a disabled child)

These accounts demonstrate that all the adults in children’s lives, family members and practitioners, have a role to play in enabling or stifling disabled children’s resilience.

Conclusion

Childhood has traditionally been the site for research, exploring the nature and development of resilience. The ways in which resilience has often been characterised (normative development in spite of adversity ) is clearly problematic in the lives of children who have often been defined as ‘disabled’ by virtue of their non-normative development.

However, if we adopt a theoretical framework of resilience that:

  1. (i)

    accepts that resilience emerges when children and young people have access to the resources that allow them to feel resilient;

and

  1. (ii)

    accepts that there a numerous pathways to resilience. (Ungar 2004, 2007)

It then becomes possible to think of disabled children as living resilient lives.

As the children, young people and parent/family members’ stories here powerfully revealed, access to a range of resources builds resilience. In a context of austerity and every increasing cuts to services for disabled children, it is vitally important to resist attempts to locate responsibility for developing resilience (or lack of it) within individual children and families, and to defend the resources children and families need to lead resilient lives.