Disabled Children's Childhood Studies

Critical Approaches in a Global Context

T. Curran, K. Runswick-Cole, T. Curran, K. Runswick-Cole

• Publisher: Palgrave Macmillan
• Year: 2013
• ISBN:
  9781137008220
• Topic: Politics & International Relations
• Subtopic: Social Policy
• Index: Politics & International Relations

This collection offers first-hand accounts, research studies and in-depth theoretical explorations of disabled children's childhoods. The accounts oppose the global imposition of problematic views of disability and childhood and instead, offer an open discussion of responsive and ethical research approaches.

Part I

Voices for Creative Theory, Policy and Practice

The chapters in Part I provide the ‘call for the book’ from disabled children, their families and disabled adults reflecting on their childhoods. The authors have all been involved in thinking about and shaping the agendas for disabled children.

In Chapter 1, Stevie Tyrie tells us about her life, the things she likes, the things she doesn’t. She tells us what a ‘bad’ day would be for her but also what would make the day better, and she tells us what she thinks people around her need to know about her. Stevie’s story is given a context by Katherine, who explains how Stevie’s story was created with Stevie and her family. The chapter also reflects more widely on resilience in the lives of disabled children.

In Chapter 2, Billie Tyrie, Stevie’s sister, tells us her story. The story is based on a presentation given by Billie at the Child, Youth, Family and Disability Conference at Manchester Metropolitan University in May 2012. Billie tells us more than about her relationship with her sister as she also offers some considered advice for people working with disabled children.

Chapter 3, Freyja Haraldsdóttir tells us about growing up in the shadow of the ‘norm’. Freyja describes how she negotiated, with the support of her parents, her identity as a disabled young woman. Her story clearly illustrates the barriers she faced and the power of adults over disabled children’s lives and their failure to listen. She urges us to recognize that disabled children are ‘simply children’.

Chapter 4, Jo Skitteral reflects on her experiences as a disabled child and the impact they have had on her life as an adult. She challenges us to think ‘outside the problem box’ of disability and to throw some ‘pebbles into the pond’ in the hope that the ripples will challenge people to think again more positively and creatively about the lives of disabled children.

In Chapter 5, Linda Derbyshire describes her experiences as a mother of a disabled young woman. She picks up on the challenge to rethink disabled children’s childhoods as she explains how she has fought to make sure that expectations for her daughter Hannah were high. Using the very powerful metaphor of the mug and the teacup, she explains how she has fought other people’s low expectations of Hannah, and other disabled children, and demanded that she should never be given a mug, always a teacup and saucer.

1

My Story

Stevie and Cath, Colin and Billie Tyrie with scribing, introduction and reflection section by Katherine Runswick-Cole

Introduction

This chapter is Stevie’s story about her life as a disabled child in England. Stevie is five years old and lives with her family in a city suburb in the North-West of the country. Stevie originally told her story as part of a research project that one of the editors of this book, Katherine, was carrying 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 carried out between September 2011 and July 2012 in England. The project had a number of aims:

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

• 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;

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

• 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 phases of the research project: a literature review; a life story phase; a focus group phase; and a Community of Practice phase (Lave & 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, methods, findings and outputs from the project, including research reports, can be found in Runswick-Cole and Goodley (2013).

Stevie participated in the life story phase of the research. We adopted a narrative approach to the interviews. Life story methods have been used extensively in research with disabled people and their allies (Booth & Booth, 1998; Goodley, Lawthom, Clough & Moore, 2004; Goodley & Runswick-Cole, 2011; Runswick-Cole, 2007). The approach to life story research taken by the research team was underpinned by the belief that disabled people are experts in their own lives and that it is possible for all disabled people (who want to), including children, to participate in research (Goodley & Runswick-Cole, 2012). Crucially, here, disabled people are not seen as simply subjects of research but as active participants in the research process. And so, the participants were invited to talk about aspects of their lives that addressed the resilience research project aims, but they were also encouraged to share aspects of their lives that were important to them (Runswick-Cole & Goodley, 2013).

Life stories are rich and thick accounts of people’s lived experiences offering unique insights into personal worlds (Goodley et al., 2004), but they also move beyond individual narratives, giving access to the contemporary social, political, policy, service, community and familial contexts in which the stories were framed. Stories are never simply about individual lives; they also reveal the wider social, structural and cultural factors that shape disabled people’s lives (Runswick-Cole & Goodley, 2013).

Participants in the project were recruited from throughout the North-West region of England and from a range of urban and rural locations between November 2011 and March 2012. Information about the research was disseminated via a range of organizations including: disability-specific support organizations, pan-disability organizations, parents’ groups, carers’ groups, disability mailing lists and by word-of-mouth. Stevie’s parents heard about the project through a voluntary organization, and they talked to Stevie and to Billie about the family being involved in participating.

The research team took seriously the imperative to listen sensitively to children (Morris, 2003). We aimed to respond to their different communication styles in the interviews. We drew on the principles of the Mosaic Approach (Clark, McQuali & Moss, 2003), and used pictures, tours and drawings to support the interview process. Some children, including Stevie, chose to be interviewed with their parents/carers/siblings. Where this is what the children wanted, we adopted what we termed a ‘distributed methodology’ (Runswick-Cole & Goodley, 2013). A ‘distributed methodology’ meant that we aimed to combine ethically, sensitively and carefully the perspectives of the child with those of significant others in their lives.

We were cautious about adopting such an approach, not least because we are aware of research that has prioritized the views of children’s proxies over the views of disabled children themselves. So we sought to address the potential dangers here of adults’ and siblings’ stories dominating disabled children’s accounts. While we acknowledged these dangers, we hoped that the richness of narratives was further enhanced through the bringing in of disparate, distributed but interconnected voices.

From ethical approval to voice

Katherine met members of the Tyrie family a total of four times. Each time Katherine met with Stevie, she was constantly checking that Stevie was continuing to give her assent to the interview (Cocks, 2006). This involved watching Stevie closely to see if she was tired or fed up, checking with her and with her family that she was happy to continue, and that the interviews were conducted in a way in which the questions were clear to her and at a pace that she was happy with.

Stevie and her family decided that they were happy to tell the story using their names and as co-authors of the story, but the names of other people mentioned in the story have been changed to protect their anonymity. As a research team, we saw ethics as an active process rather than something that is signed off at the start of the research project (Cocks, 2006). As co-authors of this chapter the family are shaping the research process and are involved in creating the opportunity for the an approach that aims to give ethical voice.

Stevie’s story (told by Stevie Tyrie with Cath, Colin and Billie Tyrie)

My name is Stevie, I am five years old and I got a special school. I was born a bit too early and I like crawling and using my buggy. I live with my mum, dad and my sister, Billie, who is eight.

I love my mum and my dad and my sister very much. I have a best friend called Dan and I really like Dean, the head teacher at my school, Lily, my teaching assistant, Louise, my dinner lady and Mary the lady from [the voluntary organization] who takes me out.

People say that I am funny and kind and loving and good at listening. I like being tickled. I like playing with my sister – we play teachers. I like sitting on my sister’s lap. I like being read to and I like singing, but I don’t like it when other people join in. I like Charlie and Lola, The Little Princess, chocolate, bananas, Pig goes pop! and turning my light on and off.

I also like being in the garden, digging in the mud, getting messy and growing things.

And I like going to eat fish and chips at the furniture store’s cafe.

I like learning about colours and numbers and matching games. I like stories and I like dressing up and pretending to be a princess, or a fairy, a nurse or Frankenstein or a dentist. I want to be a dentist when I grow up.

I don’t like the noise of hand driers. I don’t like busy places with lots of people. And I don’t like the sound of the toilet flushing. I don’t like the squeak of balloons or the sound of them popping and I don’t like bumble bees, or wasps or flies because they buzz. And I don’t like mashed potato.

I also don’t like it if someone pushes me in my wheelchair by someone who hasn’t asked me if they can and I don’t like being tipped out of my wheelchair!

A bad day for me would mean I had to get up early and eat all my breakfast. I would have to get dressed and wear my splints. I wouldn’t be able to wash my hands or to get muddy. I would have to go to crowded places where people flushed toilets and used hand driers. And then I would have to go to a place where a balloon would pop and be taken out for tea at a place I didn’t know.

But, my day would be made better if I could watch a favourite DVD and have a cuddle.

If you want to support me, you can learn about all the things I like and don’t like, like toilets and hand driers. You can be quiet and cuddly. You must listen to me and get down to my level if you want to talk to me. Don’t talk for too long and sometimes you might need to explain things to me a bit more. You need to tell me what is going to happen and prepare me for new things, showing me a picture can help. And don’t forget my biscuit at bedtime!

So, to remind you of the things that are important to me and for me:

• My mum, my dad and my sister

• My friends and people at school

• That you know about things I like and don’t like

• That you are calm, quiet and kind to me

• That you listen to me

• That you help me to do the things I enjoy.

Reflections on Stevie’s story

Stevie’s story stands for itself; it paints a vivid picture of one disabled child’s likes/dislikes, favourite pastimes and least favourite things. And yet, although this is the story of the life of one disabled child in England, it reveals themes that are, perhaps, important for all dis/abled children: family; school; friends; music; food; toys; play; shopping; learning; being listened to; and having choices

Stevie’s story teaches us that resilience is not something that a disabled child simply has or doesn’t have. Resilience is a process and not an end point. Stevie’s resilience is negotiated in her relationships with other people and with the environment (Runswick-Cole & Goodley, 2013). Stevie feels resilient when she has her family around her, supportive friends and teachers, mud, singing and Charlie and Lola (a children’s television programme).

This understanding of resilience is different from ‘common sense’ understandings of resilience in childhood that focus on an individual children’s ability to ‘bounce back’ or to ‘do well’ in spite of difficult circumstances (Masten, 2001). It is also a view of resilience that challenges that assumption that to be resilient a child must conform to developmental and societal norms. Stevie’s story reveals that to be a resilient disabled child does not always mean doing what non-disabled children do.

Stevie’s resilience is revealed in her story. Her likes and dislikes are clearly articulated, and the important people and things in her life are shared. And yet Stevie’s story also touches on threats to her resilience, including: her growing awareness that her body is perceived ‘differently’ from other children’s bodies; people who help, but don’t ask; and difficult environments, including those with noisy hand driers and crowds. Sadly, these threats illustrate the disabling attitudes and barriers that disabled children meet in childhood.

Reflections on research methods

Stevie reminds us of the importance of listening to disabled children in research, in professional practice and in the home. Stevie’s story allows us to reflect on our aim to give ethical voice through the use of a ‘distributed’ story. The research team strived to present Stevie’s story carefully and sensitively in collaboration with her and her family. We have already described how we attempted to avoid adults’ and siblings’ accounts dominating the voice of the disabled child. However, we were also aware, as Clark et al. (2003) remind us, that the more imaginative the methods we use in listening to children, the greater the danger that we are invading children’s private worlds for our own purposes as adult researchers (Clark et al., 2003). This is a particularly sensitive issue for a group of children who already experience heightened levels of surveillance from the professions (including teachers, social workers, psychologists, doctors – among others) (Goodley & Runswick-Cole, 2012). We sought to address this issue by working with Stevie and her family to make sure that they were happy with how the story was shared.

Stevie’s story teaches us much about the life of a disabled child in England, but it also teaches us about the wider challenges and opportunities that working with disabled children in research can bring.

References

Booth, T. & Booth, W. (1998) Growing up with parents who have learning difficulties (London: Routledge).

Clark, A., McQuail, S. & Moss, P. (2003) Exploring the field of listening to and consulting with young children, RB 445 (London: DfES).

Cocks, A. (2006) ‘The ethical maze: Finding an inclusive path to gaining children’s agreement to research participation’, Childhood, 26, 13, 247–266.

Goodley, D. & Runswick-Cole, K. (2011) ‘The violence of disablism’, Journal of Sociology of Health and Illness, 33, 4, 602–617.

Goodley, D. & Runswick-Cole, K. (2012) ‘Decolonizing methodologies: Disabled children as research managers and participant ethnographers’, in S. Grech & A. Azzopardi (eds) (2012) Communities: A Reader (Rotterdam: Sense Publishers).

Goodley, D., Lawthom, R., Clough, P. & Moore, M. (2004) Researching life stories: Method, theory and analyses in a biographical age (London/New York: Routledge Falmer).

Lave, J. & Wenger, E. (1991) Situated Learning: Legitimate peripheral participation (Cambridge: Cambridge Unive...