Resilience in the lives of disabled people across the life course

Katherine Runswick-Cole, Dan Goodley & Rebecca Lawthom

Acknowledgements

We would like to thank Cate Fisher and her colleagues, at Scope, for all their valuable input into the project and to Kay Faulkner, at Manchester Metropolitan University (MMU), for her support throughout. Thanks also to the project board and reference group members at Scope and to the project board members at MMU for their insights. Lastly, we would like to say a special thank you to all the disabled children, young people, parents/carers and adults who participated in the project for their time and expertise.

Katherine Runswick-Cole, Dan Goodley & Rebecca Lawthom

Research Institute for Health & Social Change, Manchester Metropolitan University

© March 2014

All outputs from the project are available online:

http://disabilityresilience.wordpress.com/

Resilience in the lives of disabled people across the life courseContentsExecutive summary 11. Disability and resilience 22. Research methods 73. Resilient children 114. Resilient parents/carers 165. Resilient young people 226. Resilient adults 267. Older disabled people 318. Conclusion 35References 37

Executive summaryWe tend to think of resilience as the opportunities and abilities available to an individual, a family or a community to ‘bounce back’ from crises: to manage and overcome extreme or sustained adversity. But resilience is not simply an individual character trait that emerges through people’s exposure to crises. Resilience encompasses a range of psychological, social, material and other resources, all of which contribute to a person’s ability to positively adapt to challenging circumstances (Ungar, 2004: 242).

Resilience is constantly being made and remade in disabled people’s lives through access to material and non-material resources and through relationships with other people. These resources are not discrete categories, but are overlapping and deeply interconnected. Where disabled people’s resilience is weakened in one domain, other domains may come under increasing strain, or disabled people may be more exposed to weaker support in other areas.

Our research with disabled people at different stages of the life course has underlined the particular importance of viewing resilience in a holistic way. More widely, we believe that this study brings a new approach to the study of disability and resilience in the following ways:

by exploring the ways in which the experience of disability impacts on resilience and vice versa;

by placing understandings of resilience in a wider systemic framework in contrast to traditional psychological research that views this concept as an individual trait;

by revising and extending the work of Michael Ungar – a leading international resilience researcher;

by positioning resilience in a networked and life course approach; by combining ‘social’ approaches to disability and resilience

research.

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1.Disability and resilience Resilience is not an individual character trait; it’s the network of

resources and relationships that support disabled people in different areas of their lives.

Exploring disabled people’s networks of resilience can help us better understand the impact of change on disabled people’s lives.

Our research has explored these experiences with a number of disabled people at different stages of the life course.

We tend to think of resilience as the opportunities and abilities available to an individual, a family or a community to ‘bounce back’ from crises: to manage and overcome extreme or sustained adversity. But resilience is not simply an individual character trait that emerges through people’s exposure to crises. Resilience encompasses a range of psychological, social, material and other resources, all of which contribute to a person’s ability to positively adapt to challenging circumstances (Ungar, 2004: 242).

Research into resilience has steadily increased, but the discussion of resilience in disabled people’s lives has often been unhelpful at best and counterproductive at worst. One reason is because disabled people are often described as resilient only when they achieve in spite of their impairments. Another is that disabled people are all too often excluded from the category of resilient persons simply because they have an impairment. The reverse is also true: some disabled people are automatically viewed as resilient just because they have an impairment. Moreover, a lot of resilience research has focused on resilience in the lives of children (e.g. Young et al., 2008), rather than on resilience across the life course.

Resilience is constantly being made and remade in people’s lives in their relationships with other people and the access to resources available to them. These resources are not discrete categories, but are overlapping and deeply interconnected (see Figure 1).

Building on Ungar’s (2004) work, we have produced our own (social) model of resilience. Social, political and economic changes can have a profound impact on disabled people’s networks of resilience. Our model recognises the importance of these contextual factors in determining the level of resources available to disabled people and the way they interact with them.

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Figure 1: A network of resilience

A network of resilience includes material resources in the form of availability of financial, educational, medical, and employment opportunities or assistance, as well as access to food, clothing, and shelter to meet basic needs. At a time of economic restraint, however, material resources become scarce resources, and the material resources which disabled people are able to call upon at crucial moments may be diminished.

Relationships with significant others – peers, adults and children/young people within one's family, community and the workplace – can also be affected. For example, inaccessible transport or fewer accessible leisure options may limit a disabled person’s opportunities to socialise with family and friends, isolating them from crucial support networks in times of need. Greater social stigma can limit opportunities to form new relationship, and make it harder for disabled people to find new ways to participate in social, economic and community life in response to changed circumstances. These opportunities are also influenced by one’s body and the ability to manage one’s condition, and especially through other

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people’s perceptions of disabled people’s impairments.

Disabled people face structural and attitudinal barriers which can affect their independence and shape their personal and collective sense of identity. This includes self-appraisals of strengths and weaknesses, and aspirations, beliefs and values. A strong sense of who you are and what you are capable of can be crucial in managing changing and challenging circumstances.

Recent social and political changes have had mixed effects on disabled people’s power and control. This is evident in disabled people’s experiences of caring for themselves and others, and the ability to effect change in their social and physical environment in order to access educational, community, health and employment opportunities and resources.

Community participation involves taking part in one’s community through a host of activities, such as making use of public spaces, helping friends and neighbours, meeting people at leisure facilities, using libraries and voting at the local polling station on election day; social justice entails experiences relate to finding a meaningful role in one’s community and a sense of social equality; and community cohesion involves balancing one's personal interests with a sense of responsibility to the greater good.

We all vary with regard to which of these resources are most important to us, but taken as a whole the network of resilience is a highly relevant framework. It urges us to consider both the explicit and the less obvious effects of current social, political and economic changes on the lived experiences of disabled people.

Where disabled people’s resilience is weakened in one domain, other domains may come under increasing strain, or people may be more exposed to weaker support in other areas. The benefit of this framework is that it helps mitigate the risk of resilience being viewed in compartmentalised ways.

More widely, we believe that this study brings a new approach to the study of disability and resilience in the following ways:

by exploring the ways in which the experience of disability impacts on resilience and vice versa;

by placing understandings of resilience in a wider systemic framework in contrast to traditional psychological research that views this concept as an individual trait;

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by revising and extending the work of Michael Ungar – a leading international resilience researcher;

by positioning resilience in a networked and life course approach; by bringing together the social model of disability and a social

approach to resilience.

This report focuses on three key questions:

What does resilience mean to disabled people at different stages across the life course?

How does resilience, or a lack of it, affect disabled people’s ability to negotiate challenges and make the most of opportunities in their lives?

How can different groups of disabled people be supported to develop the resilience they need?

In the sections that follow, we discuss the experiences that disabled people described to us during the research. Each section is dedicated to a particular stage of the life course: disabled children and their parents/carers, disabled young people, working-age disabled adults and older disabled people. However, we also recognise that there is a lot of overlap between different life stages, and these interconnections come out in the narratives.

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2.Research methodsSUMMARYThe study was carried out in four phases:1. a literature review;2. life story interviews with 42 disabled people (aged 5-83);3. focus groups with 3 groups of disabled people (people of working

age; parents/carers of disabled children; young people);4. a community of practice phase with disabled people where we

developed a toolkit.

Literature review

The review employed a mixed approach using a combination of manual and automated searches to conduct a review of academic, third sector and think tank reports on resilience; domestic and international government strategies and initiatives to increase resilience amongst individuals, groups and communities; and interventions (in public, private and civil society) that have been used to increase resilience.

Life story phase

Ungar (2005: 90) suggests that it is helpful to 'story' resilience in order to examine the place and meaning of resilience in a person's life. His call to use stories and narratives to explore resilience in the lives of marginalised groups is particularly helpful in a study focused on the experiences of disabled people. Disability researchers have often used narrative methods such as life stories, life histories and personal anecdotes as appropriate methods for listening to marginalised voices (Goodley, 2000; Goodley et al., 2004). Indeed, Ungar (2005: 89) reminds us to stop using ‘pathologising language’ and to ‘hear’ the stories of resilience people tell. It is in this way that we can ‘honour’ diverse lives. Ungar (2007) suggests asking questions in everyday language and in ways relevant to the storyteller. For example: ‘what's important to you, your family, and community? What do you value? What parts of your life do you prefer?’ and ‘The labels that others place on you, how do they add to, or take away from, the story you tell about your identity as healthy?’ (Ungar, 2005).

The life story phase was guided by a reference group of disabled people and by project board members at Scope and at Manchester Metropolitan University. All narrators understood their rights to confidentiality and anonymity in the research process and the right to withdraw from the research at any time, without having to give their reasons. Interviews were audio recorded with narrators’ permission. All participants were

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given copies of the interview transcripts and the life stories were constructed in consultation with them.

Participants 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 organisations including: disability specific support organisations, pan-disability organisations, parents’ groups, carers’ groups, disability mailing lists and by word of mouth. Participants who self-identified as disabled people were included in the study and this included people who identified with a range of impairment labels including: physical impairments, the label of learning disability, life-limiting/ threatening impairments and mental health service users. As our initial sample had failed to include people who use assisted and alternative forms of communication (AAC), we recruited a group of three young people who use AAC to a small focus group to supplement the life story phase of the study. We were subsequently able to interview one young person who used AAC.

We interviewed:

5 disabled children (under 15) 6 disabled young people (15-25) plus a focus group of three young

people who use AAC 11 parents/carers of disabled children 8 disabled people of working age (26-64) 5 older disabled people 6 disabled people with degenerative/terminal conditions

Our approach to analysis was underpinned by an understanding of resilience based on the social constructionist model of resilience developed by Ungar (2004; 2005). The life story interviews allowed us to explore with narrators the significance of the resources for resilience in their lives, and the ways in which access to these resources impact on people leading fulfilling lives. We also explored how the interconnections between resources might impact on potential in a person’s life.

More information about this approach is available at: http://disabilityresilience.wordpress.com/

Focus group phase

The focus group stage of the research was developed in order to explore the findings from the life story phase of the research with groups of disabled people. We identified three focus groups from among Scope

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service users: a group of six adults; a group of eleven parents of disabled children and a group of two disabled young people (one of whom used AAC). Each focus group met once to explore and make sense of the life story phase. Anonymised vignettes from the life story phase of the research were used to stimulate discussion.

Real names were not used in transcription material and any data that had the potential to identify people was changed or removed on a case-by-case basis. At no point in any of the data analysis did the research team identify individual participants or third parties not actively involved in data production. 

With the data from focus groups we drew on a thematic network analysis approach (Attride-Stirling, 2001). This approach to analysis allowed us to develop themes and sub-themes to facilitate data analysis. This analysis was also guided by the project boards at Scope and Manchester Metropolitan University and the project reference group at Scope.

Community of Practice phase

The Community of Practice phase of the research was an opportunity to bring together the knowledge held by disabled people, academics, practitioners, children/young people and parents/carers together to form a ‘Community of Practice’ (CoP) (Lave and Wenger, 1991). This approach is at the heart of what has been termed emancipatory disability research (see Goodley, 2000), where disabled people work as co-researchers. The CoP brought together co-researchers to discuss specific resilience resources identified in the analysis carried out in phase 2 & 3 of the research. The CoP met for two full-day meetings towards the end of the project.

In order to support the workshop day, we used a creative engagement tool: ketso kit (see www.ketso.com). The kit consists of a set of tabletop tools that can be used to capture and display people's ideas. There are colourful ‘branches’, ‘leaves’ and other materials, which can be placed on a felt workspace and easily moved around as the discussion changes. Our CoP worked together to develop a resilience toolkit.

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3.Resilient children: bodies, bedrooms and champions

SUMMARY

Diagnosis acts as both a passport to resources and a barrier that means expectations are low.

Accessible homes and environments are important to children. Bodies matter. Parents/carers, siblings, friends and professionals can all act as

children’s champions and the expectations and aspirations of adults around them impact significantly on the lives of disabled children, sometimes in positive ways, sometimes in more negative ways.

Communication is the key to children having control in their lives. Participation does not always mean doing what ‘non-disabled

children’ do.

Diagnosis

For some families, diagnosis provides a functioning impairment label (Mallett and Runswick-Cole, 2010) 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 obviously it is just that same catch all term! (Janice, mother of Peppa, 5)

One key observation made by parents/carers was the ways in which a diagnosis both gives a label to difference (which might be viewed as positive) whilst potentially pathologising the child (which can be felt as negative). Any conception of resilience, therefore, must be mindful of the significance of labels of difference and the label’s influence on the person

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and others’ perceptions of a person with a label.

Accessible homes and environments

For children, an inclusive home captured by a ‘good bedroom’ and a supportive family emerged as key conditions of a resilient life. Unsurprisingly, children did not mention money, the benefits system or the pressures of their parents balancing work and family life. They did, however, display coherent knowledge about a host of material conditions of everyday life. Children cited the importance of prosthetic and adaptive devices (such as wheelchairs, augmentative communication and hoists). They and their families reminded us that these devices are expensive but essential:

You need to learn all about me. There is an information pack in my home which you need to read carefully and slowly, take your time, and ask my mum, my dad, my sister or my brother if you are unsure. To keep me safe, read all the information about me. I need resources – like a hoist and a special bath. (Annie, 14)

Safe, comfortable and accessible environments are crucial to disabled children’s resilience.

Bodies matter

As children grow their bodies can create uncertainties. As a disabled child gets bigger this might create challenges for their parents and place greater demands on responsive and suitable adaptations. These adaptations can be expensive, often dependent on disability benefits and can be difficult to access. Some disabled childhoods are marked by the stress of operations, hospital visits and rehabilitation (Murray, 2010) that drain resilience. All of these experiences lead to a sense of bodily difference as, in many cases, the body is understood by others in 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). The body can be seen as a key site for children defining who they are and reminding people of how they should respond to their bodies:

I don’t like being pushed in my wheelchair by someone who hasn’t asked me. Being tipped out of my wheelchair! (Summer, 5)

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!

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(Annie, 14)

Positive understandings of disabled children’s bodies and appropriate responses to them (including providing adaptations and equipment) are key to disabled children’s resilience.

Children’s champions

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

Looking back at her life, Beatrice told us how her parents’ expectations of her had crucially shaped her life in promoting her resilience:

One of my cardiologists made a comment to me once, she said “you know most congenital heart patients kids don’t move out of their parents’ house. It’s like pretty phenomenal what you have done” and my response was: “I didn’t really know there was any other option”. I didn’t ever really realise that I could have just sat at home and felt sorry for myself because for my parents absolutely that was never one of the options and I am really glad about that. It’s like I wasn’t treated differently – I mean I know that I was, I know that I was treated differently, but not to the best of their ability, no I wasn’t. (Beatrice, early 30s)

Parents/carers occupy a key role in promoting their disabled children’s resilience – resilient families support resilient children.

Communication

Despite the host of legislative and policy changes since 1989 to promote the voice of the child (UNICEF, 1989), disabled children complained that they were still 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, 12)

When disabled children are not able to communicate, they are, inevitably, denied opportunities to develop resilience.

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Participation

Children alerted us to the way in which resilient activities need not necessarily involve doing what other (non-disabled) children do. Some children preferred quiet and solitary activities. Others were more interested in being with a crowd. Annie told us about her 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 massaged and stay up late! (Annie, 14)

Accepting and respecting the differences between children is crucial to promoting resilience in their lives.

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4.Resilient parents/carers: social justice, tricks of the trade and ‘challenging the norms’SUMMARY

Parents/carers continue to face considerable barriers to work including lack of affordable and appropriate childcare and flexible work.

Parents/carers describe the ongoing ‘fights’ they have for their children in terms of accessing education, health and social care. Paradoxically, they described these fights as both contributing to building and draining their resilience.

Peer support matters. Parents/carers rethink their understandings of ‘normal’ bodies and

‘typical’ development.

Benefits and services

It could be argued that the labour of parenting is truly one of material labour. Parents and carers told us that they are constantly engaged in fights for financial, physical and structural support. Parents/carers are potentially plunged into a lifetime of labouring for the material needs and rights of their children. The process of accessing Disability Living Allowance (DLA) (which is gradually being replaced by the Personal Independence Payment) and other benefits is a huge struggle often identified by parents as a torturous process (Goodley and Runswick-Cole, 2011). For some parents/carers the very process of ‘playing the game’ to access benefits and short break support required them to clearly display a lack of resilience by focusing on their difficulties ‘coping’. Indeed, the present system of accessing benefits and support puts family resilience at risk as parents/carers find themselves in the demoralising position of having to put forward the worst case scenario in order to access minimal amounts of support – and sometimes no support at all (Murray, 2010):

When we had the social work assessment, a friend had warned me that the only way you are going to get a short break is to say that you are having a breakdown. I didn’t believe that could be right – it is ridiculous. But the social worker sat there and said: “I need to ask you one final thing, are you on the verge of a breakdown or is your relationship?” I could not believe that this was part and parcel of the assessment, because I could lie to her, and then presumably she’d tick the box and I’d get the

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hours, or I could sit there and I could say to her “no” and then she could go away and deny us the hours. This is like a ridiculous trap almost for parents to fall into. So I said to her: “well, if you’re asking me, are you or is your relationship going to have a break down if you never give us any support then the answer is yes. If you’re asking me am I on the verge of a breakdown right now at this very point in time the answer is no, but given that if you don’t give us any support then the answer would be yes, then if you go away from here today and don’t give us any support then I will be on the way to that, yes, and that’s as honest as I can be with you”. She looked a bit flummoxed and she said: “well, right ok”. And I thought I’m not sure how she’s going to interpret that but I can’t lie (Cate, mother of Summer, 5).

Cate’s story reveals the drain on family resilience that fighting for services brings.

Barriers to work

We know that four in ten disabled children live in poverty and that 65% of those children live in extreme poverty (The Children’s Society, 2011). Although work-life balance is a perennial problem for all families it can be especially challenging for families with disabled children. Only 16% of mothers with disabled children work, compared to 61% of other mothers.1 A significant barrier to work is the lack of appropriate and affordable childcare.

I employed three new girls last Christmas through an agency and paid for them out of the direct payment account. One of them ended up being somebody that was on Facebook all the time and it didn’t work, so she went. The other girl’s boyfriend smashed her car up so she couldn’t come to work and then the other girl got a full-time job in a school but still wanted to come and didn’t want to leave us. So consequently, I have got nobody that could help me to actually hold my job down. So now in my responsible job [as a nurse] I was letting the ward down so I went to my manager told her “I can’t do this I don’t know what I am going to do but it’s going to make me very sad to give up”. She gave me time to try and sort it out so I had a month off to try and find some new people which I employed via another agency and that is just starting now. And that’s exhausting in itself because you have now got to teach them everything that you do and it’s in your home. They’ve transferred me from staff nurse to bank staff now and I’ve been off work, so I’m back on Carer’s Allowance, so

1 See http://www.cafamily.org.uk/professionals/research/statistics.html (accessed on 22 February 2012).

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there is a financial strain on the family now. (Molly, mother of Annie, 14)

Parents of disabled children reported the attitudinal barriers that prevent parents of young children from working:

If you’ve got an employer who knows that [someone has] got a disabled child, how flexible are they going to be? They need to be quite flexible and some employers aren’t. (Alex, parent)

Caring responsibilities were also identified as barriers to work:

Even I wouldn’t employ me, five doctors [my child and I] see a month, who is going to employ me? (Charlie, parent)

For parents of disabled children, work is about much more than bringing in money to the family home. As one parent said:

[without it] you lose your identity, work is more than just bringing money in. You just want a life like everybody else. (Charlie, parent)

Parents/carers tell us that work can play a key role in building family resources but that barriers to their working remain in place that threaten family resilience.

Services and information

Managing relationships with professionals and accessing information in order to feel that parents had power and control in their lives was a key issue for parents and crucial to their resilience, as Nancy explained:

It has been really difficult for me. I’ve come as near to a nervous breakdown as you can without actually having one. I would say to other parents that you need information, information, information; get to understand the system. And learn to dance with the professionals; people say it is a fight, but it is more of a dance and if you dance slightly differently the outcome will be different. So keep dancing! (Nancy, mother of Mark, 10, and Greg, 17)

Access to services and information are key to capacity building.

Peer support

Parents/carers of disabled children described feeling marginalised in their communities and as a result peer support from other parents/carers was a key resource for building capabilities in their lives.

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I have only really accepted my condition after being at [parent support group] before this, I would never have accepted my condition, I just wanted it to go away, any operation to get rid of it but now I accept it. (Morgan, parent)

I don’t think I have any friends now that don’t have children with disabilities. (Sam, parent)

There was a sense that support groups led by and for disabled people and their families were the best source of support: ‘parent led parent forums do best’ (Sam, parent). However, parents/carers also highlighted the difficulties of building and sustaining peer support mechanisms:

What usually happens with parents of disabled children who run support groups, what happens when they crash? … There needs to be someone else there to keep it going while you rebuild. (Charlie, parent)

Enabling peer support is crucial to building resourceful families.

Challenging ‘norms’

The concept of a ‘normal’ progression towards the future is troubled by disability:

A health visitor sat in this room with us and said: “You can’t run with it Molly, in the next two years, you will piece together her milestones what her future may or may not be”. So I went straight out and bought a puzzle and I put a piece a day in for two years to build a picture. I didn’t know what the puzzle was, it just happened to be Austria where we had taken [my older daughter] when she was tiny. We built that puzzle but, when the two years were up, there were two pieces missing so we never completed it and to me it was a guide that we were never to know how it was going to be. We won’t know how Annie is going to be or if she is not going to make it or whatever. (Molly, mother of Annie, 14)

It could be argued that parents/carers are drawing on, and contributing to, a more enabling conversation about disability: where disability is seen as an opportunity for celebration rather than for mourning.

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5.Resilient young people: Web 2.0, activism, community participation and cohesion Material resources become a key issue as disabled children grow

older. Disabled young people are politicised and are engaged in new forms

of community engagement including Web 2.0. Barriers to communication persist for disabled young people. Access to transport remains difficult for disabled young people. Young people are involved in creating and contributing to new forms

of community participation.

Material resources

In contrast to children, who did not directly mention money, access to material resources becomes a key concern for disabled young people as they navigate a host of transitions – from home to university or work and from informal care in the home to formal care in independent living environments (Brownlow and O’Dell, 2007; McLaughlin et al., 2008). The young people’s stories speak of access to material resources like benefits, housing and assistive technologies but these are entangled with relationships and identity as young people move from family care to independent living:

I’m moving into supported living and it’s working out ok. Mainly, I’ve got things transferred into my name, but the difficulty is that my mam’s had the benefit before, or certain parts of it like the Disability Living Allowance component. It’s quite difficult for me to say to my mam: “well actually, you know these are my benefits and I’m going to start needing them now”. They don’t give you a manual or anything on how to approach the subject! And the reason she hasn’t been able to have a full time job is because she’s been caring for me, so it isn’t a very nice situation for my mam. But I’m twenty-three now and I didn’t want to wait until I was forty and think ‘well, I didn’t try to live on my own’. I think having my own space will be beneficial to me. (David, 23)

Material resources are crucial to young people’s capacities.

Politicised disabled young people

I went to the Hardest Hit rally in [city] in October; I’m also campaigning against disability and benefit related cuts, mainly on Twitter. I’m also, scarily, thinking about standing as the

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disability rep at the [Student] Union next year. (Lucy, 25)

I’m a big social network user, I found out about this research from Twitter. I feel it has been a really useful way of me finding out information. If you’ve got a question or anything, people – you’ll ask people and they’ll give you some answers. If you’re behind a keyboard and able to voice your opinion that way, it’s much easier than going to a demonstration. I wouldn’t go because I wouldn’t want to put myself at that risk. (David, 23)

There is no doubt that social networking provides new forms of community participation (Brownlow and O’Dell, 2007; McLaughlin et al, 2008). It has been argued by political scientists that the use of Web 2.0 technologies such as social networking, blogs, wikis and file sharing has the potential to connect activists globally. Political activism represents an important way of disabled young people exercising power and control in their lives and engaging in the pursuit of social justice, and a key resource in enabling disabled young people to be resistant, politicised and engaged.

Communication, communication, communication!

Disabled children told us that they need to be listened to and this theme was echoed by disabled young people. Joseph told us that he would like more money available for communication aids like his and that he thought that the government should find the money for this. Martin and Adrian also wanted other young people to have support with their communication. Hayley had been given a communication aid at 16 but without the support to learn how to use it (Goldbart and Marshall, 2004)

she was 18 before she was able to use it to support her communication. She described how she felt when she was finally able to communicate using her aid as ‘beautiful’. Like many young people with communication impairments (Goldbart and Marshall, 2004), Hayley had her own communication method that she used at home with her family, but access to a communication aid was vital to building relationships beyond her family. Communication is inextricably linked to social inclusion and this is illustrated by the fact that Hayley will be moving to a mainstream college in the next academic year where her wish is to ‘meet new people and try new things’.

The significance of technology – be it Alternative Augmentative Communication (AAC) devices, iPads or Web 2.0 forums – is that it promotes collective and individual well-being which is a key element of building a network of resilience.

Barriers to transport18

Problems with accessible transport were identified as a key barrier for all disabled people throughout the life course but Rachael gave this example of how it impacted on her life:

More than anything it is the issue of accessible transport that does my head in! A lack of transport holds you back. The tube isn’t accessible and although I live near an Overground rail station, I have to book assistance 24 hours in advance to get on a train – nothing is spur of the moment, you always have to plan. And the attitude of some of the staff is just rubbish. If you don’t book ahead, you get grief from the staff and the fear of getting grief worries me if I don’t book ahead. I feel like I should say something to them but that I can’t because I rely on them. There was one time when I hadn’t booked assistance in advance and the local station told me that there would be no staff to help me after 9 o’clock at night but at 10.30 the staff were still there. If there are no staff to assist you, you sometimes have to catch a later and often a slower train, and so that really adds to my journey time and, of course, means paying for extra time for my Personal Assistant too. Transport is one of those daily things that really wears down your resilience. (Rachael, late 20s)

Inaccessible environments continue to limit the opportunities of disabled young people. For young people, like the group of AAC users we met, who use large wheelchairs and need access to a ‘Changing Places’2 toilet to go out for the day, accessible environments are limited. Large shopping malls and supermarkets are often the only accessible places. For disabled young people, inaccessible transport and the lack of accessible environments continue to be barriers to the material resources they need to thrive.

2 Changing Places toilets provide hoists, an adult-sized changing bench and space for disabled people and their carers. See http://www.changing-places.org/

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6.Resilient adults: social justice, work and the emergence of the body/mindSUMMARY

Material resources are a key issue for disabled people of working age.

Strong relationships with families and communities are also important, and disabled people make positive contributions to their families and to their communities.

Working-age adults face increased competition for work and jobs and many have fears about changes to work benefits, disability benefits and social care.

There is also an increased awareness of a culture of disablism: reflected in hostile newspaper articles and ‘comedy’ programmes.

Material resources

At a time of high unemployment, economic restraint and government policies to move people off benefits and into work (Wood and Grant, 2010), while at the same time reducing the amount of government money spent on social care (Brawn et al., 2013), access to material resources is a key issue for disabled people of working age. The material foundations needed to be able to weather difficulties are under threat. It was suggested by participants that increased competition for jobs, the high incidence of unemployed graduates and cultural anxiety about “benefit scroungers”3 make the reality of work ever more difficult for disabled people.

People don’t help you …. You try to do voluntary work to try and get yourself better, to try and help, but no one seems to want to give you a job. If they could help you with finding a job that you could cope with and you could manage and they had some understanding of your illness then it would be helpful but there is nothing like that. We will take your money off you and no one will help you. (Jordan)

Work plays a complex role in supporting people to flourish.

Making a positive contribution

3 See, for instance, www.diaryofabenefitscrounger.blogspot.com/

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Disabled people’s experiences of work were varied and challenge assumptions about what work might mean in the lives of disabled people. Just as parents of disabled children found themselves ‘challenging the norms’ in relation to their children’s developing bodies and minds, disabled adults also challenged normative notions of work and what it means to make a positive contribution through work, as Neil’s story reveals:

Neil has the label of PMLD [profound and multiple learning disabilities]. His parents were told that they should leave him in an institution because he would ‘destroy their marriage’. His mother who was six months pregnant at the time was offered a termination so that she did not bring another child ‘like that’ into the world. Neil is 28, he lives in his own home with support from carers and he has a job. For one hour each day, he takes the post from a local business to the post office. He has just learnt to carry the parcels by himself.

It is also worth noting that as well as disabled people being in employment, many disabled people are themselves employers, managing their own personal budgets and supervising staff.4

Fear and anxiety

The changes to the benefits system, such as the transition from Incapacity Benefit to Employment and Support Allowance (ESA), mean that disabled people and their allies (including families) are facing changes to their services and support. This leads to a good deal of uncertainty:

I’m on ESA but I don’t know for how much longer. I’ve just been for my medical [Work Capability Assessment]. I had my assessment here about three weeks ago … It was the things I was asked to do, I don’t have any mobility issues, except I have ME so if I keep doing things I get tired. So I did the exercises [as part of the assessment] that you are asked to do and so obviously you worry then that it is going to go against you because I can do them. But obviously, you want to go in there and be honest so I’m waiting to hear … And it is frustrating because I want to get back to work. (Jordan)

Engaging with the benefit system can also lead to high levels of anxiety:

4 Indeed, ignorance around disabled employers has been addressed by The Association of Disabled Professionals that offers advice, support, resources and general information for disabled professionals, entrepreneurs, students and employers. See http://www.adp.org.uk/ for more details.

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The doctor came to my house [for an assessment for DLA] and I was ill in bed. And he came in and said “oh your hair looks tidy”. I don’t even blow my hair, I just comb it and leave it. And I thought ‘what has my hair got to do with it, why is he asking me these things?’ … When the report came back … I nearly had a nervous breakdown. They took everything off me – I had a mobility car, they came and took it away. I was left without a car. I was so stressed … Everybody who knew anything about me were absolutely livid … I had to wait with no money for ten months for the appeal. When I went to the appeal I was very ill, there were doctors, a solicitor, someone from social services and they took one look at me and apologised. They’d looked at my reports … and it was all given back. … I saw the doctor recently, he said I need the higher rate care component for DLA. I said “I’m not going for that, I’m too scared.” (Sophie)

Uncertainty, here, is personally draining. Worry about the reassessment process is also potentially preventing people from getting the support they are due.

Culture of hostility

We have already described the threats to resilience in the workplace and arising from interactions with the health, benefits and social care system. However, disabled people also told us about direct threats as a result of their interaction and participation in their communities. Geoff said:

There have been numerous occasions when I’ve been verbally ridiculed by adult men, I’ve been pushed over. I am aware of it every time I go out – people talk about the fear of going our and for people who are less physically able they can’t withstand that kind of abuse. (Geoff, early 50s)

These experiences of psycho-emotional disablism – that is the dishonouring of the identities of disabled people – can have potentially huge disempowering effects upon disabled people. Too often these accounts of everyday, mundane experiences of disablism are ignored by service providers, researchers and policy makers.

Worryingly, Geoff felt that discrimination and harassment had ‘got worse recently’ (Inclusion London, 2011). He saw the causes for this as both cultural and political:

People ask my partner ‘does he take sugar?’ People think it is folklore but it happens to me. It is doing ordinary everyday activities, but if you challenged it you would spend all day doing it. From Ricky Gervais’ ridiculous and prejudiced remark [about the use of the word mong] which he tried to justify – I’d like to

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see him tell that joke to the person I know who was about to start work and went out for a drink with his mates the weekend before to celebrate and was attacked in town and called a ‘moron’ and told he should be taken off to hospital. He ended up having a breakdown and nearly being sectioned. He is now agoraphobic. So is ‘moron’ or ‘mong’ all right for Gervais to use? It is like when Little Britain was on and people would wind down the car window and shout ‘want one!’ at me.

People assume you are sponging off the system. If I wear my prosthetic leg and park in a disabled bay, you can see people looking at you. If I go round ASDA in my scruffs, you can see people look at me as if I have the life of riley. People are threatened in the climate we are in at the moment. People are being encouraged to look on minority groups less favourably – asylum seekers, social migrants, single mothers, people on benefits are all being highlighted by reforms in the social care and benefit system. Just this week I saw a news item about a woman caught claiming DLA and she was sliding down a slide on holiday. It reads as if people are claiming when they don’t need it. If I saw my neighbour walking down the shops – but they might spend the week in bed afterwards. You can’t evidence the amount of effort a disabled person and the unpaid network around them put in. Families and partners give emotional support that can’t be quantified. (Geoff, early 50s)

Geoff’s experiences demonstrate how media portrayals of disabled people can impact negatively on disabled people’s lives and drain potential.

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7.Older disabled people: from childhood exclusion to a valued adulthoodSUMMARY

Older disabled people have a positive sense of who they are and value support from their communities.

Accessible homes and technology are very important to disabled people.

Older disabled people told us that peer support, supporting people in similar circumstances to themselves, was a very good thing.

Sadly, older disabled people told us that discrimination continues at this stage of their lives.

Just like adults of working age, older disabled people worry about a growing sense of hostility to disabled people.

It is important to listen to older disabled people directly, not just their families or people close to them.

Identities, communities and politics

For some older participants in the study, a positive identity was closely tied to disability politics:

I personally think that disabled people are an oppressed group in society and that there is a sort of hierarchy of oppression which is kind of pyramidical in shape and at the bottom layer are people with disabilities, and their voices never get heard. (Luke, early 60s)

Flora’s engagement with disability politics gave her a sense of power and control in her life as well as a strong sense of community participation and community cohesion. A politicised disabled identity provides a ‘hot abrasion of hope’ (Ungar, 2011) for some individuals. Flora believed that for people who acquire an impairment later in life, understanding the social model of disability was ‘really important’.

Simon also found a sense of community in an impairment-based organisation:

Very luckily, I found this place in a local town that knew all about neuromuscular conditions and I started going there for physiotherapy. It was there that I learned about Disability Living

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Allowance – I’d never heard of that one before. (Simon, early 60s)

As Simon tells us, as well as giving support and advice about managing his condition/body, the centre gave vital information about access to material resources. We know from previous research that different kinds of disability organisations can offer specific kinds of support and these range from political campaigning, through support with services and benefits, through to specific medical and psychological help (Hughes, 2009).

Homes and technology

As we saw in the section about disabled children, accessible homes are clearly important in the lives of disabled people and Simon also reflected on this as a key material resource:

I live in a dormer bungalow and I moved in here in 1986 and right up until 1999 I was still able to get up stairs. But then at that point I realised that I wasn’t going to be able to manage for much longer, so I started thinking about modifying this house or moving to a bungalow. I looked at bungalows and the thing about bungalows is that you put most of the space in the rooms and not in the corridors so turning a wheelchair round becomes very tricky, so then I looked at modifying this house. In the end, I decided to knock down the double garage and build a purpose built extension. It was the most expensive option but I’ve still got the bedrooms and bathroom upstairs, I’ve still got the lounge and this area, and I’ve now got an ensuite with bedroom and bathroom downstairs. When I had the extension built, I had the occupational therapist and social worker round, and one of the things they said was, we can’t give you any money for sinks and baths, but we may be able to help you with a toilet because toileting is considered to be a necessity whereas washing isn’t. And so I’ve got a loo, because I can still stand, but it’s the transfer from sitting to standing that’s the tricky bit, so I’ve got a loo that’s got a rise and fall mechanism on it, and it also washes and dries me, so I don’t use toilet paper. It’s a Clos-o-mat. (Simon, early 60s)

For Simon, access technology was a key material resource enabling him to have a sense of independence and power and control in his life.

Peer Support

And then whenever I lifted my head above the parapet, if you look around you, you see people who are in the same boat. You have to say ‘I will walk with you, shoulder to shoulder as you go

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through what I have just gone through, and I will share what I know with you until you are successful’. And that was informal at first, not in any kind of organised way – it was just something that I felt that I had to do. And then I decided I’d join an Advocacy Network. (Luke, early 60s)

Luke describes how he created a network of support around himself and how he supports others. As we saw above, peer support is crucial to resilience building.

Discrimination continues

Sadly, older people have to continue to fight for resources and face discrimination. Luke told us about his current battle for material resources and social justice as an advocate for others:

We did an intervention recently here in [city]. The situation was that there were some people who had incontinence products and this government came in and said, well, the bill for that is too high. It needs to be cut by twenty percent so you are going to have to take away pull-up pants from this group of people and give them butterfly pants, which are 20 percent cheaper. Butterfly pants don’t contain the soiling and the mess and the urine in the same way that a pull-up pant does, because they have got leg cuffs and waist cuffs, which actually contain it. Some people had been prescribed with an anal plug that they withdrew. These people were accessing the specialist transport service to go to day centres and activities and escorts and the specialist transport services said “well, now this person no longer has containment for their double incontinence and I haven’t been trained in changing their butterfly pants so we can’t have them on the transport”. It meant they didn’t get their day-care activity, so it was a complete disaster for a group of 400 people across [local authority area] were affected. We intervened to act as advocates for a small group of that 400 but we said that if the authority didn’t change the decision that they made and make an exception for this group of people then we would bring a class action. And that’s what it took – we had to threaten them with class action. (Luke, early 60s)

Luke describes how lack of material resources and social justice can prevent people from participating in their communities and drain the resources in relationships with others.

Disabled people have told us about the interconnections, interdependencies and resources that allow them to describe themselves as resilient. They have also told us that many of these resources are currently inaccessible to them. Disabled people struggle to access the

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resources we have identified.

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8.ConclusionOver the last forty years, the disabled people’s movement has challenged individualised and deficit models of disability and pointed to the societal, systemic and attitudinal barriers which produce disability (Oliver, 1996). We argue, in contradiction with previous research, that building resilience can never simply be a matter of building individual capacity. It must also be a case of challenging social, attitudinal and structural barriers which threaten resilience in the lives of disabled people (Young et al., 2008). Disabled people have shared with us their stories and expertise across the life course, allowing us to reflect upon the explanatory power and usefulness of the network of resources we have identified.

We conclude with three key messages about resilience from the disabled people in this study:

Building resilience can never simply be a matter of building individual capacity; it must also be a case of challenging social, attitudinal and structural barriers which threaten resilience in the lives of disabled people (Young et al., 2008).

Many disabled people continue to be denied access to resources they need to build resilience in their lives. In the current financial and political context, changes to material resources and the experience of hostility in communities present significant threats to resilience in the lives of disabled people throughout the life course.

Services that recognise the interdependencies and interconnections between the resources that build resilience and move away from provision built on individualising models of resilience will be best placed to enhance resilience in the lives of disabled people.

Service interventions and professional assessment must move to an ‘extended network’ understanding of resilience in order to identify, address and enhance specific resources that are crucial to the development of resilient communities and relationships.

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