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Disasters affecting the landscapes in which people live are becoming more frequent and more intense, threatening the sustainability of physical environments, place based economies and social structures. People and communities across the world are experiencing significant upheavals in their lives as a result of the impact of disasters on their sense of ‘place’, belonging and wellbeing. The destruction of taken-for-granted landscapes significantly affects lives and livelihoods, wellbeing and health as the familiar becomes unfamiliar and the safety of the known becomes destabilised. While the sustainability of environments is challenged, so too is the social sustainability – or the capacity of people to maintain social systems.
When disasters occur, everybody living in the affected area is vulnerable. Nonetheless, the adaptive capacity of individuals, and their ability to absorb and move on, is shaped by a number of factors including gender, poverty, ethnicity, access to resources and input to decision making. Critically, and for the purposes of this chapter, the vulnerability of individuals, and the ongoing social sustainability of communities, can be mitigated somewhat through social policies that acknowledge and support those with limited resources to address and adapt to the critical changes in their lives. However, there are a number of factors that act to prevent policies being sufficiently nuanced to assist people and communities in crisis – chief among these are the underpinning principles upon which social policies are based and the lack of participatory processes that block those affected, including the more marginalised, from having their voices heard. In this chapter I touch briefly on the social impacts of disasters, on vulnerability and on the way social policies can enhance or reduce social sustainability and people’s adaptive capacity and resilience in the face of often extraordinary changes in their lives.
This chapter considers children and young people’s participation in the development of health policy and service delivery. The chapter was written by Louca-Mai, at the time a postgraduate researcher at the University of the West of England, in collaboration with Emily (Barnardo’s Participation Manager) and Felicity1 and draws on our experience of a project in the Bristol Community Children’s Health Partnership (CCHP). The project involved health professionals, young people and Barnardo’s participation service working collaboratively to develop a strategy and framework to support children’s participation in the organisation. The chapter considers the lessons from this work for the involvement of children and young people2 in health policy and services from both professional and young people’s perspectives.
The United Nations Convention on the Rights of the Child (CRC: UN, 1989) established international recognition that all children have a right to the highest possible standards of both healthcare and participation (Alderson, 2014). The CRC encompasses social, economic, civil and political rights, and ‘asserts children’s right to have a voice in decision-making, as well as rights to freedom of thought and expression’ (Percy-Smith and Thomas, 2010: 1). The understanding that children should be involved in decisions which affect them has been increasingly reflected in law, policy, guidance and regulation (Franklin and Sloper, 2005). But participation is a multi-layered (Sinclair, 2004) and sometimes contested concept (Lansdown, 2006; Shaw et al, 2011). There are also concerns about when and whether participation is meaningful for all those involved, effective in terms of impacts on service decision making and outcomes for children, and sustained (Crowley, 2015).
Beveridge’s former ‘five giant evils’ – Disease, Idleness, Ignorance, Squalor and Want – are different now (Stephens et al, 2008: 7–8). With the new five modern evils of elitism, exclusion, prejudice, greed and despair, injustice begins to propagate itself more strongly. Writers like me find it easy to say what is so very wrong, but usually struggle to make suggestions as to what could and should be done.
Some say that it is easy to criticise but hard to find solutions. The central argument here is that it is beliefs that matter most – the beliefs that enough of us still hold – the beliefs that underlie most injustice in the world today. To ask what you should do after you dispel enough of those beliefs is rather like asking how to run plantations after abolishing slavery, or how to run society after giving women the vote, or how to run factories without child labour. Elitism, exclusion, prejudice, greed and despair will not end just by being recognised more clearly as unjust, but that recognition is a necessary precursor.
All the five faces of social inequality that currently contribute to injustice are clearly and closely linked. Elitism in Britain suggests that educational divisions are natural. Educational divisions are reflected both in the misfortunes of those usually poorer children who are excluded from life choices because they are seen as not having enough qualifications, and also through the supposed achievements of those able to exclude themselves, often by opting into private or otherwise segregated education.
Editing this book has been a major project. Two things directly encouraged us to embark upon it. First, our own personal experience of the inadequacy of traditional social policies and services and second, our experience as activists that people’s participation could make possible a more hopeful alternative. We felt both that conventional social policy has lost its way and that participatory social policy had something very helpful to offer instead. The work we have done in putting the book together, the contacts we have made and the developments we have discovered mean that our own understanding has expanded, rather than remained static. We have learned so much – especially internationally – and we hope that this book also offers that opportunity to readers. Editing it has opened our eyes to just how much is going on to advance participatory social work in theory and practice globally. It has confirmed our and other people’s growing concerns that traditional social policy, whether of the political left or right, may be set on a road to nowhere, the two cancelling each other out. Proposals either continue to be prescriptive and therefore politically weak or backward looking, cutting welfare, turning to the market, deluding us that this offers a way forward. In our view, the Grenfell Tower tragedy in the UK, in which so many died unnecessarily, is likely to have reverberations for social policy much more widely and for much longer than could ever have been imagined. It has given the lie to previously unchallengeable arguments that public spending is wasteful and damaging, that spending cuts are synonymous with ‘efficiency savings’ and that only the private sector can ensure that the ‘consumer is king’, rights and social responsibility secured and the voice of the citizen heard (Walker, 2017).
The 21st century marks the emergence of a new demography of death, one in which longevity and chronic illness rather than short lives and infant mortality define its parameters (Leeson, 2014). By 2050, lifespans will have risen from 65 years in 1950 to an expected 83 years in developed regions and from 42 years to 75 years in less developed regions (United Nations, 2013). Concurrently, it is expected that by 2050 there will be 434 million people 80 years of age and older with chronic and complex health conditions.
As a result of these shifts in ageing and disease prevalence it is reasonable to assume that palliative care will increasingly become part of the life course as people encounter death and dying in advanced age. (Palliative care may be defined as care and treatment that is meant to improve the quality of life of individuals with a life-limiting illness and their families (World Health Organization, 2016).) Yet despite the existence of policy calling for the ‘delivery of high quality [palliative] services in all locations’ (National Health Service, 2008: 11), ample evidence exists that older people are at risk of receiving sub-optimal care (Ahmed et al, 2004; Burt and Raine, 2006; Burt et al, 2010). Solutions to the problem often focus on the need for improvement within professional health services (Browne et al, 2014; Keim-Malpass et al, 2015), which suggests an underlying belief that change is best left to the experts in the healthcare profession and the statutory sector.
Emerging discourses in palliative care, however, offer a different perspective.