Textbooks
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In this chapter I explore the role and value of user-controlled research in relation to the development of social policy, drawing on the pioneering UK experience as a case study. The chapter turns our attention towards the different situations in which service users (disabled people, patients, members of the public) have seen the need to do their (our) own research rather than becoming involved in research directed by others. The focus here is on the value it has to those undertaking it and the potential impact it can have on people, services and social policy. User-controlled research has its origins in people’s frustration with the services that fail to listen to them and the research that fails to explore issues of concern to them, as this chapter will demonstrate.
Together with other evidence, I will draw on a report that explored seven examples of user-controlled research: Changing Our Worlds: Examples of user-controlled research in action (Faulkner, 2010), funded by INVOLVE. INVOLVE is the arm of the UK National Institute for Health Research established to support active public involvement in NHS, public health and social care research. The report was commissioned in 2010 to explore the role and value of user-controlled research through a series of seven case studies.
The key piece of work to shed light on ‘user-controlled research’ was undertaken by Turner and Beresford (2005), funded by INVOLVE. In defining it, they align user-controlled research with both survivor and emancipatory disability research. At the heart of user-controlled research is the principle that service users hold the control of the research, but it is also allied with the notion of empowerment or liberation of service users and disabled people inherent in emancipatory research.
In this chapter I will explore the relationship between social policy and the experience of disability, drawing on perspectives developed by disabled people and using the UK as a case study. I will look at contested meanings of both terms, social policy and disability, and develop an argument suggesting that social policy has largely constructed disability as dependency. I conclude that the aspiration to equality for disabled people remains one which requires continued struggle and that progressive intentions do not always take into account ideological and historical contradictions inherent in the situation. While I focus on the UK, it is to be understood that disabled people globally have, as a result of social policies in many separate countries, experienced marginalisation and exclusion from participation in economic production and community life. Rachel Kachaje (2016), Chair of Disabled People’s International, states that ‘most governments all over the world’ fail to invest sufficiently in the economic inclusion of disabled people, arguing that when such a large population in any country is rendered non-productive the eradication of poverty ‘becomes a failure’.
A traditional view would state that social policy deals with things like health, education, income maintenance, housing, and personal social services; with the measures required to secure the human wellbeing of a society. It is also, however, wider than this in its significance. Social policy reflects and enables social change, influences the way we communicate with each other, the way we see each other, and gets to the core of our identities: whether we regard ourselves, for example, as citizens with rights or primarily as consumers (Cahill, 1994).
Social policy is often constructed and implemented by people who have little experience of its impact as a service user, but there has been a growing interest in greater public, patient and service user involvement in social policy as both political activity and academic discipline.
Social Policy First Hand is the first comprehensive international social policy text from a participatory perspective and presents a new service user-led social policy that addresses the current challenges in welfare provision.
A companion volume to Peter Beresford’s bestselling All our welfare, it introduces the voices of different groups of service users, starting from their lived experience. With an impressive list of contributors, this important volume fills a gap in looking at social policy using participatory and inclusive approaches and the use of experiential knowledge in its construction. It will challenge traditional state and market-led approaches to welfare.
This chapter resonates with the main tenet of this edited collection book, seeking to examine first hand what social policy formulations may look like as told from the perspective of the Global South. Mainstream social policy discourses have focused on post-war welfare provision in rich industrialised countries (Baldock et al, 2011). Economic development was identified as a key driver for welfare state emergence in wealthy countries (Flora and Heidenheimer, 1981). Welfare typology classifications (Esping-Anderson,1990), though criticised for scope and lack of attention to gender (Daly and Rake, 2003), have become established frameworks by which welfare states can be studied in comparative perspective. Original typologies have expanded to include Southern models of welfare (Martin, 1996), transition economies in Eastern Europe (Myant and Drahokoupil, 2011) and, to a very limited extent, Eastern social policy and ‘Tiger economies’ (Haggard and Kaufman, 2008).
Despite this, I argue that current social policy literature has not grappled sufficiently in terms of world views with the nature of social reality (ontology) or the theories around investigating social reality (epistemology) of developing country contexts. At best social policy initiatives only become visible when developing countries play ‘catch up’ and achieve rapid economic development, thereby abiding by the criteria for state based welfare. By drawing on emerging social policy literature from the Global South (Mares and Carnes, 2009; Razavi et al, 2004; Surrender and Walker, 2013), this chapter challenges taken-for-granted assumptions around what social policy is, and how it can be understood in developing world contexts. Post-colonial frameworks (Bhabha, 1994; Spivak, 1999) are used as an alternate lens through which we can reimagine social policy from a participatory perspective.
My grandparents arrived in Australia from England in the early part of the last century. I am from the colonising or settler culture, more accurately understood as the invading culture. One set of grandparents took up (occupied or stole depending on your perspective) land which belonged to the Noongar people in what is now known as Western Australia. When I visited my extended farming family as a child, Aboriginal workers who provided casual labour were camped opposite the house. At that time, there was no requirement to pay Aboriginal people the basic wage. Two years later, in my first vacation job, I was shocked to learn that boys got paid more than girls; the explanation that boys would eventually be breadwinners seemed ridiculous. I was ignorant of the discrimination against Aboriginal people and even when discrimination impacted on me (mildly by comparison), I failed to see these things as systemic injustices, preferring to see them as just old-fashioned, fast-fading ideas and values.
At university, drawn to feminist and radical social work, I was excited to be part of an Australian society which was making progress. Then in 1981 the documentary Eight Minutes to Midnight (Benjamin, 1981) was my epiphany; a wake-up call about something seriously wrong with the social, economic and political fabric of my world. That the human species would willingly take itself to the brink of nuclear war rather than resolve Cold War territorial and ideological differences seemed astonishing. Nothing was quite the same for me after that, although it was several years before I made connections between the nuclear arms race, logging ancient forests near where I lived in the south west of Western Australia and my work as a social worker.
As someone with long-term health conditions, health policy is important to me, because it can affect which services I access and how. On paper, at least, that is reflected in UK policy, with phrases such as ‘nothing about us without us’1 and the NHS Constitution2 placing great important on people like me getting involved as patient leaders.
My lived experience began when I was 19 and still studying at university. After the initial shock and disruption of getting diagnosed with long-term health conditions, it quickly became clear to me that this was a far more informative experience than information I was trying to learn in my studies. It is hard to describe the lived experience I am accumulating as each day goes by, since it varies from good to bad, acute to chronic, specialist care and the ‘get on and cope with it yourself ’ approaches as well as the almost inevitable mental health challenges caused by the physical health.
Combining that with a hunger for a new identity since my old identity had been robbed by the health conditions motivated me to want to make this experience of some value for somebody somewhere – although at first, I really wasn’t sure who or where that would be. I think the sentiment of ‘wanting to improve things for others’, or ‘make sure others don’t have to go through the same experience’ is a common motivator for people, and I am certainly no exception. The challenge for me came in finding something that fitted that bill, and enabled me to use my lived experience.
On 12 November 2014, a demonstration of around 200 people – mental health workers, trade union activists, service users and carers – gathered outside the Victorian City Chambers in George Square in Glasgow. Inside the building a full meeting of the Labour-controlled Glasgow City Council was voting on whether to make cuts to social care services of almost £30 million. The cuts included a proposed reduction of 40% to the budget of the Glasgow Association for Mental Health (GAMH), one of the biggest voluntary sector providers of mental health services in the city. The message of the protestors outside to the Labour-controlled council inside the building was a simple but powerful one: ‘Cuts cost lives!’ This was no empty rhetoric. While not easy to quantify, in Scotland as elsewhere in the UK the politics of austerity have led to an increase both in levels of mental distress and also in the number of suicides (Psychologists against Austerity (Scotland), 2015).
Glasgow, of course, is far from unique. Massive cuts to services, alongside reductions in disability benefits, the application of brutal sanctions and the imposition of a punitive and degrading Work Capability Test have greatly increased the levels of stress experienced by many disabled people across the UK (Gunnell et al, 2015). The picture is a grim one. In this context discussing service user participation can seem either hopelessly naïve or akin to re-arranging the deck chairs on the Titanic: exactly what is it that service users are being invited to ‘participate’ in? Yet amid the nightmare of ‘welfare reform’, there is one bright light.
The PowerUs European partnership was established in 2012 by social work lecturers from Lund University, Sweden, Lillehammer University, Norway and members of Shaping Our Lives, a national service user-led organisation in the UK. It was formed in recognition of the introduction of ‘gap mending’ methods which were being developed to transform professional training and education. The concept of ‘gap mending’ is about promoting methods of inclusion within professional educational and practice contexts that result in more equal practice. As partners in learning and developing innovative projects, students, practitioners and service users can make a genuine contribution to research, knowledge and improving practice.
Some examples are provided of innovative projects with parents who have had their children removed, young people in the looked after system, and asylum seekers and refugees. Outcomes from these programmes have evidenced that, by creating a learning environment where people share their experiences and knowledge, traditional barriers that exist between people on the receiving end of professional support and those providing it can be removed. Further, these programmes, which began with social work students, have widened the professional context where this approach can apply.
Service user and carer involvement has been formally recognised as an essential part of social worker training and education in the UK since the establishment of the social work degree in 2003 (Levin, 2004). Much has been written on this subject, including the historical context for service user and carer involvement and continuing challenges to ensure that participation is meaningful (for example, Forbes and Sashidharan, 1997; Beresford, 2005; Beresford and Carr, 2012).
