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I’m learning a great deal through being a service user representative on a research project that aims to develop new forms of support for people with dissociative seizures. Dissociative seizures superficially resemble epileptic seizures. They are episodes of impaired functioning associated with a range of motor, sensory, neurological and psychological manifestations, which in my case last around 50 minutes and can cause transient loss of speech and cognisance. Other names for these phenomena include ‘psychogenic non-epileptic seizures’, ‘Non-Epileptic Attack Disorder’, ‘non-epileptic seizures’, ‘functional seizures’. Usually I’m the principal investigator in charge of large research projects so being involved as a service user representative is a new experience. The opportunity has given me fresh insight into how the lived experience of service users can be diminished in research and I describe some of the ways in which this happens in this chapter.
Although I’m going to focus on the difficulties of being positioned as a service user representative rather than a research expert in a project, and am going to illustrate demeaning of service user input, I am keen to say that the trouble I’ve seen from the service user representative point of view is trouble I think well worth having for the purpose of critical reflection on how to create research that is more respectful of service users and our experience. I have not been personally offended by the demeaning of lived experience described in this chapter, disabling as it is; rather it fuels my interest in the polarity between service user and service provider perspectives in research projects, and in how to reduce the distance between people to produce better research outcomes.
In 2011, something new happened. Without an organisation or funding, disabled people and allies came together to challenge government policy, and the narrative accompanying it. They did this not by the time-honoured methods of protest and appealing to the public’s sympathies, but by sitting down and demonstrating, with evidence, that the government was wrong.
In this chapter, we will explore the background behind the ‘Spartacus Report’, Responsible Reform (Campbell et al, 2012), a report put together by disabled people and allies to challenge proposed reforms to Disability Living Allowance (DLA).
DLA was introduced in Britain in 1992, bringing together and expanding two existing benefits, Attendance Allowance and Mobility Allowance (Kennedy, 2011). DLA was available to children and working age adults, and to people over state pension age who were receiving it when they reached that age.
In February 2011, the British coalition government’s Welfare Reform Act 2012 was introduced, following a White Paper on Universal Credit and a consultation on DLA in 2010. The Act replaced most means-tested welfare benefits with Universal Credit, and replaced DLA for working age claimants with Personal Independence Payments (PIP). That consultation received 5,500 responses from individuals and organisations, and was summarised and responded to in April 2011 (Department for Work and Pensions, 2011). The summary claimed a remarkably positive response to the consultation, which provoked a rather incredulous reaction from many disabled people and some of us set out to take apart the arguments for the proposed reforms.
Those responsible for the production and impact of the report would be hard to number, and many who were closely involved have chosen to remain anonymous because they did not wish public attention, or because they feared retaliation from the UK Government Department of Work and Pensions (DWP).
What if that machinery were reversed? What if the habits, problems, actions, and decisions of the wealthy and powerful were daily scrutinized by a thousand systematic researchers, were hourly pried into, analysed, and cross referenced, tabulated and published in a hundred inexpensive mass-circulation journals and written so that even the fifteen-year-old high school drop-outs could understand it … ? (Martin Nicolaus, 1968)
My interest in a new participatory social policy has been inspired by two things: co-production, and the internet. These led me to establish Guerilla Policy – a website platform to argue for a different approach to making policy, and as a (work-in-progress) demonstration of grassroots policy thinking and commentary.
Co-production means designing and delivering services with people, in recognition of their expertise about their own lives. This goes well beyond merely consulting with service users, to designing services around people’s (often ignored) capabilities – a fundamental break with seeing people as the passive dependents of professionals in public services (for example, Harris and Boyle, 2009).
The internet has enabled new forms of individual and collective expression, creativity and collaboration across virtually every sector – from websites that allow people to rate everything from hotels to video games, to myriad forms of user-generated content.
One of the areas that seems largely untouched by either of these trends – and how they might be combined – is how we develop policy. Instead, despite widespread public dissatisfaction with the political class and with political institutions, we remain subjects to a closed ‘policy priesthood’.
I’ve seen this close up and been part of it (marginally anyway).
A paradox of implementing race equality policy is that continued use of the term ‘race’ further embeds the word in language. Race is usually referred to as a set of genetic differences that denote discrete sub-categories of the human race. Alongside this process of categorising is the ascribing of attributes associated with races. Bamshad et al (2004) analysed the genetic basis for race and pointed out that the genetic differences between groups of people are small, around 1%. Sometimes the genetic differences within so called races are wider that those across what are considered to be separate races.
An alternative approach is to focus on the process of racialisation. Garner (2010) described the process by which people are described as being racially different based on a notion that ‘White’ is the norm and non-white people belong to an ‘other’ race. Racialisation shifts the focus from an assumption that behaviours and inequalities are biologically or culturally determined to an analysis of social and structural factors that drive inequality.
I have been involved in implementing race equality policies at the national and local level within the statutory sector and working independently. I will explore three challenges that manifest themselves in three contexts in which I have worked.
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National policy implementation
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Local policy implementation
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Supporting race equality policy as an independent consultant
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Maintaining integrity in role
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The subordination of system approaches
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The avoidance of racism in implementing race equality
The three challenges to be explored in this chapter reflect those that have been discussed elsewhere in published literature. As such there is already reference material that expands what is summarised in the following four paragraphs.
The discourse pertaining to Black Disabled People is often negative, it manifests itself, resulting in discriminatory practices, and may contribute to the inequality to access of services. It is from this point of view that this chapter will discuss the quality and experience of policy implementation and what it achieves in practice. It will also look at independent living from a personal perspective, as a Black Disabled Woman, as well as drawing on literature for evidence.
Finally, this chapter also argues the need for policymaking to be participatory but also that there is no comparable difference between White and Black Disabled People’s ambition and motivation to achieve independent living.
I want to emphasise from the outset that I do not believe that Black Disabled People have a different understanding of independent living or disability issues. Furthermore, our experiences are likely to differ between those born and/or raised in Great Britain, and those that have moved to live here. This is particularly true for those who come from conflict and economically poor countries, where circumstances would have forced them to struggle to achieve freedom, independence politically and personal gain (Driedger,1989). This point sets the premises to further the discussion.
While I believe in one human race, there is a division of races that creates a division of opportunities. For the purpose of this chapter ‘Black People’ are described as people from African, Caribbean and some Asian descent. Also, I will use the term ‘Black Disabled People’ to encompass our different intersectionalities. Crenshaw (2015), a prominent American Black Civil Rights advocate and scholar, introduced the intersectionality theory to highlight the complexities and interplay of different identities different experiences of a human life, and underpins the fundamental idea that people are not homogenous and a one size will not fit all.
I am a born mental health nurse and while I recognise the issues inherent in the system, it is still core to my identity – I love it! One of the things I am less enthused by are the rafts of mental health policy seemingly written by people with no understanding of what helps mental health workers do their jobs. However, there is a notable exception to this. I was working across two roles in the National Health Service (NHS) as a Mental Health Ward Manager and Practice Development Nurse when the UK policy document Informed Gender Practice: Mental health acute care that works for women came out (NiMHE, 2008). I am not normally moved by policy documents but this one changed the scope of my practice and what I thought was possible.
The explicit articulation of four core principles – equality, knowledge, commitment and relationships – made the power dynamics that are frequently left unspoken in mental health care, very clear. It also positioned the importance of therapeutic relationships centrally. The foreword noted the importance of coproduction and partnership at all levels of services and the guidance was developed using a wide range of sources which gave voice to the experience and concerns of a diverse group of women using and providing services. The combination of an evidence base drawn from research and personal narrative with practical advice on how to provide the best possible care was a potent departure from the ‘wish lists’ I had seen up to that point.
I was happy in my work but knew that we could do better; I felt there was something missing from the care offered.
I’m grateful that, after an early life of being silenced, sometimes violently, I grew up to have a voice, circumstances that will always bind me to the rights of the voiceless. (Solnit, 2014)
For years there have been growing calls for a different approach to social policy; one that is truly participatory and democratic, rather than paternalistic and controlling. This book is a response to that demand. It is the first exploration of participatory social policy internationally, critiquing its nature, origins and possibilities, as well as the issues and problems it faces.
The promise of participatory social policy is that where people need help or support, or for their rights to be safeguarded, they have a real say in that process, instead of having someone else’s moral, ideological, economic, policy or social solutions imposed on them, as has so long been the case. Yet despite the popular support for participatory social policy, it has so far made very limited progress globally. Perhaps this is not surprising. Social policy continues to be a battleground between contending political and ideological forces; each with its policy prescriptions and agendas to pursue. Meanwhile, the subjects of social policy, especially of its more ‘heavy end’, have had little role in shaping it, often serving only as a stage army that is either patronised or stigmatised, frequently marginalised and excluded from mainstream society. In addition they have largely been excluded from debates, discussions and the formulation of social policy as both an area of policymaking and an academic discipline.
The 4Pi National Involvement Standards for England were developed by the National Involvement Partnership (NIP) project from 2012 until 2015. NIP was a partnership of organisations hosted by the independent user-led organisation for England, the National Survivor User Network (NSUN). NSUN is a national network bringing together individuals and groups with direct experience of mental distress to communicate, feel supported and empowered, and to have direct influence over their services and lives. One of the main aims of the NIP project was to establish the reality of involving service users and carers in the planning, delivery and evaluation of health and social care services.
Service user and carer involvement has been on the policy agenda for health and social care services in Britain for several decades. The UK 1990 NHS and Community Care Act introduced a focus on the ‘consumer’ and assumed that greater choice would mean that involvement would improve the relevance and quality of services for the consumer (or service user). More recently, the UK cross-government mental health outcomes strategy ‘No Health without Mental Health’(2011) placed an emphasis on wellbeing and on outcomes for individuals, based on principles of ‘freedom, fairness and responsibility’.
Over the years, many mental health organisations in Britain have addressed service user involvement in different ways, developed guidance and policies for better involving service users and carers, with the aim of improving individual care and services. However, much of the learning from progressive policy implementation programmes has been lost along the way. A particularly good example of this loss is the Making a Real Difference (MARD) programme developed under the UK New Labour government during the early 2000s.
