In March 2013, 18-year-old Connor Sparrowhawk, diagnosed with autism and epilepsy, was admitted to an assessment and treatment unit after becoming intensely agitated and unhappy. He was subsequently sectioned and drowned in the bath there on 4 July. Southern Health NHS Foundation Trust (SHFT) who ran the unit said Connor (known as Laughing Boy or LB) died of natural causes. His mother (Sara Ryan, SR) wrote a blog, mydaftlife, about family life and this became a diary of Connor’s time in the unit. This public writing of Connor’s story enabled the family to access human rights support when he died and generated outrage among blog followers who came together on social media to create the #JusticeforLB campaign. George Julian (GJ) was a core contributor to the setting up and running of this organic and innovative social media based social movement. The campaign drew on joy, colour and creativity including running a #107daysofaction event which invited people, a year on, to adopt each of the days Connor was in the unit to raise awareness or funds (for legal representation at his inquest).

The 107 days ended up over-subscribed and an extraordinary range of activities happened in Connor’s memory. These included sporting events, songs and laments by several choirs, an evening of comedy, dedicated talks and lectures, and arts and crafts activities to raise awareness, including drawing buses, stitching patches for a justice quilt and other craftivism. A further outcome of #107daysofaction was the #LBBill, a crowd sourced private members’ bill, focusing on changing the law around the ‘placement’ of learning disabled people.

In 2016 someone said to me, “LGBT History Month is a thing!”

I agree. It is a vibrant, loving celebration of all things lesbian gay bisexual and trans (LGBT), across the UK every February. By 2016, it had been going for 11 years. There have been literally thousands of events up and down the country, from big conferences backed by local authorities, universities or unions, to exhibitions in libraries and museums, events in pubs, clubs theatres and churches. Many are organised like LGBT History Month itself is, by unpaid volunteers. Some are now embedded in institutions’ zeitgeist, so are part of each year’s calendar.

Prior to the establishment of LGBT History Month in 2005, positive media images of LGBT people were few and far between. Section 28 of the UK Local Government Act 1988 stated:

A local authority shall not—

(a) intentionally promote homosexuality or publish material with the intention of promoting homosexuality;

(b) promote the teaching in any maintained school of the acceptability of homosexuality as a pretended family relationship.

It had cast a long shadow. Though there were no prosecutions under Section 28 in England, Wales and Scotland, its censoring effect had been all-powerful, particularly in schools.

Censorship and self-censorship meant that children were denied information about the existence of LGBT people in the past or present. This constituted a denial, therefore, of the rich and various contributions made by them to society, here in Britain and round the world.

We had been ‘invisibilised’ consciously and unconsciously and we needed to change that. In 2003, Section 28 was repealed and Schools OUT could see that more laws were in the pipeline to promote human rights for LGBT people in the UK.

The year 2015 marked the 800th anniversary of the Magna Carta, but we would argue that learning disabled people remain ‘villeins’, who are denied rights against arbitrary power. So what would a Magna Carta for look like for learning disabled people living in Britain today?

No free man shall be seized or imprisoned, or stripped of his rights or possessions, or outlawed or exiled, or deprived of his standing in any other way, nor will be proceed with force against him, or send others to do so, except by the lawful judgment of his equals or by the law of the land. To no one will we sell, to no one deny or delay right or justice.

Eight hundred years ago this set of freedoms was made law in England and, although Magna Carta is widely believed to have been the first ‘Human Rights Act’, it actually excluded most of the population. It did not apply to ‘villeins’ – the ordinary people. The Lords, Barons and ‘free men’ were granted the right to be judged by their own peers in courts of law. Most people were villeins and outside this new law.

Are people with learning disabilities our modern day villeins? The rights and positions of people with learning disabilities are not judged by juries of their peers but by systems where power is held by ‘lords’ – commissioners, social workers, service providers, psychiatrists, judges and politicians.

In Britain, the latter half of the 20th century was a time of social and economic change. The horrors of two global conflicts led to the breakdown of the formerly dominant class system in the UK, which had evolved from the earlier feudal system.

The relevance of participatory action research (PAR) within policy-facing social sciences is increasingly recognised due to the growing emphasis on research uptake and impact. This is because participatory research affirms stakeholders as agents bringing diverse knowledge and techniques, and a commitment to and ownership of research findings and outputs in ways that are deemed more likely to be translated into action and achieve policy change. Indeed, PAR is used widely as a research strategy across the social and health sciences wherein it is strongly associated with the production of knowledge for action that is of direct benefit and use, most of all to people experiencing social vulnerability, disadvantage and oppression.

PAR is distinguished from ‘conventional’ research less by the specific methods it uses than by the methodological contexts in which particular methods are used, and by its overarching emancipatory orientation towards participants who take ownership of the research and apply its results to improve living conditions or effect other localised social change. Advocates of PAR argue that valuing otherwise marginalised knowledge and experiences through active participation of research ‘subjects’ in the research process democratises knowledge production, secures ownership of research and improves research quality, leading to a greater likelihood that results will be put into practice (Greenwood et al, 1993; Cornwall and Jewkes, 1995; van Niekerk and van Niekerk, 2009).

Given its emancipatory project, PAR tends to be used in a range of contexts directly involving conditions of social disadvantage and/or oppression. In health, for example, PAR is frequently associated with community-based projects in low-income settings where it is used for needs assessment and planning for health services evaluation (De Koning and Martin, 1996; Baum et al, 2006) and work with indigenous populations (Hecker, 1997; Pyett, 2002); and in high-income settings primarily used to empower patients in decision making about forms of treatment (Weaver and Nicholls, 2001).

This chapter considers participation and solidarity in the development of the European welfare state. Participation requires that the less powerful groups succeed in making their voices heard. Such groups often have few resources other than their numbers, so that concerted action within a democratic framework is essential. The various welfare states that emerged during the past century rested in different ways on traditions of national male breadwinner working class solidarity, often in class-coalition with middle class groups and supported by an active trade union movement. Welfare policies in the post-war heyday of corporate capitalism reinforced this solidarity. More recently the post-war settlement has been eroded by globalisation, the shift from manufacturing to a service economy, the decline of the nation state, insistent pressures from women’s groups and others for greater equality and the emergence of new social risks. The new welfare state settlement is market liberal rather than neo-Keynesian. These shifts disempower the groups that were able to influence the traditional welfare state but empowers new groups affected by new social risks and by globalisation. The key question for a politics of participation is whether these groups can form solidarities that enable them to exert real influence.

The Great Recession of 2007–08 and subsequent stagnation had a major effect on European welfare states: in the short term social spending increased, and then in most cases trended back towards previous levels, most swiftly in the case of Germany among the larger economies (Figure 2.1).

Most commentators point out that the main regime differences between European welfare states persist (for example Hemerijck, 2012).

I have worked in a hospice in England – with people with life limiting conditions and those facing bereavement – for over 26 years. Hospice or palliative care, with its origins in St Joseph’s London and the pioneering work of Dame Cicely Saunders, is a UK development that has become a worldwide movement. It is from this perspective, as a palliative care social worker, that I write this chapter. As soon as I was invited to do so, I thought of ‘Richard’1 who was referred to the hospice day centre 20 years ago. Richard was a 46-year-old homeless white man with advanced cancer of the kidney. Due to his past problems with alcohol, he had been estranged from his family for several years but his ex-wife had recently been offering support, albeit that she did not want him to move back into the family home. Richard needed support around his medical symptoms, accessing welfare benefits and rehousing. He was very keen to meet with the social work team but found the hospice day centre a bit overwhelming and described it as ‘a bit too posh for me’. When we sat down in the rather scruffy social work team office, he said to me ‘this is more like it’!

The first time I met ‘Richard’, he talked about his cancer diagnosis and how for him it had meant that he was able to have contact with his children again. But there were a lot of practical issues to sort out. His living conditions were very precarious and he had been temporarily placed in a hostel.

Changes and progress very rarely are gifts from above. They come out of struggles from below. (Chomsky, 2008)

In recent years, there has been considerable focus on the world’s ‘ageing population’. Projections from 2014 (UK) estimate that there will be an 89.3% increase in the number of people aged over 75 by 2039 (Office for National Statistics, 2015). These projections have resulted in wide discussions around how to manage the ‘rising demands from an ageing population’ as well as the need to adapt the UK welfare system so that it is appropriate. (Cracknell, 2010: 45). Key challenges also relate to the need to adapt pensions policy and review retirement ages. Such challenges are a global concern with projections from the United Nations (UN) estimating that the world’s population over the age of 60 will more than triple by 2100 (UN, 2015).

Historically, the development of social policy has been driven by an ‘expert’ agenda, with older people themselves having little choice or control. This chapter highlights some of the key areas of current knowledge and understanding of ageing in relation to social policy. In particular, the chapter considers some of the key challenges and practicalities of a participatory approach to social policy.

Current approaches to the development of social policy tend to be underpinned by a focus on perceived problems in relation to older people. This reinforces a belief that expertise is needed; older people are viewed as unable to ‘contribute effectively’ and therefore it is up to the ‘experts’ to make decisions and shape the social policy framework (Cornwall and Gaventa, 2000: 51).

Almost every country in the world is affected by human trafficking. It is a global phenomenon and a priority for many governments. Over the past two decades a concern with human trafficking has produced much research, most of which seeks to explain its causes and characteristics, in particular through attempts to quantify which groups of people and how many of them are trafficked, as well as documenting the process and geographical flows of trafficking. Despite this growth in the literature, human trafficking remains a contested concept. In addition to a lack of conceptual agreement on what trafficking is (and is not), the dominant approach to knowledge production and data collection on trafficking has itself also been criticised (Doezema, 2010; Zhang, 2009). Research has often been led by policy frameworks and NGO practices targeting the ‘rescue’ of people, especially women and children, experiencing diverse trafficking situations. In this chapter, we argue that, as a result, little empirical research has addressed post-trafficking. Consequently, scant attention has been given to the challenges post-trafficking scenarios raise for governments and (I)NGOs. What is also often missing in research that seeks to establish the ‘facts’ about trafficking are the voices, perspectives, and knowledge of those who have themselves been trafficked and are now attempting to establish new lives post-trafficking. This represents a significant gap in our understanding of trafficking and consequently the success, or not, of anti-trafficking initiatives and interventions.

Extensive debate exists on how marginal voices are included in policymaking following now well-established critiques of participatory development (Cooke and Kothari, 2001; Mohan, 2004).

In recent decades the imperative to achieve greater levels of engagement in public policymaking has given rise to a plethora of participatory methodologies aimed at reaching out to so called ‘hard to reach groups’ (Boag-Munroe and Evangelou, 2012; Brackertz, 2007). In all social policy fields, engaging under-represented groups in governance is driven by the need to design and deliver more responsive services, provide legitimacy for policy decisions, improve take up of services and communicate confidence that as citizens all will receive fair treatment from agencies and institutions. This ambition to include has meant that government bodies and associated organisations have turned their attention to specific groups that do not easily participate either as a result of socioeconomic, demographic, attitudinal and cultural barriers, or too often as a result of stigma and discrimination. Participation is fundamental to the notion of citizenship, encompassing issues of recognition, representation, consultation and the right to have one’s voice heard and incorporated in decision making (Fishkin, 2011). Such participation points to the responsibility of governments to devise solutions to increase engagement and finding a balance with the bottom up solutions that emerge from among marginal groups in pressing for change. There are accordingly both formal and informal processes involved – political and infra-political realms to consider – that run their own multi-varied course in particular contexts.

This chapter focuses on minority ethnic participation in policymaking as an acknowledged marginalised perspective. The issues attendant on migrant or ethnic minority participation raise some very particular concerns in relation to participatory strategies not least because they defy the boundaries of what Wimmer and Glick Schiller (2002) call ‘methodological nationalism’ which characterises much social policymaking.