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.

Nine years ago I would not have described myself as a ‘researcher’. Nine years ago I had no need to be a ‘researcher’. That all changed in September 2008 when I was confronted by a staff member employed by a company generally known as ‘Atos Healthcare’. They were under contract to the British government to conduct the Work Capability Assessment (WCA), introduced by the Department for Work and Pensions (DWP) to limit funding for the new Employment and Support Allowance (ESA) income replacement sickness benefit.

The Atos Healthcare visitor claimed to be a doctor, yet refused to offer any form of identity when he entered my home for what was meant to be a medical review of my War Pension. He behaved unethically, going out of his way to create tension; refused to offer eye contact when devoting all his attention to firing off meaningless questions and entering my answers in his laptop. When I attempted to hold a conversation, he unceremoniously dismissed me with an offensive wave of his hand.

A War Pension is not a benefit and, until April 2005, it was the medical pension provided for disabled personnel who were medically discharged from military service with a permanent and significant disability. It is unrelated to long-term sickness benefit funded by the DWP.

In December 2008 I hadn’t heard of the WCA and I wasn’t anticipating any problem with the War Pension review medical. I had no idea that the DWP had adopted a ‘non-medical’ assessment model, as influenced by the discredited corporate American healthcare insurance giant, UnumProvident Insurance, who were appointed as official government advisers for ‘welfare claims management’ in 1994 in order to reduce the future DWP welfare budget.

It sometimes seems to get forgotten that impairment and disability are worldwide issues, even though they might be dealt with differently in different parts of the globe. To this end, the International Paralympic Committee has laid down a series of four core principles which demonstrate its values: Courage, Determination, Inspiration and Equality. As Cameron (2013) and very many others have pointed out, the whole issue of the Paralympics and their ethos and image is extremely problematic from a Disability Studies point of view. It is possible that, in terms of the Paralympics’ core principles, the focus on the athletes themselves, rather than on problems they experience from the societies in which they live, is intended in part to be unthreatening and to be applicable to as much of the world as possible – while not ‘rocking the boat’.

The focus on the Paralympians as ‘inspirational individuals’ also makes it appear that they – and by extension, disabled people in general – exist outside of any kind of social context, and are effectively not part of society as a whole. An inclusive view of the life course would inevitably have to reject this line of thought and instead realise that a well-functioning society is one in which people differ, and their differences are accepted and responded to in the most appropriate way. One way in which this approach differs from current reality concerns the issue of the abortion of foetuses found to have impairments. The UK actress Sally Phillips has recently challenged the idea that eradicating Down’s syndrome constitutes progress.

This chapter is about what it’s like to live in Bunbury, Western Australia (WA) and the things that the government does for people with disabilities. The City of Bunbury is 180 kilometres south of Perth, in the south west corner of WA. About 32,000 people live in the City of Bunbury. There are also other shires near Bunbury – for example, the Shire of Harvey, where some of us live. A shire is a local government area. The Greater Bunbury Region includes the Shires of Harvey, Dardanup and Capel. Altogether, about 80,000 people live in Greater Bunbury. There are a lot of kangaroos in Bunbury too; you see them all the time on the golf course in Australind, at the Bird Park, and at the University. Edith Cowan University has a regional campus in Bunbury, which is where Adam and Kathy work.

Adam and Kathy organised meetings and helped us write this chapter. We met five times – each time we met, we had lunch first and then we had a group discussion for two hours. We made recordings of our discussions and Kathy typed up what we said in the recordings and used our words to write the chapter. We talked about whether we would use our real names in the chapter, or just our first name, or choose another name – we all did what we wanted to do. We have used real names for most of the organisations we talk about in the chapter – but in a few places, we have used a false name and put it in inverted commas.

This chapter focuses on the structural position of disabled children in diverse contexts worldwide, and the types of global and international policies that help or hinder them in living lives on equal terms with their nondisabled peers. I will draw broadly on my own experiences of working with disabled children and their families in a number of cultural contexts: UK, South Asia and East Africa. Perhaps unsurprisingly because of globalisation, despite the many obvious or more subtle differences between these settings and the vast diversity of children’s experiences, there are many similarities in experiences and concerns across cultural divides. These suggest overarching generic trends and influences on policy and practice everywhere. Although we should be wary of generalisations, responses to both children and to disability do to some extent transcend specific cultural influences.

There has been a recent upsurge of recognition and interest in disabled children, a group who have historically been ignored and excluded both from their communities and from the majority of policy initiatives worldwide. Estimates suggest that there are 150–200 million children with disabilities globally, of these 93 million under 14 with moderate/severe impairments (WHO and World Bank, 2011; UNICEF, 2013). Around 5–10% of children have developmental difficulties (UNICEF, 2013); however, often, in many settings they are hidden from view.

Growing evidence, shows that disabled children are at a huge relative disadvantage compared with their nondisabled peers, across all sectors. This is true globally, across all regions and countries. For example they often have poorer access to healthcare and education, and experience increased levels of neglect, abuse and violence (WHO and World Bank, 2011).

This chapter discusses the drafting and negotiation of the Convention on the Rights of Persons with Disabilities, in which the perspective of users and survivors of psychiatry was successfully incorporated into public policy. I will describe the process and my involvement in it, and explain the factors that contributed to a successful outcome.

From June 2002 through December 2006 a process took place at the United Nations headquarters in New York City to draft and negotiate a human rights treaty that is now known as the Convention on the Rights of Persons with Disabilities (CRPD). This process was the culmination of years of work by the disability community and supportive states. Mexico succeeded in passing a General Assembly resolution to consider treaty proposals by persuading countries of the Global South that social development was enhanced when persons with disabilities are included as contributing members of society. The treaty was to draw on both human rights and social development. The human rights component was to become primary, and CRPD became the first human rights treaty of the 21st century.

Although users and survivors of psychiatry have had diverse and sometimes contentious relationships to the disability community, we were fortunate that the World Network of Users and Survivors of Psychiatry (WNUSP) was a member of the International Disability Alliance (IDA). As such, even though WNUSP was a young organization, it had an assured opportunity to participate in the treaty process. IDA was a forum for cooperation of the leadership of seven global disability organizations, which were mostly organizations of people with disabilities.

So far the approach of UK social policy to addressing inclusive education has been a pick-and-mix affair. It has primarily been related to notions of locational, social or functional integration (DES, 1978) rather than inclusion; that is, the wholesale restructuring of education in its totality, relating to human rights, social justice and principally about the politics of recognition (Barton, 2003). Indeed this can be seen as the global situation with few exceptions. As regards a participatory approach, educational state policy rarely includes the ‘voice’ of disabled people, a point raised by Oliver (1996), although in relation to welfare policy. Oliver’s comment is worth repeating (with amendment) in this context of inclusive education, that:

I have watched in dismay as [segregated educational services] continue to be reorganised on the basis of advice from people who have little or no experience of them and how the advice of [disabled people who have attended such provision] continues to be ignored. (Oliver, 1996: 43 –44; emphasis added)

The concept of inclusive education, rather than ‘integration’, emerged during the early 1990s, primarily through a series of conferences initiated and facilitated by a group of individuals but principally by Joe Whittaker (who was then situated at the University of Bolton, previously Bolton Institute of Higher Education, and currently a trustee of the Alliance for Inclusive Education). Among other initiatives, these conferences set the tone for change, and centrally involved disabled people at the forefront of sharing knowledge, drawing upon their own lived experiences.

Even the movement for education inclusion, led by disabled people, began life in 1990 as the Integration Alliance (emphasis added) with a name change to the Alliance for Inclusive Education (ALLFIE) in the mid-1990s.

The longstanding joint efforts of many disabled people’s organisations as well as the committed work of individual activists resulted in the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) in 2006. Signed and ratified by numerous countries along with the European Union, this unique international treaty also guarantees the fundamental rights of people with psychiatric diagnoses. Its Article 4 (3) stipulates that:

[i]n the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations. (emphasis added)

As clear and legally binding as this provision is, it cannot by itself reverse centuries of the exclusion and silencing of people labelled mad. Despite the latest discourses of personalisation, inclusion and co-production, the most important decisions about our lives continue to be made without us. Building on my long-time activism in the European movement of mental health service users and survivors of psychiatry as well as my research work, I want to explore how this happens and the prospects of us and our organisations becoming real instead of just declared protagonists in matters that directly affect our lives.

The advocacy and political work of many organisations of people who identify as mental health service users, psychiatric survivors or psychosocially disabled can be divided into the era before and after the UN CRPD. The injustices that our organisations have been protesting against for decades are now acknowledged as human rights violations (Russo and Shulkes, 2015).

The purpose of this chapter is to provide an overview of the issue of food poverty in Ireland, starting with a discussion of how it is defined, understood and measured in the Irish context. We then consider how it is experienced by those who are ‘food poor’ in Ireland before moving to review the nature and range of interventions that address the issue and identifying the main actors involved. A key argument within this discussion is that the relevant policy context is characterised by inaction, incoherence and ineffectiveness, with the community and voluntary sector stepping in to fill the vacuum left by state and market failure.

In their review of food poverty and policy in Ireland, Friel and Conlon (2004: 120) state that food poverty is the ‘inability to access a nutritionally adequate diet and the related impacts on health, culture and social participation’. Using a similar approach, Dowler et al (2001: 12) define food poverty as ‘the inability to consume an adequate quality or sufficient quantity of food in socially acceptable ways, or the uncertainty that one will be able to do so’. In their attempts to define this concept, many authors use the concept of food security as a starting point, which is articulated by the Food and Agriculture Organization (FAO, 2008: 1) as a situation that exists when ‘… all people, at all times, have physical, social and economic access to sufficient, safe and nutritious food which meets their dietary needs and food preferences for an active and healthy life’.

‘I came here for job. It was not easy. It was hard before because I didn’t speak English … it was difficult to go to job centre and apply for job. Now is easier because I speak English and I have job. Now is all right.’ Marek (M, 28, Slovakia)

‘To give people work. It’s very hard if people do not speak language

… this is very big question.’ Kornelie (F, 47, Romania)

This chapter explores the Beveridge ‘giant’ of ‘idleness’ – and its presumed slayer, a political commitment to achieving full employment – via the lens of ‘first hand’ experiences of Central and Eastern European (CEE) migrant Roma (‘Gypsy’) communities who have moved to the UK in the past decade or so from countries such as Slovakia and Romania. To do this, a few words will first be said about how we both understand and interpret ‘idleness’ and employment in the historical and contemporary age. This section will necessarily investigate the specific Beveridge approach to combatting ‘idleness’ and look at some of the fundamental diversity and equality issues that it raises, including racism, classism, xenophobia and sexism. Likewise, from an international or at least trans-European perspective, the chapter will locate and analyse what might be termed the ‘labour of language’. What is meant by this? In a later section it is argued that for many CEE Roma workers in the UK – such as Marek from Slovakia and Kornelie from Romania, who are quoted above – one of the first issues to be confronted is a ‘working language’ barrier, in addition to many other challenges in seeking even basic service provision in key social policy areas such as housing, social security, health and education.