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1 Introduction
Disability has long been a neglected topic within the field of international development studies. However, with the growth of a coordinated and influential disability movement, together with increased international recognition of disability as a human rights issue, the need to respond to disability is now emerging as a development priority that can no longer be ignored. The most obvious indication of this was the adoption in 2006 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), widely heralded as a landmark achievement for the disability movement and a âgame-changerâ in terms of raising awareness of disability rights on the international stage. The CRPD has now been ratified by the vast majority of nation states, signifying a near-global consensus on the need to remove the discriminatory barriers that hinder the full participation of disabled people in society. Governments around the world have followed up on this commitment by introducing a plethora of legislative and policy measures designed to foster more disability-inclusive societies. More recently, the post-2015 Sustainable Development Agenda, which boldly promises to âleave no one behindâ, highlights the rising profile of disability through several explicit references, in stark contrast to the Millennium Frameworkâs silence on the matter. Yet further evidence of the increased prominence of disability within mainstream development circles can be found in the Sendai Framework (United Nations, 2015),1 adopted at the 2015 World Disasters Conference as a blueprint to guide disaster risk reduction and management processes until 2030. Crucially, this framework goes beyond recognising the vulnerability of disabled people when disasters occur to highlighting their potential to become active agents of disaster planning and recovery.
Despite these encouraging signs, many disabled people around the world continue to experience blatant discrimination, frequently reinforced by social exclusion and economic deprivation. Evidence of this can be found in the first ever World Report on Disability, jointly published by the World Health Organization (WHO) and World Bank in 2011, which estimates that disabled people, as a group, constitute around 15 per cent of the worldâs population, with the vast majority of them living in the Global South. The Report draws on evidence from around 70 countries to highlight the close links between disability and poverty, with disabled people often subject to stigma, disrespect, prejudice and even violence, as well as being particularly disadvantaged in terms of access to education, healthcare, employment and political participation.
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The international development community has now clearly signalled its intention to confront the various forms of discrimination and injustice that create and reinforce disability. However, it is only by furthering our understanding of the issues and challenges facing disabled people on a daily basis that promises of a more inclusive society, in which disabled people are able to participate on an equal basis with others, can become a meaningful reality rather than empty rhetoric. This book aims to contribute to that process by providing a broad overview of various disability-related themes within this emerging field, drawing on an ever-growing body of empirical research that increasingly incorporates the perspectives of disabled people themselves.
Terminology
Disability is a complex phenomenon and its meaning is widely contested.2 The lack of consensus on how disability should be defined is reflected in the CRPD, which describes disability as arising from âthe interaction between persons with impairments and attitudinal and environmental barriersâ (United Nations, 2006, preamble (e)), but does not actually say what it is. This conceptual confusion is further reflected in disagreements among scholars within the field of disability studies over terminology. The issue is one of some significance, given that the choice of terminology can reflect the way in which disability is understood and how disabled people are perceived.
Historically, stigmatising and devaluing terms such as âinvalidâ, âcrippleâ or âretardedâ have been commonplace, reinforcing notions of disabled people as weak, helpless and inferior. While such terms are now widely regarded as discriminatory and inappropriate, they âcan still remain present in all societies around the worldâ (Iriarte et al., 2016, p. 8). The term âpeople/persons with disabilitiesâ, used in the CRPD and most other recent international agreements that make reference to disability,3 is perhaps now the most commonly used and widely accepted. This term is an example of âperson-first languageâ, which recognises that disability is just one of many components to a personâs identity. Singal (2010) argues that the use of person-first language is âextremely importantly in societies, predominantly of the South, where disability continues to be highly stigmatisingâ (p. 417). However, many scholars prefer the term âdisabled peopleâ, which emphasises the role of society in creating and reinforcing disability, thus moving away from the medical model perspective in which disability arises solely from impairment. Perhaps the most influential advocate of this choice of terminology is Mike Oliver (1990), a giant in the field of disability studies and a disabled person himself, who argues that disability should not be viewed as an added appendage, as the term âpeople with disabilitiesâ might imply, but as an intrinsic part of oneâs identity.
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While this book adopts the term âdisabled peopleâ, I recognise and fully respect that others will prefer person-first terminology. My advice to students is to choose whichever of these two terminology options they feel is most suitable, but to be mindful of the potential interpretations of the choice that they make. It also important to recognise that different expressions may be considered appropriate in different languages and cultures, so it is always advisable to ascertain the terminology preferences of disabled people themselves, wherever possible, when working or researching in different settings.
Another important terminology decision, in relation to this book, is reflected in the use of NorthâSouth terminology. The Global North is comprised of richer countries, such as those located in Western Europe and North America, that tend to dominate the global economy, while the Global South is made up of generally poorer countries that, in many cases, have historically been controlled, dominated or economically exploited by colonial powers, thus reinforcing their poverty and dependence (Meekosha, 2011). This is perhaps a rather simplistic way of distinguishing between richer and poorer countries, but I have adopted this terminology in preference to the use of terms such as âdevelopedâ and âdevelopingâ, which tend to imply the superiority of one country over another, as well as ignoring the rather obvious fact that, in reality, all countries are âdevelopingâ in one way or another. In referring to countries as part of the Global South or Global North, it is important to recognise that this does not imply homogeneity within either of these two blocs (Singal, 2010). All countries are characterised by a unique set of social, cultural, economic and political conditions that shape the experiences of those living within them, including disabled people.
Book structure and chapter summaries
Following this introductory chapter, the book is structured around nine further chapters which are briefly described below. While each of these chapters is self-contained, reading them sequentially will enable the reader to systematically build up an understanding of disability issues and related theoretical concepts that are frequently revisited in the chapters that follow. Each chapter includes a brief summary of key points, one or more reflection exercises and a short set of discussion questions, designed to facilitate self-reflection or group-based discussion among students and practitioners.
Chapter 2: Understanding, defining and measuring disability
This chapter introduces some of the main conceptual models of disability, including various individual models, the social model and the biopsychosocial model, each of which reflects a different way of understanding disability. These models are examined in terms of the perceptions that arise from them and their implications for policy and practice in relation to disability. There is a particular emphasis on the social model, which has contributed towards increased recognition of disability as a human rights issue but is sometimes questioned in terms of its relevance and applicability in the global context. The chapter also discusses the problems associated with measuring disability and presents a tool known as the âWashington Group Short Set of Questionsâ, underpinned by the WHOâs (2001) International Classification of Functioning, Disability and Health (known as the ICF), which is designed to overcome some of these challenges.
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Chapter 3: Disability, identity and shared experiences of poverty
Disabled people are individuals with multiple identities, rather than members of a homogeneous group. This chapter explores a wide range of factors that help to shape the identities of disabled people, both in a collective sense and individually, including differing perceptions arising from models of disability, impairment-related factors, personal circumstances, social differences and the cultural context. The chapter also explores the notion of a âcommonality of experienceâ among disabled people, based on shared experiences of discrimination and poverty, particularly in the Global South context. The close and complex relationship between disability and poverty is examined in conceptual terms, and also on the basis of a growing body of empirical evidence reflecting the real-life experiences of disabled people.
Chapter 4: International agreements on disability
The CRPD reflects a growing trend on the international stage for disability to be viewed as a human rights issue, rather than as a charity issue. This chapter starts by reviewing some significant international agreements that helped to pave the way for the CRPD, going right back to the 1948 Universal Declaration of Human Rights, before focusing on the content of the CRPD itself. This is followed by a discussion around some of the barriers to its implementation, particularly in the Global South context. The chapter also considers the extent to which the Sustainable Development Agenda takes account of disability, arguing that this framework presents a new opportunity for disability rights to be more fully recognised. Finally, the chapter reviews some important regional agreements, which reinforce the global agreements on disability while also taking account of more local concerns arising in different parts of the world.
Chapter 5: Disabled peopleâs organisations and the international disability rights movement
The international disability rights movement, comprising individual disabled peopleâs organisations (DPOs) operating at the grassroots level, district networks, national umbrella organisations and global coordinating bodies such as Disabled Peopleâs International, is one of the largest and most influential social movements in the world today. This chapter first examines the independent living movement, which began in the United States (US) in the 1960s, before describing the evolution of the broader disability rights movement that has been so successful in raising the profile of disability on the international stage. There is a particular focus on the key role played by DPOs within the movement and some of the challenges that they currently face. With the CRPD calling for DPOs to take a lead role in monitoring its implementation, the chapter discusses some of the dilemmas associated with the implementation of disability rights in practice, particularly where universal rights-based discourse may conflict with local-level priorities. Finally, the chapter explores the concept of disability mainstreaming, a strategy designed to ensure that development policies and programmes take full account of disability, and the closely associated twin-track approach, which is often seen as a solution to the perceived limitations of mainstreaming.
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Chapter 6: Disability, health and rehabilitation
Disabled people are often denied access to health and rehabilitation services, as a result of which they tend to have higher levels of unmet health needs than the general population and are more vulnerable to poverty and social exclusion (WHO and World Bank, 2011). This chapter first identifies some of the health risk factors that are commonly associated with disability and discusses the evolving concept of rehabilitation. This is followed by an analysis of various issues that need to be addressed by development planners and practitioners in order to ensure that disabled people are able to access appropriate health and rehabilitation services, structured around the four key areas of accessibility, affordability, availability and quality. The chapter then explores the concept of community-based rehabilitation (CBR), a term that is used to describe strategies that involve drawing on community resources to meet the health and rehabilitation needs of disabled people and to empower them to live full and active lives within their communities.
Chapter 7: Access to education
It has been estimated that disabled children account for over a third of those children that do not attend school (Guernsey et al., 2006), while those that do attend are frequently excluded within the classroom and less likely to complete their education (UNESCO, 2015). This chapter examines three strategic approaches to facilitating the education of disabled children â special education, integrated education and inclusive education. The chapter then reviews a series of international agreements that have underpinned initiatives such as Education for All (EFA) and Universal Primary Education (UPE), while increasingly encouraging governments around the world to embrace the concept of inclusive education. Finally, the chapter discusses some of the challenges associated with the implementation of inclusive education, particularly in resource-poor settings, ...