Second Edition
polity
Copyright © Colin Barnes and Geof Mercer 2010
The right of Colin Barnes and Geof Mercer to be identified as Authors of this Work has been asserted in accordance with the UK Copyright, Designs and Patents Act 1988.
First published in 2010 by Polity Press
Polity Press
65 Bridge Street
Cambridge CB2 1UR, UK
Polity Press
350 Main Street
Malden, MA 02148, USA
All rights reserved. Except for the quotation of short passages for the purpose of criticism and review, no part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publisher.
ISBN-13: 978-0-7456-9891-5
A catalogue record for this book is available from the British Library.
The publisher has used its best endeavours to ensure that the URLs for external websites referred to in this book are correct and active at the time of going to press. However, the publisher has no responsibility for the websites and can make no guarantee that a site will remain live or that the content is or will remain appropriate.
Every effort has been made to trace all copyright holders, but if any have been inadvertently overlooked the publisher will be pleased to include any necessary credits in any subsequent reprint or edition.
For further information on Polity, visit our website: www.politybooks.com
IN the first edition of Exploring Disability (Barnes, Mercer and Shakespeare, 1999) we highlighted the extraordinary politicization of disability, particularly since the 1960s. Campaigns by disabled people and their organizations challenged the dominant view of ‘chronic illness and disability’ and its overwhelming preoccupation with an individual’s functional limitations and perceived ‘abnormalities’, whether in mind or body. In contrast, disabled activists redirected attention to the importance of the diverse social, cultural, economic and political barriers to inclusion in everyday life experienced by many people with impairments. Increasingly, these protests have gathered support from disabled people around the world.
The campaigns have also made a growing impression on governments and disability policy. High-profile concerns include poverty and employment, cultural representations, disability rights, user involvement in services, anti-discrimination legislation, euthanasia and genetics. At the same time, contributions to academic theorizing and researching disability have drawn on a broader range of disciplinary influences, besides attracting more mainstream recognition. This is evident in the remarkable growth in books and journal articles on disability across the humanities, education, law and the social sciences. One direct consequence has been the emergence of a distinctive subject area of ‘disability studies’ in universities and colleges.
This burgeoning interest in disability issues warranted more than the basic revisions and updating already required to a volume published ten years ago. Most notably, two chapters have been written specifically for this edition. The first considers recent developments in genetics and their implications for people with accredited impairments and long-term illness conditions. The second additional chapter focuses on the expanding literature on disability and impairment in poorer or underdeveloped countries.
We hope that this second edition offers an up-to-date, wide-ranging and critical review of key issues and debates relevant to sociological studies of disability.
WE recognize the inspiration of the many disabled individuals and their allies who have, over the years, struggled to put disability on the political agenda, without whom this book would not have been written.
Those readers familiar with the first edition of Exploring Disability will note that Tom Shakespeare no longer appears as a co-author. He participated in some of the early discussions, but felt unable to devote the time necessary to preparing this second edition because of his commitments to other writing and research projects. We want to record our thanks for his support.
Finally, we are grateful to the following organizations for permission to reprint the following material: Figure 2.1: The World Health Organization for figure in WHO (1980, p. 30) International Classification of Impairments, Disabilities and Handicaps, Geneva: World Health Organization; Figure 2.3: The World Health Organization for figure in WHO (2001, p. 18) International Classification of Functioning, Disability and Health, Geneva: World Health Organization; Table 5.1: Edward Elgar Publishing for Table 2.1 in K. Vleminckx and J. Berghman (2001) Social Exclusion and the Welfare State: an Overview of Conceptual Issues and Implications. In D. G. Mayes, J. Berghman and R. Salais (eds), Social Exclusion and European Policy, Cheltenham: Edward Elgar; Figure 5.3: The Cabinet Office for Table 2.1 in Cabinet Office (2005) Improving the Life Chances of Disabled People: Final Report, London: The Cabinet Office. (Available at: http://www.strategy.gov.uk/downloads/workareas/disability/disabilityreport/index.htm); Figure 6.1: The Open University Press for Table 2 in S. M. Peace, L. A. Kellaher and D. M. Willcocks (1997) Re-evaluating Residential Care, Buckingham: Open University Press; Figure 10.1: The Department for International Development for Figure 2 (Poverty and Disability – a vicious circle) in Department for International Development (DfID) (2000) Disability, Poverty and Development, London: DfID. (Available at: http://www.dfid.gov.uk/Documents/publications/disabilitypovertydevelopment.pdf).
IN Western industrialized societies, ‘disability’ is widely regarded as an individual failing and a personal tragedy. This is confirmed by its pre-eminent medical diagnosis in terms of individual pathology, and associated deficits, abnormalities and functional limitations. Crucially, these difficulties become both the explanations for the wide-ranging social disadvantages and dependence and the justification for routine intervention in disabled people’s lives by health and social welfare professionals. This approach is further confirmed in public attitudes towards the ‘victims’ that emphasize ‘imaginative concern, mawkish sentimentality, indifference, rejection and hostility’ (Thomas, 1982, p. 4).
In the 1960s, disabled activists in North America, Scandinavia and Western Europe initiated campaigns against this disability orthodoxy. The goal was to shift public and policy attention away from its overwhelming preoccupation with individual ‘incapacity’ as the source of their dependency and marginalization. Instead, the spotlight was directed onto the role of ‘disabling barriers’ (social, economic, cultural and political) in excluding disabled people from participation in mainstream society and denying their citizenship rights (Finkelstein, 1980; DeJong, 1981).
The academic community was relatively slow to attribute any significance to disabled people’s political actions, let alone to recognize the potential of social analyses of disability. ‘There were no disjunctures between the dominant cultural narrative of disability and the academic narrative. They supported and defended each other’ (Linton, 1998a, p. 1). It was not until the 1990s that a trend towards rethinking disability gathered momentum. This is evident in the sustained growth in monographs, edited collections and specialist journals, which warranted claims of a distinct field of ‘disability studies’, with specialist university programmes appearing around the world. Moreover, contributions have expanded across the social sciences, education, law and the humanities (for example, Butler and Parr, 1999; Gleeson, 1999; Albrecht et al., 2001; Longmore and Omansky, 2001; Stiker, 1999; Breslin and Yee, 2002; Snyder et al., 2002; Borsay, 2005; Tremain, 2005a; Goodley and Lawthom, 2006; Pothier and Devlin, 2006; Florian, 2007).
The aim of this book is to explore key issues and themes in developing a sociology of disability, while drawing on insights from other (social science) disciplines. In this introductory chapter we prepare the ground by, first, tracing the grass-roots origins of critical responses to the dominant ‘personal tragedy’ approach and the instigation of a new ‘disability politics’ to challenge conventional theory and practice. Second, we outline key parameters for sociological analyses of disability, and the diversity in theoretical perspectives and the contrasting implications for studying disability. We conclude with an overview and rationale of the central issues examined in subsequent chapters.
A significant stimulus to recent academic and policy debates on disability has been the politicization of disabled people. Groups of disabled people have set up their own organizations with an overtly political agenda to campaign against discrimination and for greater inclusion in mainstream society. While there had been important instances of protest by groups of disabled people earlier in the twentieth century, it was the rise of the American Independent Living Movement (ILM) in the 1970s that first attracted international awareness of the politicization of disability and the possibilities for collective action (Bowe, 1978; Longmore and Omansky, 2001). In Europe, disabled people prompted a variety of innovative projects, such as accessible housing in Sweden (Brattgard, 1974; Grunewald, 1974) and the Het Dorp community in the Netherlands (Zola, 1982).
The exponents of this new disability politics embarked on ‘a struggle for both self-determination and self-definition’ (Longmore and Omansky, 2001, p. 8). Historically, disabled people have been ‘isolated, incarcerated, observed, written about, operated on, instructed, implanted, regulated, treated, institutionalized, and controlled to a degree probably unequal to that experienced by any other minority group’ (Davis, 1997, p. 1). Disabled people now highlighted their everyday familiarity with social and environmental barriers, restricted life chances, and negative cultural representations. This required a re-evaluation of their individual and collective support needs and rights. It encompassed a critique of the regulation of disabled people’s everyday lives by a diverse group of health and welfare professionals. Disability activists did not deny the positive potential of appropriate medical and allied intervention. Rather, they challenged those professional experts who equated disability solely with functional limitations and concentrated service provision on individual rehabilitation and adjustment.
Needless to say, disabled people’s campaigns demonstrated the influence of contrasting national and historical contexts, such as the role of the welfare state in disability policy. In the USA, for example, the primary spur to political activity was the characterization of disabled people as a minority group who were denied basic civil rights and equal opportunities. This emulated protest movements by black people and women (Zola, 1983; Hahn, 1985; Linton 1998a). In the UK, activists favoured an interpretation of disability as a form of social oppression or exclusion encountered by people with impairments. This underscored arguments for radical social change rather than piecemeal reforms as the means for overturning the disabling (capitalist) society (Finkelstein, 1980; Oliver, 1983).
Notwithstanding these differences, the new disability politics identified a distinctive set of policy objectives for improving disabled people’s life chances. These ranged from civil/citizenship rights, independent living in the community and equal access in the built environment, to mainstreaming education, employment and leisure opportunities. Such campaigns generated increasing interest around the world. In 1981, Disabled Peoples’ International (DPI), an international umbrella for organizations controlled and run by disabled people, was formed. A decade later, 4,000 delegates from over 120 countries attended its third world congress in 1992 (DPI, 1992).
A range of important initiatives emerged at the international level (Albrecht et al., 2001; Barton, 2001; Barnes and Mercer, 2005a, 2005b). The United Nations (UN) introduced measures on the rights of disabled people, notably the General Assembly’s Declaration on the Rights of Disabled People in 1975. It nominated 1981 the International Year of Disabled Persons and proclaimed 1983–92 as the Decade of Disabled Persons. Disabled people’s protests also helped persuade the World Health Organization (WHO) to replace the International Classification of Impairments, Disabilities and Handicaps (ICIDH) (WHO, 1980) with the International Classification of Functioning, Disability and Health (shortened to ICF), which sought to incorporate medical and social approaches (WHO, 2001a). Governments in North America, Europe and Australasia responded with policies to improve disabled people’s everyday lives, recognize the rights of disabled people, and introduce anti-discrimination legislation (Clear, 2000; Bickenbach, 2001a; CEC, 2003; Doyle, 2008).
However, an individual, medicalized perspective exercises an enduring influence around the world on public and policy debates about disabled people’s support needs, as in ‘special education’ and segregated/sheltered employment options (Longmore and Omansky, 2001; Ratzka, 2003; Morris, 2004). The slow progress of disabled people’s campaigns sparked renewed discussion about the aims and strategies of disability politics around equality and inclusion, identity and representation, citizenship and human rights.
How then might sociological analyses contribute to understanding disability and its changing political and policy profile? In his celebrated essay on the sociological imagination, C. Wright Mills (1970) argued that the discipline has a particular contribution to make to social and political analyses by encouraging critical reflection on seemingly ‘personal troubles’. These affect individuals and their social relations with others but are more appropriately understood as ‘public issues’ linked to social institutions and society more generally (ibid., p. 14). Hence, the sociological interest in reviewing the connections between individual experiences and biography and wider historical and political circumstances:
Deeply immersed in our daily routines, though, we hardly ever pause to think about the meaning of what we have gone through; even less often have we the opportunity to compare our private experience with the fate of others, to see the social in the individual, the general in the particular; this is precisely what sociologists can do for us. We would expect them to show how our individual biographies intertwine with the history we share with fellow human beings. (Bauman, 1990, p. 10, emphasis in original)
As an illustration, the failure of a disabled individual to obtain paid employment is widely explained in terms of individual shortcomings. However, if the unemployment rate for disabled people is much higher than that of the rest of the population, an alternative account might be more persuasive. One suggestion would be that the disabled population generally experiences exclusion from the workplace because of structural factors or discrimination. This moves the explanation from the individual level to collective social disadvantage, and a different set of policy responses.
This illustrates a fundamental sociological theme of the value of reassessing familiar or common-sense ways of thinking and behaving. ‘The fascination of sociology lies in the fact that its perspective makes us see in a new light the very world in which we have lived all our lives’ (Berger, 1963, p. 21). Apparently ‘natural’ attitudes, institutions, processes and structures are regarded as contingent on social factors and contexts, while sustained and modified by human action. The aim is not to replace ‘error’ with incontestable ‘truth’, but rather to engage in critical reflection to improve our understanding of the social world (Bauman, 1990).
Additionally, comparative studies of disability illustrate the diverse understandings of disability that exist outside British (and Western) society. It is equally necessary to recover the ‘world we have lost’ to examine how and why attitudes and practices towards disability vary historically. Moreover, ‘Sociology cannot be a neutral intellectual endeavour, indifferent to the practical consequences of its analysis for those whose conduct forms its object of study’ (Giddens, 1982a, p. vii). Instead, social inquiry should draw on the comparative and historical standpoints to produce a ‘critique of existing forms of society’ and prompt an awareness of ‘alternative futures’ (Giddens, 1982b, p. 26).
From this basic statement of intent, a number of themes dominate theoretical debates in sociology:
Firstly, sociology is concerned to understand the meaning of social action, that is the subjective perspective, emotions and feelings of human agents as social individuals. Secondly, sociology is concerned with the relationship between agency and structure. Sociology attempts to explore the relationship between human action and the structural determination of social relations by certain constraining elements which in general we can describe as power relations. Third, classical sociology has been organised around the problem of social order, that is the question of social integration through the presence of consensus and constraint in human life. Quite simply, sociology is concerned with the ultimate question of ‘How is society possible?’ Finally, sociology is about the analysis of the social processes and circumstances which constantly disrupt and disorganise the fragile order of social relations and social exchange. We can summarise this problem as the question of social inequality, because it is through an analysis of the unequal distribution of power (in terms of class, status and power) that we can begin to understand the de-stabilisation of social relations and social systems through organised conflict and individual resistance. (Turner, 1995, p. 3)
To understand the social world, it is necessary to explore people’s subjective ‘definition of the situation’ and their attempts to navigate its inherent uncertainties and dilemmas. A central assumption underpinning social action is that human beings are creative in that they have a capacity for choice or ‘agency’, but are still constrained to some degree in what they think and do. This has led to considerable variation in assessments of the relative importance of agency and structure. Some accounts emphasize structural factors and stress how behaviour and attitudes have their bases in the social circumstances and the social groups to which people belong. Other approaches represent social interaction as far less ‘determined’.
Another major area of debate in classical sociology is the basis of social order and the sources and containment of potential disruption. Social order is often fragile, with diverse and competing interests, so that accounts have polarized in how far they represent social life and its underlying structures and processes as characterized more by consensus or conflict. A consensus approach assumes that social stability is maintained because of the effectiveness of socialization, so that people generally accept the benefits of co-operation and the legitimacy of political regulation. In contrast, from a conflict perspective, society is distinguished by power inequalities, with diverse and frequently antagonistic material and other concerns.
This raises further questions about the main forms of social control, power and regulation. Typically, dominant social groups seek ways to perpetuate and enhance their privileged position and to secure the compliance of subordinate groups, whether by overt use of power and authority or through more covert influence and manipulation, perhaps by generating a set of ideas (ideology) that reflect and sustain the position of a social group. Over recent decades, increased significance has been accorded to ‘ideological domination’, hegemony and the generation of ‘willing consent’, which potentially deflects attention away from structural (class) inequalities (Gramsci, 1971, 1985). At the same time, it is important to investigate how dominant groups are destabilized and new ideologies become the basis for collective resistance and mobilization.
This literature links with another major sociological topic: the extent and character of social inequalities and exclusion. A vital question is how socially defined groups (based typically in industrialized societies on social class) are located differently in respect of power and status. It is illustrated by empirical studies in such areas as income, education and the labour market. Over recent years, the preoccupation with social class inequalities has been displaced as a result of criticism that sociologists have ignored or disregarded the significance of other lines of social divisions, based, for example, on age, gender and ethnicity.
A next step is to translate these broad sociological themes into a widely used conceptual framework that differentiates, at least for analytical purposes, between micro-individual, meso-social group or institutional, and macro-societal levels of inquiry (Turner, 1995; Layder, 1997).
At the micro-level, there is a range of interactionist and interpretative perspectives, including symbolic interactionism (relations between the individual and society that focus on symbolic processes of communication), phenomenology (the interpretation of the everyday activities and routines people employ to give meaning to social life) and ethnomethodology (how people produce or make sense of the everyday world and its taken-for-granted aspects). For instance, ‘experiential’ approaches examine how meanings emerge from, and are modified through, interaction. An associated issue is how individual self-identity links with everyday routines and changes over time and between social contexts. The study of face-to-face interaction spans less formal contexts, such as the family and household, to more organized settings such as the workplace, residential institutions and encounters with professional experts. Most micro-level approaches stress that interaction is part of a negotiated and emergent, rather than fixed or determined, social process.
The meso-level spotlight is on social institutions, roles and norms, along with the potential links across levels. This has encouraged studies of impairment, disability and the disabled body as the product of social and cultural practices, and how specific conditions or attributes such as ‘mental illness’ or ‘mental handicap’ are ‘stigmatized’ (see chapter 3). A core focus is the separation of ‘normal’ and ‘deviant’ behaviour and attitudes. This labelling entails a social judgement, with definitions and meanings contested and liable to vary over time and between societies and cultures (Becker, 1963). A related focus includes the activities and impact of specialized, bureaucratic institutions (in such areas as health, education and welfare).
The macro-level comprises the overall societal organization of systems, including the state, economy and social policy. These subjects are explored by a diverse group of structuralist and systems approaches, such as functionalism and neo-Marxism. Among the latter group, materialist and political economy analyses have been very influential in their portrayal of the relationship between capitalism, power and patterns of inequality. A minority group (or groups) has access to disproportionate power, economic resources and knowledge. A specific focus is the relationship between dominant groups and the role of the state and how far it helps to sustain the power, status and material rewards of specific groups, the medical profession among them. A parallel literature identifies significant shifts towards a post-modern society and culture. This is highlighted by trends in industrialized societies towards greater diversity, including new lines of social fragmentation and a growing pluralism in cultural allegiances.
A notable, recent ferment in social theory has been driven by debates within social constructionism. There was a rejection of modernist ‘grand narratives’ stretching back to the Enlightenment period in the late eighteenth century. Instead, shifting social and cultural conditions heralded a new post-modern era, with a distinctive ‘cultural turn’ in social theory (Lyotard, 1984). Post-structuralists (such as Jacques Derrida and Michel Foucault) broke with assumptions of a single, progressively evolving reality or truth and traditional authority and hierarchies of knowledge, while stressing multiple realities, discontinuity and difference (Burr, 1996). This presents a sharp contrast to orthodox approaches to the ‘social construction of reality’ in which ideas and practices are externalized and accepted at the ‘common-sense’ level (Berger and Luckmann, 1967). In different ways, the ethnomethodological and post-structuralist literatures stress the importance of language in social interaction and in ‘shaping social order’ (Jaworski and Coupland, 1999, p. 3). The post-structuralist literature draws heavily on Michel Foucault’s (1965, 1976, 1980) analysis of the interrelationship between knowledge and power. This emphasizes a distinctive view of power as subject-creating and a source of self- rather than external regulation, as well as how discourses generate rather than reflect social reality.
The fervour for post-structuralism has generated renewed interest in critical realism, with a distinctive ontological stance (on the character of social reality). It shares a materialist focus and assumption that phenomena exist irrespective of whether we have knowledge of them or linguistic concepts to describe them. Its epistemological position (theory of knowledge) is that what we know must not be confused with what actually exists (ontology) – a view attributed to post-structuralism. Moreover, ‘mind-independent generative structures’ and a range of non-observable causal mechanisms have an impact on social life irrespective of whether their existence is ‘known’ (Bhaskar, 1998). This has important implications in contradicting post-structural accounts of human bodies and impairment.
Understanding disability requires analyses of experiences at the individual level, the social construction and creation of disability and ‘middle-range’ theorizing, together with broader analyses of societal power and social inequalities. Yet, while most sociologists distinguish several levels at which sociological analysis operates, these are not discrete areas in everyday practice. Additionally, strategic concepts, such as power, span more than one level.
Initially, disabled people’s campaigns around disability generated little academic curiosity, whether in the social sciences or the humanities. There were occasional references to the social disadvantages and environmental barriers affecting disabled people (Blaxter, 1976; Safilios-Rothschild, 1976), but relatively few attempts to reconsider existing theoretical accounts and go beyond individual, biologically based explanations (Bogdan and Biklen, 1977; DeJong, 1979a). Indeed, it was a few disabled academics with close links to disabled people’s political campaigns – such as Irving Zola (1982) in America and Vic Finkelstein (1980) and Mike Oliver (1983) in the UK – who proved most influential in raising the profile of disability for a social science audience.
In the 1970s, there were two main points of entry for disability into academic debates: first, through the examination of social problems; and, second, via studies of ‘chronic illness and disability’ by medical sociologists. In America, in particular, there was a long-established tradition of studying the social problems associated with industrialization and urbanization such as poverty, crime, drug use and family breakdown (Gouldner, 1970). Social problems were widely described as a discrepancy between what is and what people think ought to be (Merton, 1966). In textbooks on social problems, this standard menu of topics was increasingly complemented by a chapter on ‘mental disorder’ and sometimes ‘mental handicap’ (Merton and Nisbet, 1966; Neubeck, 1979). This literature sought explanations of the social origins and trajectory of social problems as well as likely policy remedies.
A new brand of constructionist accounts presented the foremost challenge to this realist approach by moving the spotlight from the search for underlying structural causes to people’s subjective understandings of social problems. That said, from an ethnomethodological perspective, the crucial analytical issue is not whether there is an objective basis to social problems but how these are constituted as important (or not) by individuals (Garfinkel, 1967; Spector and Kitsuse, 1977). Besides this, ‘strict’ constructionists did not see it as their role to inform social movement practice in seeking social change or evaluating the accuracy of claims-makers’ arguments (Holstein and Miller, 1993).
Another major source of theorizing and research on disability emanated from sociological studies of ‘chronic illness and disability’. Talcott Parsons’s (1951) functionalist investigation of illness as a social status as much as a biophysical condition highlighted the sick role and doctor–patient encounters. This heralded a shift away from a ‘medical model’ of health and illness and towards analysing ‘disability’ as a form of social deviance. An interactionist literature focused on the social processes of labelling and the problems of living with a ‘stigmatized’ condition (Becker, 1963; Goffman, 1963; Scheff, 1966). On a related tack, interpretive approaches gained prominence, stressing the ‘insider’s view’ of long-term illness and impairment and the impact on social relationships, sense of self and identity (Edgerton, 1967; Strauss, 1975).
The traditional sociological focus on social inequalities, primarily those rooted in social class, endured into the 1970s. At that time, criticism of the neglect of other social divisions, notably those located in gender, ethnicity and ‘race’, opened up new lines of theorizing and research. Yet, it was not until the 1990s that investigations of the form and extent of socio-economic disadvantages and inequalities facing disabled people began to attract noticeable academic attention. Familiar social inequality themes emerge, such as whether material and normative divisions are related to disability; how far disability produces a distinctive, collective identity; and how far, and in what ways, disability interacts with or mediates other lines of social division.
The academic literature largely ignored or disputed the social barriers approach promoted by disabled people’s organizations, with disability redefined as a form of social oppression. Radical disability theorists roundly condemned the sociological and social policy literature for not breaking with the traditional functional limitations perspective (Oliver, 1990). More recently, social theory has taken new directions, especially in the humanities and cultural studies, with interdisciplinary approaches flourishing. Post-structuralist analyses of competing discourses exerted a growing influence (Foucault, 1980). In the case of disability, a biomedical discourse achieved pre-eminence in the production by specific practitioners and institutions of ‘welfare subjects’, their needs and management. In turn, competing discourses, such as those advanced by disabled activists, are ‘problematized’ and deconstructed. At the same time, there is a much greater willingness to acknowledge that disability raises significant normative and ethical issues of general public concern, from social justice to the quality and meaning of life (Corker and Shakespeare, 2002; Snyder et al., 2002; Williams, 2003; Tremain, 2005a; Davis, 2006; Snyder and Mitchell, 2006).
Our preference is for a socio-political approach that incorporates the understandings and priorities of disabled people. Despite our differences with some of the mainstream academic approaches, there are also opportunities worth exploring for a cross-fertilization of ideas in theorizing and researching disability (Barnes and Mercer, 1996, 2003; Scambler, 2004; Thomas, 2007). Potential areas include the experience of disability, and its variation across social contexts and groups; the social processes by which perceived impairments become the basis for disablement; how people with impairments are dealt with by professional (and other) agencies of social control; and the political economy of the structural conditions and policy responses which produce impairment and sustain disability, including suggested qualitative shifts to industrial capitalism and subsequent developments, to a late modern if not post-modern society.
It is now widely accepted that the language and concepts we use influence and reflect our understanding of the social world. This standpoint informs campaigns against prejudicial attitudes and stereotypes from a diverse range of disadvantaged groups, including women, minority ethnic groups, older people, lesbians and gay men. Equally, where impairment is defined in negative terms, this reinforces disparaging attitudes, with disabled people pitied and patronized as tragic victims.
In the English-speaking world, terms such as ‘cripple’, ‘spastic’ and ‘mongol’ lost their original technical meaning and became terms of abuse. Yet, as the translation of impairment and disability illustrates, there is not always an exact equivalent in other languages. Thus, the term ‘handicap’ now has oppressive connotations in English-speaking countries because of its historical association with begging and charity or reduced capacity, although this is not always the case in other languages. For example, Disabled Peoples’ International (DPI) initially adopted the terms ‘disability’ and ‘handicap’ (DPI, 1982; Driedger, 1989), emulating the World Health Organization’s ICIDH (WHO, 1980). A decade later DPI Europe opted instead to use ‘impairment’ and ‘disability’ (DPI, 1994).
While recognizing that choice of terminology is very contentious, even among those identifying as disabled people, in this book we follow (with some qualifications) the terminology agreed in 1981 at its inception by the British Council (of Organizations) of Disabled People (BCODP) – since 2006 renamed the UK Disabled People’s Council (UKDPC). This differentiates ‘impairment’, as a medically classified biophysiological condition, from ‘disability’, which denotes the social disadvantage experienced by people with an accredited impairment. As a result, we avoid the phrase ‘people with disabilities’ (except in quotations from others) because it both blurs the conceptual division between impairment and disability and implies that impairment defines an individual’s identity. Similarly, we steer clear of words that depersonalize individuals, such as ‘the deaf’ or ‘the mad’. What is at issue is far more than a choice of words but the most appropriate way to understand and contest disability.
The starting point in chapter 2 is contrasting historical views of disability. This provides a necessary context to a review of the main approaches to disability at the present time. These comprise the individualized, or ‘socio-medical’, classification of ‘impairments, disabilities and handicaps’ (WHO, 1980); a social model of disability advanced by activists in Britain (Oliver, 1983, 1990); and recent attempts to synthesize these competing accounts by the WHO (2001a).
The medical sociology literature on ‘chronic illness’ that contains the traditional location for studies of ‘disability’ is considered in chapter 3. A pre-eminent interactionist and phenomenological emphasis on experiential accounts of illness often downplays the impact of structural factors, or ‘disabling barriers’. Other issues overlap more immediately with social model preoccupations, ranging from the medicalization of social problems and professional dominance to newer (post-structuralist) themes, particularly Michel Foucault’s (1965, 1976) distinctive discourse analysis and social constructionism, in respect of both the ‘disabled body’ and ‘madness’.
Chapter 4 traces the emergence of attempts to theorize disability, underlining the competing arguments over structural or materialist accounts compared with those rooted in individual experience. It examines calls for ‘bringing impairment back in’ as well as the relative absence of studies of other important social divisions affecting the lives of disabled people, including gender, minority ethnic status, and ‘race’, age and sexuality. Additionally, this chapter discusses the relationship between sociological studies of ‘chronic illness and disability’, along with the application of post-structuralist analyses to disability and arguments for an embodied approach to disability. This raises fundamental questions about the direction and status of ‘social model’ theorizing and its disregard for analyses of ‘impairment effects’.
Chapter 5 documents the materialization of disability policy with the rise of the welfare state since the mid-twentieth century. It traces the various social, economic, political and cultural barriers confronting disabled people and the impact of accelerating the privatization and commodification of welfare and support. The systematic exclusion of disabled people is discussed in terms of key institutions of contemporary society, such as education, employment and the labour market, and the built environment. These aspects are also addressed in chapter 6, particularly the role of social welfare policy in the lives of disabled people. A central interest is the critique advanced by disabled people’s organizations of ‘care’ and ‘dependency’ and the promotion of ‘independent living’, with its underpinning of specific support needs and the policies that best advance this goal, such as direct payments and user-controlled services.
The next two chapters illustrate the changing political and cultural contexts of disability. Chapter 7 begins with an evaluation of the social forces precipitating the arrival of the disabled people’s movement over recent decades and subsequently explores the arguments, both theoretical and empirical, surrounding its role as a catalyst for meaningful social change in light of the apparent recent adoption of socio-political solutions to the problem of disability by politicians and policy-makers in many societies. Chapter 8 explores the role of culture, media and leisure in the social construction of disability and the significance of disability culture and arts in forging a positive disabled identity.
Chapter 9 appraises the concerns, contradictions and moral dilemmas for advocates and supporters of a disability rights agenda triggered by eugenic and euthanasia-type solutions to perceived impairments and long-term health conditions, including the Human Genome Project, within Western societies. The issues surrounding the moral justification for prenatal screening, selective abortion and ‘mercy killing’ are set within recent developments in biomedical technology, medical ethics, rising costs of health and welfare provision, ageing populations, and the pursuit of bodily perfection.
Finally, chapter 10 examines understandings and experiences of disability and impairment in poorer, underdeveloped societies and the implications of transferring Western-oriented approaches. It highlights the interrelationship between economic development, poverty, impairment and disability. Further attention is given to the ‘internationalization’ of disability and the growing involvement of supranational agencies, governments and non-governmental organizations (NGOs). This is mirrored by the politicization of disabled people and their organizations, together with the emergence of a disability rights agenda and schemes to promote inclusion.