Approaching Disability

Critical issues and perspectives

Rebecca Mallett, Katherine Runswick-Cole

• Publisher: Routledge
• Year: 2014
• eBook ISBN: 9781317657514
• Topic: Education
• Subtopic: Education General

Disability Studies is an area of study which examines social, political, cultural, and economic factors that define 'disability' and establish personal and collective responses to difference. This insightful new text will introduce readers to the discipline of Disability Studies and enable them to engage in the lively debates within the field. By offering an accessible yet rigorous approach to Disability Studies, the authors provide a critical analysis of key current issues and consider ways in which the subject can be studied through national and international perspectives, policies, culture and history.

Key debates include:

• The relationship between activism and the academy
• Ways to study cultural and media representations of disability
• The importance of disability history and how societies can change
• National and international perspectives on children, childhood and education
• Political perspectives on disability and identity
• The place of the body in disability theory

This text offers real-world examples of topics that are important to debates and offers a much needed truly international scope on the questions at hand. It is an essential read for any individual studying, practising or with an interest in Disability Studies.

Part I Approaching disability

1 Approaching disability Foundational perspectives

10.4324/9781315765464-3

Introduction

The aim of this chapter is to enable you to identify, describe and explain the foundational issues and concepts within Disability Studies. In order to introduce you to the key issues in this area, the chapter begins by exploring different meanings of ‘disability’ using legal, individual, medical and sociological definitions. The development of Disability Studies and the role of disabled people within the discipline are also examined. Finally, the social model of disability, which is sometimes described as British Disability Studies’ ‘big idea’ (Hasler, 1993), is introduced, explored and challenged.

Section 1 What is disability?

Action Point: What is disability? Write a sentence defining the term ‘disability’. How do you understand the word? How would you explain its meaning to someone else? Keep your definition and return to it at the end of the chapter.

As you will realise from trying to answer the questions above, defining ‘disability’ is not a simple matter. If we look to a dictionary definition, the Oxford English Dictionary (2007:556) tells us that disability is:

1. a. Lack of ability (to discharge any office or function); inability, incapacity; weakness. b. An instance of lack of ability. Chiefly in pl. Now rare.
2. A physical or mental condition that limits a person's movements, senses, or activities; (as a mass noun) the fact or state of having such a condition.
3. Incapacity in the eye of the law, or created by the law; a restriction framed to prevent any person or class of persons from sharing in duties or privileges which would otherwise be open to them; legal disqualification.

Thus, the OED presents a variety of definitions of what disability is. The first definition describes ‘disability’ in terms of ‘lack’. This reflects an understanding of disability known as the individual model of disability, which defines disability in terms of a tragic problem for isolated, unfortunate individuals (Oliver, 1990). The individual model focuses on a disability as what the individual cannot do or what is wrong with them. The second OED definition defines disability in terms of a ‘condition’. This definition reflects what has been called a medical model of disability (ibid.). The medical model deems disability to be a functional limitation that is biologically or physiologically determined. The medical model emphasises individual pathology, individual (personal) deficit and individual medical treatment. The third definition in the OED frames disability in terms of a legal definition. Clearly, legal definitions of disability vary from nation-state to nation-state, but in the United Kingdom a disabled person is defined in the Equality Act 2010 as having a disability for the purposes of the Act if he or she has a ‘physical or mental impairment’ and ‘the impairment has a substantial and long-term adverse effect on [his or her] ability to carry out normal day-to-day activities’.

Internationally, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which ‘aims to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’ (United Nations, 2007: Article 1), defines a ‘person with disabilities’ in the following terms: ‘Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.’

All of the definitions above – individual, medical and legal – define disability as something that an individual person has. In contrast to this, Disabled People International's (DPI) definition of disability does something different. DPI (1982 cited in Goodley, 2011:6) offers a distinction between impairment and disability:

• IMPAIRMENT: is the functional limitation within the individual caused by physical, mental or sensory impairment.
• DISABILITY: is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers.

The DPI definition describes disability in social terms, and as the consequence of social barriers. Impairment and disability are seen as distinct. Impairment is produced by functional limitations of the body, but disability is the result of physical and social barriers. As we shall discuss in Section 2 and throughout this chapter, a model of disability that defines disability as a form of social oppression is what usually distinguishes the study of disability within Disability Studies from approaches within other disciplines, such as psychology or medicine.

Key Issue: ‘Person with a disability’ or ‘disabled person’?

There has been a great deal of debate about the ‘correct’ language to use when talking about people and disability. This is because it is through ‘language’ that our ideas and assumptions are shaped, and these, in turn, directly affect the ways people are treated and valued (Mallett and Slater, 2014). As Titchkosky (2001) has explored, our choice of language has a material impact upon the lives we all lead.

Many people use ‘people with disabilities’; this is referred to as ‘people first’ language and is preferred because it is thought to stress the person (or ‘personhood’) before disability. However, in Britain the preferred term used by the disabled people's movement is ‘disabled person’ (Barnes, 1992; Carson, 2009). This term stresses the view that disability is something done to a person, not something a person individually has. Shakespeare (2006:33) has criticised others for ‘quibbling’ over the use of ‘person with a disability’ or ‘disabled person’, claiming that both terms can be supportive of disability rights and social inclusion, but, as Aubrecht (2012), drawing on Titchkosky (2001), argues, language choices are very significant and are worth in-depth consideration.

In a discussion on language preferences, Aubrecht (2012:34), states: ‘my description of myself as a disabled person reflects an interest in reclaiming the living significance of disability in how I understand what it means to be recognized as a person within ablest social and cultural environments.’ In other words, by shifting the language you can also shift the focus from understanding disability as abnormal difference in an individual and towards understanding disability as being done to an individual by society. This chapter focuses on this shift in understanding and examines its implications.

Section 2 The emergence of disability studies and its relationships with the disabled people's movement

In the United Kingdom, Disability Studies has been described as a ‘ragbag’ of ideas covering a diverse range of issues (Oliver and Barton, 2000:1). These issues include ‘oppression, emancipation, representation, struggle, inclusion, independence, discrimination, rights, genocide and so on’ (ibid.:1). What unites most approaches within contemporary Disability Studies is the rejection of any model of disability that locates (the problem of) disability within the person (Albrecht et al., 2001). Disability is instead seen as a social issue: (the problem of) disability is firmly positioned in terms of barriers in the social world, not ‘problems’ within the individual. The idea that disability should be understood as a sociological concept, rather than as a biological difficulty for tragic, isolated individuals, is key to understanding the discipline of Disability Studies in the United Kingdom.

Action Point: Accurately locating the ‘problem’ is an important idea within Disability Studies. What would your answers be to the following questions:

• What does it mean to talk about the ‘problem’ of disability?
• Who has the ‘problem’?
• Does the ‘problem’ need to be solved?
• If so, who takes, or should take, responsibility for solving the problem?

A further distinguishing feature of Disability Studies is that it is an interdisciplinary study, which means that it cuts across traditional disciplinary divides. As a result, a range of people from different disciplines have made significant contributions to Disability Studies, including people writing from psychology (Finkelstein, 1980; Goodley, 2011), sociology (Oliver, 1990); medical sociology (Bury, 1997), literary theory and cultural studies (Mallett, 2009; Snyder and Mitchell, 2006) and education (Barton, 1997; Slee, 1997). Currently, in UK colleges and universities Disability Studies is taught as part of a range of academic and professional courses including social work, education, nursing, health care, cultural studies, sociology and psychology, and as a discipline in its own right at undergraduate and postgraduate levels.

Despite its popularity, Disability Studies is a relatively new discipline. Before the 1990s, discussion of disability within academia usually took place within the fields of medicine and psychology (Barnes, 2008). This meant that the experiences of disabled people were largely seen in terms of individual biological and psychological processes, rather than as social issues. In the 1940s, the medical sociologist Talcott Parsons argued that the ‘normal’ state of being for humans was good health. Parsons saw ‘normal’ people as able to contribute to the economy and family life, and as playing a crucial role in holding society together (Thomas, 2007). Anyone who deviated from that ‘norm’, including ‘the sick’ and ‘the disabled’, was viewed as deviant and as a threat to the maintenance of a ‘healthy’ society (ibid.). Managing health and illness became a key concern for Parsons. In his book The Social System (1951), Parsons identified the ‘sick role’. He argued that ‘the sick’ and ‘the disabled’ were not to be held responsible for their condition and could be excused from work or contributing to family life, but only if they adopted his understanding of ‘the sick role’, which required people to follow doctor's orders and to try to ‘get better’. Failure to comply with medical treatments and/or to seek rehabilitation was seen as a threat by the ‘deviant’ individual to the health of society.

Key Concept: The ‘sick role’ (Parsons, 1951)

In 1951, Parsons identified ‘four aspects of the institutionalized expectation system relative to the sick role’ (1951:436). Briefly, for the person who occupies the ‘sick role’, these four aspects are as follows:

1. The ‘sick’ person is not to be held responsible for his or her incapacity, as it is beyond his or her control.
2. The ‘sick’ person is released from social role obligations (such as work and contributing to maintaining family life).

Only on condition that:

1. the person tries to get well;
2. the person seeks appropriate help (i.e. from a physician) and follows advice given.

However, early as 1960s there were challenges to traditional approaches to disability. Goffman (1963) began to examine the stigma associated with disability, and the idea of stigma was taken up by Paul Hunt (1966), a disabled person himself, in his book Stigma: The Experience of Disability. Indeed, many academics in the field of Disability Studies are themselves disabled activists (Oliver, 1990). The close links Disability Studies has with disabled people have had the welcome effect of blurring the distinction between the researcher and the researched (Goodley and Lawthom, 2006).

A key example of the contribution to Disability Studies made by disabled people is the work of the Union of the Physically Impaired Against Segregation (UPIAS), a group of people with physical and sensory impairments. In the 1970s, UPIAS was extremely influential in developing thinking about disability. The group's origins stemmed from a letter that Paul Hunt, who was resident in a Cheshire Home, sent to The Guardian in 1972, which called for a consumer group to represent people living in institutions (the letter is reproduced in Figure 1.1). Working alongside Hunt, Vic Finklestein was another key player in UPIAS. Fi...

Table of contents

• Cover Page
• Half Title Page
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• List of figures
• Preface: how to use this book
• Acknowledgements
• PART I Approaching disability
• PART II Critical perspectives
• PART III Critical issues
• PART IV Conclusion and future directions
• References
• Index