An Introduction to Disability Studies

David Johnstone

• Publisher: Routledge
• Year: 2012
• ISBN:
  9781136613326
• Edition: 2
• Topic: Bildung
• Subtopic: Bildung Allgemein

Disability studies has become a legitimate area of academic study. It is multi-disciplinary in its critique of the oppressions that have historically "dumped" disabled people on the margins of society. This fully revised and updated edition not only explains disability studies as an academic field of inquiry, it also explores many of the current issues affecting the lives and circumstances of disabled people. The book explores and analyzes "quality of life" factors in the lives of disabled people in relation to the professional development of undergraduates and examines the emergence of "rights" for disabled people in the local area, the UK and abroad. The author indicates the strengths and weaknesses of organizations "of" and "for" disabled people, and provides examples of individual and institutional oppressions against disabled people and "success stories, " exploring how these have been overcome in education and employment. The book suggests how disabled and non-disabled people can collaborate in the development of inclusive communities and neighborhoods. The text is suitable for students taking courses in the areas of health, social care and allied services at NVQ, BTEC, Degree and PGCE level. The author encourages students to raise their own questions and develop their own forms of inquiry.

Chapter 1

Why Study Disability? Some Explanatory Beginnings

Questions

• Consider the competing explanations for the oppression and ‘invisibility’ of disabled people.
• What do you think might be wrong with a social model of disablement?
• What do you consider to be some of the fundamental controversies and challenges posed by the study of disability?
• Is an academic study of disability only possible in advanced capitalist economies?

Introduction

The study and explanation of disability as difference is not new; disablement as bodily difference has been a distinguishing feature marking individuals throughout the centuries. Disability Studies, on the other hand, is a relatively recent area of academic study. The applied study of disability tends to cross disciplinary boundaries and draws on a variety of disciplines including philosophy, sociology, psychology, history and the experiences of disabled people. The functional and theoretical relationships between these elements inform the boundaries of our understanding of both a personal disability identity and notions of how to identify with disability politics at a community level (Peters 2000). Ultimately, Disability Studies forms a basis for understanding both disability culture and social justice.

The conceptual underpinnings of Disability Studies has tended to borrow vocabulary and thereby definitions from other areas of the social sciences. Early discourses tended to be dominated by associating the language of disability with its history, reflected in medicine, psychology, sociology and anthropology. These disciplines conceptualised disability as a deviant individual experience within a dominant culture. But as disabled people came together in groups, new layers of meaning have been drawn to create socio/political debates of disablement. This has encouraged consideration of disability as both an individual and a public, cross-cultural experience (Peters 2000).

The distinctions between impairment, handicap and disability, developed by the World Health Organisation (WHO), have remained a universal benchmark for any documentation around ‘disability’. The three terms have, deliberately or not, emphasised the layers of discrimination that link disablement with both medical interventions, individual tragedy and economic loss in post-industrial society. The WHO labels form a hierarchy of oppression and have come to be judged as inadequate, with their emphasis on functional and individual loss. This has been highlighted and emphasised in the bizarre and frequently undignified attempts by life insurance companies to justify a value-distinction on bodily loss as a result of an accident or injury; e.g. is the loss of four fingers and a thumb more or less financially traumatic than the loss of speech? The WHO categories also emphasise the sheer number of medically determined disabled people that there are in the world. The first estimates of the incidence of disability conducted in the 1970s suggested that 10 per cent of any population was likely to be disabled (WHO 1982). This estimate included disability associated with malnutrition; when this is excluded the figure is between 6 per cent and 7 per cent of the human population, equating to a global figure of 245 million disabled, impaired and handicapped people world wide (Helander 1993).

The International Classification of Impairments, Disabilities and Handicaps (ICIDH) (Wood 1980) developed by the WHO tended to inform the discourse as a starting point for causality rather than offering any analysis. Over the intervening years these definitions have been scrutinised and rejected, most noticeably by disabled people and their organisations. The assumptions that underpin the terminologies have been criticised for the way in which they perpetuate images of negativity and disability as disadvantage.

Labelling and Stereotypes

There is some controversy over terminology in relation to the category or label ‘disabled’; however, it would be difficult to believe that being labelled has no effect on a person’s feelings about him or herself. Preconceptions about how individuals with disabilities are expected to act are held by many people and it is often believed that certain kinds of social behaviour are an inevitable consequence of the disabling condition, e.g. that children with Down syndrome ‘love’ music, or that a blind person is more sensitive to atmospheres.

Labelling has long been associated with disablement and the history of the Disability Movement is littered with descriptions taken from the school playground, the workplace, religious texts and superstitions. The labels themselves have emerged from the implicit disapproval and associations with ‘unworthiness’ that lie at the heart of society’s judgement of normative differences and disability as deviance. Deviance in this context is considered as behaviour that is interpreted as being abnormal and thus unacceptable by the cultural group or society. Formal and informal law individualises deviance through labelling. Rather than transcending acts of discrimination by appearing impartial and neutral, the officers of law and the judiciary are subject to the same prejudices as those from whom it is meant to stand apart. The lack of shared meanings about the value attached to labels of disability versus ability means that the simplistic metaphor associating ‘goodness’ with able-bodiedness is pitted against ‘evil’ in the form of bodily loss or physical dysfunction.

This analogy can be extended to a consideration of the disfiguring divide that is imposed upon disabled people by prejudiced assumptions about the levels of contributions made to society by disabled people. The image of disabled people as ‘crippled’ or broken units of industrial production fits well with the philanthropic legacy of the alms house, the industrial revolution and the asylums. It also reinforces the historical characterisation of disability as solely a functional condition which is characterised by being cared for or as a personal deficit. The perception of disability as biologically determined reappears throughout history. It runs alongside the ancient, antagonistic associations of the evil, demonic (and frequently masculine) forces that lead to impairment, disability and handicap that are pitted against the gentler, more feminine and re-generative sources of goodness. Disability stereotypes are as contentious as those around feminism and multiculturalism. The principle features of my argument can be outlined as follows, and are worth some further consideration:

• Male stereotype as an effective unit of industrial production v female stereotype as a unit of service and reproduction.
• The emergence of ‘need’ builds on the more feminine stereotype of the servant/carer.
• The stereotypical image of the disabled person reinforces the image of ‘crippled’ or impaired production.
• Diversification of peoples performance as economic units in a post-industrial society brings the search for alternative roles.
• The structure and definition of disability shifts to include social disadvantage in different forms.
• Role diversification and new labels. Disabled people become both a source for newly feminised services and a potential labour force as service providers.

Stigma and Disability

Diagnosing the physiological or psychological state of a person has long been important as a means of determining individual pathology or functional disability. It not only serves as a basis for undertaking curative or remedial treatments but is also clearly linked to medical–biological labels and explanation for individual treatments and conditions

Labels may emerge as a consequence of embarrassment, shame or stigmatisation. One of the inherent evils of labelling is that the label comes to be viewed as an attribute of the individual concerned. A learning difficulty, for example, may be associated with a disease within an individual. This contrasts with the view that learning difficulties arise as a consequence of a multilayered relationship of variables within an individual’s social environment. Put simply, behaviours that constitute abnormality or emotional disturbance for one group in society may not be considered as such in another society or social situation.

Nevertheless, there are, of course, a number of arguments in support of the benefits of labels:

• It is often noted that funding and administrative decision making is based on labels and therefore labelling is necessary in order to distribute funds and allowances.
• Labelling a population helps professional carers, researchers and service providers to communicate to one another about what kinds of impairments and disabilities are being referred to (e.g. in evaluating research studies it is helpful to know the characteristics of the population with whom the investigation was carried out).
• If the present labels were to be abolished a new set of labels and/or descriptive terms would evolve to take their place. In other words people with disabilities will probably always be perceived/perceive themselves as being different. (However, people do not necessarily need a label in order to recognise that there are individual differences in behaviours.)
• Labelling helps to spotlight issues and causes for the general public. Charities, for example, have relied on the public reacting sympathetically to the characteristic stereotype of a group of people or a cause that has been labelled in accessible language.

Stigma, as an extreme form of labelling, has come to be associated with some of the more negative features of definition. Goffman, one of the main authorities to discuss the term, sees its origination in the ancient Greek culture that associated stigma with ‘bodily signs designed to expose something unusual and bad about the moral status of the signifier. The signs were cut or burned into the body and advertised the bearer was a slave, a criminal or a traitor’ (Goffman 1970: 21).

Stigma has, thus, become a term usually identified with a variety of socially inferior attributes that, in their turn are assumed to be associated with a group or an individual. The term concerns deviance from a supposed norm and tends to be ascribed as a permanent attribute. This may help to explain why train spotters tend to be considered merely eccentric, whereas disabled people are permanently stigmatised as individuals.

Critics of Goffman’s view have suggested that this stance supports a normative view of the unchanging nature of society. Finkelstein (1979, 1987), for example, has accused Goffman of neutralising the insidious role that stigma plays in attempting to justify the maintenance of oppressive relationships between different social groups. Thus, stigma buttresses and maintains a status quo in a system where one stratum of society can continue to oppress another. If this perspective is applied to disabled people it begins to suggest that disabled people are responsible for their own suffering and that the rest of society is somehow relieved from any responsibility for its remediation. In such circumstances it is easy to see how the stigmatised are expected to seek out a role for themselves that is tantamount to acceptance and passivity. This means they also continue to maintain a view of themselves that is dependent and segregated.

Stigma, as an extreme form of labelling, tends to be associated with the victimisation of individuals or groups. The relationship between stigma, disablement and labelling theory are closely allied to the problem of prejudice:

Disability is the product of definitions and practices that seek to exclude individuals who might be seen to deviate from the socially constructed norms of the ‘able bodied’. In short, ‘disability’ is what a ‘disablist’ society decides so to call. ... It is not the inherent nature of disability that matters, but the labelling process, which categorises people by virtue of their position in relation to the dominant structures and values of the society.

(Bury 1996: 25)

The evidence from labelling and stigma theory suggests that expectations concerning disabled people can be biased by stereotypes. For example Szivos (1992) reminds us that when we write and speak of ‘people with learning disabilities’ we are unconsciously condoning the devaluation of one of their defining attributes as a collective group. By relegating some disabilities to the status ‘of an almost unmentionable afterthought’ some of the positive assertions attributed to other minorities are ignored, e.g. the proud assertions of the gay pride movement and sisterhood are denied to people with disabilities:

Would we now use the apologetic phrasing of ‘people who are black’ or ‘people who are female’ when we have the proud assertions ‘black people’, ‘women’ or ‘sisters’? I think not. Perhaps it is too soon to envisage a similar slogan of ‘slow is beautiful’.

(Szivos 1992: 127)

Nevertheless, it is with labels and language that change takes place. With the growing consciousness of an emerging disability culture there is some evidence of self- and group identification with disability as a positive identification; although it is not necessarily central to all disabled persons’ self-definition. There is also some suggestion that disabled people feel a common group identity:

we have described ourselves as ‘the unexpected minority’ rejecting ‘handicap’ as a social construction, and embracing ‘disabled’ as an essential reality that has become essential to our personal identity.

(Peters 2000: 590)

Impairment, Disability and Handicap

The search for an agreed model and definition of disability has been most eloquently explored and explained in the United Kingdom by Oliver (e.g. 1983, 1990, 1996a, 2000). Much of the early theorising of a nascent Disability Studies in the 1970s and 1980s attempted to explain disability through the dominant relationship between illness, impairments and disablement.

The current legal definition of disability in the United Kingdom is set out in the Disability Discrimination Act (1995). It is a masterpiece of ambiguity. The definition draws on terms which are themselves fraught with complexity in their interpretation:

a person has a disability if he has a physical or mental impairment which has a substantial long term adverse effect on his ability to carry out normal day to day activities.

(Disability Discrimination Act, HMSO 1995: 1)

The experience of disablement can immediately be seen to be perpetuating the association between disability and individual loss of function, rather than with any collective act of discrimination by society. As a result the understanding of impairment or loss as the legitimate basis for disability is reinforced.

This definition acknowledges and reinforces the link with chronic illness as the foundation for the disadvantages that disabled people experience. The causality of disability is explained hierarchically and in the context of personal health. This is consistent with the classifications devised by the World Health Organisation (WHO 1976 International Classification Document A29/INF.DOC/1):

Impairment – In the context of h...