Okay, so what’s the beef with language? Why is it important to us to be named as ‘disabled people’, rather than ‘people with disabilities’. Dr Colin Cameron gives an overview of the Social Model of Disability, which has underpinned the Disability Arts and the Disability Rights Movement over the last 30 years. He explains why ‘disability’ has come to denote the barriers disabled people face, rather than the impairments we live with.
Language shapes the way we see and think about and experience the world. It makes possible who it is possible for us to be, and also makes it possible for us to resist what we have become.
As Titchkosky and Michalko (2014:101) have pointed out, disability is lived in the midst of the meanings given to it. The meaning of disability, they say, is given whenever we speak of it, act upon it, or even think of it:
People may subscribe to one particular story of disability. An important story today says that disability is a social phenomenon produced by a society’s failure to respond adequately to impairment… This story, however we judge it, does not eliminate other dominant storytellers, such as medicine, that tell the story of disability as something unwanted that lurks in an individual and must be rooted out or managed.
In other words, disability is a contested identity. It has been a major focus of the disabled people’s movement since the 1970s to try and shift the way that disability is talked about, acted upon and thought of in everyday life. The problem has been that traditionally disability has been regarded as an embodied characteristic, as something wrong with the bodies of some people. This is expressed in the following definitions set out by the World Health Organisation, the first from 1980 and the second from 2012. Within these, disability is understood as:
any restriction or lack (resulting from impairment) of ability to perform an activity in the manner or within the range considered normal for a human being (Cameron, 2014:99)
an umbrella term, covering impairments, activity limitations, and participation restrictions (Mallett and Slater, 2014:92).
These definitions express the individual model of disability, sometimes also known as the medical model. Within the individual model, disability is regarded as resulting from impairment, or being the same as impairment. It is identified as an individual problem, as something that people ‘have’ or that is ‘part’ of a person, and is described in fairly negative terms of deficit, abnormality, limitation and restriction. It is this negative characterisation that causes many people to avoid association with the term and to embrace what Michalko (2002:10) has termed ‘person-first ideology’:
Suggesting that disability is merely a secondary feature of one’s identity and that we are persons first and persons with disabilities disavows both deviance and disability. It refocuses attention from the disability to the person who happens to have it (Michalko, 2002:11).
The social model, developed initially by the Union of the Physically Impaired Against Segregation, challenged the dominant individual model view by identifying disability as an unequal social relationship. Within the social model disability is:
the disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from the mainstream of social activities (UPIAS 1976:14).
This definition was broadened by Disabled People’s International in 1981 to include people with sensory, emotional and cognitive impairments. Here, 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 (Barnes, 1992:2).
From a social model viewpoint, disability is not something people have (we are not people with disabilities), but is something done to people with impairments. People with impairments are disabled by poor or non-existent access to the public places where ordinary life happens and by the condescending or unwelcoming responses of those who occupy these places. ‘Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.’ (UPIAS, 1976:14).
For example, in 2014 a UK university campus underwent a complete redevelopment of its main reception and teaching building. This would have involved spending a great deal of money. When the brand new refurbished building was opened it became clear that the door to the shop that sells sweets and stuff was not wide enough for someone using a power wheelchair to get into. A student who is a power wheelchair user would be unable, then, to go in to buy a curly-wurly, a bottle of water or a pack of Always Ultra. At best, she would have to ask a friend to go in and buy these for her. An individual model view would say that this student cannot get into the shop because she has a disability which means she has to use a power wheelchair. A social model view would say she is disabled by poor access and the lack of thought/ignorance of the people who commissioned, designed and built the place.
Whether we have physical, sensory, emotional or cognitive impairments, as disabled people we have a right to regard these as being a core part of what makes us who we are, not as something to distance ourselves from or be ashamed about. While impairment can sometimes be nasty, messy, painful, and certainly isn’t all we are about, it is a big part of us. It needs to be recognised, affirmed and included on that basis. It isn’t our bodies that we need to be angry at, but the treatment dished out to people with impairments in a disabling society.
As a distinct cultural practice, Disability Arts has its roots deeply embedded within the disabled people’s movement and in disabled people’s struggle for equality. As Allan Sutherland has commented:
I don’t think disability arts would have happened without disability politics coming first… Our politics teach us that we are oppressed, not inferior… Our politics have given us self-esteem. They have taught us, not simply to value ourselves, but to value ourselves as disabled people (Sutherland, 1989: 159).
Disability Arts has played, and continues to play, an important role in the ongoing campaigning activity of disabled people for inclusion as equals on their own terms in ordinary community life. In its widest sense it is about the creative expression of a social model view. It involves a rejection of narratives which tell us that impairment can only be experienced as limiting inconvenience and an affirmation of difference. It is not therapy, which has its place (Barnes and Mercer, 2010) and it is not art for art’s sake, which might be characterised as self-indulgent. It is art produced by disabled people that is critically and socially engaged.
Heaton (2014) has warned that it is a dangerous position to think that everything is in place to ensure disabled people have an equal opportunity to take part in society. Partial access hints at the possibility of inclusion but remains frustratingly out of reach.
Tregaskis (2004) describes the way in which, while practising inclusion in terms of providing access, service providers often continue to hold stereotyped and belittling attitudes towards disabled people, shaping their words and behaviours.
In the face of new assaults upon disabled people in terms of cuts to welfare entitlements, increasing media demonisation and ‘Othering’, and the continuing rise of disablist hate crime, there is an ongoing need for vigilance in our words, actions and thoughts about disability. The distinction between being ‘disabled people’ and ‘people with disabilities’ might seem a small thing, but it isn’t.
Colin Cameron is a senior lecturer in Disability Studies at Northumbria University, Newcastle upon Tyne. Email: colin.cameron[at]northumbria.ac.uk
Barnes, C. (1994) Disabled People in Britain and Discrimination: A Case for Anti-Discrimination Legislation. London: Hurst and Co. in association with BCODP
Barnes, C. and Mercer, G. (2010) Exploring Disability, Cambridge: Polity
Cameron, C. (2014) ‘The Medical Model’, in C. Cameron (ed.) Disability Studies: A Student’s Guide, London: Sage, pp 98-101
Heaton, T. (2014) ‘Access’, in C. Cameron (ed.) Disability Studies: A Student’s Guide, London: Sage, pp.1-3
Mallett, R. and Slater, J. (2014) ‘Language’, in C. Cameron (ed.) Disability Studies: A Student’s Guide, London: Sage, pp 91-94
Michalko, R. (2002) The difference that disability makes. Philadelphia, PA: Temple University Press
Sutherland, A. (1989) ‘Disability Arts, Disability Politics’, DAIL Magazine, September 1989, reprinted in A. Pointon and C. Davies, (eds) Framed: Interrogating Disability in the Mediam London: BFI, p.159
Titchkosky, T. and Michalko, R. (2014) ‘Narrative’ in C. Cameron (ed.) Disability Studies: A Student’s Guide, London: Sage, pp 101-103
Tregaskis, C. (2004) Constructions of Disability: Researching the Interface Between Disabled and Non-disabled People. London: Routledge
Union of the Physically Impaired Against Segregation (UPIAS) (1976) Fundamental Principles of Disability, London: UPIAS