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2 July 2015

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.

A middle-aged woman is standing with a young lad, staring at a group of men in wheelchairs. The boy is pointing at the wheelchair-users saying

'Oh look it's the disabled' © Crippen

Language is important. It is through language that we come to relate to and understand ourselves and other people around us. We use language to make sense of the way other people relate to us. Through language we construct expectations of each other, assign roles to each other and make meaning of the roles assigned to us.

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    

References
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

Please click on this link to read an interview with Colin Cameron on development of the Affirmative Model of Disability

Comments

Brian Combe

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31 October 2017

This is my personal opinion and others rightfully exist but has someone who has medical conditions which makes some activities difficult or not possible to do, I am a person first. My disabilities are properties of my person.

I am not disabled as a person, I still function as a person. My person is not malfunctioning. My body is not fully able to do some things, just as shorter person may not be able to reach a high shelf without climbing a ladder. In this respect I prefer the term "Person with a Disability". It's more accurate just as a truly 'disabled toilet' would be non-functioning.

Crippen

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25 July 2015

@Richard Downs: "Shall we dance? On a bright cloud of music shall we fly? Shall we dance? Shall we then say "Goodnight and mean "Goodbye"?!

Colin Hambrook

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14 July 2015

We’ve been having this argument about language for over 20 years and it looks like it is going to carry on I think, partly because society is making so many retrogressive steps in terms of disability rights. The argument that ‘people with disabilities’ puts the person first is flawed, however. It revolves around the idea that we are multi-faceted and that impairment is only one aspect of who we are and that as such we are people first. Disability isn’t something we ‘have’. We don’t carry it around with us. Disability as a definition explains our experience of oppression. It is as much about class as it is about impairment. I am often disabled by situations when I talk about my experience of mental health issues. When I talk about facing oppressive structures within the mental health system it is often seen that it is ‘my’ mental illness talking, rather than that I am questioning a hierarchy that has dedicated itself to maintaining power structures that are rooted in ideas of ‘professionalism’ that segregates and isolates individuals who don’t fit in.

Sancha Donald

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8 July 2015

Interesting, humorous "partnership with my disability", and gives consistent clarity around disabled arts. However as you know in most places in Australia the person is put first. Therefore artists with disability and arts + disability are the words that Accessible Arts uses.

richard downes

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7 July 2015

Nice summation by Colin and a nice extra comment from Steve Kean but what I want to know from Crippen is; are they conjoined wheelchair users, or Siamese wheelchair users modelling a Yul Brynner look? Such is the relationship in disability arts between the King and I.

Steve Kean

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6 July 2015

A very interesting viewpoint. In recent months, I have felt that it is more appropriate for me to call myself a disabled artist rather than an artist with a disability, but I really couldn't articulate why and this article helps. I am not in "partnership with my disability" as "artist with a disability" might suggest. And putting the "person first" has always felt awkward, like my disability existed in addition to or on top of the person I am. That never felt right either. My physicalness is as much a part of who I am and how I deal with the world and create art as any other part of me. How I see the world from my predominantly seated perspective directly affects how I work as an artist and informs my thinking. It is absolutely integral to my artistic processes.

As a matter of fact, I am working on a series called, "The Way I See You" showing the rest of the world what they look like from my perspective.

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