The First LSE Disability Identity Conference .

10:00am – 11:00am

Registration

11:00am – 11:20am

Opening RemarksAndy Farrell and Mat Fraser

(Thai Theatre)

11:20am – 11:50am

Affirmative Action Model Colin Cameron(Thai Theatre)

11:50am – 12:20pm

RepresentationNicola Martin, Eric Baurdoux and Emily Freeman

(Thai Theatre)

12:30pm – 1:30pm

Education PanelJenna Marangoni, Armine Ishkanian, Peter Aldridge, Kelsey Beninger, Alison Wilde and

Vanita Sundaram(NAB 1.15)

Employment PanelStuart Newton, Laurent Cadet de Fontenay, David Ruebain, Lord Addington, and Vikki

Chinn(Thai Theatre)

1:30pm – 2:25pm Lunch Break

2:30pm – 3:00pm Space .Erin Pritchard(Thai Theatre)

3:00pm – 3:45pm NeurodiversityRoss Cooper and Pierre Marsh

(Thai Theatre)

3:45pm - 4:40pm Personal PerspectivesNathan Gyebi-Ababio and John Horan

(Thai Theatre)

4:40pm – 4:50pm PoetryAllan Sutherland(Thai Theatre)

4:50pm – 5:00pm Closing Remarks(Thai Theatre)

5:00pm – 6:00pm Informal Discussion and Tea Break(NAB 2.06)

6:00pm – 9:00pm Comedy Show Featuring Laurence Clark and Mat Fraser (NAB Level 8)

Conference Agenda4 MAY 2011 | 10:00 – 21:00

A one day conference, and evening of entertainment, sponsored by the LSE Annual Fund, exploring the theme of disability identity.

4th May 2011. 10-30 am to 5pm. Thai Theatre. New Academic Building (NAB), 6 to 9pm. NAB 8th Floor. Evening reception, comedy event.

Disability is problematised far more than it is celebrated as an aspect of diversity. Individuality can be subsumed beneath stereotyping and an assumption of homogeneity by impairment label. Parents who have, or are expecting, a disabled child (or children) rarely have access to positive images.Impairment and disability are not automatic bedfellows but socially constructed disabling barriers frequently create the biggest source of frustration and limitation encountered by disabled people .Media portrayals of disabled people often project stereotypes which are usually negative and sometimes in the ‘triumph over tragedy’ mode. Disabled people are increasingly challenging this image and describing themselves in positive and affirmative ways and the term ‘disability pride’ is gaining popularity. Disabled students in elite universities are by definition exceptionally high achievers.

The conference draws exclusively on the research and experiences of disabled people to explore the theme of disability identity and challenge stereotypes. Contributors include members of the LSE community, and external speakers, all of whom are personally affected by disability. Well known comedians who are also disability activists will entertain us in the evening. Mat Fraser (pictured), actor, writer, comedian and President of the National Association of Disability Practitioners, will be our Master of Ceremonies.

Sample Abstracts

School Trips

I shall give a short presentation “School trips: a personal history”. I am a disabled (mobility impaired) parent of a (mobility impaired) disabled child. I have lived through the various legal regimes dealing with the intersection of education and disability. The first occasion upon which I was ‘officially’ the victim of less favourable treatment was when my primary school head teacher refused to allow me to go on a schools cruise in 1967. The advent of various pieces of legislation has made discrimination of this sort illegal, but anything out of the ordinary in the school day still requires its particular solution.

Peter Alldridge

The Affirmative Model

Identifying disability as a productive as well as a restrictive relationship, the

affirmative model is a tool which offers insight into the everyday processes

through which people with impairments are turned into disabled people.

Disability is not just about what people with impairments are prevented from

doing and being, but about what they are required to do and be instead.

Whether this involves taking on roles of passive dependency or triumph over

tragedy, either way negates the lived experience of impairment and signifies

the desirability of normality. While every self-affirming act performed by a

disabled person that validates their own subject position as an impaired

person involves an act of transgression, the affirmative model demands a

recognition of impairment as an ordinary rather than an extraordinary

characteristic of human experience, and for inclusion within ordinary life on

that basis.

Colin Cameron

The Holist Manifesto

The holist manifesto is based on principles of the social model of disability and neurodiversity. It is also underpinned by two realisations that were first articulated in the Bagatelle Model of specific learning differences (Cooper, 2010). The first is that all people with specific learning ‘difficulties’ have two things in common: a strong need to process information holistically for them to be meaningful and difficulties with working memory. The second realisation is that apparent ‘difficulties’ with working memory are a product of a strong need

to process information holistically, since unlike sequential processing, holistic processing requires imagination rather than working memory. This then makes holistic learners vulnerable to the charge of appearing to have ‘difficulties’ with any process which requires working memory. (Sequential thinkers could be vulnerable to the charge of a lack of imagination, but sadly, schools are rarely concerned with this inability).The school sector is dominated by the requirement to process information sequentially, depending on working memory and indeed rote learning creating significant barriers to holistic learners. This is largely because education serves the fundamental purpose of social reproduction. This requires a close control over what is learned, how it is learned, in what order, and how it is assessed. Consequently, holistic learners are unintentional casualties of this arbitrary imposition. We are systematically invalidated, bullied, humiliated, punished, medicated and imprisoned. Yet holistic thinkers (notwithstanding their apparent ‘difficulties’) are at the forefront of original thinking, problem solving and creative endeavours. The world needs us rather more than we need them. The political implications are that we need to challenge the imposition of sequential thinking, teaching and assessment. There should be no tyranny of ‘experts’, no ‘remediation’ without representation. Holistic approaches and values should be supported in a context of the free association of ideas. Together we represent at least 20% of the population. We are entitled to be different and to learn and work differently for the benefit of all. This is not just about education, it is time for a political and social agenda of neuro-liberation.

Ross Cooper

The Chimera of Choice: Negotiating Disability Identity in the Era of Big Society

I begin this paper by critically examining and analysing the assessment and diagnosis process which involves the defining, categorising, labelling, and classifying of children with learning disabilities or special education needs. I consider the advantages and disadvantages of having a diagnosis and the implications of that in the current socio-economic and political context (i.e., the era of austerity, cuts and Big Society). The Big Society approach, which Prime Minister David Cameron identified as his political priority and ‘defining mission’, is driven by a discourse which privileges a devolution of power from central government to local communities, privatisation, collective action and the transfer of responsibility of providing social services from the state to non-state actors. In the area of education, this approach will lead to the greater expansion of academies and the introduction of ‘free’ schools in England. There are many questions about how these schools will be governed and whether they will be under the same duties as state-maintained schools. Building on my earlier discussion, I finish the paper by examining the possible consequences of increasing privatisation and localism in the area of education for children who are classified as having special education needs. In doing so, I problematise the discourses of ‘choice’, ‘individual and collective responsibility’, ‘participation’ and ‘empowerment’ which underlie the Big

Society approach. My discussion is informed by my personal experience of having a son who was recently diagnosed with Asperger’s Syndrome.

Armine Ishkanian

Representation and Identity

Representation of disabled people in popular media often relies on stereotyping and the discourse of triumph over tragedy. Disabled people are increasingly contesting the homogeneous and largely negative identity that these images impose and seeking to reflect the diversity and ordinariness of their varied lives. The presentation discusses the role of imagery in the social construction of disability. Representation of and by disabled people in various contexts is considered. Majority world concerns are reflected.

Nicola Martin

Dwarfism, Identity and Inclusion

Limited awareness of the social model of disability by non disabled people can lead to stereotyping, a sense of homogeneity, and a lack of understanding of who is disabled and how disability is socially constructed. Stereotypical representations of dwarfs construct a misleading view of dwarfism. Confusion arises around whether and in what sort of ways dwarfs may experience disability. This can lead to problems around identity and social inclusion . Although people with dwarfism have a very visible impairment which attracts a lot of negative attention disabled and non-disabled people are often ambivalent about whether dwarfs are disabled. Using the social and post social models of disability and recent interviews with dwarfs I seek to demonstrate how an unaccommodating built environment and attitudinal barriers disable people who have dwarfism.

Erin Pritchard

Poetry

Allan Sutherland is one of the longest standing figures in disability arts. His live performances are legendary. They describe his own experiences of living with epilepsy in such poems as ‘Leaning on A Lamppost’ – a darkly humorous account of being a victim of hate crime while having a fit - and ‘What Happens to Old Epileptics’, which articulates fears about ageing and death for a disabled person. They combine them with such rousing calls to action as ‘Bite The Hand that Feeds You’. This performance marries these old favourites with remarkable new material from Allan’s recent Leverhulme-funded residency at the Centre for Citizen Participation, Brunel University. These are transcription poems based on oral history interviews with disabled people. They reflect the experience of a range of people including a mental

health service user, someone with stroke-related aphasia, a woman with learning disabilities and a hearing-aid user.

Allan Sutherland

SEN Identities

This paper investigates the role of habitus in students’ negotiations of ‘special needs’ identities within an ‘inclusive’ secondary school. Focussing on their lived experiences of relationships with peers and teachers, we examine the ‘conditions of possibility’ for hearing the voice of children attributed with ‘SEN’. Using a vignette-based method of fictional scenarios allowed the students to consider disabling processes and relationships within the doxa of school culture and wider social expectations. The data discussed suggests that disabled young people continue to face considerable degrees of exclusion. Despite the overarching principles of inclusion guiding the management of this school, the students’ experiences speak of oppressive environments and processes founded upon rigid and exclusionary ideas of academic competency and capabilities. Examining gaps between their performances of identity and opinions on inclusion, questions about their perceptions of their future roles in education and society will be raised

Alison Wilde and Vanita Sunderman

Speaker Information.

Lord Addington is the Liberal Democrat Deputy Chief Whip in the House of Lords. He entered the Lords at the age of 22 as the youngest serving peer. Dominic took the position of sports spokesman in 1993, and has also been disability spokesman. Having dyslexia has encouraged him to lend his support to the British Dyslexia Association.

Peter Alldridge is Professor of law and Head of the Dept of Law of, Queen Mary, University of London. Author of “Locating Disability Law” (2006) Current Legal Problems 59 (1): 289-318 and Prosecuting Disability Hate Crime in Healy et al Equality, Inequalities and Diversity : Palgrave Macmillan (Palgrave 2010) 107-126.

Erik Baurdoux is a lecturer at LSE. Through his own experience of mental illness he got involved with the Time to Change campaign. One of its main aims is to challenge stigma, misrepresentation and mental health discrimination. The theme of the current campaign is "Time to Talk" since talking about mental health is one of the best ways to tackle prejudice.

Kelsey Beninger studies at LSE and is one of the conference organisers and convener of the LSE Disability Equality Research Network.

Laurant Cadet de Fontenay was born blind in Mauritius, a country which had very few facilities to cater for his educational needs at the time. His extremely supportive parents, who relocated to South Africa for him to start schooling at a well-equipped special school. At age 15, he became the only blind student to attend a large mainstream school near home. As one of very few blind Psychologists to have trained and practised in South Africa, Laurant has had ample opportunity to reflect on how his disability interacts with his multi-cultural and professional identity. In 2007 he moved to the UK and began working as a workplace disability consultant, performing assessments for the Access to Work scheme. Laurent feels that moving from a mainstream role to what he says may be termed as a “crip job” in disability circles has prompted further personal reflection about self humanity and professional aspirations of people across a range of disability and professional contexts.

Colin Cameron works as an academic at The University of Northumbria. He was rrecently awarded PhD by Queen Margaret University. His thesis was entitled 'Does Anybody Like Being Disabled? A Critical Exploration of Impairment, Identity, Media and Everyday Life in a Disabling Society'. Colin is currently developing a research funding bid to construct an oral history of the Disability Arts Movement.

Vikki Chinn works in The Careers Service at LSE.

Laurence Clark is an academic, writer and comedian. He runs ‘Difference Matters’ consultancy and writes regularly for BBC Ouch.

Ross Cooper is Assistant Director of LLU+ at London Southbank University. He describes himself as a dyslexic academic who has 4 dyslexic children, three of whom are dyspraxic, one of whom is dyscalculic, a brother and grandfather with Asperger’s and a mother and sister with AD(H)D (who also learned to read before she went to school). Ross feels that a conference about disability and identity is an opportunity both to challenge the deficit identities foistered upon us, and discuss and develop our own identity politics.

Andy Farrell is a senior manager at LSE and a great advocate for disability equality and supporter of the conference.

Mat Fraser is an actor writer, comedian and presenter. He hosts the BBC Ouch podcast and is President of The National Association of Disability Practitioners (NADP).

Emily Freeman is a PhD student at LSE.

Nathan Gyebi-Ababio is a student at LSE

John Horan had a stroke on the day before the millennium – it changed his life and made him a better discrimination lawyer.  His successes have lead to him being interviewed by BBC's Ouch , The Guardian and The Times. He champions the rights of the disability community and was awarded Bar Council “Pro Bono Lawyer for the Year” in 2003.""John's approach to disability discrimination is absolutely inspirational.  His expertise is second to none and together with his experience, he is a formidable force in the fight to eradicate discrimination based on disability." Les Willans (represented by John in a goods and services discrimination case.

Arminie Ishkanian is an academic at LSE. Her 13 year old son was recently (October 2010) diagnosed as having Asperger’s Syndrome. Arminie’s interest in this conference is two fold, as a mother who is trying to come to terms with her son’s diagnosis and all which that implies, and as an engaged and committed academic who has conducted research on issues of development, human rights, civil society and social exclusion.

Jenna Marangoni is a student at LSE. She has schizophrenia and is appalled by the prejudice people with her condition face and the barriers to living a 'normal' life.

Pierre Marsh is a fire-fighter, and therefore has been seen as  a hero. He is a national altar fit champion, and therefore seen as the physical elite, and he is from a mixed race background. With a Masters degree, and  undergraduate degree, he is placed amongst the academic. However, Pierre feels that it is his dyslexia which defines him above all. Pierre feel that it's time to contribute to a body politic of the different, galvanised through the

sense of self. Identity is the key to acceptability,  and he suggests that a conference on identity relating to disability is key to everyone.

Nicola Martin is Head of Disability and Well-being Service at LSE and an Honorary Visiting Fellow at Cambridge working with Professor Simon Baron-Cohen on a project about autism and identity. She is the originator of the LSE Disability Equality Research Network (DERN), Chair of The National Association of Disability Practitioners (NADP) and Editor of The Journal of Inclusive Practice in Further and Higher Education.

Stuart Newton is Deputy Head of Sixth Form at Anglo European School and Teacher of Economics and Politics. He was a City Money Broker. Since becoming physically disabled at the age of 26, which forced not only a complete change in occupation but also mindset Stuart has become intrigued by individuals views of him as a disabled man, both those that have known him all his life and those that have only just met him. He is interested in how society and particular institutions both in the public and private sector perceive disability with regard to employment. Stuart will discuss and challenging these perceptions related to identity.a teacher.

Erin Pritchard is doing a PhD in Human Geography at Newcastle University. Her work focuses on how dwarfs are marginalized both spatially and socially by an unaccommodating built environment. She is interested in the impact of stereotyping.

David Ruebain is Chief Executive of The Equality Challenge Unit. He has been involved in equality and disability, as an activist, lawyer and professionally for over 30 years.

Alice Sinclair is an LSE student and one of the conference organisers.

Vanita Sundaram has been a Lecturer in Education at the University of York since 2007. Previously, she was a Socrates-funded Research Fellow in the Department of Educational Studies, University of York, and prior to that conducted post-doctoral research at the National Institute of Public Health, Denmark. She has published on a range of issues related to equity, equality and inclusion, including the effects of physical and sexual violence on educational participation and success, and physical and mental health. She has attracted funding for research on gender-based violence, violence in schools and inclusive education from national and international funders, including the Nordic Research Academy, the Danish Ministry for Gender Equality, and the Society for Educational Studies. Vanita has carried out international research for European programmes and UN organisations. This work has played an important role in evaluating policy and practice in wide-ranging fields, including violence screening in health care and education in emergencies. Increasingly her work examines equity in access to, participation in and outcomes of education, particularly among disadvantaged and marginalised populations. This includes the evaluation of risk factors

for/consequences of exclusion from education, and links with wider community contexts and practices.

Allan Sutherland, once described as 'the first political stand-up on the disability arts circuit'. has for thirty years been exploring ways of making heard the voices of disabled people, including stand-up comedy, performance poetry, radio and television scriptwriting and journalism. His book ‘Disabled We Stand’ (1981) helped many people to identify as disabled. His current work explores transcription poetry, creating sets of poems from oral history interviews with disabled people. He has recently been writer in residence at the Centre for Citizen Participation, Brunel University. (This work can be read on Disability Arts Online.) A former film critic for Sight and Sound, Time Out and Disability Now, he has a long-standing interest in representation of disabled people, and, with film-maker Steven Dwoskin, organised the UK’s first season of films about disability, ‘Carry On Cripple’ at the National Film Theatre in 1981.

Sadie Wearing is an academic at LSE.

Alison Wilde is currently teaching and researching at the University of York. She has previously researched and taught on cultural representation, media, disability, education and identity for over 10years and is co-founder of the MeCCSA Disability Studies Network. Her primary interest is in the depiction and reception of disability and gender in a range of popular film and television genres includingportrayals of disabled people in reality television, comedy, TV drama and film. She has published in several peer reviewed journals and books on soap opera, audience, education, gender, disability and celebrity.

Nothing To Do With Me: Everything To Do With Me Disability, Self and IdentityColin CameronAbstract

Drawing on categories of imposed and intrinsic relevances developed by Alfred Schutz, as well as on affirmative model definitions of impairment and disability, this article develops an argument proposing the usefulness of disability identity. Disability is not just about what people with impairments are prevented from doing and being, but about what they are required to do and be instead. Whether this involves taking on roles as passive recipients of others’ benevolence or involvement in demonstrations of the unimportance of impairment, either way negates the lived experience of impairment and signifies the desirability of normality. It is suggested that embracing rather than attempting to disassociate the impaired self from disability identity – recognising disability as oppression and absurdity and resolving to face this - enables this self to claim impairment as valid and ordinary human experience and to resist the invalidating requirements of the disabled role.

IntroductionPeople have expected me to take the nicely paved path laid out for the disabled. They expected me not to try, not to accomplish, and not to succeed. That map was tossed out long ago. I have followed my own path as a person, a woman, who happens to have a physical disability (Hyatt, 2008:unpaged).

In this article I characterise disability identity as a choice, a narrative, a series of decisions to be made about how we respond, as people with impairments, to situations in which, within the midst of life, we find ourselves. Drawing on Alfred Schutz’ ideas of imposed and intrinsic relevances, I will argue that taking on a disabled identity necessitates involving ourselves in acts of transgression and in making assertions about both the right to be different and the ordinariness of difference. It involves making and constructing affirming decisions and meanings about the embodied experience of impairment and a rejection of contemporary pressures to define the self primarily in terms of one’s own individuality.Drawing also on affirmative model definitions – identifying impairment as physical, sensory, emotional and cognitive difference to be expected and respected on its own terms, and disability as an invalidating role encountered by and imposed upon people with impairments in their dealings with everyday life (Cameron, 2010) - I shall identify disability as a productive as well as a restrictive relationship. While the social model offers an analysis of disability as an oppressive social relationship and allows discussion of disability in terms of what people with impairments are prevented from doing and being as a result of physical and social barriers (Oliver, 2009), the affirmative model allows us to consider disability in terms of what people with impairments are required to do and be instead. It provides a framework within which to assert rather than to seek to deflect attention from impairment, to regard impairment

as part of ordinary human experience rather than in negative terms as ‘lack’ or ‘defect’ (UPIAS, 1976); to acknowledge that while impairment may indeed sometimes involve pain and discomfort, this by no means defines the whole subjectivity of people with impairments but should neither be downplayed or regarded as something to be overlooked. I suggest that taking on disability identity involves a rejection of the thinking expressed typically in Glenda Hyatt’s words above. Claims for recognition in terms of personhood and individuality, as people ‘who happen to have a physical disability’, involve a response to the experience of impairment in a disabling society that is just as predictable, stereotyped and conformist as the passive lifestyle usually rejected. Hyatt’s is a position which involves an attempt to live with a sense of one’s own difference as undesirable misfortune, but hopes to compensate well enough so that others will tolerate or ignore impairment. It is a position which takes pleasure when people say “I never think of you as disabled, I just see you as you,” and gives assent to a dominant cultural view which measures impairment against non-impairment and categorises impairment as ‘useless difference’ (Michalko, 2002:97). It articulates what Rod Michalko has described as ‘person-first’ ideology (Michalko, 2002:10). Within person-first ideology impairment is downplayed and regarded as distinct from primary experience as a person, as a secondary feature of identity.Is there anything to be gained by identifying as disabled? Answering this question involves addressing the conflicting meanings that people have in mind and the conflicting models they hold when they use the term disability. Anselm Strauss notes that:

the point is not whether or not (an individual) can be wholly indifferent to his name but that an extensive range of reaction can be evoked by his imaginings of what he must look like to certain audiences if he bears the name that he does (2008:18).

Outlining what he means by the term interpellation, Louis Althusser likens this process to being hailed “You there!” in the street by a policeman:

The hailed individual will turn round. By this mere 180 degree physical conversion, he becomes a subject. Why? Because he has recognised that the hail was ‘really’ addressed to him (Althusser, 2008:48).

It is through ideology that individuals acquire and articulate their sense of selves as social beings: who they are, what they represent and how they act. Ideology interpellates individuals into particular forms of subjectivity which they assume or internalise as ‘natural’. Through countless everyday practices interpellation involves the naming of individuals so that they are consistently and subtly recruited as subjects. Being interpellated as disabled constructs the impaired subject as the disabled subject and bears distinct kinds of expectations around roles and horizons. When somebody who is impaired hears the word ‘disabled’ she recognises herself and the subject she is expected to be. Even when the term is rejected it is a name that she knows, by and large, will have been applied to her in medical model terms as a description betokening inferiority.Alfred Schutz uses the term imposed relevances to describe

situations and events which are not connected with interests chosen by us, which do not originate in acts of our discretion, and which we have to take just as they are (Schutz, 1970:114).

Imposed relevances such as barriers preventing equal participation within community life, inadequate and badly designed housing, lack of access to public transport, substandard education, few employment opportunities, lack of information, lack of control over personal decision-making processes, inaccessible leisure facilities, experiences of oppressive care and unwelcome intrusion, of being objectified as objects of pity, compassion, curiosity or hatred, being made the subject of stereotyping judgements and condescending assumptions, are part and parcel of the experience of being disabled. This is the case for people with impairments whether they accept or reject disability as a basis for constructing identity. Schutz suggests that

we have no power to modify them by our spontaneous activities except by transforming the relevances thus imposed into intrinsic relevances (Schutz, 1970:114).

Intrinsic relevances he describes asthe outcome of our chosen interests, established by our spontaneous decision to solve a problem by our own thinking, to attain a goal by our own action, to bring forth a projected state of affairs (Schutz, 1970:114).

I contend that there is much to be gained by identifying as disabled if this involves transforming imposed relevances into intrinsic relevances in order that these can be addressed. Involved here is a process Paulo Friere has described in terms of agents singling out elements from their ‘background awareness’ and reflecting upon these, making them objects of consideration and objects of action and cognition (Friere, 1974:56). This requires an altered subjectivity and a naming of disability as oppression, and is part of a process that Simi Linton has called ‘claiming disability’ (Linton, 1998). It requires a conscious acknowledgement of the processes by which people with impairments are interpellated as disabled and a conscious decision to adopt a subversive stance towards these. Disability PoliticsFor so long as disability is rejected as a foundation on which to build identity people with impairments are unable to resist oppression. Oppression is unrecognised as such but is rather treated as a natural part of experience, being the ordinary outcome of impairment. Imposed relevances remain ‘unclarified and incomprehensible’ (Schutz, 1970:114). Each disabled person continues to internalise ideological conventions and requirements and then unconsciously uses these as standards against which to measure and modify both identity and physicality (Cameron, 2008). It is not considered part of the role of disabled people to criticise society from a minority perspective. Disabled people are not regarded as a minority with its own distinctive way of life and traditions like women or ethnic groups, who it is acknowledged perhaps do have reasonable grounds for viewing society from a different perspective, but are viewed by the non-disabled majority as being:

just like us – but less: ‘disabled’... unable; defective... ‘failed normals’... merely that. A disabled person (is) nobody but our uncle who had the bad luck to be injured on the assembly line, our sister (with) multiple sclerosis (Johnson, 2003:124).

Pressures to discourage people with impairments from identifying collectively are embedded within everyday life practices. Those who complain about

injustice are labelled as complainers... who cannot deal with the problems related to their disabilities (Murphy, 2005:161) and are identified and treated as bitter people who have just not come to terms with their limitations. Nevertheless, the past four decades have witnessed the emergence of a new social movement of disabled people who have organised around the social model and campaigned across a diverse range of areas: through the establishment of centres for inclusive living and for the right to direct payments to meet support needs; for anti-discriminatory legislation; through the establishment of coalitions which have raised consciousness around the planning and delivery of public services; through the development of representative national and international lobbying bodies; through the growth of Disability Arts as a cultural practice reflecting the experience of living with impairment in a disabling society; through the establishment of Disability Studies as an academic discipline addressing issues concerning not just the meaning of disability but the nature of society (Campbell and Oliver, 1996; Swain, French and Cameron, 2003; Cameron, 2009). While it is perhaps true that, for a number of reasons, the disabled people’s movement has been less vocal in recent years than earlier (Oliver and Barnes, 2006), there are clear signs of a resurgence of the anger and collective mobilization of disabled people working together in order to challenge benefit cuts imposed by government and to assert their rights to autonomy (TFN, 2011; ILiS, 2011). To say, with conviction rooted in a social model understanding, I am a disabled person – as opposed to I am a person who happens to have a disability - is not to say I have an impairment but is to make a statement about the situation of people with impairments in a disabling society. Furthermore, to say I am disabled collectively with other disabled people as an expression of anger turns this into a statement of pride:

By modifying the frame from one of innate deviance to one of oppression, individuals may come to feel angry not only because the system is unjust but because they have been made to feel ashamed... The activated feeling of anger propels stigmatized individuals into public space to behave collectively, and feelings of pride emerge (Britt and Heise, 2000:257).

Transforming imposed relevances into intrinsic relevances in this context involves a realistic appraisal of one’s material situation. It involves bringing the surroundings within which one experiences life to the forefront of consciousness and critically holding them up for interrogation. This is, however, not always an easy process for, as Henri Lefebvre observes:

in good faith, the individual – be he bourgeois or proletarian – can deny his experience of social classes since objective social reality functions beyond his own ‘subjectivity’, beyond his own private consciousness (Lefebvre, 2008:165).

It is the easiest thing in the world for the impaired individual to deny his experience of disability as a social relationship for the same reason. Paulo Friere comments that

As long as the oppressed remain unaware of the causes of their condition, they fatalistically ‘accept’ their exploitation. Further, they are apt to react in a passive and alienated manner when confronted with the necessity to struggle for their freedom and self-affirmation (Friere, 1974:40).

Simon Stevens distinguishes between ‘real’ disabled people and politically active disabled people involved in ‘the movement’:

I would argue from experience that many disabled people do not understand the social model or become involved in the politics of disability because they are too busy getting on with their lives (Stevens, 2008:10).

It is, however, at the everyday level – at which people busily get on with their lives – that oppression is experienced. The misrecognition of oppression does not mean that oppression does not exist. Iris Young argues that:

The conscious actions of many individuals daily contribute to maintaining and reproducing oppression, but these people are usually simply doing their jobs or living their lives and do not understand themselves as agents of oppression (Young, 1990:42).

In its nature as structural oppression disability operates subtly through the everyday practices of and interactions with disability industry professionals, family members, media producers, strangers (well-meaning or not), and is therefore difficult to recognise. The cultural imperialism of the non-disabled permeates disabled people’s lived experience so thoroughly that the possibility of its contestation either goes unnoticed or is explicitly denied. While the disabled people’s movement has been an important force in the lives of many – transforming lives of self-loathing into lives of assertive resistance – there are many more whose lives remain characterised by the experience of oppression and dependence. Internalised oppression is a term that has been used by writers in Disability Studies to describe something which happens:

when individuals in a marginalised group in society internalise the prejudices held by the dominant group... This form of oppression is most effective when acting at the subconscious level, affecting the self-esteem of the individual in addition to shaping their thoughts and actions (Reeve, 2004:87).

While disability is characterised by the social model as ‘something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society’ (UPIAS, 1976:14), there is involved an implication that disability is always something done to people with impairments. There is also implied a passive reception, as if people with impairments will inevitably be disabled. Drawing upon Reeve’s definition of internalised oppression, I want to argue that disability can also be thought of as something that people with impairments act out or perform. Disability is a form of oppression which acts at the subconscious level, shaping the thoughts and actions of the individual with impairments. However, it is certainly not the case that all people with impairments are disabled or that all people with impairments who are disabled are disabled all the time. I suggest there is a need to recognise the possibility for agency.Disability as PerformanceI draw here upon Judith Butler’s arguments identifying gender as performative:

There is no gender identity behind the expressions of gender; that identity is performatively constituted by the very ‘expressions’ that are said to be its results (Butler, 1990:25).

I would argue that we can similarly understand disability as performatively constituted. If, like gender, disability is performatively produced and compelled by regulatory practices then it can only be seen in its effects. There is an important distinction between stating that disability is compelled by regulatory practices and that disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. The former statement suggests active intent; the latter only necessarily suggests omission to include. Disability is about more than just about what people with impairments cannot do and be, it is about what people with impairments are required to do and be.Borrowing a term from Simon Charlesworth, I want to suggest that disability is an oppressive relationship that is encountered (Charlesworth, 2000:90). Encounter with disability involves being situated within

definite contexts of meanings carried in the ineffable details of the comportment we acquire from those around us, through which the world becomes meaningful as a subjective space (Charlesworth, 2000:90).

The ‘ineffable details of the comportment we acquire from those around us’ Charlesworth speaks of include the actions, gestures, and attempts made by people with impairments to prove just how ‘normal’ they are. Disability involves people with impairments being taught to want to act, and wanting to act, and attempting to act in ways which conform to the social expectations of people who do not have impairments; regarded in terms of normative and taken-for-granted orders (Titchkosky, 2003) as requirements of eligibility to participate in the social mainstream. It also involves a requirement of people with impairments to disavow ways of doing things which might suit their personal needs and a sense of shame and inadequacy when such ways of doing things are necessary or unavoidable, in private as well as in public. For a person with an impairment to perform a life function or task in her own way, to get from one place to another in his own way, to communicate with a friend in their own way, to access information, to make herself understood, none of these makes a person disabled. Disability appears only when such things are measured against socially valued ways of achieving the same ends. Disability appears when, in order to gain approval, doing things in ways that work is discouraged by others or eschewed by self in favour of attempting to do these things in ways that suit other people.Carol Thomas argues that as well as the social barriers recognised by social modellists as externally imposed restrictions of activity

there are also social barriers which erect ‘restrictions’ within ourselves, and thus place limits on our psycho-emotional well-being: for example, feeling ‘hurt’ by the reactions and behaviours of those around us, being made to feel worthless, of lesser value, unattractive, hopeless, stressed or insecure (Thomas, 1999:47).

In order to address the omission of personhood or agency that she identifies as lost in the materialist social model, Thomas offers a reworked social relational definition of disability:

Disability is a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engineered undermining of their psycho-emotional well-being (Thomas, 1999:60).

What I find compelling in Thomas’ definition is her re-incorporation of disability as part of embodied experience. This is a position which allows us to speak of disability as being something from without which, in a sense, comes to possess individuals: in so far as names and identities are socially given and privately owned or resisted, this sense of being disabled is one that is felt and lived out in everyday practice. People with impairments are not just socially oppressed by physical and social barriers but respond to these as emotional human beings. I want to move beyond Thomas’ position to suggest that disability is a personal and social role imposed on people with impairments. Understanding disability in this way we can think of it as something acted out in the social contexts in which people with impairments find themselves located. It is a part people with impairments are expected to play which is fixed by the roles and identities of those around them situated as non-disabled people, whether closely connected to them, for instance family members or disability industry professionals; or others whose influence is more distant and impersonal, such as media producers or celebrities.As Sheldon Stryker notes, roles underlie the stability of social structure (Stryker, 2002:76). The role of disability, materialised in and lived through the embodied experience of people with impairments, has a functional purpose in stabilising and maintaining existing patterns and relationships of social interaction within contemporary society. I propose that disability is a role that validates the subject position of being normal or non-disabled by invalidating the lived experience of impairment in terms which mean that this can only be experienced as personal tragedy. Such a role becomes difficult to escape other than in terms which explicitly address disability as a role because any other form of response involves compliance with that role. Narratives of overcoming and rising above impairment (I am a person who happens to have a disability) validate the ideal of normality as effectively as those of passive dependence. Distancing the self from the idea of disability or from disability identity involves affirming the supposition that to be socially located as disabled is undesirable. The personal disavowal of status as disabled is an intrinsic part of the disabled role. As Sarah, a participant in my PhD research at Queen Margaret University, put it:

I don’t think I have accepted that I am a disabled person to be honest… saying

that’s a bit weird, but to be honest, I don’t think I have… because I still get pissed

off… and it’s not like I don’t accept it like I hate it, it’s just that… I’m never going

to be comfortable with it, I’m never going to be… erm… sort of, what people

expect…I suppose that’s why I’ve done so many things like… that people go ‘wow!’

…cos people just don’t assume… and I certainly know that’s the reason I did the

sky-dive, it was just cos, like, I wanted to do something totally random and, like,

just… something completely… I’d always wanted to do it, but it was, like, people

said “Oh, I don’t know if she should do it” …so I thought fuck it, I’m going to do

it...

The imposition of the idea of impairment and disability as personal deficiency is resisted by those who do not consider themselves personally deficient, but unless this resistance acknowledges the structural relations which are served by this idea, it is empty protest. To say “I don’t see myself as disabled” does not mean either that one does not experience physical barriers or escapes being patronised and condescended to. However, it does involve a distancing of self from disability as an identity, which confirms the idea that to be disabled is not something one would want. If we accept this understanding of disability as role we can begin to think of disability as part of the embodied experience of people with impairments, materialised not only in their exclusion from ordinary community life but in terms also of what they are expected to do with their lives instead: not just in terms of being passive (as recipients of charity) but also in attempting to demonstrate that they are not passive (by doing sky-dives).As Sheldon Stryker notes, the language of roles cannot be used without at least implicit reference to counter-roles (Stryker, 2002:58). From a culturally dominant perspective, the counter role to being disabled is understood as that of being able-bodied. Able-bodiedness and being non-disabled can be understood as descriptions of the same subject position but viewed from within different discourses. While a hegemonic discourse equates able-bodiedness with normality, Simi Linton notes that within the disabled people’s movement the term ‘non-disabled’ is used to describe the position of those who do not experience disability as oppression, a strategic use of language which centres disability in order to look at the world ‘from the inside out’ (Linton, 1998:13):

centring the disabled position and labelling its opposite non-disabled focuses attention on both the structure of knowledge and the structure of society (Linton, 1998:14).

The invalidation of impairment serves to bolster the able-bodied role, to reinforce the naturalness and desirability of this position. The disabled role involves validation of the subject position of being non-disabled because it involves acting out impairment, conceived as inadequacy and incompetence, striving to be something it is not: able-bodied. It is a role which confirms the position of able-bodiedness as neutral, normal and natural.

If the social structure is shaped by interaction, it is social structure that shapes the possibilities for interaction and so, ultimately, the person. Conversely, if the social person creatively alters patterns of interaction, those altered patterns can ultimately change social structure (Stryker, 2002:66).

I suggest that in order to begin to change social structures as these exist to shape the experience of impairment there is a need to awaken from what Pierre Bourdieu has described as ‘the somatisation of social relations of domination’ (Bourdieu and Wacquant, 2007:24):

People are ‘pre-occupied’ by certain future outcomes inscribed in the present they encounter only to the extent that their habitus sensitises and mobilises them to perceive and pursue them (Bourdieu and Wacquant, 2007:26).

While habitus is creative and inventive, this is within the limits of its structures which are ‘the embodied sedimentation of the structures which produced it’ (Bourdieu and Wacquant, 2007:19). Once it has become possible to step back and recognise those structures as structures, it becomes similarly possible to try and act upon these structures.

If we grant that symbolic systems are social products that contribute to making the world, that they do not simply mirror social relations but help constitute them, then one can, within limits, transform the world by transforming its representation (Bourdieu and Wacquant, 2008:14).

This is what has been achieved through the social model of disability, a transformed representation of the world which has made it possible to regard disability as an oppressive relationship, or as a structure of domination, rather than as individual limitation. The adoption of this model by the disabled people’s movement as an organising principle has enabled a start to be made in transforming the world in terms of opportunities for the participation of people with impairments in ordinary life.I suggest that the affirmative model can similarly be used as an analytical tool for transformed representation of the world in terms of describing the function that disability as role has to play in sustaining established social relations. The affirmative model definition of disability takes into account descriptions by people with impairments of their experiences of being actively turned into disabled people (Cameron, 2010). It recognises the ways in which disability does not just exclude, but places a requirement on people with impairments to behave, think and speak in ways which acknowledge the superiority of normality and acquiesce in their own oppression. Disability is a role imposed on people with impairments to strengthen dominant social relations which require conformity. If the disabled role convinces people with impairments that the only way of achieving valued future outcomes is through overcoming or deflecting focus away from their limitations as individuals, then however successfully this is achieved on personal terms, disabling social structures will remain unaltered. People who have overcome profound impairment effects may be held up as role models or inspirations (we consider here forthcoming media focus on the 2012 Paralympics [Gilbert and Schantz, 2008]) but leave disabling social structures untouched. ConclusionTaking on a disability identity is not a once-and-for-all event or a ‘happy ever after’ story. As Ken Plummer points out:

Everywhere we go, we are charged with telling stories and making meaning – giving sense to ourselves and the world around us. And the meanings we evoke and the worlds we craft mesh and flow, but remain emergent: never fixed, always indeterminate, ceaselessly contested (Plummer, 1997:20).

Identifying as disabled is not a decision that suddenly somehow means everything is all right, but involves a new understanding of the relationship between the impaired self and the physical and social contexts in which the

impaired self is located. It makes possible different stories, which identify as the site for struggle the environment in which the impaired self lives rather than the physicality of the impaired self, but it does not imply there is no longer a need for struggle. We can either say that disability has nothing to do with me, hoping that if we are successful in maintaining a competent public presentation people around us will recognize and value us for our other personal characteristics, but at the same time leaving disabling barriers and structures unchallenged; or that disability has everything to do with me, acknowledging that our conditions of being, the contexts in which we experience who we are and who we might become, are shaped and structured by the physical world and by the other people around us who make up that world. There is a pressing requirement for us to be able to relate critically to current cultural conventions and media exhortations which encourage us to prize our individuality above all else. We must resist what we have learned to be, and acknowledge our constitution as thoroughly social creatures. While contemporary culture encourages each marginalized person to shoulder herself the weight of unequal structural relationships, and to treat these as though they reveal something deficient about her, there is a need for each to relate differently to the structures that oppress.I want to finish by drawing upon a number of personal recollections which I hope will illuminate my argument. Having been knocked down by a car doing 40 mph at the age of nine in 1974, and having been fairly badly smashed up on a long-term basis as a result, I spent until around my mid-20s resisting identification as disabled. I spoke slowly and walked with a limp and had a shaky right hand, but in my own eyes I had just been knocked down by a car. I was not disabled. During my teens I got picked on (and in turn I started picking on another boy). I fell behind with school work and became a disruptive trouble-maker. I got sexually assaulted by a man on a train. I recall a girl friend’s mother telling her daughter she shouldn’t go out with me because I was ‘half-baked’. I became angry with myself and those around me, but rationalised such experiences as the probably inevitable, if unpleasant, outcome of being situated as I was. When, after leaving school, my father used to advise me “I think you should consider becoming registered as disabled,” I would react negatively. Disabled people were those people on Blue Peter. I had nothing to do with them and they had nothing to do with me (Swain and Cameron, 1999). The day Geoff Armstrong of the National Disability Arts Forum outlined the social model of disability to me I underwent something like a religious conversion. It became clear that, contrary to the discourse of special needs, impairment is quite ordinary really. It is how society responds to impairment that is the disabling issue. Once this had been explained I was able to relate differently to the things I had experienced. I was now able to put into words a different explanation of what had been the matter. I embraced my disabled identity: it gave me strength and an understanding of where to focus my energies in order to bring about change: not just for me personally, but for other people with impairments with whom I now identified. As Allan Sutherland has stated:

We break through the idea, presented to us by the medical profession and disability charities in particular, that our situations are different and

unrelated, and come together not as the blind or the deaf or the epileptic, or the spastic or the arthritic, but as disabled people (Sutherland, 2005).

At the age of 29 in 1994, while employed as development worker for the Northern Disability Arts Forum in Newcastle upon Tyne, an official from the Sports and Arts Foundation whom I had just escorted to the site of his next meeting (I was heading that way anyway), pressed a £1coin into my hand and earnestly told me “Buy some chocolate, son.” I was slightly taken aback and puzzled as to why he should consider this an appropriate thing to do and say, but concluded that presumably he assumed I had learning difficulties (even if I had had learning difficulties this gesture would have been inappropriate, but that is another matter). I resisted the temptation to tell him to get stuffed, politely gave him back his £1, and walked off, inwardly laughing at him. Having taken on a disabled identity I was able to transform this imposed relevance – this imposition of disability – into an intrinsic relevance and to recognise the problem in this situation as being his not mine. Had I still been distancing myself from disability identity, faced with such an encounter I would undoubtedly have been infuriated and have carried this around with me for days, regarding it as offensive but having no framework with which to interpret it other than as just one of those things that happen.In the words of Donald, the partner of one of the participants in my PhD, disabled people often see the world at its stupidest. The social model has enabled us to identify disability as an oppressive social relationship which excludes, and to talk of disability in terms of social justice. The affirmative model enables us to identify disability as an oppressive role, and to talk of disability as an absurd requirement. The Sports and Arts Foundation official was simultaneously affirming his own identity as normal as he attempted to define me as a charity case. In this he was attempting to impose meaning on the situation that confirmed the dominant medical model discourse, and required my acquiescence. Affirming my own identity as an impaired man, through the actions of giving him back his £1 and walking away inwardly laughing, involved me in transgressing and subverting this discourse. To me it doesn’t matter what he thought as I walked away. He may well have scratched his head and thought to himself “Poor chap.” If, however, as the existentialist philosophers tell us, we become who we are through what we do and what we claim, as well as through what we repudiate and reject (Blackham, 1991), it is what I did in this situation that matters for me. We are ultimately only responsible for our own actions and for who we become. The world may be full of non-disabled twits, but that is something they have to deal with.ReferencesAlthusser, L. (2008) On Ideology. London: VersoBlackham, H.J. (1991) Six Existentialist Thinkers. London: RoutledgeBourdieu, P. and Wacquant, L.J.D. (2007) An Invitation to Reflexive Sociology. Cambridge: PolityBritt, L. and Heise, D. (2000) ‘From Shame to Pride in Identity Politics’. Stryker, S., Owens, T.J. and White, R.W. (Eds.) Self, Identity and Social Movements. Minneapolis, MN: University of Minnesota PressButler, J. (1990) Gender Trouble: Feminism and the Subversion of Identity. London: Routledge

Cameron, C. (2008) ‘Further towards an affirmation model’. In Campbell, T. Fontes, F. Hemingway, L. Soorenian, A. and Till, C. (Eds.) Disability Studies: Emerging Insights and Perspectives. Leeds: The Disability PressCameron, C. (2009) ‘Tragic but brave or just crips with chips? Songs and their lyrics in the Disability Arts Movement in Britain’. Popular Music. Vol. 28/3. Pp. 381-396Cameron, C. (2010) Does Anybody Like Being Disabled? A Critical Exploration of Impairment, Identity, Media and Everyday Life in a Disabling Society. PhD thesis. [Online] http://etheses.qmu.ac.uk/258/1/258.pdf Accessed 18.03.11Campbell, J. and Oliver, M. (1996) Disability Politics: understanding our past, changing our future. London: RoutledgeCharlesworth, S.J. (2000) A phenomenology of working class experience. Cambridge: Cambridge University Press Friere, P. (1974) Pedagogy of the Oppressed. London: PenguinGilbert, K. and Schantz, O. (2008) The Paralympic Games: Empowerment or Sideshow? Maidenhead: Meyer and MeyerHyatt, G.W. (2008) Resuming my Misbehaving Woman Role. [Online] http://www.doitmyselfblog.com/2008/resuming-my-misbehaving-woman-role/ Accessed 15.06.09Independent Living in Scotland (2011) First ever festival for the Independent Living Movement in Scotland [Online] http://www.ilis.co.uk/about-the-ilis-project/events/#Come_to_the_Festival_ Accessed 18.09.11Johnson, M. (2003) Make Them Go Away: Clint Eastwood, Christopher Reeve and the case against disability rights. Advocado Press. Louisville, KY Lefebvre, H. (2008) Critique of Everyday Life: Vol. 1. London: VersoLinton, S. (1998) Claiming Disability: Knowledge and Identity. New York, NY: New York University PressMichalko, R. (2002) The difference that disability makes. Philadelphia, PA: Temple University PressMurphy, J.W. (2005) ‘Social Norms and their implications for disability’ in Murphy, J.W. and Pardeck, J.T. (Eds.) Disability Issues for Social Workers and Human Service Professionals in the 21st Century. New York, NY: HaworthOliver, M. (2009) Understanding Disability: From Theory to Practice. London: Palgrave-MacmillanPlummer, K. (1997) Telling Sexual Stories: Power, Change and Social Worlds. London: RoutledgeReeve, D. (2004) ‘Psycho-Emotional Dimensions of Disability and the Social Model’. In Barnes, C. and Mercer, G. (eds.) Implementing the Social Model of Disability: Theory and Research. Leeds: The Disability PressSchutz, A. (1970) On Phenomenology and Social Relations. Chicago, IL: University of Chicago PressStevens, S. (2008) ‘Movement Doesn’t Move Me’. Community Care. 13.11.08Strauss, A. (2008) Mirrors and Masks: the Search for Identity New Brunswick, NJ: TransactionStryker, S. (2002) Symbolic Interactionism: a Social Structural Version. Caldwell, NJ: Blackburn Press

Sutherland, A. (2005) What is Disability Arts? [Online] http://www.disabilityartsonline.org.uk/what-is-disarts. Accessed 18.03.11 Swain, J. and Cameron, C. (1999) ‘Unless Otherwise Stated: discourses of labelling and identity in coming out’. In Corker, M. and French, S. (Eds.) Disability Discourse. Buckingham: Open University PressSwain, J. French, S. and Cameron, C. (2003) Controversial Issues in a Disabling Society. Buckingham: Open University PressThird Force News (2011) Disability campaign vows to continue. [Online] http://www.scvo.org.uk/tfn/news/disability-campaign-vows-to-continue/ Accessed 18.03.11Thomas, C. (1999) Female Forms: Experiencing and understanding disability. Buckingham: Open University PressTitchkosky, T. (2003) Disability, Self and Society. Toronto: University of Toronto PressUnion of the Physically Impaired Against Segregation (1976) Fundamental Principles of Disability. London: UPIASYoung, I. M. (1990) Justice and the Politics of Difference. Princeton, NJ: Princeton University Press

Disability Identity-Disability Pride. Nicola Martin.Head of Disability and Well-being Service : LSE.Chair of The National Association of Disability Practitioners.(In Press. February 2011. Please do not copy without permission).

In this paper I will discuss a way of thinking about disability which has emerged out of the UK Disabled People’s Movement over the last three decades in opposition to the preceding Medical Model of Disability which viewed disability as synonymous with problem (Oliver 2009). Disabled people are increasingly challenging the notion that their embodiment is inherently problematic and engaging politically with The Social Model of Disability which locates difficulties experienced by people with impairments within the social arena (Crow 1996, Barnes 2004). The arguments are relevant to practitioners working in higher education who wish to engage in productive equitable relationships with disabled students and colleagues and particularly pertinent in relation to the requirements of The Equality Act (2010) which places duties upon all public bodies. I intend to unpack some of the language associated with impairment and disability, consider some issues which impact on identity and introduce the notion of an ‘Affirmative Model of Disability’(Swain and French 2000, Cameron 2011) which is gaining prominence in the literature and is congruent with the positive ethos of the Equality Act (2010).

Language and identity

In the discussion which follows I am referring to linguistic constructions which have originated within the UK Disabled People’s Movement, and apply elsewhere in the world (but not universally). The history of the development of the Disabled Peoples Movement, with its civil rights agenda is well documented. (Edelman 2001,Oliver 2009 and others). As I am operating in a UK context, the terminology I use reflects British sensibilities. I am however sensitive to the fact that in North America for example the expression ‘People with Disabilities’ does not carry the same meaning as it does here , influenced

as it is by the notion of ‘people first’. It is necessary to be sensitive to the descriptors individuals use about themselves, and to cultural differences, and to understand that not all disabled people actively think about disability politics and therefore see language as a site of struggle.

Those (in Britain in particular) influenced by The Medical Model of Disability, even if they have never heard of the term, use the expression ‘people with disabilities’ unselfconsciously and without necessarily thinking about what lies behind the phrase. Social Modelists, on the other hand, tend to engage politically with the terminology they use and refer carefully to ‘person with x impairment’ and ‘disabled person’. In this instance word order matters. Disability activists and academics have developed the Social and Post Social Models of Disability in opposition to the previously dominant Medical or Individual Model. (Corker and Shakespeare 2002,Barnes 2004, 2008, Barton 2004, Oliver2009 and others). In the allocated word limit of this paper I can only engage with a complex civil rights agenda in fairly simplistic terms but aim to illustrate why language is important. There are many models of disability which are highly relevant to the notions of disability identity and pride but it is not possible to discuss them in any depth here. Terms like charity , religious and tragedy model for example, by their very negativity, resonate with meaning which is antithetic to the concept of a positive identity. (Cameron 2008).

Viewing disability as a deficit within a person which needs fixing immediately positions the individual as ‘other’ in the sense of being ‘wrong’ in comparison with the majority. Medical Model thinking and language perpetuate a notion of fixing which is increasingly contested by disabled people. (Cameron 2008,Goodley 2011). Disability and impairment are not interchangeable terms and are not automatic bedfellows, but are commonly used without precision, much to the annoyance of many politicised disabled people. ‘Disabled person’, on the other hand, suggests that external disabling and discriminatory factors are limiting the life chances of those with impairments. (Corker and Shakespeare 2002,Barnes 2004, 2008, Barton 2004, Oliver2009). The word impairment refers to in- person characteristics such as having cerebral palsy. The Social Model argument for saying ‘disabled person’ is that the impairment (for example deafness) is a given, but the disability ( such as communication problems experienced by a deaf person) is not necessarily a given. Disability occurs as a result of disabling environmental factors (which could be lack of hearing loops ). Cerebral palsy may limit a persons ability to use stairs but it is the stairs themselves which constitute a disabling barrier to access. Impairment does not have to be synonymous with disability but environmental factors can create disability if the person with the impairment is subject to attitudinal and structural barriers which limit full participation.

Stairs obviously constitute a structural barrier but attitudinal barriers can be more subtle. The attitude that nursing is by definition an inappropriate career choice for someone with dyslexia, for example, is a disabling and disablist attitudinal barrier which could well limit life chances if held by someone within university admissions. Prior to a potential student ever thinking about higher

education barriers can be, often unwittingly, created by teachers, parents, careers advisors and others who assume that university is ‘not for the likes of you dear’. (Hoong Sin and Fong 2008, Murphy 2008) These examples illustrate the position that disability, in Social Model terms is a socially constructed condition which is external to and imposed upon individuals who have impairments, i.e. people are disabled by physical and attitudinal barriers. Impairment in itself is not automatically viewed as a negative by everyone who has an impairment (Cameron 2008, 2011). Disabling barriers on the other hand are a negative thing which constitute, at the very least, a constant source of irritation.

Them and Us

The expression ‘person with a disability’ locates the disability by definition within the person and by implication defines disability as a problem, and as a problem belonging to the individual. ‘Haller et al (2006:61) point out that ‘language has always had power to define cultural groups’. Peeters (2000:588) proposes that ‘the dominant groups in society reduce minority culture to a discourse of the other’. The ‘them and us binary’ is central to notion of ’othering’ in which impairment labels are used pejoratively to denote deviance and undesirability and to differentiate between them ‘the impaired’ and us ‘the dominant non impaired majority’ ( discussed by Goodley 2011 with reference to Foucouldian critique. Disabled people are progressively critical of the notion of themselves as ‘other’ in the sense of ‘abnormal’ in comparison with the neurotypical (NT)dominant group. (Silvers 2002, Beardon and Edmonds 2007). ‘Othering’ narratives of autism for example, Stevenson (2008:201) suggests draw a picture of people who are ‘laced with strangeness’: Haller et al. 2006, Barnes, 2008; Richards, 2008 and others worry that ‘othering’ attitudes can precipitate social exclusion. The following quote (from a personal communication between the author and a research participant) illustrate this concern.

‘Having a diagnosis of AS as a child means that, as an adult, you can never interact normally with anyone ever again. It’s because you know that, if they know, they will view everything you do through their knowledge that you have a diagnosis of AS. If they don’t know you worry that they will find out and react differently towards you’

In contrast to the negative feeling enshrined in the preceding quotation, Cameron (2011) discusses the notion of The Affirmative Model of Disability which contests the idea the impairment is by definition a bad thing or even something which is extra ordinary. Mcruer (2003,2006) suggests that the term TAB (Temporarily Able Bodied) accurately defines the status of members of our diverse world who will inevitably become disabled if they live long enough.

The individual and the collective

Impairment categories are not necessarily viewed by Social Modellists as carrying particular significance in relation to the collective experience of oppression of disabled people by the dominant non disabled majority. The

Post Social Model of Disability (Shakespeare 2006) however challenges, or possibly builds upon, the ideology of the Social Model by suggesting that there is a place for sensitivity to individual experience of the interaction between disability, disablism and impairment. A person with a progressive painful life shortening condition living in poverty in the developing world will by definition have more limited opportunities than a disabled person with access to reasonable adjustments which could minimise the impact of their impairment (for example a top of the range electric wheelchair, a good job, flexible working and an accessible office ). Within the context of higher education, sensitivity to the collective struggle of disabled people and the individual life experience of students and colleagues is necessary in order to avoid discriminatory practice.

The expression ‘nothing about us without us’ chimes with the requirement of The Equality Act (2010) for institutions to involve stakeholders in order to develop appropriate policy, practice and procedures. Working with disabled people as individuals in order to come up with bespoke reasonable adjustments is part of the story. Engaging strategically with the civil rights agenda with the aim of eliminating institutional disablism is another. At The London School of Economics for example, students who need it have access to a room where they are able to rest if their impairment results in pain and fatigue in particular circumstances. The provision of such a facility recognises the individual embodiment of impairment as well and provides a solution which is relevant to some disabled students for whom worsening of pain and fatigue (which would be inevitable without the rest facility) would limit participation.

Disability within the equalities agenda

A range of protected characteristics is covered within the Equality Act (2010) which also recognised that people have multiple identities. Legislation which preceded the act enshrined a positive duty to build good relationships between men and women, disabled and non disabled people and ethnic groups. Disabled people however are still often marginalised by the non disabled majority which includes those who make erroneous and annoying assumptions about the tragedy of life with an impairment. (Crow 1996,Shakespeare 2006,Cameron, 2008, 2011).

Unthinking disablism is still enshrined in language, culture and media. (Shakespeare 1999,, Kuppers 2002, 2003,Sandahl 2008). Comedy provides numerous examples of offensive scenarios which position disabled people as ‘other’ in the sense of ‘less than’. (Mallett 2009 ,Martin 2010). Comedian Tom Binns as Ivan Brackenbury in the Edinburgh Fringe Festival for example raised a laugh with the following comment. ‘Dwarves are like real people too, only smaller. They have feelings, happy, grumpy...’ (Martin 2010). Sexism, racism and homophobia are less likely to pass without comment (as evidenced by the response to sexist sports commentators in the news recently for example). It is incumbent upon public bodies to foster good relationships between diverse groups yet disablism in language often passes

without comment. Impairment is not synonymous with tragedy, or an appropriate vehicle for discriminatory comedy .

At the LSE I recently presented a session alongside The Diversity Adviser in which we celebrated the richness of the LSE community, which includes over 50% international students, and scholars from all over the world. We were very careful to locate disability alongside other diversity strands as something which brings an added positive dimension to the LSE community. In any elite university disabled students are necessarily very high achievers. They have to get the same high grades as anyone else to be permitted entry and have often had to navigate significant barriers along the way. The requirements of the Equality Act (2010) make it incumbent upon staff who work in public bodies including universities, and, in particular, leaders and governors, to challenge oppression of marginalised groups including disabled people. Widening Participation practitioners need to be integral in order to ensure that appropriate encouragement is given, and careful monitoring of representation of minority groups within the academy is necessary in order to ensure that equalities practices are making a difference. An understanding of the social construction of disability is required in order to engage with the process of eradicating barriers.

Inclusion

A key driver towards inclusion is the Equality Act (2010) ,and its precursors including the Disability Discrimination Act (1995). Bringing together protected characteristics under one banner enables institutions to consider the inter relatedness of diversity strands and embrace the concept of multiple identity. Kerma (pseudonym) for example is deaf. She is also an international student, a Muslim and a mother. Her identity encompasses all these attributes and more. Some characteristics(including her impairment) are visible and others are not. She is also more than the sum of the descriptors listed here, and unique as an individual. Disabled people often express disquiet about individuality being subsumed under an homogeneous impairment label. Madriaga et al (2008). If the impairment can be seen there is a tendency to identify the individual with the characteristic, which is of course only part of who that person is. A disabled student illustrated this point by telling the story of being approached by someone who informed her that his son was married to someone like her. Her response was ‘What-a woman?’ His reply was ‘No a dwarf’.

In the context of higher education a move towards an ethos of inclusion sits well alongside the equalities agenda. The benefits of inclusive practice are broad and have the potential to minimise disadvantage for many people with and without impairments. (May and Bridger 2010).A reductivist definition of inclusive practice is provided by Martin (2008) with the use of the single word ‘belonging’. A culture which facilitates a sense of belonging amongst diverse students is arguably the antithesis of that which creates a sense of othering. Embedding services traditionally badged as being especially for an identified group, creates a sense of their ordinariness, which can avoid disenfranchising

those who would not go near a facility apparently aimed at a group with which they do not identify. ‘For inclusive practice to be seen as part of the institutions routine practice (rather than compensatory or additional) an embedded approach was required’ (May and Bridger 2010:36). Segregated disability specific services have the capacity to perpetuate ‘othering’ particularly if the notion of shared responsibility is not embraced by the institution. The underlying assumption that disabled people are other seems antithetic to the notion of inclusive practice.

It is not really possible to ascertain the proportion of disabled students who have made a choice not to access disability services but there is a growing body of evidence which indicates that disability is a contested identity for a variety of reasons. People with impairments covered by the Disability Discrimination Act (1995) may not always realise that they are entitled to reasonable adjustments. Diabetes is often given as an example . (Nightingale2007). A low rate of disclosure by disabled staff is noted across the sector and fear of discrimination has been identified as a partial explanation (Nightingale 2007). Some with neurodiverse learning styles such as dyslexia or Asperger syndrome prefer to think in terms of neurological difference (Beardon and Edmonds 2008). The ‘special needs’ label, which is a hangover from school for some students, often has negative connotations . (Valentine 2002). I am currently undertaking research with students who received assistance at school under the ‘special needs’ banner and the following illustration serves to remind practitioners that those two words should never be used side by side in the same sentence in a university. A Russell Group undergraduate with five A levels at grade A described himself by saying, ‘I used to be a special needs child’. The pejorative ‘special needs’ descriptor he used about himself was an indicator of low self esteem and lack of belief in his own brilliance (despite evidence to the contrary). Goffman (1968) refers to the spoiled identity and the young man in question illustrated the unintended consequence of the language of special education.

The following quotation illustrates a point of view which problematises the engagement of a person who identifies as neurodiverse with people he defines as the neurotypical majority.

‘People need to get over the idea that the ‘neurotypical’ way is right and any

other way is wrong. The AS way is just as valid - in fact better in some

respects. We should be accepted in our own right, and the emphasis should

be on educating NTs not to be so discriminatory, and to get over the absurd

and offensive idea that they are better than anyone else. People with AS don’t

need to be cured or trained as to how to pretend to be ‘normal’- it’s the

‘normal’ people who need to learn that; contrary to what they think, they are

not the pinnacle of God’s creation and that there is, in fact, a lot they could

learn from Aspies. They need to be taught not to be prejudiced and

discriminatory and to accept and accommodate us for who we are.’ (Beardon

and Edmonds , 2007:64).

The Affirmative Model of Disability

Cameron (2011) explains his interpretation of The Affirmative Model as follows in an abstract presented to the LSE Disability Identity Conference 2011. His words are quoted in full as to paraphrase would not do justice to their eloquence.

‘ Identifying disability as a productive as well as a restrictive relationship, the affirmative model is a tool which offers insight into the everyday processes through which people with impairments are turned into disabled people. Disability is not just about what people with impairments are prevented from doing and being, but about what they are required to do and be instead. Whether this involves taking on roles of passive dependency or triumph over tragedy, either way negates the lived experience of impairment and signifies the desirability of normality. While every self-affirming act performed by a disabled person that validates their own subject position as an impaired person involves an act of transgression, the affirmative model demands a recognition of impairment as an ordinary rather than an extraordinary characteristic of human experience, and for inclusion within ordinary life on that basis’.

Conclusion.Disability is a complex and socially constructed phenomenon and impairment does not necessarily have to lead to disability. Identity is complicated and multi faceted thing and people with impairments assimilate them into their identity in different ways. The Affirmative Model of disability reflects the ordinariness of impairment. Practitioners working in higher education are reminded of the requirements of the Equality Act (2010), the need to promote inclusion, celebrate diversity and bulldoze barriers out of the way.

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A personal reflection on Dyslexia in the Fire Service.By WM Pierre Marsh

The issues surrounding employment of staff with Dyslexia in any of the Emergency Services are serious, due to the safety-critical activities. However, it is submitted that the biggest difficulties to overcome are actually due to the traditional cultures of the Services, and a consequence of misunderstanding of the condition, Dyslexia.

The traditional way of thinking in the Emergency Services was a focus on ‘what it takes to be a rescuer’. This was associated with masculinity – negated women and the belief that the fit and able man is key to the rescuer’s ability to function in extreme situations. The Firefighter was seen as part of a firefighting machine, which was automated and responsive to the words of command from their officers. This system was (and still is to a large extent) militaristic, and reinforced a prescribed way of thinking. It also ensured a ‘sameness’, and that performance of the individuals could be calculated as being the same and measured as such. Firefighters, in some sense, surrendered their individuality to become part of the machine. This process was seen as very important to secure the belief that safety within the operational environment was dependent on this structured system.

Drills were the order of the day, getting people to repeat the same movements over and over again, with little attention to differences in learning styles. In fact, those individuals who did not pick up skills within the times of the norms were identified as being suspect in terms of their capability. The rather unsatisfactory method of addressing this problem was, ironically. further repetition of the same task

Fortunately, the Fire Service has begun to move away from this largely successful but somewhat draconian system to one which recognises individuality, and the fact that people can and do learn in different ways. Nonetheless, it did not really get to grips with the realities of differences until recently when a change in the law - the Disability Discrimination Act 1994 - was extended to include the Fire Service in 2004. This placed a legal duty on the Service to ensure diversity in the workforce, and to accommodate, as far as possible, firefighters who could do the majority of the role, but had a disability – the effects of which could be compensated / minimised through reasonable adjustments to working practice or equipment.

Dyslexia is legally recognised as a disability, although most people, including senior HR and psychologists, do not fully understand its implications for the Emergency Services. Dyslexia is seen as an issue concerning the written word, and this misunderstanding of Dyslexia is impeding the Emergency Services generally from offering appropriate support to Dyslexics, which will tackle the risk-critical issues which often make the Services nervous of employing operational staff who have Dyslexia. The fact that a note book with

specialised software and working in partnership with external specialist tutors can overcome certain types of Dyslexia is not widely known or understood.

What is becoming apparent is that Dyslexia is more than difficulty with reading or writing words. Dyslexia organisations are trying to change traditional perceptions, to an understanding that Dyslexia is a complete but very different way of processing information. It is not necessarily deficient – just different. The question for the Fire Service is ‘Does this issue of thinking in a different way stop the individual from assessing and undertaking the operational procedures that are necessary to function within a risk critical environment?’ To be honest, most Brigades will be able to point to many individuals who function perfectly well within risk critical environments, be they Dyslexic or not.

As previously stated, Dyslexia is about thinking in a different way, and using coping strategies to assimilate into the Non-Dyslexic world and activities. This creates an additional pressure on the Dyslexic individual, and it is well know than Dyslexic people suffer disproportionately from stress as a result. Managing this is a further challenge for the Fire Service.

DevelopmentsDespite the shortage of specialist mentors and tutors, I believe that there is a lot of support which can be achieved by Non-Dyslexic colleagues. For this reason, I am working with Dr Ross Cooper from South Bank University to design a course which will develop the thinking styles of Dyslexics. The course is all about processing information within the environment of the Emergency Services. The Emergency Services will be able to:· send staff who struggle with their Dyslexia in an operational and risk-critical

environment. · Use information resources to assist them in making the incredibly complex

decisions about the abilities of their Dyslexic colleagues.

The Case Study of Andrew actually sets out the basic framework for the course. Students will go through a process that challenges their ways of thinking but assesses their progress in innovative ways. When discussing this with Dr Ross Cooper recently, he posed a very interesting question. He said “Would the course place the Non-Dyslexic at a disadvantage?. The answer is we just don’t know, but you can see where we are going with this. It is hoped that at the end of the course, all parties will have a much better understanding of developing better communication links to tap into the vast human capabilities, transcending traditional and fashionable ideas of what constitutes capability.

The course has been validated by South Bank University Academic Committee for a Post Graduate Certificate.

ConclusionThe challenge for the Fire Service in meeting its Diversity targets and dealing with staff with disabilities is that traditionally it equated achieving ‘sameness’ as being important to the achievement of its aims and objectives. The

Diversity agenda makes significant demands and challenges to this secure notion. It de-stabilises the longstanding belief system of ‘sameness’ equating to safety. If ‘sameness’ is the code for capability and safety, ‘difference’ becomes the code for risk and danger.

Dyslexia is a different thinking style – the disability comes from the difficulty the individual has operating in a Non-Dyslexic world, which uses language, communication and imagination differently from that which is natural to them.

Societal expectations and legal requirements now demand Diversity in the Fire Service. Embracing Diversity inevitably presents challenges in recruitment and selection, and in dealing with disabilities which emerge or are identified after appointment. However, Diversity is not merely a political agenda, it is recognition that people with alternative skills, experiences ways of thinking can make a valuable, and additional contribution, and enable us to better understand the diversity of the public whom we, as Firefighters serve. People with Dyslexia are part of the diverse construction of our society and they too have a lot to offer the Fire Service, if the Service is willing to think a little differently too!

1st UK Higher Education Disability Identity Conference 4 MAY 2011 | 10:00 – 21:00

Conference Evaluation Summary

Speakers and delegates in attendance at the First UK Higher Education Disability Identity Conference were asked to complete an evaluation, providing their feedback on their experience at the conference. A summary of these responses is provided, grouped by theme.

Response Rate

Of the fifty-three speakers and delegates in attendance, 39 provided feedback. This is a response rate of 73%

Comment

‘’The Disability pride conference at the LSE was, in 15 years I've had of attending events to do with disability etc, quite the best one I've ever

been to and taken a part in. I was thrilled to be able to host such a wide range of experienced, inspirational and impressive speakers, refreshingly for once all actually disabled people with the experience and authority to really provide meaningful and useful presentations. This, along with the equally well planned panel discussions, made for a seminal event in disability politics, and social practice,and I think praise is well deserved for Nicola Martin and everyone else at the LSE and NADP. This should become an annual event immediately, in my opinion at a different University location each time, and it above all else proved that Britain really needs to have more than one University providing a degree level course in Disability Studies." Mat Fraser.

SpeakersHaving only disabled people presenting was amazingly empowering Wide variety of speakers and topics but with a common goalGreat academic –personal-performance mixCommonality between speakersAll speakers equally excellentMat Fraser (Master of Ceremonies)

AtmosphereAtmospherePositive about disability as part of diversity EmpoweringEasy accepting ambianceCritical spirit, advocacy energy, passionUnique and thought provoking Reinvigorating and challengingVariety, solidarity, humour

LogisticsExcellent conference pack Kept well to time

SessionsLoved the comedy Loved the poetry Audience debate on identity added to my research

Final Comments

Well done, thank youMy university would like to host the next one

Areas for ImprovementMore Q and A timeWarmer roomMore bathroom breaksInternal adminMore delegates, especially LSE students /alumni Better dateMore tea Longer conference next time

Additional CommentsThe best disability conference I have ever been to Just fantasticLooking forward to next yearI loved it

OutcomesI feel more confident about my own impairment I feel more confident with disabled people Networking with wonderful peopleI’m going to read about The Equality Act Critical Disability Studies should be taught at LSE