Introduction
It is perhaps paradoxical that just at the moment Disabled people* were launching a new social movement, capitalism was about to enter a new socio-economic phase known as Neoliberalism. In Britain we witnessed the rise of Thatcherism which begun the assault on the welfare state; but it was New Labour that did for the social movement I refer to as the Disabled People’s Movement. The Age of Austerity introduced by the Coalition government in 2010 saw pockets of resistance emerge among d/Disabled people*, however, to what extent the politics of disability mirror the disability politics of the 1970s and 80s, is questionable. There are people, including me, who see a contradiction: while on the one hand radical disability politics have been lost, on the other, the landscape of disablism as also changed. Given this situation, we believe there is need for a fresh appraisal of disabled people’s social oppression however this is going to be difficult to achieve without either a social movement or an understanding of a collective political identity. Many existing Disabled activists mourn the loss of both community and culture. In their place they see narcissistic individualism and divisive forms of ‘identity politics’. In this piece I want to explore disability politics in relation to building communities. Disabled people often talk about a ‘disabled community’ but it is not always clear to what this refers or even if it is viable to do so. There are others who argue that it is more accurate to speak of ‘disabled communities’ because they are formed for a variety of reasons and are constituted in different ways. In this piece, I will consider the nature of the coming together of disabled people by touching upon disability politics and culture, a collective identity, the Disabled People’s Movement, language as well as various concepts.
Let us begin our exploration of what ‘disabled communities’ are or might be by considering what we mean by ‘community’, and our understanding of what is understood within specific contexts, to be ‘disabled’. There are two definitions of ‘community’ that will be employed; sometimes separate from each other, but at other times in a combined manner. These definitions are:
- a group of people livig in the same place or having a particular characteristic in common
and:
- the condition of sharing or having certain attitudes and interests in common (1)
The key feature in both definitions is the idea of commonality. We will return to these definitions in due course and the question of what disabled people have or have not got in common. First, of course, we need to try and identify who it is that we are speaking of as this is complicated. Mike Oliver spoke about the need for an individual to self-define themselves as a Disabled person* and he identified three elements within this process. For Oliver, disabled people are defined in terms of three criteria:
(i) they have an impairment
(ii) they experience oppression as a consequence; and
(iii) they identify themselves as a disabled person.
In addition he wrote:
Using the generic term [disabled people] does not mean that I do not recognise differences in experience within the group but that in exploring this we should start from the ways oppression differentially impacts on different groups of people rather than with differences in experience among individuals with different impairments. (2).
We will consider how oppression differentially impacts on different groups of people in due course, but before we do, it is necessary to acknowledge that, in terms of having some form of socio-political awareness, self-identity as a Disabled person is an important element. The problem is that for the majority of disabled people / people with impairments this ‘identity’ is not the first one they encounter. For the vast majority of people with impairments, irrespective of when they acquire the impairment, their first encounter with ‘disabled identities’ tends to be through interaction with members of medical professions and therefore they are externally imposed as part of any assessment. It is vital from the beginning to recognise that more than a single ‘disabled identity’ exists. Here we are confronting the fact that there is often an intersection between the personal and the public recognition of someone being classed as ‘disabled’ (sic). It could be argued that this is where disablement enters an individual’s life. Oliver and Barnes inform us that disablement:
…. refers to the economic and social processes that ultimately create both impairment and disability. It is of course mediated by personal experiences of impairment and influenced by the politics of disability as well as societal responses to the ‘problem’. (Emphasis added – BWF) (3)
How individuals address the contested areas of personal experience, societal responses and the politics of disability varies greatly. People who acquire an impairment, for example in later life, are more likely to deny or reject an identity of ‘Disabled person’ because they both accept, and reject at the same time, the oppressive meanings attached to seeing ‘disability as a personal tragedy’. (4) Other people, for example, members of the Deaf community completely reject seeing themselves as either ‘impaired’ or ‘disabled’, but nevertheless “play-the-game” by using legal entitlements to claim Personal Independence Payment or Access to Work. I am not addressing Deaf people in this piece.
Then of course there are people with impairments who seek to ‘pass as normal’, (sic) thus rejecting any ‘disabled identities’ How these people see themselves however may not match up with the ‘public gaze’ that falls upon them. The exact opposite may also occur where people with impairments may accept a number of ‘disabled identities’ only to discover that these self-perceptions come to be denied by the ‘public gaze’ or through definitions used by the State. Finally, I would argue that it is possible to have situations where imposed ‘disabled identities’ are not static, and as a result, people can slip in and out of having ‘disabled identities’ depending upon the social situations they find themselves in. Often the person with the impairment has no control over or involvement with the processes they are subjected to. Taken as a whole, this complexity, makes it extremely difficult to identify the boundaries around what constitutes the ‘disabled community’ or should that be ‘disabled communities’? Given this situation, it becomes equally difficult to determine which individuals are identified as being included or excluded from defined ‘disabled communities’. Why does it matter? I would argue that it matters for a number of reasons relating disabled people’s experience of social oppression in general and, more specifically, in relation to their ability to mount a meaningful resistance to the current attacks upon their lives. How do we engage with others who are subjected to both disablement and disablism? (5)
Disabled communities and encountered social oppression
What needs to be asked at this particular moment in time is: what are the key factors for Disabled activists employing a social oppression approach to consider? The first thing that is required is clarity in relation to our understanding of social oppression because all too often it is viewed simply as being another term for discrimination. Paul Abberley, in my opinion, offered a helpful materialist approach towards understanding social oppression. He argued:
…. to usefully apply the notion of oppression to the complex of impairment, [functionality and social restriction] involves the development of a theory which connects together the common features of economic, social and psychological disadvantage with an understanding of the material basis of these disadvantages and the ideologies which propagate and reproduce them. Only such an account, specific and systematic, can move discussion beyond the level that it has reached so far…. (6)
I would argue the social model developed by Oliver, partly addressed this, but underplayed the nature of disabled people’s social oppression due to the lack of clarity as previously mentioned. What we need to acknowledge is that:
- Disablement is about the social exclusion and marginalisation of people with impairments within mainstream social activities
- Disability as a form of social oppression means people with impairments’ lives are often determined by an army of professionals and/or policy makers rather than being self-determined by them
- People with impairments’ experiences are extnally socially constructed as being ‘individualised problems’, therefore they are denied a collective identity that acknowledges the actual commonality of social experiences within and between specific groups of people with impairments
- The experience of social oppression transform people with impairments into disabled people
- Disabled people are a social oppressed group because the management of society’s structures, systems, cultures, and values which lead to their absence from decision making processes, socio-economic participation, consideration in terms of their lifestyles, and as a consequence, leaves them both powerless and voiceless
The political identity of being Disabled people – that is, the forging a collective identity through the identification of people with impairments’ “social situation” i.e. being disabled by society, is often lost because this particular meaning remains unknown to many, or because there is an ambiguity contained within the words. We cannot ignore the fact the term ‘disabled people’ is used in mainstream society to define “the disabled” (sic) in a more ‘politically correct’ manner. The notion of ‘disabled community/communities’ is therefore subject to ambiguity as well. Many people with impairments have argued they are part of the ‘disabled community’ but are not represented by the politics that informed the Disabled People’s Movement. In this paper, I speak about ‘Disabled People’s Movement’; many of the older scholar activists such as Vic Finkelstein and Mike Oliver used the term, ‘Disability Movement’. In terms of disability politics talking of the Disability Movement would be logical as I will demonstrate later, but to add a further complication, the 2000s saw the term hijacked by the disability charities.
How should we attempt to address the problem of ambiguity and conflicting meanings? I have elected to use a number of specific terms within the context of this blog to make a number of distinctions within what I call ‘the politics of disability’. Oliver and Zarb wrote in a paper for Disability and Society that:
…. the politics of disability has, so far, been narrowly conceived as part of the processes of party and pressure group activity. These approaches …. it will be suggested that they are unlikely to produce substantial political gains in terms of ensuring the full participation of disabled people in society or contribute significantly to improving the quality of their lives. Finally, it will be argued that the politics of disability can only be properly understood as part of the newly emergent social movements of all kinds and it is only within this context that their real significance can be grasped. (7)
The distinction between ‘the processes of party and pressure goup activity’ and the politics that were coming from ‘newly emergent social movements of all kinds’, was a valid one to make. The paternalism of the Labour Party, and the single issue pressure group politics of the Disablement Income Group, and the Disability Alliance, were counterposed by Disabled people’s organisations such as the Union of Physically Impaired Against Segregation (UPIAS) and the British Council of Organisations of Disabled People (BCODP) during the 1970s and 1980s. Key to the political differences was the development of the social model of disability and growth of Disabled people’s organisations. The emergence of the Disabled People’s Movement was an important development in forging new disability politics and the radical collective identity of Disabled people, but we must be honest and recognise that only a fragment of the population who had impairments were exposed to these politics. I also fully accept the view expressed by Campbell and Oliver that because the Disabled People’s Movement was a social movement and not a political organisation with a fixed agenda, it contained forces that had both revolutionary and reformist aspirations. (8)
Elsewhere I have traced the history of the Disabled People’s Movement and explained how the landscape has changed over the last twenty years as the self-organisation of Disabled people and awareness of disability politics has declined. The radicalism of the original social model of disability is rarely visible these days. (9) In their book, Oliver and Barnes, make a fresh distinction between the Disabled People’s Movement and the new hybrid alliance between some disability charities and some market facing disabled people’s organisations they refer to as the Disability Movement. (10) I have characterised the Disability Movement has having what I called, Janus politics; this is because they look back to the concepts of the old Disabled People’s Movement, but empty them of their original radical meanings and replace them with reformist ideas that sit comfortably with Neoliberal self-reliance and individualism. (11) As a result of the rise of the Disability Movement, I would make a sharp distinction between the broad ‘politics of disability’ that exist within society and disability politics which I see as the praxis coming from the historical materialists approach to defining disability. (12)
In my opinion there are now very few Disabled people or disabled people’s organisations who maintain disability politics similar to those in the 1980s. I would also suggest therefore that there is only a rump of the old Disabled People’s Movement still in existence and that we need to note here that there can be organisations of disabled people who straddle the politics of both the newer Disability Movement and the old Disabled People’s Movement. It is necessary at the same time to accept that within the Disability Movement there are disabled people who want ‘rights’ and oppose the ‘cuts to services’, but nevertheless hold views which correspond to the ‘individual tragedy’ approach towards disability. The Disability Movement is not a social movement and has not been that active since the ‘Hardest Hit’ campaign. (13)
This diversity of opinion among disabled people cannot be ignored or pushed to one side. As a result of living disabled lives in the age of austerity, the political terrain within ‘disabled communities’ has changed. The term ‘disabled activist’, I would argue has a far wider meaning to what it did have twenty or forty years ago. The spectrum of the ‘politics of disability’ within campaigning is evident with bloggers discussing their own personal angst caused by benefit reforms for example. In the past the Disabled People’s Movement tended to share to a certain extent a common language and approach towards seeing disabled people and their issues; today, I would suggest the language and politics involved is far more fractured. This situation has result in some tensions existing among, for example, Disabled People Against Cuts where there is not always a clear understanding of disability politics within its membership. (14) The Disabled People’s Movement had always had to deal with questions around ‘who does it actually represent’ and with what ‘authority’ did it speak. By speaking of itself as an emerging social movement enabled the Disabled People’s Movement to cut itself so slack; but the climate has changed, the immediate needs of disabled people are the focus; talking about ‘rights’ and ‘inclusion’ no longer seem the priority upon the agenda, yet that is often the language we hear the most.
Under these conditions, those disabled activists who believe only a rump of the old Disabled People’s Movement exists, are having to face up to the prospect of having to create out of the ashes that remain, a new resistance movement. In order to do this they must develop an understanding of who it is they are working on behalf of and who they intend to work with. If there is an emerging new politically based social movement coming out of the struggles against the Government’s austerity measures, then I believe sooner or later it will have to ask itself:
Are we seeking to represent existing disabled communities or are we in actual fact articulating the political expressions of certain voices among disabled people from these communities?
I would argue disability politics is about defending the interests of members of disabled communities in relation to the experience of social oppression; even though some groups and individuals may have conflicting interests or reject these politics altogether. I have long held the view that it was a political error to assume that the social model could always discussed or used without reference to the individual tragedy model; in my opinion, it stunted the political education of disabled people and contributed to people’s confusion regarding the breaking of the causal link between impairment reality and disability. We will consider the implications behind this when discussing diverse communities.
As I have already indicated, disabled people are not part of a homogenous group; some people with impairments may belong to the upper layers of the class system and have the financial means to blunt the impact of disability and/or they may hold political views which distance themselves from other disabled people and their communities. (15) This said, I also believe social movements represent specific groups and therefore accept the view that the old Disabled People’s Movement did not represent all of the ‘disabled community’(sic) in terms of political expression. Recognising both of these facts, I would prefer to use the term disabled communities to include any people with impairments who are defined as “disabled” via all of the definitions employed within British society; and as a consequence, this would include:
- any people with impairments who accept the label of “disabled” as defined by dominant ideologies and practice – either by choice or as a result of not being exposed to any alternative view of disability
- any peope with impairments who reject the label of “disabled” as defined by dominant ideologies and practice but either by choice or as a result of not being exposed to any alternative view of disability refuse to see themselves as ‘disabled’
- any people with impairments who may view disability as a political issue but do not necessarily embrace disability politics; and
- any people with impairments who embrace disability politics
Seeing people with impairments in this way raises all kinds of difficult questions. I believe it is necessary to do so, not only to avoid abandoning many of them, but also to acknowledge the need to find appropriate ways of trying to engage with them. Not all of these people with impairments, of course, fit into Oliver’s criteria of self-definition of being a ‘disabled person’. My decision to use the term disabled communities is a political one. Let me explain why I consider this to be important. When the time comes to attempt to forge a new social movement led by Disabled people, I believe it will be crucial to acknowledge, as I have already stated, disabled communities are not homogeneous for a variety of factors. The social and political diversity of these disabled communities were never adequately addressed by the Disabled People’s Movement in my opinion. Given the last decade where the Coalition Government began the process of attempting to re-define who is and who isn’t a ‘disabled person’, I believe it is time, more than ever, for d/Disabled activists to have a clearer picture of our relationship with others within these disabled communities. I believe, using the two definitions of community outlined earlier, it is possible to say that particular disabled communities do exist and have existed for a considerable length of time, however what relations they have or had with disability politics is extremely difficult to determine. There are many d/Disabled activists who believe we have lost a sense of community. To what extent this relates to the demise of the Disabled People’s Movement is something I believe needs exploring.
Up until now I have referred to the Disabled People’s Movement as a social movement, but what does this mean in concrete terms?
The Disabled People’s Movement: was it a social movement?
A simplistic definition of a social movement is a ‘loosely organized but sustained campaign in support of a social goal, typically either the implementation or the prevention of a change in society’s structure or values.’ A more academic definition comes from Sidney Tarrow who defines a social movement as ‘collective challenges (to elites, authorities, other groups or cultural codes) by people with common purposes and solidarity in sustained interactions with elites, opponents and authorities.’ (16) He specifically distinguishes social movements from political parties and advocacy groups. Taken together there’s little doubt that in sociological terms – the Disabled People’s Movement fits the definition. How important is this? I would suggest understanding the Disabled People’s Movement as a social movement helps us analyse its strengths and weaknesses; enabling us to decide what to maintain and what to change if a new movement is to emerge.
Oliver argued the Disabled People’s Movement was a social movement because:
- it was peripheral to conventional politics
- offered a critical evaluation of society
- embraced ‘post-materialist’ or ‘post-acquistive’ values
- had an internationalist perspective
What underpinned the disability politics of the Disabled People’s Movement was:
a) an emphasis on self-organisation b) a commitment to radical political action to promote change c) to improve the quality of disabled people’s lives and promote their full inclusion into society
He stated recently that a ‘…key feature of the disabled people’s movement has been its focus on social exclusion and oppression.’ (17) I doubt many disabled activists would disagree with this broad picture, although some like myself might suggest that over the life of the Movement there were elements that moved away from these politics or have subjected them to ‘re-interpretation’. Similarly, there were and still are Disabled people who question the feasibility of gaining ‘full inclusion into society’ given the nature of it.
Where I believe a major schism in disability politics emerged can be traced to the idea that the Movement:
‘… argues that the barriers to disabled people’s inclusion are embedded in policies and practices based on the individualistic and medical approaches to disability.’
Nothing new there, this is accepting Oliver’s models, however they go on to write:
The removal of these obstacles involves gaining control over material resources and the range and quality of services. Previously we suggested the aim of the movement was to be ‘consciously engaged in critical evaluation of capitalist society and in the creation of alternative models of social organisation … as well as trying to reconstruct the world ideologically and to create alternative forms of service provision.’ (18)
I make no apologies for going into detail over this point because to me it is central to an analysis of where the Disabled People’s Movement divided and sections abandoned disability politics altogether. When we consider the political task of challenging disabling barriers it is necessary to recognise the role played by d/Disabled people who called for civil and human rights. I would argue this call should have been viewed as a means to an end rather than an end in itself. By shifting the focus entirely on “Rights” the Movement, I would argue, lost sight of the bigger picture which halted any critical evaluation of capitalist society. As a result, the ‘leadership’ through BCODP and Rights Now, tied the Movement to a reformist agenda which centred primarily upon “Rights” as the key to unlocking the disabling barriers at the micro level of society. The disabling barriers at a macro level – the structures and systems of capitalist society itself were as a consequence played down. Suddenly ‘inclusive practices’ could remove disabling barriers and address disablism.
An important turning point in my opinion was the establishment of New Labour’s Task Force and the willingness of the centre-right, at the exclusion of the left, to work with New Labour. From 1996 onwards BCODP and later UKDPC and the National Centre for Independent Living began to ‘re-invent’ the Disabled People’s Movement as a ‘rights based movement’ and in the process left more radical disability politics behind. Where the left in the Movement saw the passing of the DDA as a defeat, the centre-right slowly but surely sought accommodation. The Movement began to lose sight of its aims and New Labour isolated large sections of it whilst incorporating others into the “revisionist agenda” that stole the language and concepts of the Disabled People’s Movement, but in the process emptied them of their radical meanings and replaced them with watered down versions as a make shift position until the Neoliberal ‘third way’ agenda for welfare reform kicked in. (19)
The significance of this is two-fold in my opinion. Firstly, it led to the Disabled People’s Movement becoming only a rump of its former self and, over time, it has lost sight of its original aims and methodological approach. What this means is it offers no leadership to disabled communities as it became trapped within a static time warp until it fizzled out. UKDPC, for example, employed the same language used in the 1990s but with little or no reference to the current struggles facing disabled people. The majority of Disabled activists therefore fall into two broad camps – a radical resistance current who still hold onto a disjointed political perspective hewn from disability politics – and a reformist current that is a hybrid of disability charities and DPOs who employ ‘fusion politics’ which is basically a mixture of the dominant approach to disability coated with a reformist bastardised social model of disability. These people offer no serious challenge to the Government or disablism.
Secondly, it seems highly questionable to speak about a Disabled People’s Movement under these conditions because the original aims have been “lost” or placed upon a back burner. Over the last decade there have been numerous calls from DPOs and activists to breathe new life into the Disabled People’s Movement but nothing concrete emerged as a result until Disabled People Against Cuts, Inclusion London and Alfie established Reclaiming Our Futures Alliance which remains small. (20)
What do we mean when we speak of disability rights?
The idea of reclaiming our futures is a good one, but it requires greater clarity. Understanding and building disabled communities will be an essential element of this process, but another crucial part of the exercise of ‘re-claiming’ the ground secured by the original Disabled People’s Movement, I believe, has to involve the task of distinguishing between the broad self-defined meaning given to ‘disability rights’ by Disabled activists and the more specific meaning associated with the struggle to obtain civil and human rights. The latter, I would argue, should be viewed as a legal set of demands. In my view the two are not synonymous. I spoke earlier about how a reformist perspective that existed within the Disabled People’s Movement re-interpreted the social model of disability as a ‘rights based approach’ and this needs challenging. In my opinion the attractiveness of this approach stems from how many disabled activists have come to articulate their understanding of what is meant by ‘disability rights’. In an online discussion around this subject, one disabled activist wrote:
For me rights should be at every level all aspects of life so that individuals can choose how to use them in their own lives with support of communities and structures. We just have to lobby to get them right or at least hold on to what we’re got these days. (21)
I want to suggest this articulation combines the desire to have, and to hold onto, civil and human rights, with the drive for what I would call self-determination. The term self-determination is more commonly associated with ‘nation states’ and ‘peoples’, but in more recently times it has been used to mean: ‘the free choice of one’s own acts without external compulsion’, which would fit into what the disabled activist was articulating. (22) It is this definition of self-determination I want to work with in relation to exploring what is meant by disability rights. The immediate issue I need to confront is the fact that this definition can be applied to both an individual and a collective of ‘peoples’. I want to leave to one side the issue of the individual’s right to self-determination and concentrate fully on the question of self-determination in a collective sense.
It has already been argued that within mainstream society the label ‘the disabled’ (sic) represents disabled people as a collection of individuals rather than as an identifiable social group. I have also stated that in my view the term ‘disabled communities’ includes any people with impairments who are defined as “disabled” via any definitions employed within British society. In sociological terms, ‘the disabled’ would be classed as a social category because they would be viewed as a collection of people who do not interact but who share similar characteristics. Similarly, ‘disabled communities’ might also be regarded as a social category to a degree, however, within these broad ‘communities’ there are groups and individuals who do interact with each other and share similar characteristics and a sense of unity and, therefore as a result, could be considered as constituting a social group. McLeod writing from a psychological perspective in relation to social roles states:
We do not expect people to behave randomly but to behave in certain ways in particular situations. Each social situation entails its own particular set of expectations about the “proper” way to behave. Such expectation can vary from group to group.
One way in which these expectations become apparent is when we look at the roles that people play in society. Social roles are the part people play as members of a social group. With each social role you adopt, your behaviour changes to fit the expectations both you and others have of that role. (Emphasis added – BWF) (23)
UPIAS was quite clear in its belief that what united disabled people was not the actual existence of impairments, but rather the oppressive social relations people experienced as a result of having impairments. (24) Finkelstein suggested that an understanding of the psychology of disability must start from the principle that ‘we make sense of our world according to the way we experience it’. He goes on to say:
If disabled people are denied access to normal social activities, we will not only have different experiences to that of our able-bodied peers but we will interpret the world differently; we will see it, think about it, have feelings about it and talk about it differently. The question is, however, ‘from what stand-point should this psychological experience be interpreted?’ (25)
He went on to argue that as most things are ‘made sense of’ through the lived experiences of non-disabled people, this means the development of an understanding of the psychology of disability has been prevented. Disabled people’s own interpretations of the world have been ignored, not allowed to developed or simply denied because they are regarded as subjective and therefore not valid. (26) How is this relevant to understanding what disability rights are? Much of the discussion in recent years around disability has centred upon what has been described as ‘disabling barriers’ experienced in terms of social activity and this, in turn, has been reduced to a question of discrimination. I want to put forward the idea that this had resulted in a series of unhealthy interpretations of UPIAS’ original thinking and as a result produced reformist ‘social approaches’ that conflate a number of different issues. Do disabling barriers and social restrictions mean identical things? Are people thinking incorrectly when they see social oppression as being another way of articulating discrimination? It is not my aim to play down the significance of discrimination in disabled people’s lives, but I would argue that the social oppression of disabled people is far more than being an experience of various forms of discrimination. I want to suggest disabled people’s experience of ‘unequal and differential treatment’ goes beyond encountering barriers or discriminatory practices; it includes the denial of their social worth and often results in invalidating their existing social roles within society. The majority of disabled people outside of socially constructed stereotypes are invisible. To my way of thinking this brings together a number of ‘sites of struggle’ in terms of overthrowing social oppression.
When I consider UPIAS’ original thinking, I focus upon the idea that ‘disability’ is a “social situation” which is imposed upon people with impairments by the ‘social arrangements’ found within society. Personally, I believe this could be misleading, unless we recognise that these ‘social arrangements’ include existing social relations. It follows therefore that the imposition of social restrictions, often experienced as disabling barriers, results in people with impairments facing ‘unequal and differential treatment’. Disablement produces this unequal and differential treatment however, it is disablism that maintains it. In addition, I believe the Disabled People’s Movement by distorting the social model’s usage with an emphasis on ‘removing disabling barriers’, underemphasised the structural nature of ‘being disabled by society’ – how disabled people are materially excluded from and marginalised within capitalist societies. Our social situation means that the manner of our oppression – made invisible, externally defined, often actively excluded and marginalised – assists in disables our ability to combat it. By seeing ‘disability’ as a “social situation”, I believe we can construct concepts and language that supports a social approach towards disability. This means using these concepts:
Disability = the imposition of social restrictions on top of impairment reality created from disablement.
Disablement = is the negative result of economic, political, and ideological influences on the structures, systems, values, culture, and practice of given societies as experienced by disabled people.
Disablism = the acceptance and promotion of ideas and practice associated with dominant ideologies that present ‘disability’ as the absence of normality, a state of inferiority and the cause of perceived lack of social worth found within an individual – e.g. a burden on society, lacking in capacity.
Social oppression = the historical development of ‘unequal and differential treatment’ of people with impairments which has led to their exclusion from or marginalisation within mainstream societal activities.
It would follow then logically, the Disability Movement [Disabled People’s Movement] = a social movement in opposition to disablism and disablement.
I find it useful to employ the notion of ‘juxtaposition’ which is when two contrasting objects, images, or ideas are placed together or described together in order that the differences between them can be emphasised. Seeing disability as imposed via social restrictions enables us to articulate our opposition to it through the juxtaposition of emancipatory engagement of disability praxis. Hence:
Disability praxis = the processes of theory, reflection, action, reflection in relation employing disability politics.
Disability politics = the development, promotion, and practice of politics, i.e. “the set of activities that are associated with making decisions in groups, or other forms of power relations between individuals” which stand in opposition to disabled people’s social oppression.
Disability rights = sets of demands by disabled people to further self-determination and in opposition to their social oppression. Not simply the legal protection of their civil and human rights.
Disability culture = the cultures developed by disabled people in their struggle for emancipation from disability. It is therefore a political counter-culture which rejects ‘normality’ and societal evaluation of living lives with impairments
Disability pride = the expression of defiance (often as celebration of being who and what we are) against unequal and differential treatment and a demand for social justice, equality, and acceptance.
Disability art = production of material that recounts or challenges disabled people’s lived experience of unequal and differential treatment as part of the emancipation struggle.
For me then, these concepts work together and enable us to view disability rights as being primarily about self-determination and disabled people fighting to establish:
- control over defining who and what they are
- control over what is done to their own bodies
- the means to fully participate within social activities without confronting unnecessary restrictions
- that people with impairments are not seeking ‘sameness’, but rather recognition and acceptance of differing lifestyles
Disability rights is also about addressing ‘disabled identities’, internalised oppression and disabled people’s social status within a disablist society.
Disabled within society
This last point returns us to the question of the social roles disabled people have within society. The diversity of disabled communities means that disabled people’s engagement with mainstream society and therefore the social roles they have varies greatly. Finkelstein acknowledged that whilst Wood developed the ICIDH around locating ‘disability’ as a personal limitation, he nevertheless recognised that at the micro level of society – daily interactions – the social restrictions an individual experiences are caused by the negative outcome of the interaction between their personal restrictions caused by their impairment and their immediate social environment. (27) Wood refers to this as a “handicap” and attributes the cause for the social handicap to be the nature and degree of the individual’s impairment. (28) Finkelstein rejected the view that the negative outcome is caused by the impairment and instead argues that the negative outcome is in fact the result of the actual interaction between the person with the impairment and their social environment – both sides being a contributing factor. What this means is the more significant an individual’s impairment is in terms of social interaction or relations, the more likely it is that their encountered social environment – created by and for people without impairments – will lead to negative interactions.
This is how disability is ‘imposed on top of people’s impairments’: the disabling factor being the negative outcome. Changing the nature of the interaction e.g. altering the social environment will reduce or remove the disabling barriers. (29) During the 1990s this ‘disabling barriers’ approach was popularised through Disability Equality Training and found predominance within the BCODP campaign for civil rights. (30) I am raising it here for three reasons: firstly, I believe the ‘disabling barriers’ approach underpinned the growing call for disability rights and the visualisation of what these “rights” might look like. Secondly, I believe it aids our understanding of how the understanding of what disability rights meant altered and, subsequently, how it contributed to the divided path within the Disabled People’s Movement. Thirdly, I believe the ‘disabling barriers’ approach does demonstrate how at the micro level of society members of differing groups of disabled people can be excluded or marginalised within mainstream social activities but it also neglects the macro level of capitalist society where fundamental changes have occurred under Neoliberalism.
Disabled people’s engagement with mainstream social activities is often determined by the disabling barriers or social restrictions they encounter and this impacts upon the social roles they may have, the actual or perceived social groups they belong to, and ultimately their considered social worth. People can, of course, belong to more than one social group and their socio-economic situation can be used to define them as a social group or class. In the 2001 census, for example, its Socio-Economic Classification (SEC) placed in eighth and final position: ‘people who never worked or long term unemployed’. Williams-Findlay reminds us:
Marxist Economist, Ernest Mandel by going back to Marx’s theory of absolute impoverishment, clarified Marx’s observation that capitalism “throws out of the production process a section of the proletariat: unemployed, old people, disabled persons, the sick, etc.” Marx described these groups as part of the poorest stratum “bearing the stigmata of wage labour.” Mandel reminded us, “…this analysis retains its full value, even under the ‘welfare’ capitalism of… (the post-war era).” (31)
As I have noted elsewhere, not all peple with impairments belong to the underclass, however, a sizeable number do. Many of these people have already faced the brunt of the Government’s austerity measures. The fact that disabled people come from diverse backgrounds is often used as a reason for questioning to what extent they can be regarded as a social group. Brown when exploring social groups and society, wrote:
The structure of any group is based on the existence of social norms. “A social norm is a way of thinking, feeling, or behaving”, which must be perceived by the group members as being appropriate. These norms are what defines the values of the group and provides a basis for determining what is good or bad. (32)
To my way of thinking, the idea that groups are baseon social norms corresponds with Finkelstein’s arguments about disabled people’s own lived experiences. Further, I would suggest that this links my broad definition of disability rights and the emergence of the Disabled People’s Movement. In Campbell and Oliver’s book, disability politics, Barbara Lisicki is quoted as saying:
I don’t think anyone knows for sure what a movement is but essentially what we are talking about is a set of ideas and an analysis which people can support in different ways. I always think of the movement as a set of people that have somehow made a connection with a set of ideas. (33)
Sixteen years later we found Oliver and Barnes speaking about the politicization of disabled people in the following manner:
Initially some disability scholars viewed the politicization of disabled people as a response to their common experience of oppression. …. This provided a unifying group identity and interest while identifying the source of these grievances in the structures and processes of market-led disabling society.
However, they go on to say:
For many people with impairments, engaging in collective action was liberating and empowering and a source of positive identity … (34)
When Lisicki spoke about ‘a set of ideas and an analysis’, I want to suggest she was talking about seeing disability as social oppression and the social model of disability. However, these are the thinking behind disability rights; the actual forging of disability politics came through disabled people’s self-organisation, the creation of disabled people’s organisations and campaigning for independent living and anti-discrimination legislation. This again is not the whole story either. Alongside disabled people’s self-organisation and development of disability politics came their desire to express their experiences, feelings and struggles within a cultural framework that has come to be known as disability culture. All of these activities I would describe as being based on the notion of self-determination. Where I urge caution is where Oliver and Barnes said is their articulation of this collective action as ‘a source of positive identity’ because it opens the door to an interpretation of disability rights as a particular form of “identity politics” which excludes rather than includes people.
The collective identity of Disabled people
I want to employ ideas from Nancy Whittier in order to explore what constitutes a collective identity and how that corresponds to activism within social movements. Whittier notes:
- Collective identity entails a sense of connection with others, beliefs about the nature of one’s group and its place in society, and associated actions in daily life.
- Viewed as three main components of collective identity boundaries, consciousness, and the politicisation of everyday life.
- Differs from social identity where an individual’s sense of self as a member of social groups, such as woman, Latina, student, daughter, etc.
- Collective identity is a group’s definition of themselves as a collective and entails shared beliefs, symbols, and rituals. (35)
Embracing a collective identity, therefore, often involves individuals engaging with processes that confirms their identity, e.g. as Oliver’s criteria sets out, seeking out contexts or interactions that confirm not only membership of the group, but also their internal sense of self. In this sense, the political identity of being a Disabled person corresponds to the collective identity which is operationalised as working as an oppositional group seeking to shape how they – Disabled people – are seen by others as part of seeking to change their group’s status.
Whittier argues that collective identities become politicized through power struggles, as groups define their shared grievances, assign blame for their position, and call for action. Crucial for her is the fact that the construction and politicisation of a collective identity is an important aspect in promoting participation in protest. This is what I believe Barnes and Oliver were alluding to. From her perspective then, the collective identity is what the “identity” in identity politics refers to and making collective identity visible is at the core of visibility tactics.
There are however major problematical areas that are rarely discussed. Being a Disabled person, in a political sense, requires acknowledgement of the oppression they face being coupled with the embracing of the collective identity. UPIAS argued that:
We do not organise because we are people first, nor because we are physically impaired. We organise because of the way society disables physically impaired people, because this must be resisted and overcome. The Union unashamedly identifies itself as an organisation of physically impaired people, and encourages its members to seek pride in ourselves, in all aspects of what we are. (36)
Is there a certain ambiguity in this message which makes it difficult to understand or articulate? UPIAS was not idealist, their motive was not to validate people with physical impairments’ “humanness”, nor did they self-organise on the basis of having common experience of physical impairment; the focus was on the implications of having physical impairments in a society that penalised people who have physical impairments. It is still a feature of the politics of disability that the position of impairment reality in social approaches towards disability remains contested. If people were not impaired or perceived as impaired, then they would not encounter associated social restrictions, but how impairment reality is factored into negative or oppressive interactions is still open to debate. Within the International Classification of Impairment Disability and Handicap, later replaced by the International Classification of Functioning, impairment is still implicated as the direct cause of social disadvantage. (37) Both UPIAS and Oliver, severed this direct causal link, but this does not mean impairment reality is not a factor at all. It is not impairment reality that is disabling in terms of social relations, but rather the societal responses to impairment reality. Having functional limitation, for example, in terms of mobility is an impairment reality and a personal restriction; but what transforms this into a disabling situation is how agencies within society respond to people who are mobility impaired.
Because in dominant ideologies and many post-modern discourses the relations between impairment, functionality and social restrictions are often conflated, how people can make sense of the identity of being “disabled” is hard to determine. Some reject both the oppressive label/identity and the collective political identity, others reject one or the other; however, I would argue most disabled people have never been exposed to the very idea of ‘disabled’ as anything other than a personal characteristic to be managed or be ashamed of. In my opinion for the majority of people with impairments who identify in some way as being ‘disabled’, this is through acceptance of dominant ideologies and their social situation. It is only with the raising of socio-political consciousness that this naturalised common sense becomes disturbed and the possibility of seeing one’s self and others differently.
The hegemonic power of dominant ideologies rests with the negative appraisal of impairment/disability. The social model was therefore part of a counter-hegemonic process which combined both politics and culture, but the lack of clarity in terms of where impairment reality sits, has distorted our understanding of who and what we are. I believe Paul Abberley offers a useful framework here. He argued that a theory of disability as oppression would:
- Recognise and, in the present context, emphasise the social origins of impairment
- recognise and oppose the social, financial, environmental and psychological disadvantages inflicted on impaired people
(3) sees both (1) and (2) as historical products, not as the results of nature, human or otherwise
(4) assert the value of disabled modes of living, at the same time as it condemns the social production of impairment
(5) is inevitably a political perspective, in that it involves the defence and transformation, both material and ideological, of state health and welfare provision as an essential condition of transforming the lives of the vast majority of disabled people.
I believe it is necessary to unpack what Abberley meant by ‘the value of disabled modes of living’ and to do this I want to draw attention to the fact he advocated a social model of impairment. He said what is required is:
…. essentially an attitude of ambivalence towards impairment…. Impairment must be identified as a bad thing, insofar as it is an undesirable consequence of a distorted social development, at the same time as it is held to be a positive attribute of the individual who is impaired. (38)
As previously noted, the positioning or role of impairment in disability politics is perhaps the most contentious and inadequately discussed of issues. Disabled people fighting against exclusion and marginalisation; for their right to self-determination and liberation, are the bedrock of disability politics and the essence of our collective identity. However, Whittier informs us that:
Collective identity is not a simple reflection of a group’s structural location, for example, its race and gender. It is an interpretation of that structural location or status that emerges from activism, conversation, experience, and reflection. (39)
Disabled people’s structural location is not a share personal characteristic, but a socio-political one: our exclusion and marginalisation within society, nevertheless this is due to the framing of impairment/disability within society. Here is where Abberley offers a concise way of articulating this:
A crucial feature of oppression and the way it operates is its specificity, of form, content and location; so to analyse the oppression of disabled people in part involves pointing to the essential differences between their lives and those of other sections of society, including those who are, in other ways, oppressed. …. To claim that disabled people are oppressed involves, however, arguing a number of other points. At an empirical level, it is to argue that on significant dimensions disabled people can be regarded as a group whose members are in an inferior position to other members of society because they are disabled people. It is also to argue that these disadvantages are dialectically related to an ideology or group of ideologies which justify and perpetuate this situation. Beyond this it is to make the claim that such disadvantages and their supporting ideologies are neither natural nor inevitable. Finally it involves the identification of some beneficiary of this state of affairs. (40)
Our oppression and social situation are not caused by our impairments, but nonetheless result from the fact that we do have impairments. What this means, using Abberley’s terminology, is that ‘disabled modes of living’ refers to our strategies, lifestyles, cultures, that come from living with impairments within disablist societies. Disabled people’s social oppression is ever present, but it is not the only thing that shapes our individual identities or lifestyles. Our ‘disabled modes of living’ may be created or touched by our social situation, but most d/Disabled people are not consciously engaged in disability politics twenty four seven. This said, what about the existence of disability culture in all of this? I would argue that disability politics only resonates through the embracing ‘pride in ourselves, in all aspects of what we are’, as UPIAS put it, or as Abberley suggested, viewing our impairments as ‘positive attributes’. Our impairments are part of who and what we are. It is, of course, up to individuals to decide their ownership or relationship with their impairments, but within terms of developing a social, political, and cultural response to our oppression and the group of ideologies which justify and perpetuate our situation, it has been important to challenge ‘disability as individual tragedy’.
This challenge has not be easy because the hegemonic power of dominant ideologies is extremely strong and well established within mainstream cultures, language, and expectations. As previously stated, the majority of disabled people have either internalised the language and concepts associated with ‘disability’ (sic), or they have rejected any association with it altogether. Reaching out to these disabled people is extremely difficult.
This situation is further complicated by the nature of our social oppression – the social, financial, environmental, and psychological disadvantages inflicted upon impaired people – which impacts on our sense of self, hinders our lifestyles, thwarts self-determination and ability to self-organise and build community. The Disabled People Movement sought to build itself through the self-organisation of disabled people’s organisations which were expected to draw their membership from disabled communities. From the outset this was hampered by the disabling barriers they encountered. Our ability to understand the dilemma of the Disabled People Movement is perhaps assisted by Whittier’s outline of how most social movements work. Their existence is shaped by their ability ‘to define their constituency in their own terms, promoting that definition to the larger public and using it as a basis to critique existing definition.’
The Disabled People Movement attempted to do this via the social model and Disability Equality Training, but I believe this was internally undermined by the politics of sections of the Movement. The passing of the Disability Discrimination Act was a political defeat, but the real betrayal came when Disabled activists refused to resign from the Disability Task Force set up by New Labour. The double refusal – Labour rejecting a social model definition of disability and BCODP representatives refusing to quit at this point – sounded the death knell of the Disabled People Movement. Why do I believe this to be the case? My answer is straight forward, the Disabled People Movement lost its purpose at this moment in time because as Whittier explains:
Groups present their collective identity publicly as a strategic attempt to frame their own collective identity as well as that of opponents. Overall, collective identity can be a goal in itself, can be strategically deployed publicly to advance other movement goals, and can promote mobilization.
The Disabled People Movement allowed New Labour to politically neuter it; it abandoned disability politics in favour of meaningless ‘integration policies’ and individualistic legal citizen rights. The disabled communities were left high and dry with fewer disabled people’s organisations in existence and those that were soon found the pull away from politics towards service delivery too great. This takes us full circle back to the divisions within the disabled people’s movement.
The loss of disability politics, disability culture and the existence of a powerful collective identity since the middle of the 1990s, has left most disabled communities in limbo or developing in ways absent of radical disability politics. On reflection I would argue we failed to address the relationship between disabled people’s organisations and the communities they were supposed to serve and draw from. Our culture was neglected in favour of quick fit political solutions ironically called “rights”. By the time the Age of Austerity came, is it surprising that disabled people were well and truly screwed?
Where now?
I believe there is little or no chance of creating a new Disabled People Movement or invigorating disability politics until we address the issue of understanding disability communities and explore how we can build, support, and intervene within them. What is required is much more than a shot of new disability politics or a questionable attempt to reinvigorate the social model of disability. We need to develop a fresh disability praxis by reflecting upon the usefulness of existing models of disability. I believe both of Mike Oliver’s models are time-bound and are not useful ‘tools’ for exploring either current dominant ideologies and practice in relation to disabled people or the nature of disablement and disablism.
The individual tragedy model, for example, pre-dates the emergence of the World Health Organisation’s ICF which means it does not address the Neoliberal ideological shift of ‘looking at ability, not disability’ (sic) as part of the self-reliance and anti-welfare state narratives. (41) We also need to politically address the inappropriate and misleading idea of a “medical model” (sic) as it hinders our ability to articulate how a range of dominant ideologies intersect to establish disablism. The “medicalisation” of our bodies has nothing to do with medical intervention; it is a method of evaluating socio-economic worth where the extremes are ‘kill or cure’. (42) The social model also has become problematic. It has become a sacred cow rather than a tool. Often people employ a variety of ‘social models’ rather than THE social model itself. Most people have a crude understanding of how to apply the historical materialist social model’s methodology. Oliver explained:
Using the generic term does not mean that I do not recognise differences in experience within the group but that in exploring this we should start from the ways oppression differentially impacts on different groups of people rather than with differences in experience among individuals with different impairments. (43)
When I hear representatives of a variety of ‘different groups’ of disabled people state the social model does not ‘work for them’, I listen to why they believe that. Each time they illustrate a failure to apply exploring how oppression differentially impacts upon THEIR GROUP; instead, they tend to moan about false comparisons with other disabled people. I do believe a historical materialist social approach can do the business, but here is a thought, does it matter if an alternative method of understanding and challenging oppression is developed? Whoever said the social model is a materialist bible or the sum total of disability politics?
In terms of disability politics, I believe we need to reconstruct our collective identity, discover ways of overcoming communication barriers, challenge how impairment/disability is made sense of among all the groups I mentioned earlier. Paramount in all of this process work has to be drawing the contours around the commonalities and differences that exist between us. This raises again the question of what constitutes ‘disabled communities’? Using a historical materialist social approach, I would argue that these communities exist because of the nature of capitalism and, consequently, how this comes to impact upon people with impairments within them. Living disabled lives is a social situation, but within that lies a myriad of issues including discovering cultures of resistance – personal, social, political, but most importantly, as a collective whole.
*I used Disabled people to mean those who have embraced the collective identity “as a tool to frame political claims, promote political ideologies, or stimulate and orient social and political action, usually in a larger context of inequality or injustice and with the aim of asserting group distinctiveness and belonging and gaining power and recognition.” Similarly, I refer to ‘disabled people’ as those who may or may not acknowledge they are socially oppressed. This produces d/Disabled activists who can be aware of discrimination but not necessarily signed up to radical disability politics.
Footnotes
(1) https://www.bing.com/search?q=definitions+of+community&FORM=QSRE1
(2) Oliver, M., (1994) Capitalism, disability and ideology: A materialist critique of the Normalization principle
(3) Oliver, M. and Barnes, C., (2012) The New Politics of Disablement, London, Palgrave Macmillan, p.7 (4) Thomas, C., (2004) How is disability understood? An examination of sociological approaches, Disability and Society, 19, 6, 569– 83.
(5) Clifford, E., (2020) The War on Disabled People Capitalism, Welfare and the Making of a Human Catastrophe, Zed Books
(6) Abberley, P., (1987) The Concept of Oppression and the Development of a Social Theory of Disability, Disability, Handicap & Society, Vol. 2, No. 1
(7) Oliver, M. & Zarb, G., (1989). The politics of disability: A new approach. Disability, Handicap & Society, 4, 221-239
(8) Campbell, J. & Oliver, M., (1996) Disability Politics: Understanding Our Past, Changing Our Future, Psychology Press (9) Williams-Findlay, B., (2019) The Disabled People’s Movement in the Age of Austerity: Rights, Resistance and Reclamation in Resist the Punitive State: Grassroots Struggles Across Welfare, Housing, Education and Prisons, edited by Hart, Greener, Moth
(10) Oliver, M. and Barnes, C., (2012) The New Politics of Disablement, London, Palgrave Macmillan
(11) Williams-Findlay, B., (2019)
(12) Ibid.
(13) https://www.disabilityrightsuk.org/policy-campaigns/campaigns/hardest-hit-campaign
(14) Williams-Findlay, B., (2019)
(15) Shakespeare, T., (2006) Disability Rights and Wrongs. Oxford and New York: Routledge.
(16) Tarrow, S. G., (1998) Power in movement: social movements and contentious politics, Cambridge Press
(17) Oliver, M. and Barnes, C., (2012) The New Politics of Disablement, London, Palgrave Macmillan, p173
(18) Ibid.
(19) Williams-Findlay, B., (2019)
(21) I attribute this quotation to Mark Lynes who made a comment on Bob Williams-Findlay’s Facebook page in 2012
(22) https://www.merriam-webster.com/dictionary/self-determination
(23) McLeod, S. (2008) Social Roles, Simply Psychology
https://www.simplypsychology.org/social-roles.html?source=post_page-
(24) Union of the Physically Impaired Against Segregation,., (1981) Disability Challenge 1
(25) Finkelstein, V., (1990) EXPERIENCE AND CONSCIOUSNESS – Notes for Psychology of Disability Talk Liverpool Housing Authority
(26) Leonard, P., (1984) Personality and Ideology: Towards a Materialist Understanding of the Individual. London, Macmillan
(27) Finkelstein, V., (1998) THE BIODYNAMICS OF DISABLEMENT?
(28) World Health Organization., (1980) International classification of impairments, disabilities, and handicaps: A manual of classification relating to the consequences of disease. Geneva, Switzerland
(29) Thomas C., (2002) Disability theory : key ideas, issues and thinkers. In Barnes C, Oliver M, Barton L, editors, Disability studies today. Cambridge: Polity Press. p. 38-57
(30) Gillespie-Sells, K.; Campbell, J., (1991) Disability Equality Training the Trainers‟ Guide, LBDRT, London: CCETSW
(31) Williams-Findlay, B., (2011) Lifting the Lid on Disabled People Against Cuts
See, http://disability-studies.leeds.ac.uk/files/library/williams-findlay-Lifting-the-Lid-on-Disabled-People-Against-Cuts-D-S-final.pdf 2011
(32) Brown, R., (1999) Group processes: Dynamics within and between groups 2e. Oxford: Wiley Blackwell.
(33) Campbell and Oliver,1996: 21
(34) Oliver, M. and Barnes, C., (2012) p171
(35) Whittier, N., (2017) Identity Politics, Consciousness Raising, and Visibility Politics, Prepared for The Oxford Handbook of U.S. Women’s Social Movement Activism p.8/9
(36) Union of the Physically Impaired Against Segregation, (1981) Disability Challenge 1 p.7
(37) Barile, M., (2003) Globalization and ICF Eugenics: Historical coincidence or connection? The More Things Change the More They Stay the Same, Disability Studies Quarterly, Spring, Volume 23, No.2 pp. 208-223 http://www.cds.hawaii.edu/dsq
(38) Abberley, P., (1997) The Concept of Oppression and the Development of a Social Theory of Disability in Disability Studies: Past Present and Future edited by Len Barton and Mike Oliver; Leeds: The Disability Press, pp. 160 – 178, p.176
(39) Whittier, N., (2017) p.9
(40) Abberley, P., (1997) p.164
(41) Barile, M., (2003)
(42) Ruhi, S. Airlie, M. Sajawal, H. Towers, L. and Da Silva, L., (2017) MEDICALISATION, NORMALITY AND THE BODY
(43) Oliver, M., (1994) Capitalism, disability and ideology: A materialist critique of the Normalization principle