Understanding Social Movements: Theorising the Disability Movement in Conditions of Late Modernity

Introduction

This article draws upon the findings of an Economic and Social Research Council (ESRC) funded study ¹ , the aim of which was to reconsider existing theories of citizenship and social movements in the light of the aims of the UK disability movement and to do so in a way that injected the voices of disabled people into these debates. The scope of the study was thus comparatively broad and the conclusions lengthy. For this reason this article does not provide an overview of the entire study, but rather it focuses upon one aspect of the research – the nature of the disability movement's ‘struggle’ – and relates this to the debate surrounding how best to define the movement in terms of existing models of social movements.

The first section of the article provides a brief clarification of the use of the term ‘disability’ as opposed to ‘impairment’ within the article and the starting point for defining the collective action of disabled people in the UK as the ‘UK disability movement’ within the research referenced here. The second section provides a methodological outline of the research on which this article is based. The starting point for the main body of the article that then follows is the claim by authors such as Shakespeare (1993) and Oliver and Zarb ([1989], 1997) that the disability movement can be defined as a ‘new’ social movement. Empirical evidence from the research is subsequently presented in the form of quotations from respondents relating to their views on two issues that, as will be discussed, are of critical importance to the theory of ‘new’ social movements: identity and culture. A critical comparison is then made of the research findings in relation both to ‘new’ social movements and to wider social movement theorising and an argument is put forward that it may not be possible to understand this movement, entirely, by using any of the existing models. The article concludes by outlining the possible starting point for a new approach based upon forging a closer link between citizenship and social movement theory by focusing on the nature of engagement.

Defining ‘disability’ and the ‘disability movement’

It is the – admittedly somewhat controversial – assertion of this article, that the definition of disability provided by the Social Model of Disability ² is no longer entirely adequate, for it perpetuates a disembodied notion of disability. More contextualised understandings of personhood are now emerging that acknowledge the part that the physiology of embodied persons plays in determining life experiences (see Butler 1993, Turner [1996] 2000, Jenkins, 1998). Proponents of this understanding of personhood claim, however, that to understand fully the effects of physiology a social framework must be employed (Jenkins, 1998). Applying this approach to attempts to understand the experience of disability, it is the argument here that the Cartesian compartmentalism that has led to the separation of impairment and disability should be abandoned in favour of establishing a social framework with which to understand the experiences of disabled people. This framework would be based upon the ‘realignment between body, self and society’. (Bendelow and Williams, 1995: 156)

Whilst the fears expressed by many within Disability Studies – that considering impairment in this way ‘fudges’ the issue of causality and the source of disability – may be understandable, nevertheless, applying Butler's theorising, to challenge successfully the discourses of power that ‘disable’ individuals, it is important to understand that impairment, whilst having an undeniable, basic, biological definition, is also imbued with diverse social meaning. It is for this reason that this article rests upon a definition of disability that allows for the ‘reversibility of impairment and disability’ and an understanding of the effect on the lives of disabled people of the simultaneous experiences of pain or debility and associated oppression by a ‘disabling’ society.

With regard to the debate within Disability Studies surrounding the nature of the UK disability movement, whilst it is not possible within the confines of this article to outline this debate in any great depth, it is possible to summarise some of the key areas of discussion as follows: the appropriateness of the term ‘movement’ to describe the ‘political’ activities of groups of disabled people (see for example Oliver, 1997); whether the disability movement can be termed a ‘new’ social movement (see Oliver and Zarb, [1989] 1997; Shakespeare, 1993); the effects of divisions between disabled people, in terms of gender, ethnicity and type of impairment, on the cohesiveness of the movement (see for example, Priestley, 1995 and Vernon, 1999); and the ‘location’ or organisational focus of the movement (see Oliver, 1997). In short, these disputes represent a continuing debate over the existence, structure, function and aims of the movement and are of such importance that although the purpose of this article is to contribute fresh empirical evidence to one aspect of this debate in particular – namely the issue of how best to define the disability movement in terms of existing models of social movements – it is necessary to acknowledge the position taken here towards some of these wider disputes. The following section outlines this position.

In his well-known introduction to sociology, Giddens (1993) has provided a useful ‘broad-brush’ definition of a social movement as:

A large grouping of people who have become involved in seeking to accomplish, or to block, a process of social change. (p. 746)

Additionally, Blumer's ([1951] 1995) definition is also helpful because he states that social movements are not always about social change, but may also be ‘expressive’ in nature. It was the combination of these two broad definitions that provided the initial basis for my categorisation of the various episodes of collective action by disabled people as the ‘disability movement’.

This is not to overlook, however, the fact that a degree of diversity exists in terms of opinion, aim and action between the various constituent groups and individual members of the UK disability movement. Many widely recognised social movements are equally diverse, the women's movement being a prime example. Total homogeneity in terms of all aims and forms of action is arguably not, therefore, something that needs to be considered as a defining feature of a social movement. According to this somewhat ‘loose’ framework for defining a social movement, the fact that the nature and basis of collective action may alter somewhat over time, or vary according to the position of the actor, does not mean that successive action by a recognised collective should not be considered to be a part of a larger phenomenon – a social movement. In this way, rather than making a distinction between episodes of collective action such as the disability rights campaigns of the 1970s and more contemporary expressions of collective action by disabled people, for example, it is instead possible to see these episodes as part of a changing ‘disability movement’.

For a movement to be classified as such, however, there does need to be some common ground between the various individuals and groups that comprise that movement and it is the argument here that a uniting principal does exist within the disability movement. Just as the various strands of the women's movement can be seen to be united on the basis of such things as a shared understanding of the need to challenge pre-conceived ideas about women, so the various strands of the disability movement are united in their view that we live in a ‘disabling society’.

Having established this fairly loose framework within which to define the ‘disability movement’, determining a coherent body of disability groups or disabled individuals who can be considered to be a part of this movement is more difficult. Broadly speaking this research used Oliver's (1997) definition of the disability movement as being constituted only by organisations of disabled people, not organisations run by non-disabled people for disabled people. Oliver's apparent tendency to equate the disability movement with the constituent member groups of the British Council of Disabled People (BCODP) was, however, considered with care. Experience of voluntary work within this field has informed me that the BCODP does not encompass all groups run by disabled people or all groups that consider themselves to be a part of the movement and, further, that there is considerable debate amongst disabled people surrounding the importance of this organisation. It is for this reason that compiling a list of organisations to be contacted about the research involved looking beyond the constituent member groups of the BCODP.

Methodological issues

This article draws upon the findings of research carried out at 6 organisations run by disabled people, for disabled people. These organisations were as follows: Sheffield groups

A ‘politically’ orientated group of disabled people. (S1)

Lancaster group 3.

An organisation acting as a resource for other disabled people. (L1)

Cumbria groups 4.

A support group predominantly comprised of young/middle-aged people living with chronic arthritis. (C1)

The study was, admittedly, comparatively small scale. It is important to stress, however, that in focusing upon micro-representativeness, this research was not seeking to be ‘definitively representative’ of the entire disability community. Thus, the research remains accountable only to the groups and individuals involved. At the same time, however, it was also considered that the groups that had agreed to becoming involved in the research were not so atypical, that insight gained from working with them would be of no relevance to understanding the disability movement as a whole. Indeed, since all 6 organisations involved in the research matched the definition of groups that make up the disability movement as set out by Oliver (1997), it was concluded that the resulting data would allow for tentative generalisations to be made.

The research was carried out qualitatively and according to an abductive approach (see Blaikie, 1993). This approach gives a central place to the views of the ‘insiders’ and as such has clear ontological implications for it rests upon an understanding of the social world as being that which is perceived and experienced by its members from the ‘inside’. It is an approach that also has clear epistemological implications for it begins by seeking to encourage actors to reflect upon their activities and thus ‘give accounts’ for their actions. The role of the researcher is then to transfer these accounts into ‘social science descriptions’ and/or to form social theories from the data or to relate the findings to existing perspectives. The important point about abductive theorising, however, is that the aim is to avoid developing overly abstract terms for recurring themes lest the resulting theories should prove to be inaccessible to the social actors in question. Carrying out this study according to the abductive approach was, therefore, thought to be the most likely way of ensuring that the conclusions of this research were accessible and therefore ‘useful’ to the research participants and other disabled people.

In-depth semi-structured interviews or focus groups were held at each organisation. In all of the interviews/focus groups respondents were encouraged to choose which questions from the interview schedule they wished to discuss at length and to identify any further issues relating to the research topic that they considered to be important. Each interview/focus group lasted between 1–2 hours. Full transcripts were sent to each participating group for their approval. Transcripts were analysed using a process of informal or open coding. The purpose of this analysis was to ensure that the voices of respondents remained undistorted and to avoid fracturing the text. Feedback was given to all participating organisations in the form of a report on the research findings.

Theorising the disability movement in conditions of late modernity

Setting aside the debate regarding the term post-modernity, whilst in no way denying its importance, most social scientists would agree that a wide variety of changes have occurred within the past century that, when considered together, bring into some doubt the idea that we inhabit a ‘modern’ society. Some of the key changes have occurred in relation to patterns of unrest. Protest, for example, is no longer focused within a homogenous ‘working class’. The blurring of the boundaries between socio-economic groups and the divisions that occur within such groupings are now widely acknowledged and understood. What has come to be called ‘late modernity’ is now characterised by a variety of forms of unrest that can either be seen to result from the breakdown of ‘class’ as the major social cleavage, or to be hastening further the decline of class-based politics. A variety of other issues has now become the basis for movement and ‘struggle’, for example: gender, sexuality, ethnicity, and disability. Such issues, it is often claimed, are not just about structural inequality, indeed many may not be about structural inequalities at all, but are also about clashes in belief and value-based systems.

In the light of these changes, older theories of social movements from the American and European traditions seemed to be in need of revision. The so-called ‘1960s watershed’ consequently saw a shift away from explanations of social movements that viewed unrest as being solely the product of such things as ‘alienation’, ‘relative deprivation’, status inconsistencies or, alternatively, as being based upon the actions of social deviants or misfits. Whilst in America this ‘watershed’ saw the development of the Resource Mobilization and Political Process models, in Europe the ‘new’ social movement theories emerged.

Although it would be inaccurate to suggest that there is any widespread agreement amongst the ‘new’ social movement theorists surrounding the core foundation of such movements, certain key themes may nevertheless be identified. Firstly, most strands of ‘new’ social movement theory emphasise that while such movements may continue to act within the state or political sphere, nevertheless, the major arena for the collective action of ‘new’ social movements is the cultural or civil sphere (Melucci, 1989). Further, ‘new’ social movements, according to authors such as Touraine (1987), Habermas (1981) and Melucci (1985, 1989, 1996) are concerned with such matters as the defence of cultural identity, recognition of the ‘other’, and resistance to attacks on the personal aesthetic by defending the ‘lifeworld’ from colonisation by the system. In other words, as Martell (1994) has commented, ‘new’ social movements in comparison with older movements are viewed as being concerned more with redefining culture and lifestyle, than about structural reforms.

This is not to say, however, that all ‘new’ social movement theorists have always offered an ‘either/or’ stance towards the dichotomy of ‘old’ class based movements and ‘new’ non-class based movements. In his work prior to The Information Age: Economy, society and culture trilogy Castells, for example, rather than contrasting cultural with political orientations, acknowledges that urban social movements contain a dialectical mixture of both orientations that find expression in civil society and the state (Buechler, 1995). In this way, Castells (1983) was acknowledging that there can be a diversity of aim and action within one movement. At this point Castells’ (1983) approach remained quite distinct from the major thrust of theorising on ‘new’ social movements. It must be stated, however, that it is clear that in his later work Castells (1997) has moved more firmly towards the dominant view of ‘new’ social movements as being concerned primarily with cultural issues, or what he defines as ‘symbol mobilization’. It is this prioritising of the importance to these movements of cultural rather than structural issues that can therefore be considered to be the defining feature of the ‘new’ social movement theories.

As previously mentioned, the issue of whether or not the disability movement can be defined as a ‘new’ social movement continues to be debated (see Oliver and Zarb, [1989] 1997; Shakespeare, 1993). In many respects, however, the most curious thing about this on-going debate is its very existence. The debate appears to have resulted from and be framed according to a particular underlying assumption – that it would be a ‘good thing’ if the disability movement was a ‘new’ social movement. Thus, whilst to be fair to the writings of Shakespeare, Oliver and Zarb it must be stated that their claims that the disability movement is a ‘new’ social movement tend to be tentative, it is nevertheless difficult to avoid reaching the conclusion that they would probably like the disability movement to be defined in this way. There may be understandable reasons for this. One possible explanation is that there appears to be a ‘popular’ assumption, not always supported in actual theorising on the topic, that ‘new’ social movements possess greater emancipatory potential. Since many of the key academics writing about disability and the disability movement are also key disability activists, it is understandable that they might wish to give the disability movement impetus by claiming that it is a ‘new’ social movement. In this article, however, a different stance is taken to this issue: empirical evidence is presented in support of an argument that there are several key reasons why the disability movement does not, and may never, fit the dominant model of ‘new’ social movements. Further, that this is not a ‘bad thing’, but rather highlights the need for an alternative approach to understanding the disability movement.

The disability movement – seeking recognition for the ‘disability identity’ ³ ?

Regarding the current state of the politics of the ‘disability identity’ Gilson et al., have commented that:

The transformation from tentative affirmation of disability identity to proclamation of disability pride reflects the increasing importance of self-determination. A confident, positive disability identity within a broad, inclusive disability community has emerged. The benefit to disabled people to determine and relate their own stories is increasingly evident. (1997: 16)

Despite calls within a similar period by other authors such as Peters (1996) that claims such as this be considered cautiously, the belief in the existence and importance to disability politics of such a ‘disability identity’ appears to have become key to the dominant strand of theorising on disability.

During this research, respondents talked extensively about what being disabled meant to them in terms of their identities and their views stand in some contrast to this dominant strand of theorising. On the whole, most respondents rejected the idea that their identity as a disabled person was something that was positive, or that it was something they felt they could ‘celebrate’. Most respondents stated that they considered that their disabled identity had been imposed upon them. Of those who did not see their disabled identity as a negative thing, they nevertheless did not see it as something positive, simply as a ‘fact’ to be lived with. These attitudes were expressed by individuals with congenital impairments as frequently as by those with acquired impairments. The following comments exemplify these attitudes ⁴ :

Having a part of your person not working is essentially negative. It is possible to be proud of achievements as a disabled person. To be proud to be disabled was not a concept that found support here. (Member of S1)

I think you come to accept it (disabled identity) because you have to use it when you are claiming for this, that and the other. You accept that you've got that label. (Member of C1)

In addition, several respondents commented that they felt that having become a disabled person, they had in some way ‘lost’ their true identity. One respondent explained this as follows:

We are all individuals with our own identity who have in common that we are depersonalised by barriers including attitudes. (Member of S1)

Interestingly, in addition to these comments that must bring into some doubt the idea of a positive ‘disability identity’ embraced by all disabled people, some respondents expressed reluctance to accept the ‘label’ of disability at all. Considering that all of the respondents were key members of disability organisations, their position with regard to this issue of identity is obviously complicated:

I know other people think I am (disabled/different), but I personally think just ‘I'm one of you’. I just have a mobility problem. I'm me you see! (Member of C3)

We just don't want to be labelled like jars! (Member of S2)

It is important at this juncture, however, to stress that whilst the views of the respondents in this research have brought into some doubt the notion that all members of the disability movement are seeking to be recognised and respected on the basis of a positive ‘disability identity’, this is not to say that respondents entirely rejected the idea that striving for a more positive representation of disability in society is key to the disability movement.

Many comments were made by respondents about the disabling attitudes and behaviour of non-disabled people. These attitudes ranged from unconscious acts that disempower disabled people through their unintended consequences, through widely held misconceptions about certain impairments, to open prejudice. The following quotations demonstrate this range of attitudes and point to the key power imbalances that exist between all non-disabled and disabled people. (For explanatory purposes only, it is perhaps necessary to state that the first respondent quoted here is blind.)

I was on a train once, going to Swansea from Paddington and there was an old lady, and do you know I still can't believe this story, but it happened – and I knew she wanted to talk to me (…) and then she said – ‘Young man, would you like a chocolate biscuit?’ So I was doing my social bit and I said ‘Oh thank you!’ and she placed this silver wrapped biscuit in my hand and there was silence whilst I unwrapped it and just as I was about to eat it, she said: ‘No, stop!’ and I said ‘Why, what's the matter?’ and she said: ‘I didn't mean you to eat the biscuit, I just wanted to know if you knew where your mouth was!’ I couldn't come back from that one, I just sat there chewing the biscuit… I think she'd never met a disabled person and I don't think she regarded me as being a human being, I think she regarded me as an organism that she could experiment with. (Member of S1)

Even now it happens that people come in assume that because there's an able-bodied in the office and assume that they're in charge. (Member of L1)

According to another respondent, such attitudes are both demonstrated within and are perpetuated by the media. In this excerpt the respondent highlights the manner in which disability is often portrayed by the media in terms of crisis and incompetence:

Disabled people only really appear on specific disability related programmes (…) It's not like disabled people are present in all programmes. I mean it's usually ‘issue’ things that come up if it's in the media. It's like, you know… a woman being pregnant and then she becomes blind and ‘Ah! How will she cope with that?’ You know! And then it becomes a crisis… not about people like us, just living their lives really. (Member of C3)

Rejecting such negative images and assumptions about disability was something that was clearly important to many respondents. One individual explained how he utilises humour as a way of disrupting negative responses to the physical effects of cerebral palsy:

The first time I went into the Biker's Pub… I said ‘Hi! I'm Wobbly (name)!’ and after that, you know, that ended any kind of taking the piss! That meant that they had no chance to say ‘Bugger Off!’ (Member of L1)

In another discussion, respondents said that they felt that one of the key functions of their organisation was to promote a positive image of disabled people within the local community. They were also keen to reject the use of derogatory language to describe disabled people, such as ‘invalid’, with its connotation of not being a ‘valid’ person. Respondents from other organisations also stated that changing the language people use when talking about disability was an important part of changing attitudes towards disabled people. Nevertheless, one respondent also stressed that there was a limit to the importance of language when seeking to improve the lives of disabled people:

I just find it quite ironic that there is so much discussion that is a waste of time… it has been ‘academicised’. Unless the position of disabled people in society changes, saying which word is more appropriate is just tokenism. (Member of L1)

For this respondent, efforts made by the disability movement to change the language of disability must not take precedence over campaigns for structural reforms, such as extra funding to support independent living.

In defence of the culture of disability? ⁵

Whilst the findings of this research bring into some doubt the idea that all members of the disability movement are concerned with seeking recognition on the basis of a positive ‘disability identity’, the research also uncovered evidence that questions the idea that the disability movement, as a whole, can be categorised as being concerned with seeking to celebrate or defend a disability culture.

There are two difficulties, it would seem, when considering whether the disability movement is seeking to defend a unique cultural identity: firstly, there is the thorny issue of whether or not disabled people are culturally united. Secondly, there is the problem of identifying an ‘essential’ cultural difference between disabled and non-disabled people. Whilst questions surrounding the disability culture tended to be discussed the least by respondents and the issue did not appear to be part of the main agenda of any participating organisation, nevertheless, evidence in relation to both of these points did emerge.

Evidence of cultural disunity can be seen in the views of respondents who stated that they were concerned about the activities of those engaged in Disability Arts – the ‘Disability Arts Mafia’, as a member of the Lancaster based organisation (L1) termed these individuals – who they feel are ‘ghettoising’ disabled people by celebrating cultural ‘difference’ in a manner that is separatist. This having been said, an element of cultural unity also emerged during the research in the form of the use of non-politically-correct language by disabled people in humorous contexts. A member of the South Cumbria organisation (C2), for example, said that he felt that disabled people were able to ‘crack Christopher Reeve’ jokes, whereas these jokes would be unacceptable if made by non-disabled people. Whilst this respondent suggested that this probably represented the disability culture, given, however, that this was almost the only real cultural difference identified by respondents, the existence of an entirely separate culture of disability remains uncertain. This uncertainty was echoed in the views of the few respondents who did choose to discuss this issue directly:

It's hard to see that (disability culture) existing in very broad terms, in terms of disability as a whole. (Member of C3)

Yes, (there is a culture of disability) but it is not well developed. (…) Not many cultural icons. We have our heroes and villains and jokes – some of the elements of culture, but we are fundamentally different to other cultures in that you can be proud to be a woman, proud to be black, proud to be gay –but to have a part of your person not working is essentially negative. (Member of S1)

Although the issue of a disability culture clearly requires a fuller investigation than was possible within the limits of this research, what can nevertheless be said with some certainty is that the celebration or defence of a disability culture has yet to reach the main agenda of all organisations that are part of the disability movement.

Beyond structural issues?

Having stated what they did not consider to be the main focus of the disability movement, respondents were even clearer about what truly concerned the movement. When asked a variation on the question ‘what, if any, barriers or problems are disabled people facing today?’, most respondents showed a marked tendency to identify structural issues only, or before any other issues. Respondents in this research said that the key problems facing disabled people today include the perpetuation of dependency, continuing problems relating to education and employment, the inaccessible environment and the lack of consultation with disabled people about matters relating to their lives. These problems, respondents considered, demonstrate their exclusion from the ‘ideals of citizenship’ and fighting against such structural barriers represented the major focus of their movement activity. Indeed, a respondent from one organisation stated that fighting against these barriers took up so much of the organisation's time, that they were unable to think about the sort of issues that form the agenda of the ‘new’ social movements:

About being a bit more proactive and probably a bit more militant and probably raising awareness – we're so bogged down in doing what we are already doing, that we find we haven't got time to do anything else. (Member of C2)

These findings therefore echo a concern voiced by Oliver and Zarb ([1989], 1997), who, although proposing that the disability movement may be considered to be a ‘new’ social movement ‘generally’, nevertheless acknowledge that there is a lack of ‘fit’ between the disability movement and models of ‘new’ social movements because the disability movement cannot be said to be prioritising ‘post-materialist’ or ‘post-acquisitive’ values over concerns about income, material needs or social security. I would go further than Oliver and Zarb, however, and argue that the disability movement's continuing focus on a range of persistent social inequalities means that it is very unlikely to be a ‘new’ social movement.

This view of the movement is, of course, likely to be considered to be ‘controversial’ by many people within Disability Studies and the movement, especially by individuals whose personal sense of empowerment is firmly connected with their embrace of the idea of a positive ‘disability identity’ and disability culture. This article in no way seeks to deny the views or equally valid experiences of these individuals. Nevertheless, the rejection by the respondents in this research of the idea of a truly ‘positive’ ‘disability identity’ and their uncertainty with regard to the existence of a ‘disability culture’ makes it difficult to analyse the goals of the disability movement, as a whole, in terms of the ‘politics of difference’ and logically therefore, as a ‘new’ social movement.

Implications

Whilst the evidence from this research strongly suggests that the UK disability movement is not a ‘new’ social movement, this is not to say that it is the argument here that it is some sort of social movement ‘dinosaur’ – clearly, it is not. This having been stated, however, a question then arises, for if it is not a ‘new’ social movement, then how should the disability movement be defined? Whilst it is not feasible within the confines of this article to answer this question fully, it is nevertheless possible to suggest a point of departure for new theorising on this issue:

One question raised by the findings of this research is the extent to which it is either necessary or desirable to reject completely the first-phase theories when seeking to understand contemporary movements such as the disability movement. In other words, is it time to re-visit theories of social movements that existed before the ‘1960s watershed’? Blumer's ([1951] 1995) understandings of social movements, for example, seem very useful when seeking to understand the disability movement. According to his theorising, the ‘career path’ of all movements concerned with social change involves a transition from a ‘general’, only loosely united movement to a ‘specific’ social movement characterised by unity, locational focus and aim. Although he lists a number of factors involved in this transition, he identifies the ideology of a movement as playing an important role, for it must carry respectability and prestige and answer to the genuine wishes and hopes of the members of the movement. That respondents in this research clearly disagree with the views of some of the key academics/activists in the field demonstrates that such a unanimously agreed upon, ‘populist’ ideology is absent within the disability movement. Disagreements, highlighted by this research, relating to issues such as the nature of the ‘disability identity’ and disability culture plus other issues evident in the literature such as the extent to which non-disabled people should be excluded from participating in the disability movement or disability research, or the nature of the relationship between illness and disability, have prevented the formation of a shared ideology. It can, perhaps, be concluded from this that the disability movement is some way away from becoming a specific social movement and that it is best defined as a ‘general social movement’. Defining it in this way, as being at a fairly early stage of development, may thus be a useful way of understanding the disability movement.

There are, however, problems with Blumer's approach, for he somewhat assumed the natural ‘career path’ of social movements from ‘general’ to ‘specific’. This is a problem that was identified by later theorists such as Tilly. A further question posed by the findings of this research, therefore, is to what extent the later American tradition of social movement theorising may be helpful when seeking to understand the disability movement. Tilly's much more fluid definition of social movement activity sees them as: ‘dragons living continuously somewhere in the social underground, but emerging recurrently from their labyrinths to stomp around roaring.’ (1993:6). In this way he does not give social movements the progressive life histories implied by the collective behaviour approach of Blumer. Instead, he proposes that social movements are best understood as varying in nature according to the effects of four main factors: the nature of the claims being made by the movement; the prevailing political opportunity structure; the shared understandings of the participants; and the social structure from which members are drawn (Tilly, 1993: 19). This is an appealing approach because in terms of this research it explains how factors such as the continuing focus of many disabled people upon structural issues and the lack of a shared identity amongst all members of the disability movement, shape the nature of the movement. This approach also avoids the old/new distinction that may not be entirely justified or productive.

Tilly's approach therefore avoids the underlying implication within Blumer's work: that the ultimate goal of a social movement should be to become homogenous. According to Tilly's schema it would, therefore, be entirely possible for a movement to be comprised of both separatist and non-separatist factions, factions based upon differing ideological beliefs and factions based upon the addition of further factors of inequality. Such divisions, according to Tilly's schema, do not necessarily bring into doubt the existence of a movement, but do alter its structure. Thus, to understand the disability movement in the light of Tilly's theorising, it is vital to acknowledge divisions and differences of opinion within the movement, for example between the ‘separatist’ and ‘non-separatist factions’, for such divisions will affect the nature of the movement. A problem arises in relation to this approach however, for if a social movement is significantly divided in terms of its constituent groups and thus has mobilizing difficulties, then how is it possible to state categorically that it is a social movement as opposed to a political coalition or a loosely structured protest event? Whilst this question is answered in part by using the very loose definition of a social movement employed at the outset of this research and described previously, it is argued here that Della Porta and Diani provide the most convincing answer to this question:

The aspect that enables us to discriminate is the presence of a vision of the world and a collective identity that permit participants in various protest events to place their action in a wider perspective. In order to be able to speak of social movements it is necessary that single episodes are perceived as components of a longer-lasting action, rather than discrete events; and that those who are engaged feel linked by ties of solidarity and of ideal communion with protagonists of other analogous mobilizations.’ (1999: 19)

This is a useful quote because it explains how despite the apparently heterogeneous nature of the disability movement, it can still be categorised as a social movement. Firstly, whilst the evidence from this research suggests that it is important to treat with caution the idea that a collective identity based upon a positive ‘disability identity’ exists throughout the disability movement, this is not necessarily the type of collective identity implied by Della Porta and Diani. It is the argument here that according to this approach the existence of such a collective identity may amount simply to the acknowledgement by constituent members that they have been labelled as being the same, in some way. In the case of the findings of this research, the collective identity may, therefore, be the experience of the label of ‘disability’. More importantly, despite the heterogeneous nature of the disability movement, it is still possible to see that constituent members share an overall vision of the world as ‘disabling’. This may be one of the only views behind which all respondents in this research would unite, but it is of fundamental importance to the disability movement. Thus, whilst the evidence from this research suggests that total agreement does not exist amongst the various factions of the movement, an overall solidarity does nevertheless exist.

Despite the appeal of some aspects of these theories, however, in particular of their explanations for both ‘how’ and ‘when’ social movements can be seen to exist and mobilize, they still do not provide an adequate explanation for ‘why’ movements such as the disability movement come into being in the first place. In the light of this problem, it is proposed here that a new theory of social movements is needed that whilst building upon some aspects of older traditions, focuses in particular upon this ‘why’ aspect of movements. As has already been discussed, in the light of this research, the second phase European theorists’ focus upon culture and identity as the being at the heart of the campaigns of ‘new’ social movements does not adequately explain the activities and aims of the disability movement and, therefore, arguably of all contemporary social movements. This aspect of the approach is, therefore, unlikely to provide the best starting point for new theorising.

This having been stated, there are some strands of thinking within the second phase European approach that may prove to be more fruitful. Both Habermas (1981) and Melucci (1993) write that the important role of social movements is to prevent the system from closing in upon itself and in Melucci's view to expose the ‘shadowy zones of invisible power’ (1993: 190). Both theorists are, therefore, calling for a more radical sense of democracy and engagement. Although Melucci is probably the chief proponent of this approach to social movement theorizing, what is often termed the Reactive/ Defensive Model can also be seen in the work of Foweraker (1995). Foweraker (1995) echoes much of the work of Melucci when he states that ‘new’ social movements are the result of major changes in society, changes in particular to the boundary conditions of the social system. Reflecting Melucci's theorizing on the ‘shadowy zones of invisible power’ (1993: 190), Foweraker draws upon the work of Foucault (1979) when he comments that ‘new’ social movements challenge the ‘microphysics of power’. Thus, the role of these movements becomes one of reaction to negative aspects of these changes in the social system and to the ‘microphysics of power’, in defence of the position of the group. Whilst, as the work of Bourdieu (1987) has demonstrated, care must always be taken when using the term ‘group’, Foweraker's overall conclusion, that ‘old’ or ‘new’, in the end the central focus of all social movements is therefore citizenship, is nevertheless an important contribution to this debate.

Here it is interesting to highlight the link between the reactive/defensive model and notions of ‘engagement’ put forward by Ellison (2000), for both approaches consider understanding ‘citizenship’ to be at the heart of understanding contemporary social movements. Ellison argues that is it important to understand not only the process of engagement, but also the kind of rights that are in need of ‘defence’ or are being ‘proactively’ sought. He thus seeks to combine a more convincing reflexive account of contemporary citizenship with an understanding of current forms of protest and social movements and in this respect his ideas represent an important development in this field.

Ellison proposes that citizenship is now best understood as a process of defensive and/or proactive engagement in the context of a society characterised by increasingly complex social and political identities:

The argument here is that rapid change transforms the nature of citizen participation and ‘encourages’ engagement, willing or not, in the pursuit, or defence, of particular interests and/or social rights. In short, both the capacity to engage, and the differential nature of engagement itself, are rapidly becoming the most significant features of a citizenship conceived as a series of fractured ‘contiguous belongings’ (…) (Ellison, 2000: para. 1.1)

Ellison's definition of defensive engagement is particularly useful when considering the disability movement because he defines it as being the activity of ‘those lacking access to relevant power networks who find themselves engaged in efforts – perhaps to maintain a status quo, or to develop new arrangements –simply to preserve existing interests and entitlements.’ (2000: para. 1.4) In other words, if the context in which a group engages is one in which power is concentrated in the hand of the ‘opponent’, then the group may only be able to engage defensively. In terms of understanding social movements this is a useful model because it explains why the collective action of some disempowered groups, such as disabled people, may appear to be more concerned with protecting and enhancing existing rights than with claiming ‘new’ rights. ‘Defensive engagement’ is thus a useful way of explaining the findings of this research which suggest that many disabled people are more concerned about achieving real equal treatment in spheres where they are already ‘officially’ equal (for example in relation to equal opportunities legislation in employment), than they are about claiming ‘new’ rights on the basis of ‘identity politics’.

The most interesting aspect of Ellison's approach, however, is that he questions the extent to which, ultimately, defensive forms of engagement that are ‘likely to be organised around social divisions already shaped by existing discourses’ enable true agency (2000: para. 7.3). In defending particular sets of interests a group may utilise identities as a way of appealing to a supposedly pre-existing sense of solidarity. Quite apart from the problems associated with whether or not such identities are true representations of solidarities, Ellison states that this approach does not give the same scope for agency that more pro-active engagement might provide. A more genuinely pro-active approach could move beyond existing discourses such as disabled/non-disabled and allow instead for the challenging of ‘established assumptions about social divisions’ (Ellison, 2000: para. 7.3). New and differently conceived solidarities might then emerge.

Having stated that Ellison considers proactive engagement to have greater potential for agency than defensive engagement, this is not to say that he is overtly proposing that proactive engagement is the preferable form of engagement. Indeed, he states clearly that it is the hallmark of contemporary citizenship that individuals are able to engage defensively and/or proactively and that the two forms of engagement are not mutually exclusive. It is proposed here that it might, in fact, be necessary to go one step further than Ellison and suggest that proactive engagement is likely to bring about the best long term results for disadvantaged groups since it is about transforming rather than working within existing social relations and in so doing is more likely to be able to tackle the assumptions that may be underpinning social exclusion. Further, the argument here is that the very act of defensive engagement only becomes necessary in the absence of previously successful proactive engagement. In other words, defensive engagement becomes necessary when disadvantaged groups have been excluded from decision-making processes and have thus been unable to influence the development of structures or policies that impact upon them. The hallmark of contemporary citizenship then becomes the ability to engage proactively and without the need to engage defensively. Whilst this idea may be slightly at odds with Ellison's theorising, it nevertheless remains true to his understanding of citizenship as a process. Thus, whilst it is important to note that Ellison's approach clearly represents a new development in terms of our understanding of citizenship, by defining citizenship as a process of engagement, it is also a vital new development in terms of social movement theorising.

To conclude, applying this theorising to the disability movement, it is the argument here that the movement may be best understood as being involved in a process of defensive engagement and that as part of this process it often references a notion of a positive ‘disability identity’ that reflects the views of, and is being maintained by, the dominant voices in the movement – in some contrast to the wishes of a number of other members. Further, it is proposed here that this type of engagement is unlikely to produce the levels of solidarity and agency that could be generated through more proactive engagement. For the disability movement, this proactive engagement might involve challenging a number of key assumptions about disabled people, especially the notion that there is something fundamentally different about disabled people, and bringing into focus the reality of vulnerability across the life-course for all individuals. Of course, for the disability movement to engage proactively, important shifts of power will have to take place within society more generally and this is why, despite the argument made at the start of this article in favour of a more embodied understanding of disability, this article does not argue for the abandonment of the Social Model of Disability. This model's powerful articulation of the disabling practices at work in society provides an important basis from which to challenge and overcome those practices.