Ξ  

 

 SOBRE A DEFICIÊNCIA VISUAL

Siga este site no Facebook.     Siga este site no Twitter    Envie um email à Webmaster do Site

Disability, Identity and Difference

Tom Shakespeare

Manifestação de protesto contra a proibição do comércio ambulante na Cidade do México - Marco Antonio Cruz, 1993
Young blind man takes part in a demonstration against a ban on street commerce in Mexico City - Marco Antonio Cruz, 1993

 

INTRODUCTION

Within social theory, questions of disability identity bridge key contemporary debates, including the structure/ agency problem and the biology/ society dualism. It is my purpose to survey some of these issues and try to chart a way through these dichotomies. Identity is a complex field, and social psychologists, sociologists, political scientists, cultural critics and philosophers all use the word variously and in different contexts. Furthermore, the demands of a political movement and the development of social theory may run in contradictory directions - one pragmatic and instrumental, the other more concerned with complexity and nuance. Disability Studies prioritises faithfulness to lived experience, certainly, but also internal coherence and theoretical adequacy.

Initially, I want to foreground two specific uses of identity which illustrate a significant tension in the disability debate. First, we can talk about identifying as an active verb, as much as to say uncovering disabled people or discovering disabled people. Second, we can use identity in a reflexive sense, in terms of identifying oneself, which is about staking a claim to membership of a collective or a wider group. Michel Foucault talks about these differences in the concept of identity. He suggests we are made into subjects from above, through surveillance and control operating through the state, through schools and other agencies, and we make ourselves into subjects from below, where he mainly talks about the processes of confession and communication, people `speaking the truth about themselves'. I think this distinction is also what he meant, from personal experience, when he argued `one should not be a homosexual, but one who clings passionately to the idea of being gay' (quoted by Kritzman, 1988, xxiii).

This paper seeks to contextualise the social model within wider models of disability, and to look at the identity options for disabled people. Parallels are drawn with the experiences of women, lesbians and gays, and black people, and post-structuralist concepts are used to problematise the issue of identity.

I suggest that recent political developments offer disabled people new opportunities in how they identify. A useful metaphor is that of story telling: identity is an aspect of the stories we tell to ourselves, and to others. Sociology itself could be conceived in terms of form of story-telling. For example, Ken Plummer's recent work uses the concept of story to explore the way that people understand and represent their sexual experiences - for example, as lesbians and gays `coming out' (Plummer, 1995). I suggest that similar processes in self-understanding are going on in the field of disability identity. Previously there was a limited range of narrative devices and themes available to people with impairment: now, new stories are being told, and we are creating ourselves for ourselves, rather than relying on the traditional narratives of biomedical intervention or rehabilitation, of misery, decline and death. Doing it for ourselves, perhaps we can reconcile tensions and produce alternative, happier endings.


IDENTIFYING DISABLED PEOPLE

Let me distinguish two main approaches to identifying disabled people as a group, one based in a physical or medical understanding, the other based in a socio-cultural understanding: this may be simplistic, but I find the distinction useful for heuristic purposes. I will then go on to subdivide the social identifications further.

The first approach conceives of disability as the outcome of impairment: it is a form of biological determinism, because it focuses on physical difference. Disabled people are defined as that group of people whose bodies do not work; or look different or act differently; or who cannot do productive work. The key elements of this analysis are performing and conforming: both raise the question of normality, because this approach assumes a certain standard from which disabled people deviate.

Often, this approach does not identify `the disabled' as such, but focuses on particular groups of people with impairment - for example `the blind' or `epileptics'. Here we see a denial of the common social experiences which unite disabled people, and a focus on medical dimensions of difference. It is as if we did not speak of Black British people, but instead highlighted Bangladeshi, Jamaican, Guyanese or Sri Lankan people in Britain. Obviously, there are times when ethnic origin is important, but there is a danger of overlooking the unities in the experience of Black British people, and also of essentialising difference.

A wider problem, which is revealed in the confusions of quantitative social research such as the 1988 OPCS Disability Surveys, or exhaustive categorisations such as the International Classification of Impairments, Disabilities and Handicaps, is that everyone is impaired (Sutherland, 1981). We are dealing with an aspect of the human condition, not with the attribute of a specific and identifiable minority. There are differences of degree, although it proves contentious to draw a line, but these are not qualitative differences. If everyone is impaired, we face difficulties if we seek to identify disabled people on the basis that they experience particular physical deficits not shared by the majority population. For example, recent Human Genome research has highlighted the fact that everyone carries four or five recessive genes which would cause genetic disease in an offspring, if the other parent was also a carrier.

Furthermore, I believe that a situation where disabled people are defined by their physicality can only be sustained in a situation where non-disabled people have denied their own physicality (Shakespeare, 1994). If everyone is impaired, then we should look at the ways in which a specific group in society, namely non-disabled people, ignore their experience of impairment and physical limitation. Perhaps the maintenance of a non-disabled identity in the context of physical limitation is a more useful problem with which to be concerned: rather than interrogating the other, let us rather deconstruct the normality-which-is-to-be-assumed. This way of thinking about identity has recently been usefully explored in the context of HIV/AIDS (Crawford, 1994).

Moving on to the second approach, disability has been conceived as an outcome of social processes or as a constructed or created category. The social model concept, arising from the social movement of disabled people, and developed by Disability Studies sociologists is the classic example. But one of the points of the current paper is to suggest that while this materialist approach is one route to the social identification of disabled people, there are other fruitful options.

Let me highlight five options for identifying disability as a social process:

1. The social model, which focuses on the disability as a relationship between people with impairment and a discriminatory society: disability is defined as the outcome of disabling barriers imposed by environmental or policy interventions. It suggests a strategy of barrier removal, or education to remove prejudice, with the goal of inclusion. Disabled people, in this approach, do not want anything extra, but wish to be treated the same as non-disabled people. In the social model, there is nothing to distinguish people with impairment who are socially disabled, from people with dependent children who are socially disabled. A whole range of people may in fact be disabled by barriers or prejudices.

2. The minority group approach, in which disabled people are an oppressed group. This is a weaker claim than the social model, focusing on power politics and identity politics, while not necessarily problematising disability itself. It could be associated with North American disability movement approaches, and has a general resonance within self-organised disability politics. That is, it often co-exists with the first option, although I will argue that there are tensions between a focus on removing disabling barriers, and opposing the oppression of disabled people as a minority group. For example, a minority group approach may advocate special measures, or a comprehensive disability income, or a bigger share of social resources. In a pioneering, if ultimately unsatisfactory analysis, Helen Liggett has highlighted the dangers of a minority group approach which reinforces the constitution of disability (Liggett, 1988, p. 271).

3. A Weberian or Foucauldian approach in which disability is a category of social policy. This is epitomised by the work of Deborah Stone (Stone, 1985). A parallel could be drawn with Mary McIntosh's work locating the creation of a homosexual role (McIntosh, 1968): in the same way, we could look at how the development of industrial capitalism in the nineteenth century, through the 1834 Poor Law Amendment Act, set up a distinction between the deserving and the undeserving poor which has influenced social policy up to the present day and led to the identification of the disability category. As with other approaches, this shifts the attention from the person with impairment to the statutory or policy processes which construct him/ her as officially disabled. Robert Scott's work, from a labelling perspective, could usefully be included under this heading (Scott, 1969).

4. Disability as the outcome of definitions inherent in social research methods, for example in the OPCS Disability Surveys. The work of Abberley (1992) and others shows how survey instruments construct a category fairly arbitrarily, resulting in the idea that there are approximately six million disabled people in Britain. Methodological criticism of the type advanced by Kitsuse and Cicourel (1963), or by Hindess (1973), illustrates the weaknesses of such empiricism.

5. Disability as a cultural category. This approach, drawing upon the notion of cultural representation, has precedents in the work of Sontag (1991), and is also related to Foucault's concept of discursive formations. Elsewhere I have looked at this in terms of prejudice, focusing on stereotypes, language and the creation of meaning. Using the notion of otherness, I suggested that the processes of denial and projection are involved in the cultural construction of disability (Shakespeare, 1994).

By offering a range of ways of understanding disability as a social construction, I do not thereby intend to abandon the social model's stress on material, environmental and policy factors. But rather than reducing the category `disability' to a straightforward social relation, I think an analysis of discursive practices offers a richer and more complex picture of disability. It is in this sense, rather than the narrow phenomenological sense, that I would say disability is socially constructed, and would highlight the benefits of a Foucauldian analysis, regarding disability as a process of subjection.

Ian Hacking has developed an interesting account of what he calls `making up people' which draws upon McIntosh's `homosexual role hypothesis' and has relevance to my argument here. Thus he describes as `dynamic nominalism' the suggestion that: `numerous kinds of human beings and human acts come into being hand in hand with our invention of the categories labelling them' (Hacking, 1986, p. 236).

This casts light on the various forms of social construction of disability outlined above. To me, this also indicates that we would be right to see recent disability politics as opening up new narrative possibilities for individual identity, which may have been unavailable before. As Hacking argues: `Making up people changes the space of possibilities for personhood' (Hacking, 1986, p. 229).

Below I will consider some of these developments.


DISABLED PEOPLE IDENTIFYING

Medical approaches consider negative self identity to be an outcome of physical impairment, and focus on the need for adjustment, mourning, and coming to terms with loss. Social approaches view negative self-identity as a result of the experience of oppressive social relations, and focus attention on the possibilities for changing society, empowering disabled people, and promoting a different self-understanding.

A particularly useful metaphor for understanding both approaches is provided by the concept of identity as narrative, which focuses on the stories we tell about ourselves and our lives, and constructs accounts which encompass plot, causality and conflict. This offers the potential for a nuanced model of identity which resists the temptation straightforwardly to read off identity from context, or indeed embodiment. Giddens summarises this approach to self-identity: `Self-identity is not a distinctive trait, or even a collection of traits, possessed by the individual. It is the self as reflexively understood by the person in terms of her or his biography' (Giddens, 1991, p.53).

Identity therefore connects the social and the personal and involves the individual putting themselves in a collective context. `A person's identity is not to be found in behaviour nor - important though this is - in the reaction of others, but in the capacity to keep a particular narrative going' (Giddens, 1991, p.54).

Jeffrey Weeks has suggested, in the context of gay liberation, that the concept of identity is like finding a map to explore a new country (Weeks, 1977). Both these metaphors connect with the idea of representation, of giving meaning, or of charting a way through, spatially or temporally. They also highlight the importance of identity for political developments: positive identity narratives are reinforced by self-organisation, and are a condition for it.

The experience of disability as a negative identity arises out of a process of socialisation, or in the context of social relations, in which impairment is the sole focus of analysis. Grief and loss are turned inwards, and suffering focuses on the self. In the absence of other socially sanctioned identities, the professional cripple role enables successful interaction with professionals, offering the benefits of sympathy and concern on the part of others. It could be conceived in terms of a tendency to `blame the victim', to convert public issues in personal woes. As an individualised experience, the structural and cultural context is not challenged, and alternatives to the dominant biomedical paradigm are not available. Difference is either fetishised, as medical tragedy, or ignored. Assimilation is the name of the game.

The person with impairment may have an investment in their own incapacity, because it can become the rationale for their own failure. The legitimation accorded them by non-disabled people is predicated on accepting responsibility for their own incapacity, and not challenging the dominant order. Indeed, they may become token examples of the tragedy of disability, involved in consultations or wheeled out to highlight the problems.

Alternatively, various forms of denial may be involved, where a person claims to be `really normal' and tries to minimise the importance of impairment in their lives, perhaps by concealment: in Goffman's (1968) terms, they may pass as normal. As he highlighted, this involves considerable tensions and difficulties of managing information or interaction. Other similar strategies may include religious identification with suffering - a resignation to fate or the will of God. Such quietist acceptance involves enduring the difficulties of impairment, possible in the expectation of heavenly compensation. Finally, another form of denial seeks to `overcome' impairment. Often a strategy associated with masculine expectations, it involves a refusal to submit to reality, and an attempt to regain a normal identity through superhuman activity and endurance, for example in the case of many sporting activities.

While these various alternatives all demonstrate the use of narratives of self, I would argue that none are psychologically or socially healthy or progressive. They all involve an element of denial or failure to come to terms: they all involve a significant element of external definition, of accepting external disempowering agendas. A temporary or compromise identity may be developed, but it is frail, and ultimately has costs for personal psychological happiness and security. By focusing on the body and the individual, the disabled person is trapped in a prison not of their own devising, and cannot escape except through strategies which are ultimately self-defeating.

Disability as a positive identity is a process, to use Foucauldian language, where subjection opens up the possibility of subjectification: `From popular culture to government policy, society has evidently assigned you a membership. Identity politics turns necessity to virtue' (Girlin, 1994, p.153).

This alternative to the negative identification with impairment is provided by those who resist the negative implications of the medical model and develop a response which focuses on the exclusion and injustice which characterises disability. This shift often takes the form of replacing one analytical framework (the `medical model') with another (the `social model') to lead to a more positive identity, often described as `coming out'. This `coming out' is the process of positive self-identification, rejecting the categorisation of subjection, and affirming subjectivity and collective power. It is about developing new definitions and new political forms. Frances Hasler (1993) describes it as the `big idea' which underpinned the self-organised disabled people's movement in Britain.

While this can be a private and individual development or personal awakening, it is more likely to take place in a collective context: self-organisation itself prompts the process of identification. Even segregated institutions, such as the Le Court Cheshire home where Paul Hunt lived, can enable disabled activists to foster a response to exclusion (Hunt, 1966). Jeffrey Weeks focuses on this feeling of shared identity:

`Identity is about belonging, about what you have in common with some other people and what differentiates you from others. At its most basic, it gives you a sense of personal location, the stable core to your individuality' (Weeks, 1990, p. 88).

Elsewhere I have discussed the relationship between self-organisation and the development of disability as a political identity, and developed comparisons with the women's movement and the civil rights movement (Shakespeare, 1993). Critically, both self-organisation and direct action are processes with implications for identity, as well as instrumental goals: to quote a social theorist,

`The actors mobilise to regain control of their own action. They try to reclaim the right to define themselves against the criteria of identification determined by an anonymous power and systems of regulation that penetrate the area of "internal nature" ' (Melucci, 1989, p.61).

The disability movement provides the collective context for political identification; it involves processes which challenge views of disabled people as incapable, powerless and passive; and it establishes disabled people as the experts on disability and disabled people's definitions as the most appropriate approaches to disability, rather than the traditional domination of professionals.

`The move towards self-organisation has prompted increasing numbers of disabled people to adopt a shared political identity which in turn has helped to build a new mood of confidence. Disabled people no longer ask for change, but demand it. They are prepared to use a whole range of tactics in pursuit of their demands, including direct action and civil disobedience' (Bynoe, Barnes and Oliver, 1991, p. 12).

Alongside political activism, cultural forms of self-provision, otherwise known as disability arts, develop a sense of shared cultural identity which is central to these processes:

`Disability arts also provides a context in which disabled people can get together, enjoy themselves and think in some way about issues of common concern. But it goes deeper than that, as disability culture really does offer people a key to the basic process of identifying as a disabled person, because culture and identity are closely linked concepts. Simply naming the idea I think has encouraged a lot of disabled people to happily call themselves so and to be more up front and confident about themselves and that is also giving more confidence to the movement as a whole' (Sian Vasey, quoted in Lees, ed., 1992, p. 13).

Challenging stereotypes, building solidarity, recounting new stories, are all about developing a disability culture. These processes are also about new options for disability identity:

`To encourage the growth of a disability culture is no less than to begin the radical task of transforming ourselves from passive and dependent beings into active and creative agents for social change' (Morrison and Finkelstein, in Lees, ed., 1992, p.22).

I hope it has been demonstrated that the three aspects of disability identity -political, cultural and personal - are linked. By offering potential for subjectivity, for a changed self-understanding and an increased sense of personal power, self-organisation offers a way out of the traps of negative identification. From self-blame, one is enabled to blame exclusionary social processes; rather than explaining one's situation in terms of personal failure, one can justify one's identity on the basis of discrimination and prejudice. This is about embracing identity and coming to terms with one's political status in the world. What is more, it is about opening up the possibility of changing one's world.

Although I have implied that the process of positive identification is straightforward and simple, I would argue it is difficult and complex. Below, I will highlight particular issues, but here I want to suggest that positive identification should be seen as a project, rather than a once-for-all definition or event, a project based on self-recognition and recognition by others. Calhoun argues that the politics of personal identity and the politics of collective identity are inextricably linked:

`Identities are often personal and political projects in which we participate, empowered to a greater or lesser extent by resources of experience and ability, culture and social organisation' (Calhoun, 1990, p. 28).

Sometimes a focus on political campaigning and political change can mask an equally urgent need to work on psychological obstacles to feeling empowered and effective. Surviving oppression can leave a legacy of distress and difficulty, and those who appear most strident and strong in the political arena can carry a burden of self-hatred and internalised oppression which makes psycho-social fulfilment precarious and problematic. There is a parallel with the arguments of the French psychoanalytical feminist group Psych et Po, who referred to the futility of activism without awareness of internal conflict as the danger of the `phallus inside one's head' (Duchen, 1987, p.47ff). While Disability Studies has presented a dichotomy between the medical model and the social model, few have raised the issue of individual psychology: I would suggest that both object relations and psychoanalytical approaches offer potential benefits for those exploring disabled people's experiences, and that such analyses are long overdue.


IDENTITY PROBLEMS

Rather than propose a simple and triumphalist model of identity formation, I want to suggest there are major obstacles to developing a positive and strong disabled identity. It would not be accurate to trace a neat trajectory between being constructed as a category of otherness, and then being able to use this as a source of strength. There is nothing inevitable or determined about the process, and there are major difficulties with successfully and positively identifying as disabled. As Weeks says in the context of sexuality:

`Oppression does not produce an automatic response, but it does provide the conditions with which the oppressed can begin to develop their own consciousness and identity' (Weeks, 1977, p.33).

First, disabled people are socialised to think of ourselves as inferior. Within dominant discourses of subjection, as I have outlined earlier, strong messages of physical difference and personal deficit are reinforced:

`The messages we receive are very strong and clear and we have little access to different values which may place a more positive value on our bodies, ourselves and our lives. Our self image is thus dominated by the non-disabled world's reaction to us' (Morris, 1991, p.28).

People are socialised into thinking of disability in a medical model way. We can view this as internalised oppression. Paolo Freire analyses this:

`Self-depreciation is another characteristic of the oppressed, which derives from their internalisation of the opinion the oppressors hold of them. So often do they hear that they are good for nothing, know nothing, and are incapable of learning anything - that they are sick, lazy and unproductive - that in the end they become convinced of their own unfitness' (Freire, 1972, p.38).

In the case of disabled people, this is reinforced by segregated education, negative images, cultural representation, absence of positive role models, social treatment of disabled people. It parallels the experience of women in patriarchal societies. We could develop a distinction between people born with impairment, who have no alternative to viewing themselves as deficient, and people becoming impaired, who have to relinquish a non-disabled identity and accept an identity as other. Similarly, ` "Becoming a homosexual"; is a difficult process of "becoming the other"; or "becoming what one has learned to despise"; As such it is an individual and privatised process, the "intolerable reality", being a confrontation with oneself rather than being an open struggle with an easily located oppressor' (Gay Left Collective, 1980, p.80).

Coming out is difficult and precarious for both groups. Second, disabled people are isolated and separated from one another, and from sources of collective support and strength.

`One of the most important features of our experience of prejudice is that we generally experience it as isolated individuals. Many of us spend most of our lives in the company of non-disabled people, whether in our families, with friends, in the workplace, at school and so on. Most of the people we have dealings with, including our most intimate relationships, are not like us. It is therefore very difficult for us to recognise and challenge the values and judgements that are applied to us and our lives. Our ideas about disability and about ourselves are generally formed by those who are not disabled' (Morris, 1991, p.37).

While women and black people can expect support role-models from within the family and community, disabled people are likely to grow up in families where there are not other disabled people, and where there is a parental burden of guilt and shame. This highlights a difference between disability, and race and gender, disability is more like sexuality, in the sense of familial isolation, and the need to come out and reject the burden of difference. No discussion of the obstacles to identifying as disabled would be complete if it did not raise questions about the different resources, narratives and possibilities available to different groups of disabled people, whether based on age, impairment or other social distinctions. At this stage I will turn to some of these questions.

Having presented a fairly schematic model of disability identity, I want to focus on tensions and difficulties in the concept. Some of this lies in the division between the needs of a social movement, which often deals in simple dichotomies, and produces polemical arguments, and an academic approach, which has a responsibility to be rigorous, which is more focused on nuance and contradiction, and which, in the current era especially, often justifies its existence in terms of deconstruction and elaboration. However, I think the issues I will highlight all have major political connections, and are not merely problems of theory or the ivory tower. What is more they are linked, and they link disability identity into wider social theoretical debates with which disabled people, and Disability Studies in particular, have to engage.

Jenny Morris, and other disabled feminists have highlighted difficulties in reconciling the reality of impairment and the lived experience of disability with the sometimes social reductionist social model. Given the other debates consecutive with this paper, I will not engage deeply with these issues. But certainly, the fact that people with impairments associated with ageing are not fully represented within the disability movement points to an issue of identity and identification. For example, looking at Jenny Morris's two most recent books on disability, the interviewees are all under the age of sixty, while the majority of disabled people are over the age of sixty. Some impairments - the congenital impairments for example, or those associated with accident or with early onset - are more likely than others to lead to individual identifying collectively and socially as disabled.

Traditional approaches to disability, highlighted above, could be considered to be essentialist. Differences, biological and sometimes psychological, separate disabled people from non-disabled people. Social approaches counter this essentialism by demonstrating how it is exclusionary policies, environmental barriers and a process of social oppression which create the category of disability. This is a social constructionist analysis. For example, it is suggested that the experience of disability varies at different times and in different cultural contexts. Political strategies focus on barrier removal. But between and within this dichotomy of essentialism and social constructionism there are debates which have been explored by feminists and queer theorists, and still await Disability Studies.

For example, despite the seeming social constructionism, there is an inherent essentialism within disability politics, and indeed in the idea of disability identity. The celebration of disability pride is the celebration of difference, and the acceptance of difference: it is about subverting negative valuation and reclaiming disability. Nietzsche suggests:

`A species comes to be, at type becomes fixed, in the long fight against essentially constant adverse conditions' (Nietzsche, 1990, p.199).

This means that what does not kill you, makes you strong. It also means, accepting a category created by others, revelling in abnormality, celebrating the margins. While the social model is social constructionist, the social oppression model can slide into essentialism. While the disability movement seeks inclusion and integration, it also celebrates difference. The margins are a good place to speak from, and there is a cost to coming into the mainstream. But celebrating and identifying in difference can be risky - for example, recuperating the term `cripple': `The dangerous intimacy between subjectification and subjection needs careful calibration' (Riley, 1988, p.17).

The work of Helen Liggett (1988) shows the risks of reinforcing the categorisation of disabled people as a separate group. I think there is a tension in the essentialism within the disability movement and disability studies, and it is one that parallels difficulties experienced within other identity politics: for example, problems for gay and lesbian and feminist theory and politics. Todd Girlin suggests:

`For all the talk about the social construction of knowledge, identity politics de facto seems to slide towards the premise that social groups have essential identities' (Girlin, 1994, p.153]. This may be an example of the opposed priorities of theory and practice. As I have suggested, theoretical sophistication may not be appropriate to the needs of social movements:

`Post-structuralism's attack on essentialism and the "decentering of the subject" came into conflict with thinking and practice rooted in the standpoint of women or the experience of gays' (Calhoun, 1990, p.15).

In practice, social constructionism may not be as politically effective as essentialism, due to a lack of rhetorical power. Some have asked why they should deconstruct their own identities when the oppressors identities are still so strong, and questioned what social constructionism can offer them: `Social constructionism was an ambiguous ally in the attempt to oppose the devaluing of various identities' (Calhoun, 1990, p.16).

There are also contradictions internal to the political strategies, for example with the clash between the social model and the minority group notions of disability. While they are often conflated, I would argue that there are differences, and looking at the difference between British and international disability politics indicates some of these. There are in fact two, contradictory goals of disability politics: firstly, demolish the processes which disable; second defend disabled people. Carol Vance (1989) suggests that the lesbian and gay movement faces a parallel dilemma. Lesbian and gay historians have attempted to trace a history of lesbian and gay people, while social constructionist theorists have shown that there is no continuity, and that same sex activity has different meanings in different times and places. As historians begin to reconstruct the disability experience, I believe they will face similar difficulties. It is only in the late twentieth century that gayness, or disability, have been celebrated with pride.

Denise Riley has taken a similar approach to the history of the category `woman', seemingly an essential identity, but in fact just as socially constructed as sexuality. It is a problem for feminist politics which she confronts, not just for historians: from a post-structuralist perspective, she does not have much faith in the coherence of identities:

`The impermanence of collective identities in general is a pressing problem for any emancipatory movement which launches itself on the appeal to solidarity, to the common cause of a new group being, or an ignored group identity' (Riley, 1988, p. 16).

Another example of the way these debates are relevant to disability is the debate about the role of identity after the dissolution of disabling barriers. If there are benefits to disability identity, if it is a source of strength and pride, will it persist in the utopian world where there are not barriers or oppressive processes? Is there a difference beyond oppression? Is there something about having an impairment, as opposed to being disabled, which will persist and will unite disabled people? There may be major differences here between disability, and race/ gender/ sexuality.

Crude dichotomies between social constructionism and essentialism are perhaps not particularly helpful, as Diana Fuss (1989) argues. Social constructionism can itself be quite determinist and fixed. At other times, in the rejection of biological thinking as essentialist, it can become idealist and totally decentred. Judith Butler (1990) has explored the essentialism inherent in social constructionist positions in gender, and the danger of reifying the subject. While feminists have attacked Foucault for seemingly writing out the possibilities of resistance, she develops a complex analysis which nevertheless offers some benefits to those exploring identity politics. For her, the subject is discursively constituted, but agency is possible. She describes identities as self-representations, as "fictions" that are neither fixed not stable. For example, in her view, gender centres on performativity, and she is especially interested in the marginal and transgressive actors who create themselves. Personally, I find Butler's work opaque and difficult, but I am certain it could be useful in developing beyond some of the paradoxes of disability identity (Sawicki, 1994, is a good starting point for these debates).

Let me now consider more closely this issue of difference. One of the dangers of the essentialism highlighted above, is that it provides a simplistic reductionism, an `us and them' approach. While this is comforting and secure, it offers risks. As an example, I would suggest an article by disability activist Alan Holdsworth, in which he developed a polemic about allies and oppressors, dividing the non-disabled world into professional oppressors, liberal oppressors and allies (Holdsworth, 1993). In my view, this was unhelpful, because it reduced political agency and identity to a unilinear choice. Disabled people, by virtue of having experienced disablement, were good, and non-disabled people could only be counted as good in very specific circumstances. Now, as I have tried to outline above, it is clear that many people with impairment do not identify as disabled. Some have even been viewed as traitors to the disability community, as selling out, as tokens. For example, Bert Massie, director of RADAR, faces much opposition. So clearly not all disabled people are allies.

However, my main problem with the analysis was that it ignored the multiple identities and identity choices which people make in practice. For example, there is a danger of ignoring the fact that disabled people are also men and women, straight and gay, and come from various ethnic groups. Just as white feminists were accused by black women of ignoring the specificities of black women's experience, and even of being racist, so disabled people risk ignoring difference. It may be that black disabled people sometimes have more in common with black people than with disabled people. Sometimes the values of the disability movement - for example, autonomy, independence, choices and rights - may in fact be specifically white, western values. Perhaps an eastern or Islamic approach would want to stress family, and solidarity, and mutuality rather than what sometimes seems a very individualistic model of liberation.

Class is a particularly powerful determinant of the disability experience. It qualifies and changes the consequences of impairment, and reduces the exposure to oppressive social relations. My class and gender are better predictors of my career pattern and income than my impairment. Other people with achondroplasia would experience their disablement very differently, for example, if they had the educational opportunities which were presented to me. Often in identity politics the issue of class is obscured: both the women's movement and the gay movement have faced criticism for being too middle-class dominated, too concerned with middle-class experiences, not sufficiently attuned to the problems of poverty and exclusion. While I am not arguing that this is necessarily true of the disability movement as a whole, it is true of some in the disability movement.

Now, this is not to deny that disability is a very powerful identity, and one that has the potential to transcend other identities. I think very often it is a master/ mistress status. For example, it has the power to de-sex people, so that people are viewed as disabled, not as men or women, straight or gay. Also, I am aware that, for example, the disability movement is more open to lesbian and gay disabled people than the lesbian and gay community is open to disabled people (Shakespeare, forthcoming). But having said that, I still think it is dangerous to overlook multiple identities, and to assume that disability is the sole and significant identity.

For example, it may be necessary to move away from the unitary, essentialist disability identity and think of a variety of disability identities. Just as feminists suggested that being a black woman should not be conceived of additively, but was qualitatively a different and separate thing, so it may be for black disabled people. As Ossie Stuart suggests:

`The oppression that black disabled people endure is... unique... it is necessary to construct a distinct and separate black disabled identity' (Stuart, 1992, p. 94).

Thus he rejects the notion of double oppression, and instead talks of simultaneous oppression, something qualitatively different. Mark Priestley's excellent research with blind Asian people in Leeds has reinforced the need for such developments (Priestley, 1995).

Post-structuralist approaches to identity have built on this notion of difference, and the rejection of essentialism. They suggest we need a more complex, more contingent and more subtle understanding of the workings of power. Additionally, and vitally, we must be able to have `simultaneously an account of radical historical contingency for all knowledge claims and knowing subjects' and `a no-nonsense commitment to faithful accounts of a "real" world' (Haraway, 1988, p.579).

This tightrope act contextualises my own commitment to disabled people's stories. It is for reasons such as these that Disability Studies may find post-structuralist theory useful, although the political demands of the disability movement may not allow space for seemingly irrelevant diversions.


CONCLUSION

Currently, I am engaged in researching the things that disabled people say about their sexual selves. In trying to construct a sexual politics of disability, I am interested in disabled people's ideas of identity - in terms of masculinity or femininity, being straight or gay (Shakespeare, forthcoming). I think that identity politics is both about achieving a better deal for people, but also about establishing the stories people tell about themselves, and having them listened to. A theme of this paper has been the new narratives which disability identity offers people with impairment, and an openness to the varieties, variations and differences which are available. In this sense, the theoretical complexities I have outlined have their correlation in the richness of disabled people's own stories.

Ken Plummer's book draws on literary analysis which suggests there are only five basic narratives to modern stories (Plummer, 1995, p.54). For example: the journey (a progression through stages); enduring suffering; engaging in a contest (a struggle with antagonists); pursuing consummation (achieving a goal of fulfilment); establishing a home (for example, finding a community or identity). I think these five patterns are evidenced in the identity narratives of contemporary disabled people and influence the tales we tell about ourselves. Furthermore, he suggests stories require audiences:

`Stories need communities to be heard, but communities themselves are also built through story tellings. Stories gather people around them: they have to attract audiences, and these audiences may then start to build a common perception, a common language, a commonality' (Plummer, 1995, p.174).

This highlights the vital importance of community and movement to disability identity, and the symbiotic relationship between individual and collective. The
process of political mobilisation, the process of cultural expression, and the process of academic investigation and theorisation are equally vital to that community. Fundamental is the process of listening, which requires openness and respect.

Disability identity is about stories, having the space to tell them, and an audience which will listen. It is also about recognising differences, and isolating the significant attributes and experiences which constitute disability. Some we might choose to change, others to recuperate or celebrate. We may need to develop a nuanced attitude which incorporates ambivalence: towards our bodies, for example. Theory has a part to play in this process. But (metaphorically, if not physiologically), it all starts with having a voice. As Foucault suggests, our task is to speak the truth about ourselves.


REFERENCES

  • ABBERLEY, P. (1992) `Counting us out : a discussion of the OPCS disability surveys', Disability, Handicap and Society, 2, 1, pp 5-21.
  • BUTLER, J. (1990) Gender Trouble, London: Routledge.
  • BYNOE, I., BARNES, C. and OLIVER, M. (1991) Equal rights for Disabled People, London: IPPR.
  • CALHOUN, C. (1990) Social Theory and the Politics of Identity, Cambridge, Massachusetts: Blackwell.
  • CRAWFORD, R. (1994) `The boundaries of the self and the unhealthy other: reflections on health, culture and AIDS', Social Science and Medicine, 38, 10, pp. 1347-1365.
  • DUCHEN, C. (1987) French Connections, London: Hutchinson
  • FRIERE, P. (1972) Pedagogy of the Oppressed, Harmondsworth: Penguin.
  • FUSS, D. (1989) Essentially Speaking, London: Routledge.
  • GAY LEFT COLLECTIVE (1980) Homosexuality: power and politics, London: Allison and Bushy: GIDDENS, A (1991) Modernity and Self-Identity, Cambridge: Polity.
  • GIRLIN, T. (1994) `From universality to difference', in Calhoun, C., (ed.), Social Theory and the Politics of Identity, Cambridge, Massachusetts: Blackwell.
  • GOFFMAN, E. (1968) Stigma, Harmondsworth: Penguin.
  • HACKING, I. (1986) `Making up people' in Helier, T.C. et al, Reconstructing Individualism, Stanford: Stanford University Press, pp. 222-236.
  • HARAWAY, D. (1988) `Situated knowledges: the science question in feminism and the privilege of partial perspective', Feminist Studies, 14, 3, pp. 575-599.
  • HASLER, F. (1993) `Developments in the disabled people's movement', in Swain, J. et al., (eds.) Disabling Barriers, Enabling Environments, London: Sage.
  • HINDESS, B. (1973) The Use of Official Statistics in Sociology, London & Basingstoke: Macmillan.
  • HOLDSWORTH, A. (1993) `Our allies within', Coalition, June, pp. 4-10. HUNT, P. (1966) Stigma, London:Geoffrey Chapman.
  • KITSUSE, J.I. and CICOUREL, A.V. (1963) `A note on the use of official statistics', Social Problems, 11, 2, pp. 131-9.
  • KRITZMANN, L, (ed.) (1988) Politics, Philosophy, Culture, NY and London: Routledge. LEES, S. (ed.) (1992) Disability Arts and Culture Papers, London: SHAPE Publications.
  • LIGGETT, H. (1988) `Stars are not born: an interpretative approach to the politics of disability', Disability, Handicap and Society, 3, 3, pp. 263-276.
  • McINTOSH, M. (1968) `The Homosexual Role', Social Problems, 16, 2, pp. 182-91. MELUCCI, A. (1989) Nomads of the Present, London: Radius.
  • MORRIS, J. (1991) Pride Against Prejudice, London: Women's Press.
  • NIETZSCHE, F.W. (1990) Beyond Good and Evil, Harmondsworth: Penguin.
  • PLUMMER, K.(1995) Telling Sexual Stories, London: Routledge.
  • PRIESTLEY, M. (1995) `Commonality and difference in the movement: an association of blind Asians in Leeds', Disability and Society, 10, 2, pp. 157- 70.
  • RILEY, D. (1988) Am I That Name?, Basingstoke: Macmillan.
  • SAWICKI, J. (1994) `Foucault, feminism, and questions of identity', in Gutting, G. (ed.) Cambridge Companion to Foucault, Cambridge: Cambridge University Press.
  • SCOTT, R.A. (1969) The Making of Blind Men, New York: Russell Sage Foundation.
  • SHAKESPEARE, T.W. (1993) `Disabled people's self-organisation: a new social movement?', Disability, Handicap and Society, 8, 3, pp. 249-264.
  • SHAKESPEARE, T.W. (1994) `Cultural representation of disabled people: dustbins for disavowal?', Disability and Society, 9, 3, pp. 283-299.
  • SHAKESPEARE, T.W. (1996) `Power and prejudice: issues of gender, sexuality and disability', in Barton, L. (ed.) Disability and Society: Some Emerging Issues, Harlow: Longman.
  • SONTAG, S. (1991) Illness as Metaphor/AIDS and its Metaphors, London: Pelican. STONE, D. (1985) The Disabled State, Basingstoke: Macmillan.
  • STUART, O. (1992) `Race and disability; just a double oppression?', Disability, Handicap and Society, 7, 2, pp 177-188.
  • SUTHERLAND, A.T. (1981) Disabled We Stand, London: Souvenir Press. VANCE. C. (1989) `Social construction theory; problems in the history of sexuality', in Altman, D. et al., (eds.) Homosexuality, Which Homosexuality?, London: Gay Men's Press.
  • WEEKS, J. (1977) Coming Out, London: Quartet Books.
  • WEEKS, J. (1990) `The value of difference', in Rutherford, J. (ed.) Identity: Community, Culture, Difference, London: Lawrence & Wishart.

 

ϟ

DISABILITY, IDENTITY AND DIFFERENCE
-Chapter 6- in 'Exploring the Divide'
author: Tom Shakespeare
University of East Anglia
1996
Edited by Colin Barnes and Geof Mercer, 1996
Leeds: The Disability Press, pp. 94 – 113.
source:  https://www.researchgate.net/
 

Δ

15.Fev.2021
Maria José Alegre