Professore di educazione inclusiva all’università di Londra e coordinatore di master e dottorati in educazione inclusiva e disability studies nella prospettiva del modello sociale. Ritroverete ancora Len Barton negli articoli della scuola.
‘Disability, Identity and the Struggle for Inclusion’.
Paper given at a Conference on Inclusive Education at the University of Bergamo, Italy. 27thFebruary 2009.
La traduzione in italiano si trova nel libro L’educazione inclusiva. Culture e pratiche nei contesti educativi e scolastici, a cura di Roberto Medeghini e Walter Fornasa, 2011, Franco Angeli, pp.41-50
Introduction
In this paper I will attempt to briefly outline some of the developing ideas, issues and questions relating to the relationship between the struggle for the politics of identity and inclusivity by disabled people. I will draw on insights from the English context as represented through the perspectives of disabled people. This approach must not be viewed as providing an unquestionable model for others to follow. Nor is it to be understood as a justification for arguing that inclusion is exclusively about disabled people. The intention of the paper is to encourage discussion and reinforce the importance of the voices of marginalised people in relation to any policy and practice developments concerning the quality of their lives.
Disability and Identity
Disabled people are increasingly concerned with the question of representation and the impact of their voices on decision making with regard to policy and practice. This interest in the perspective of disabled people is motivated by a recognition that both as individuals and groups they have been excluded from decision-making over a range of issues affecting their lives. This is part of a disabling culture in which disabled people experience degrees of social restriction and regulation. For disabled scholars such as (Barnes, 1997; and Oliver, 1996), understanding oppression necessitates engaging a historical perspective through which, on the one hand, the central value system underpinning Western culture and, on the other, the complex relationship between attitudes and the economy need to be carefully examined. This they argue, will contribute to the development of an informed understanding in which ignorance and stereotyping can be identified, challenged and removed. An historical awareness provides a basis for raising questions about definitions, policies and practices in terms of whose interests do they serve and what contributions do they make towards the development of a more just and equitable society?
Disabled people have offered some examples of how to address these concerns. Thus Campbell and Oliver (1996) explore the social and political contexts within which, over a relatively brief period of time, disabled people have gained in strength as a new social movement, against enormous odds. These include, chronic underfunding, a lack of faith in the viability of the new movement by many professionals, policy makers and politicians, active opposition on the part of traditional voluntary organisations and finally, because of the general disabling environment problems of disabled people meeting, communicating and organising.
The Social Model and Identity.
Disabled people are thus involved in a struggle to capture the power of naming difference itself. An emancipatory meaning of difference is one of the goals of social justice. This involves challenging definitions which isolate and marginalise and replacing them with those which engender solidarity, dignity and inclusion. By breaking out of a subordinate role, refusing to acquiesce to a stigmatised social identity and asserting pride in oneself coupled with the pursuit of solidarity, the disability movement is mounting a serious challenge to discrimination, prejudice and disablist images. Disabled people have a dream, a hope of a future society which, as Morris (1992) advocates:
…celebrates difference, a society which does not react to physical, sensory or intellectual impairments, or emotional distress, with fear and prejudice. We want a society that recognises the difficulties we face, but also values us for what we are (p.28).
This emphasis on a dignified way of conceiving and understanding difference is a fundamental aspect of an inclusive non-discriminatory approach to social conditions and relations. In his seminal paper on examining the concept of oppression in relation to the development of a social theory of disability, Abberley (1987) argues that viewing disability as oppression provides a basis for disabled people to both understand and transform their own situation. He contends that:
To claim that disabled people are oppressed involves, however, arguing a number of other points. At an empirical level, it is to argue that on significant dimensions disabled people can be regarded as a group whose members are in an inferior position to other members of society because they are disabled. It is also to argue that these disadvantages are dialectically related to an ideology or group of ideologies which justify and perpetuate this situation. Beyond this it is to make the claim that such disadvantages and their supporting ideologies are neither natural nor inevitable. Finally, it involves the identification of some beneficiary of this state of affairs. (p7).
Advocating that disabled people are oppressed necessitates engaging with the issue of power. In this approach power is not viewed as a form of property which some people possess, but rather, as a set of relations involving the exercise of decision-making. This encourages particular forms of questioning including, how, why and with what consequences does the exercise of power take place within particular sets of social conditions and relations? How are such developments justified and maintained? Finally, who benefits from this state of affairs? The assumptions and ideas that have been outlined so far in the paper, are part of an approach which has become known as the social model of disability. Firstly, it provides a framework and language through which disabled people can describe their experiences. Discrimination, exclusion and inequality can be named and challenged. Secondly, it offers a means through which the question of disability can be explained and understood in terms of wider socio-economic conditions and relations. Thirdly, it provides a basis for support and collective engagement of disabled people. Finally, it is a means through which the non-disabled world can be provided with an alternative and positive view of disability. Thus, it has a very important educative function. So, the definitions and interpretations entailed in this issue must not be wiewed as natural and immutable. They are complex and contestable social creations. As such they need to be struggled over. The social model approach provides a radical alternative to other dominant perspectives. Disability is not viewed as a tragedy, a punishment, or the result of some sin(s) of the parent(s), or the individual concerned, it is not a sickness in need of a cure, it is not a subject for charity and sentimental, patronising and dependency creating attitudes and relationships. It is a human rights issue. From this perspective, disabled people including children and adults experience varying degrees of discrimination, exclusion and stigmatisation. This includes being treated as less than human, being viewed as objects of charity, being excluded from the work force and living on or below the poverty line, being unable to experience the entitlements of citizenship resulting in a lack of real participation in social encounters and decisions over issues effecting their lives (Barnes, 1991; Barnes and Mercer, 2003). Nor is the social model a fixed and unchangeable set of ideas. Various points of argument and critique exist between disabled analysts and activists about the adequacy or validity of particular interpretations. Barnes (2003), in attempting to address some of these issues, argues that the social model does not deny the significance of impairment related concerns, appropriate medical interventions, nor the significance of culture and he continues The model:
Is a concerted attempt to politicize disability in order to provide a clear and unambiguous focus on the very real and multiple deprivations that are imposed on people whose biological conditions are deemed socially unacceptable in order to bring about radical structural and cultural change (p. 19). The importance of the social model in the struggle for equity and a non oppressive, non discriminatory world, is that this goes beyond the issue of disablement and is about the establishment and maintenance of a social world in which all people experience the realities of inclusive values and relationships.
Inclusion
The task of engaging with exclusion and inclusion and challenging policies and practices of regulation and control requires the identification of the ways in which oppression and discrimination is structured and legitimated in the taken-for-granted norms, habits, rules and practices of institutions. Thus, we need to develop a theory of political action (Eagleton 1996) and difference that does not conflict with a politics of solidarity. What is crucial to recognize is that the intention to understand the world is related to the desire to change that which is unacceptable and discriminatory, in order that enabling and inclusive structures, ideas and practices can develop and be maintained. In recognizing the ways in which identities are constructed often in multiple and contradictory ways, it is important that we do not portray disabled people as passive, incomplete, unfortunate recipients of overwhelming pressures, in that this underplays the active agency of individuals and the struggle for change. Alternatively, portraying disabled people as heroines or heroes minimizes the very real costs of oppression and gives an impression that they can do it alone. Both of these are unacceptable and counter-productive perspectives. Nor does this provide any grounds for complacency on the removal of the need for critical self-reflection on the part of disabled people and their allies. What is of central importance is that the demands for change are grounded in an informed historical view of hope. Hope is essential in the struggle for change and involves deep convictions and passions as exemplified by Freire (1998) who maintained in his book the Pedagogy of Hope that it was “written in rage and love, without which there is no hope”. p10. Hope involves an informed understanding of the offensive nature of current conditions and relations and a belief that the possibilities of change are not foreclosed. We do need to be careful when arguing about hope as Simon (1987) reminds us:
Not all fantasy is benign. The basis of what many people view as a “better tomorrows” sometimes includes the unjust and oppressive disparagement or control over others. Not all dreams are dreams of hope (p382).
Thus, the hope that we are concerned with covers allforms of prejudice and discrimination. This goes well beyond the issues of disablement. This approach is highlighted in the voices of two disabled scholars (Oliver and Barnes 1998) reflecting on issues entailed in the processes from exclusion to inclusion:
It will be a very different world from the one in which we now live. It will be a world that is truly democratic, characterised by genuine and meaningful equality of opportunity, with far greater equity in terms of wealth and income, with enhanced choice and freedom and with a proper regard for environmental and social continuity.
and they continue
We need a world where impairment is valued and celebrated and all disabling barriers are eradicated. Such a world will be inclusionary for all. (p102).
Establishing a basis of hope is an urgent, difficult, exciting, and necessary task. The wellbeing of all people is at stake.
Conclusion
Inclusion entails a perennial quest for a non-discriminatory, non-oppressive social world in which learning to live with one another in more enabling conditions and relations is of fundamental significance. It is about thinking and behaving in alternative ways to the prevailing oppressive conditions, values, priorities and relationships. The paper has focused on the position and experience of disabled people with the overall intention to encourage a recognition of the relevance and application of inclusive values, and expectations for allpeople. A desire for inclusive thinking and practice is a serious and fundamentally important concern. The issues are gravely significant and involve, for example, the identification, understanding and removal of all forms of discrimination and exclusion. This quest necessitates a sustained struggle in which transformative change is absolutely essential as an outcome of an alternative vision. Such a vision involves taking seriously how we define difference and change and its impact on conceptions of self and the nature of inclusion.
References
Abberley. P.(1987) ‘The Concept of Oppression and the Development of a Social Theory of Disability’ in Disability, Handicap and Society, Vol. 2, No. 1, pp.5 – 19.
Barnes, C. (1991) Disabled People in Britain and Discrimination: London: Hurst & Co. in association with the British Council of Organisations of Disabled People.
Barnes, C. (1997) ‘A Legacy of Oppression: A History of Disability in Western Culture’ in Barton, L. & Oliver, M. (Eds) Disability Studies: Past, Present and Future. Leeds: Disability Press.
Barnes, C. (2003), ‘Rehabilitation for Disabled People: a ‘sick’ joke?’ in www.leeds.ac.uk/disability-studies(last accessed 10th February 2009).
Barnes. C. & Mercer. G. (2003) Disability, Cambridge Polity Press.
Campbell. J. & Oliver. M.(1996) Disability Politics. Understanding Our Past, Changing Our future. London: Routledge.
Eagleton. T. (1996) The illusions of Postmodernisms. Oxford: blackwells.
Freire. P. (1998) Pedagogy Of Hope. Reliving Pedagogy of the Oppressed. New York Centinuum.
Morris. J. (1992) Disabled Lives:Many Voices One Message. London: BBC.
Oliver, M. (1996) Understanding Disability: from theory to practice. Basingstoke. Macmillan.
Oliver. M. and Barnes. C. (1998) Disabled People and Social Policy. From Exclusion to Inclusion. Harlow. Addisson Wesley Longman Ltd.
Simon. R. (1987) ‘Empowerment as a Pedagogy of Possibility’ in Language Arts. Vol. 64, No. 4, pp. 370 – 383.