Locating Self-advocacy in Models of Disability: understanding disability in the support of self-advocates with learning difficulties

Recent appraisals of self-advocacy groups of people with learning difficulties have tended to focus on the constitutional and structural facets of groups whilst failing to explicitly engage with disability theory. This paper explores different understandings of disability and examines how these are or can be implicated in the self-advocacy movement. First, the effects of the dominant individual or personal tragedy model of disability on self-advocacy will be examined with reference to the advisor's position. It is argued that if advisors hold such understandings of disability then they threaten to stifle the selfdetermination of self-advocates. Secondly, self-advocacy framed in terms of the alternative social model of disability will be presented. It is argued with reference to the advisor's role that self-advocacy is best understood and practised when it is grounded in this persuasion. Here, the views of self-advocates themselves are called upon. Finally, understanding self-advocacy in terms of the social model is taken further. It is suggested that self-advocates themselves directly challenge dominant understandings of disability in general and can contribute to the formulation of a social theory of disability.     

Support and Access in Sports and Leisure Provision

This paper will look at different ways of enabling people with learning difficulties to engage in leisure opportunities: the Support Model and the Access Model. These models will be put in their social context and then critiqued.

The support model will be be contextualised in the theory of normalisation, access in disability theory. The support worker role will be shown to be useful in motivating people with learning difficlties into new activities, as well as having a protecting element, and unwittingly, disguise the level of discrimination people with learning difficulties are subject to.

The access worker role will be shown to have strengths in understanding discrimi nation. With this analysis, it has the potential to dismantle disabling practices. However, the needs of people with learning difficulties have ramifications for disability theory. In practice, that means that ideas of self-advocacy need to be taken on board.

Through interviews with sports personnel, social workers and people with learning difficulties, the implications of creating fully comprehensive access will be examined. I will conclude that both effective support and comprehensive access must be in place before people with learning difficulties are able to make a meaningful choice as to how they are enabled to participate in sports. It is only at that point of choice that the two models become complementary rather than competing discourses of provision.     

Normalisation, Emancipatory Research and Inclusive Research in Learning Disability

In this article I set out to trace the influence of two major sets of ideas: normalisation/srv, and the social model of disability on inclusive research in learning disability. The argument is that normalisation set the agenda for learning disability research for two or more decades. Inclusive researchers continue to apply normalisation thinking to work with people with learning difficulties, particularly in assuming the role of advocate - offering people the opportunity to take on valued social roles and assuming responsibility for promoting positive images. Latterly, a number of researchers have tried to rise to the challenges posed by emancipatory research, particularly in attempting to find ways to put people with learning difficulties in control. This illustrates the influence of thinking emanating from disability studies. However, the paper shows that whilst some ideas from emancipatory research have been applied in learning disability, there are debates in the disability literature that have not been addressed in learning disability research to date. The result is that inclusive research in learning disability is in danger of being marginalised, both in the context of disability studies and in the context of the broad sweep of learning disability research.     

Mental health support needs of people with a learning difficulty: a medical or a social model?

People with learning difficulties, like all disabled people, face social oppression. Much recent policy and practice are underpinned by at least some understanding of this oppression, and the social model of disability has been influential in discussions of services and supports for people with learning difficulties. However, in the area of mental health, the picture is somewhat different. This paper argues that the medical model has predominated in discussions of mental health support for people with learning difficulties, and that a social model approach could have much to offer. The paper draws on an ongoing action research study in which service providers, families and young people with learning difficulties are working together to articulate what is needed, in order to find routes to improve the support offered to young people with learning difficulties and mental health support needs.     

Normalisation and 'Normal' Ageing: the social construction of dependency among older people with learning difficulties

This paper discusses the new phenomenon of the survival into old age of the increasing numbers of people with learning difficulties. This raises both theoretical and practical policy issues. In the UK health and social services for older people and for people with learning difficulties have followed quite different paths. One has been based on a limited, age discriminatory view of 'normal' ageing; the other has focused on a potentially liberating concept of normalisation. This distinction is being challenged by the advent of older people with learning difficulties, which is raising questions such as, what is the meaning of normalisation in older age? We focus on this key question, illustrating the different principles behind service provision for these two groups and argue that the concept of normalisation is flawed when applied to older people. The alternative of social integration is proposed as the basis for organising health and social services for both older people and those with learning difficulties.     

Capability,freedom and profound disability

It has been suggested that capability theory is well suited to assess egalitarian principles of justice as these apply to people with learning difficulties and disabilities. The purpose of this paper is to explore how extensive that assistance is in respect of people whose difficulties are multiple and profound. I am concerned with one aspect of capability theory in particular; namely, the place accorded to the concept and value of freedom. I argue that capability theory exaggerates the importance of freedom as a basic value for egalitarian evaluation.     

Human capital, social capital, entrepreneurship and disability: an examination of some current educational trends in the UK

Influenced by European policy, human capital and social capital are currently of interest in UK education policy and practice, expressed particularly in the concepts of lifelong learning and entrepreneurship. Human capital and social capital ideas are shown to be flawed by not taking disability into account. The characteristics of entrepreneurship and entrepreneurship education are examined for relevance to young people with disabilities or learning difficulties and it is concluded that more could be done to develop opportunities for entrepreneurship. The position of people when work is not an option is considered, leading to the question of whether there is a 'disability industry', and an acknowledgement of the importance to the economy of disabled people as consumers and producers. A wider definition of entrepreneurship, which includes people with disabilities and learning difficulties, is sought and the paper concludes by discussing the wider implications for the learning community.     

The Social Model of Disability: What does it mean for practice in services for people with learning difficulties?

Does the social model of disability currently inform the delivery of services for people labelled as having profound and complex learning difficulties? What distinguishes practice which draws on the social model from that which is influenced by an individual model or a medical model of disability? This paper draws on the findings of a small scale interpretive research study and some of the current debates within disability studies to illuminate these questions. It concludes that the social model can and does positively impact on some practice and that it should be taught to all providers of services for this group. It further concludes that to include discussion about individual experience of impairment in such training may have negative consequences.     

'Learning Difficulties', the Social Model of Disability and Impairment: Challenging epistemologies

Critical researchers enter into an investigation with their assumptions on the table, so no one is confused concerning the epistemological and political baggage they bring with them to the research site (Kincheloe & McLaren, 1998, p. 265). A theory of disability as oppression recognises and, in the present context, emphasies the social origins of impairment. (Abberley, 1987, in Barton and Oliver, 1997, p176, my emphasis.) Identification with the label of 'learning difficulties' has contradictory personal and political implications for people so-labelled. While this identification has allowed people to organise collectively through the self-advocacy movement, pervasive understandings of 'learning difficulties' that permeate many societal settings tend to be framed in ways that directly confirm a personal tragedy model of disability and impairment. This paper argues for a reconsideration of impairment in relation to 'learning difficulties', to challenge pervasive assumptions in relation to 'learning difficulties' - at the level of epistemology - and to construct four inclusive epistemological foundations . The first, deconstructing impairment , draws upon a body of literature that has exposed the social nature of diagnostic criteria and destabilised naturalised notions of 'learning difficulties'. The second, impairment, as storied , brings in the accounts of people with 'learning difficulties' that locate impairment in, and as, personal and social narratives. Thirdly, reculturising impairment highlights emergent resilient cultures of people with 'learning difficulties' that re-culturise impairment. Fourthly, epistemological impacts , grounds the analysis by calling for an attention to the ways in which assumptions about the origins of 'learning difficulties' impact upon the treatment of people so-labelled.     

Dimensions of Oppression: theorising the embodied subject

This paper argues that a critical study of disability needs to examine how disability is subjectivity experienced, both at a conscious and an unconscious level, as well as having an appreciation of disabling social policies and structures. I begin by identifying the reasons why many social model theorists have not, in the past, seen the analysis of 'experience' as being relevant to our understanding of disability. I adopt an interdisciplinary approach (that is, one that recognises the importance of biological, social, relational and unconscious levels of analysis) in the study of two specific groups of people; those with learning difficulties and those with sickle cell anaemia. I focus particularly on the role of modern medicine within a disablist society in this attempt to demonstrate that bodily, emotional and social differences are mutually constitutive.     

Rights to research: utilising the Convention on the Rights of Persons with Disabilities as an inclusive participatory action research tool

For those labelled disabled, disability rights are synonymous with human rights, not merely a sub-category. In this paper we consider disability rights in terms of the right of people labelled with learning difficulties to be actively involved in research. Examples from an inclusive participatory action research project undertaken in partnership with people labelled with learning difficulties demonstrate how the Convention on the Rights of Persons with Disabilities was operationalised using photo-voice to facilitate accessible research, analyse findings and promote social change.     

Who am I? Concepts of disability and their implications for people with learning difficulties

The relationship between concepts of disability, group membership and self-concept was examined. It was argued that people with learning difficulties have been categorised, by non-disabled people, as 'belonging' to a devalued social group with a rigid boundary based on IQ level. Findings from studies of self-concept have shown little evidence of a sense of belonging. It was suggested that people with learning difficulties may prefer not to identify with this social group because of the negative effect it may have on their self-esteem. The analysis based on intergroup and social identity theories proposed that people with learning difficulties may be encouraged in creating a positive self-concept by abandoning the IQ criterion for social categorisation; softening the boundaries between disabled and non-disabled people; and adopting collective rather than individual strategies for social change.     

The Disability Rights Movement in Japan: past, present and future

This paper introduces the history of the modern disability rights movement in Japan, which has been a driving force for change in social norms and policies, and for improving the lives of disabled persons and their families. It presents the traditional social norms and policies that resulted in the confinement of disabled people in their parents' homes and in institutions, a radical movement of people with cerebral palsy active in 1960-1980s, the emergence of the independent living movement in 1980s, and the current disability rights movement and its future challenges. This paper is based on a review of documents and on interviews conducted during the spring of 2000 in Japan with disability rights advocates and personnel working for centres for independent living.     

Medicine and the Aesthetic Invalidation of Disabled People

Contemporary disability discourse is marked by a struggle between medical and social meanings and models. The latter reflects the aspirations and youthful radicalism of the disability movement, while the former regards itself as the legitimate voice of truth in all matters associated with bodily function and process. This paper argues that the battle lines between these two camps need not be redrawn. Despite hints to the contrary, the proposed extension of the social model to accommodate a sociology of impairment does not involve a rapprochement with the medical model. On the contrary, a sociological account of impairment seeks to augment the armoury of the social model by developing one of its weaknesses, namely the cultural critique of medicine. This paper examines some of the ways in which medicine has been involved in the 'aesthetic invalidation' of disabled people and proposes that 'geneticization' is an important current contributor to this form of disability discrimination.     

Paradoxes, locations and the need for social coherence: a qualitative study of living with a learning difficulty

Policy rhetoric over recent decades has promoted social inclusion of the more vulnerable sectors of society, such as people with learning difficulties. This study aimed to describe the experiences of people who live with learning difficulties in order to inform local service development. Thirty-five people with a learning difficulty and/or a family member were interviewed. A model of social coherence was developed that moves beyond the self-limiting debates about social inclusion and exclusion. It is underpinned by a sense of location for the person with a disability in relation to services and carers, family and community, dependency and risk, temporality and space, events, control and society. Key recommendations are for services to know the individual and his/her family; to be responsive to individual needs; to enhance the capacity of families and communities to support people with difficulty in learning; and to help these people to feel more valued.     

The Systems Theory Concept of Disability: one is not born a disabled person, one is observed to be one

The article aims at the theoretical development of the concept of disability, with particular reference to its integration with social systems theory. The concept of disability is discussed by suggesting that the predominant models within disability research cannot communicate with each other because they represent different observation points, all of them describing disability from within a specific system. It is the thesis of this article that the distinction between individual and society, which constitute the basis of the well-known scheme of observed differences between impairment, disability and 'handicap', is a distinction based on nai¨ve realism and obscures the problems within disability research. In line with a long tradition within sociology, social system theory rejects the belief that our concepts are representations of reality: the categories and concepts we use are distinctions that are system specific. It is through those distinctions that the phenomenon is observed. This implies that observations are not absolute but relative to the observer's perspective.     

Becoming quixotic? A discussion on the discursive construction of disability and how this is maintained through social relations

Using an autoethnographic approach, this paper focuses upon interactions between ‘Paul’ (a pseudonym), whose symptoms associated with ‘severe learning difficulties’ are such that he is positioned on the low-functioning end of the autistic spectrum, his carers and others, in spaces taken for granted to be ‘public’ in both the United Kingdom and Hong Kong. This paper examines how social discourses relating to disability filter into social interactions, ultimately constructing the symptoms they purport to represent. This paper concludes by highlighting how interactions might be viewed as enabling rather than disabling, as producing spaces for thinking about the human condition.     

Stuck in the land of disability? The intersection of learning difficulties,class, gender and religion

This article discusses the discrepancy between formal rights to full social inclusion and the lived experiences of young adults with learning difficulties. It draws on inclusive life history research in Iceland and employs intersectional theory to study the social participation of young adults with learning difficulties. In an attempt to understand the complex political, economic and ideological forces that hinder the actualisation of their formal rights the intersection of disability, class, gender and religion in the production and reproduction of existing social hierarchies is examined. The article demonstrates how the research collaborators resisted their devalued social construction and attempted to create and affirm themselves as competent social actors.     

Listening for policy change: how the voices of disabled people shaped Australia’s National Disability Insurance Scheme

Voice has become an important yet ambivalent tool for the recognition of disability. The transformative potential of voice is dependent on a political commitment to listening to disabled people. To focus on listening redirects accountability for social change from disabled people to the ableist norms, institutions and practices that structure which voices can be heard in policy debates. In this paper, I use disability theory on voice and political theory on listening to examine policy documents for the National Disability Insurance Scheme in light of claims made by the disability movement. Although my study finds some evidence of openness in the policy development stage, the scheme falls short of valuing the diverse voices of disabled people as partners in shared dialogue.