Defining and organizing self-advocate centered groups: implications of survey research on self-advocacy groups in Japan

Ideally group members who have intellectual disabilities should have power in their self-advocacy groups, leading to groups that can be considered 'self-advocate centered.' Currently, not all self-advocacy groups can be considered self-advocate centered because group advisors have an overwhelming influence on group decisions. This article assumes that establishing self-advocacy groups in which members truly control the agenda and make key decisions is one of the most effective methods to empower people with intellectual disabilities. This study identifies factors useful in identifying 'self-advocate centered' groups, and especially focuses on the relationship between self-advocates and advisors. It is based on a quantitative research project conducted in Japan. According to the results of the research, though relational transformation between self-advocates and advisors was commonly seen in many self-advocacy groups, conflicts between them were scarcely observed. The meaning of relational transformation without conflicts is considered, along with the concepts of independence and interdependence.     

Children's experiences of disability: pointers to a social model of childhood disability

The social model of disability has paid little attention to disabled children, with few attempts to explore how far it provides an adequate explanatory framework for their experiences. This paper reports findings from a two-year study exploring the lived experiences of 26 disabled children aged 7-15. They experienced disability in four ways—in terms of impairment, difference, other people's behaviour towards them, and material barriers. Most young people presented themselves as similar to non-disabled children: it is suggested they may have lacked a positive language with which to discuss difference. It is further argued that Thomas's (1999) social relational model of disability can help inform understandings of children's experiences, with 'barriers to being' having particular significance.     

The role of self-advocacy in work for people with learning difficulties

This paper explores the relationship between self-advocacy and work for people with learning difficulties [1]. Explorations are based mainly on a participant observation study in which members of a self-advocacy group for people with learning difficulties included the researcher in their regular meetings. Discussions about work, most broadly defined as meaningful activity which makes a contribution to society, emerged as a critical preoccupation. We examine the importance of self-advocacy as a vehicle for people with learning difficulties who want to remove or circumvent barriers which surround their employment. Our research shows that understanding the role of self-advocacy in relation to work creates many development opportunities for both disabled employees and their prospective, or actual, employers. It is suggested that self-advocates can themselves achieve change in employers' attitudes by challenging oppressive images of people with learning difficulties in the workplace. It is hoped the paper will advance recognition of the importance of self-advocacy for maximising the participation of people with learning difficulties in work, and for acceptance of their status as workers.     

Autism self-advocacy in the Netherlands: past,present and future

This article presents the results of participatory research into the roles and practices of autistic self-advocates in the Netherlands, and the outcomes of their activities. The article discusses the history of Dutch autism self-advocacy, situating it within the history and practices of self-advocacy internationally and the socio-cultural context of the Netherlands. Particular reference is made to Judi Chamberlin’s model for building effective self-advocacy organisations. Key findings include the scope of significant achievements, and the identification of barriers to efficacy in the areas of governance, personal and organisational capacity, relationships with other organisations, and coalition-building. The research concludes by considering what practices could serve to build increased capacity and efficacy, based on the experiences of these and other self-advocates.     

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.     

Doing Disability Research: activist lives and the academy

The relationship between the academy and the disability movement is a problematic one. Disability researchers based in the academic world who align themselves with the social model of disability face contradictory aims and values in attempting to challenge dominant modes of research production in ways that signify the importance of the agendas of disabled people. It could be argued that research that involves people with the label of 'learning difficulties' [1] creates further points of contention. In this paper we do two things. First, we re-present a paper given at a conference on the performing arts of people with 'learning difficulties', where the audience was made up of performers, workers, providers and researchers. This paper attempted to be accessible, theoretical, political and practical. Secondly, we reflect upon this paper in relation to seven points of analysis that emerge at the boundaries of disability politics and disability research. We argue throughout that real efforts must be made to bridge these boundaries in ways that augment disability theory and politics together.     

How is disability understood? An examination of sociological approaches

This paper considers sociological understandings of what constitutes disability. Current meanings of disability in both disability studies and medical sociology are examined and compared, using selected articles from leading authors in each discipline as case studies. These disciplines are often represented as offering starkly contrasting approaches to disability, with their differences amounting to a disciplinary 'divide'. It is argued that, on closer inspection, common ground can be found between some writers in disability studies and medical sociology. It is suggested that this situation has arisen because, in disability studies, the social relational understanding of disability developed by Vic Finkelstein and Paul Hunt in the 1970s has been lost over time, overshadowed by the rise to prominence of its offspring: the social model of disability. The paper concludes with some reflections on the need to revive a social relational understanding of disability.     

Researching Disability Politics, Or, Some Problems with the Social Model in Practice

This article arises from a research project involving the disabled members' group in UNISON, and problematises the social model which explicitly undergirds the discourses and practices of this group. In abstract terms, there are dangers that the social model can be interpreted in a way which privileges some impaired identities over others, sanctions a separatist ghetto which cannot reach out to other groups of disabled and disadvantaged people, and weaves a tangled web around researchers who adhere to the emancipatory paradigm. In concrete terms, these dangers are explored with reference to the stories of impaired people who believe that they are excluded from the disabled members' group, the predicaments of ex-disabled and differently-disabled people in relation to the movement, and the culture of suspicion surrounding academics, particularly the 'non-disabled' researcher as would-be ally. It is argued that, whilst such identities and issues might appear to be 'marginal' ones in the sense of occurring at the boundary of disabled communities, disability politics and disability studies, they should not be 'marginalised' by disabled activists and academics, and indeed that they pose challenges to our collective identities, social movements, theoretical models and research paradigms which need to be addressed.     

Deaf adults: retrospective narratives of school experiences and teacher expectations

Seventeen Deaf adults were interviewed about their perceptions of teacher expectations during childhood. Using a six-phase thematic analysis methodology, five themes emerged: helpful and challenging teachers, preference for Deaf teachers, the experience of lowered expectations, the worst teachers, and self-advocacy. The worst teachers were the ones who did not meet communication needs rather than those with the lowest expectations. Participants often advocated for their needs and demanded more challenging schoolwork. Implications of this study are noted for self-advocacy and resistance theories of disability, and introducing cultural perspectives and understandings of disability and Deaf experiences into teacher preparation.     

The Use and Abuse of Models of Disability

Throughout history, theorists have made use of the technology of the day to provide explanatory models of the behaviour they observe in order to provide an improved understanding of human behaviour. Bax (1998) describes the use of models of disability as not particularly helpful in relation to the treatment of children with physical disabilities. It is the purpose of this paper to show that models do have their place within disability research and the implications of using the medical and social models of disability, together with two models from developmental psychology, namely the transactional model and systems theory, will be discussed. It is argued by the authors that the usage of these models can aid understanding of disability in both research and clinical settings.     

Contesting Practices, Challenging Codes: self advocacy, disability politics and the social model

This paper examines the relationship between Self Advocacy and the disability movement in Britain in the light of social movement theory. Using the concept of 'collective identity' as it is explored in social movement theory, the analysis examines why the disability movement's promotion of a strong disabled identity may be difficult to achieve for all its constituents, particularly people with learning difficulties. Additionally the concept of symbolic production within social movement theory is used to explore how the movement uses the social model of disability as its 'collective action frame'. It is argued realignment of this frame is taking place within the movement and is reflected in debates within Disability Studies about the role of impairment. The voices of people with learning difficulties remain silent in this debate. The paper concludes by arguing for the recognition of social, psychological and cognitive difference as pre-requisite to an inclusive theory and politics of disability.     

The Experience of Disability from the Perspective of Parents of Children with Profound Impairment: Is it time for an alternative model of disability?

This article considers the significance of a model of disability in relation to the child with profound impairment and examines the individual and social models of disability in connection with this. It is argued that although these two models cannot be completely dismissed, the models largely ignore the experience and perspective of the profoundly impaired child, their parent(s) and family. Following in-depth interviews with four parents I attempted to elicit the experience of disability from this perspective. I invited the parents to tell me the ways in which they experience disability, how they viewed the nature and cause of disability in their lives and the relationship between themselves and the various professionals involved in the care of their child. This article endeavours to implement the interview 'findings' to inform an alternative model of disability, the 'Alliance' model, which is briefly discussed and critiqued.     

Images and narratives of autism within charity discourses

This research explores awareness of issues and debates concerning images and narratives about disability amongst autism charity brand-management professionals and their counterparts in the creative industries. These include the role of charities in service provision, the social model of disability, and disability stigma. It describes and analyses past and recent charity advertisements in both the United Kingdom and the United States, with attention to the historical context of these and the views and practices of charity and advertising professionals and autistic self-advocates, using David Hevey’s three-stage framework for disability representation by charities. The research concludes by considering emerging counter-narratives, which suggest ways charities may escape the perceived need to produce pathos or fear as part of such campaigns.     

Self-advocacy among people with disabilities in the transition from good will to civil rights: Is it sufficient?

The burdens associated with eliminating discrimination on the basis of disability have been bestowed upon those individuals in our society with the least experience in defending themselves from social and interpersonal bias. Offering people with disabilities training in civil rights, barrier identification, interpersonal communication, and problem solving skills to enhance and empower self-advocacy have been the primary means of government sponsored human service institutions to generate the desired social change. There is evidence that these actions are less than effective. Overt public commitment and outreach efforts are needed to effectively elicit change from those individuals who are directly responsible for discriminatory actions.     

'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.     

Differences,Conflations and Foundations: The limits to 'accurate' theoretical representation of disabled people's experience?

This article proposes that current approaches to theorising disability as a form of social oppression and their relationship to disabled people's experiences are hampered by a modernist conceptual framework, which is increasingly at odds with the contemporary social world and with developments in theory-making as a whole. In order to bring disability theory closer to the lives of disabled people and the politics of new social movements, it is argued that the conceptual underpinnings of theory must be broadened beyond their current focus on structures, which view differences in terms of delimiting boundaries to one which includes an awareness of the relational, mediatory and performative role of discourse, and the increasing importance of local knowledges in shaping the social and political world.     

The Politics of Disability: A New Approach

This paper will argue that the politics of disability has, so far, been narrowly conceived as part of the processes of party and pressure group activity. These approaches will be examined critically and it will be suggested that they are unlikely to produce substantial political gains in terms of ensuring the full participation of disabled people in society or contribute significantly to improving the quality of their lives. Finally, it will be argued that the politics of disability can only be properly understood as part of the newly emergent social movements of all kinds and it is only within this context that their real significance can be grasped.     

The contextual and social locations of older women's experiences of disability and decline

Understandings of disability and decline within health and social care seem to focus mainly on the bodies and function of older persons. However, the way that older people's experiences of disability and decline are fixed into rigid functional classifications such as ‘frailty’ are problematic. Drawing on the narratives of twelve diverse older English-speaking women in Montreal, Canada, I will argue that older women's experiences are more connected with the contexts within which they experience disability and decline, and the social locations they bring to these experiences, than the functional limitations of their bodies. Older women's stories – particularly those related to the home and the bus – reveal the clash between dominant understandings of ‘frailty’ and older women's contextual and social experiences of disability and decline; expose tensions within health and social care practices; and highlight the potential which exists in both context and social location.     

Class and comparison: subjective social location and lay experiences of constraint and mobility

Lay perceptions and experiences of social location have been commonly framed with reference to social class. However, complex responses to, and ambivalence over, class categories have raised interesting analytic questions relating to how sociological concepts are operationalized in empirical research. For example, prior researchers have argued that processes of class dis‐identification signify moral unease with the nature of classed inequalities, yet dis‐identification may also in part reflect a poor fit between ‘social class’ as a category and the ways in which people accord meaning to, and evaluate, their related experiences of socio‐economic inequality. Differently framed questions about social comparison, aligned more closely with people's own terms of reference, offer an interesting alternative avenue for exploring subjective experiences of inequality. This paper explores some of these questions through an analysis of new empirical data, generated in the context of recession. In the analysis reported here, class identification was common. Nevertheless, whether or not people self identified in class terms, class relevant issues were perceived and described in highly diverse ways, and lay views on class revealed it to be a very aggregated as well as multifaceted construct. It is argued that it enables a particular, not general, perspective on social comparison. The paper therefore goes on to examine how study participants compared themselves with familiar others, identified by themselves. The evidence illuminates social positioning in terms of constraint, agency and (for some) movement, and offers insight into very diverse experiences of inequality, through the comparisons that people made. Their comparisons are situated, and pragmatic, accounts of the material contexts in which people live their lives. Linked evaluations are circumscribed and strongly tied to these proximate material contexts.The paper draws out implications for theorizing lay perspectives on class, and subjective experiences of inequality.     

What makes a good self-advocacy project? The added value of co-production

Abstract

This article describes how two self-advocates worked with two academics and others to produce a toolkit to help self-advocacy groups run better projects. We begin by explaining why this research needed doing and how we carried out the research. We then talk about what co-produced research means to us and how we think it is different from participatory or inclusive research. We discuss whether the research and this article were co-produced. We finish by looking at why we think co-production added value to this research. Our aim with this article is to help activists and academics work together to achieve two things: good-quality research findings; and big differences to disabled people’s lives.