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.     

‘Resistance: Which Way the Future?’ A dual-screen installation related to the theme of disability and eugenics

This paper reports the part findings of an evaluation of a dual-screen installation entitled ‘Resistance: Which Way the Future?’ by the writer and director Liz Crow. Central to the installation is the experience of disabled people during the Holocaust period, the values underpinning this neglected period of history and how this relates to understanding the experiences of disabled people today. Simultaneously, this paper raises issue with a previous comment which suggested that disabled people and eugenics are a form of ‘emotive rhetoric’. On the contrary, this paper asserts that the link between eugenics and disability cannot be overstated, and is a significant moment in history where the lived experiences of disabled people – people described as having ‘learning difficulties’, surviving artefacts, and recorded testimonies – have still yet to be explored.     

Towards a Sociological Critique of the Normalisation Principle

The normalisation principle is the dominant paradigm in the field of learning difficulty research and service development. This paper attempts a sociological examination of the normalisation principle. It argues that the location of learning difficulty as a practice-oriented issue and its absence from a sociological agenda have rendered normalisation theoretically weak. The critique discusses the following points. The concerns of the normalisation principle reflect those of professionals rather than of people with learning difficulties. Normalisation lacks an exploration of the power relationship between (able-bodied) professionals and (disabled) service users. Finally, it encompasses no analysis of the material and ideological factors which socially construct learning difficulty and disempower and (literally) impoverish people with learning difficulties.     

A Question of Friendship: Community Care and the Relationships of People with Learning Difficulties

There is evidence that a number of people with learning difficulties living in the community do not enjoy a range of satisfactory social relationships. This paper will examine the way that the issue of the apparent loneliness of people with learning difficulties has been approached in the community care literature. I will argue that there is a clear assumption in much of the literature that friendships between disabled and non-disabled people are of greater value than those relationships between disabled people. The low value accorded to friendships between disabled people is very damaging to their individual self-esteem, as well as to the possibility of political action based on a sense of solidarity. The paper will point also to the constraints that many people with learning difficulties face which render it difficult for them to form friendships and, therefore, reinforce their isolation.     

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.     

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.     

Disabled children,child protection systems and the Children Act 1989

It is now widely recognized that disabled children are particularly vulnerable to abuse but that a number of factors get in the way of protecting them. This article discusses research on the implementation of the Children Act as it applies to disabled children and the findings from in‐depth interviews with young disabled people. The research concluded that: current child protection systems are not addressing the particular needs of disabled children; the Children Act regulations on short‐term and long‐term placements are often not complied with; and disabled children and young people have little say in decisions which affect them and few opportunities to communicate their experiences. Copyright © 1999 John Wiley & Sons, Ltd.     

The Representation of Disabled People: A Hampshire Centre for Independent Living Discussion Paper

This paper addresses the general subject of the representation of disabled people. The purpose is to show why disabled people need to speak for themselves, how they can work with other organisations, and how disabled people's organisations are, and can remain, truly representative. The paper discusses: (1) the representation of disabled people; (2) how do disability groups relate to able-bodied organisations, policy-makers, etc?; and (3) how can disabled people's groups remain truly representative?     

Mental Health Law: Innovations in Education and Representation

What do we know about the lives of people with learning difficulties? What do we know about the lives of people who have used mental health services? People require legal representation to obtain access to the basics of life. Legal representation for people with mental disabilities or learning difficulties also provides a forum for client empowerment. Legal representation has historically been dominated by professionals trained in traditional methods. A mental health law clinic, based upon consumer objectives, provides an opportunity to apply critical legal theory to the practice of law. Legal and citizen advocacy are combined to provide maximum participation in obtaining results. In this article, the author traces the development of a mental health law clinic by documenting the value of clinical legal education and the necessity of commitment to consumer-centred representation.     

An Employment Project as a Route to Social Inclusion for People with Learning Difficulties?

Government policy to reduce social exclusion focuses on increasing employment opportunities and incentives, especially for disadvantaged groups. This paper discusses the findings of an evaluation of a project in the North West of England for people with learning difficulties, which sought to create opportunities for paid and/or integrated employment. The findings suggest that this goal can be undermined by many factors such as the isolation of social care services from employers and the disinclination of service organisations to include users, carers and staff in the development of new service approaches. Social welfare policies also mitigate against this aim, by failing to enable providers to translate the rhetoric of social inclusion into a reality. We discuss some of the obstacles preventing people with learning difficulties from inclusion into mainstream employment, by considering their impact upon the achievements of the North West project.     

Disabled People in a Newly Industrialising Economy: opportunities and challenges in Malaysia

Malaysia is one of the fastest developing countries in the world and by the year 2020 it will become an industrialised nation according to the Malaysian government's strategic plans. This dynamic situation poses numerous opportunities and challenges for disabled people in Malaysia. Two positive outcomes are opportunities in the employment sector as well as infrastructure developments. However, there are new challenges especially with regards to mainstreaming of educational and vocational training along with the need for a dynamic placement service. The rise in industrial accidents creates a new challenge, along with the changing demographic trends which could have a negative impact on disabled people. What is striking is that disabled people and their organisations are beginning to articulate these changes and making a claim for inclusion in Malaysian society.     

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.     

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.     

Social inclusion through employment: the marketisation of employment support for people with learning disabilities in the United Kingdom

Employment for people with learning difficulties is considered key to their social inclusion. This contradicts the perceived un-employability of people with learning difficulties that has been part of their social identities throughout their history hitherto. The national rate of employment for people with learning difficulties remains extremely low and has barely changed in the 20?years between 1990 and 2010. This paper investigates links between learning disabilities and employment, drawing on interview-based research. It analyses the quality of experience of the minority in employment to consider whether employment can serve the inclusive purpose expected of it.     

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal-able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.     

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.     

Some Ethical and Methodological Issues in Research with People with Learning Difficulties

This paper discusses some ethical and methodological issues which arose in a recent study examining the exercise of choice by people with learning difficulties. The research aimed to examine in detail the choice-making process, and to explore ways of involving people with learning difficulties both as respondents and as contributors to the study design. Various dilemmas were encountered-including how to gain informed consent from people with profound impairment, the risk of intrusion when conducting research in people's own homes, and the dangers of raising expectations of continuing friendship. The importance of accountability when analysing data and disseminating findings is highlighted. A Research Advisory Group, including two people with learning difficulties, was set up to give guidance on the study. Steps were taken, but not enough, to facilitate their involvement in the meetings. Reflecting on experience gained in this study and on research reported elsewhere, a number of pointers for future research are drawn. These include the need to consider the potential implications of intellectual impairment for involvement in the research process.     

‘I do like the subtle touch’: interactions between people with learning difficulties and their personal assistants

Disabled people have often been denied choice and control in their lives. Although direct payments promise to deliver autonomy for disabled people, much depends on the way direct payments employers and personal assistants handle their interactions. These matters are particularly important for people with learning difficulties, who have routinely been restricted and controlled by their support staff. This paper presents an analysis, based on video material, of interactions between people with learning difficulties and personal assistants. The paper examines how difficult tasks, such as giving advice, can be accomplished in ways that people with learning difficulties find acceptable. Successful interactions are built on sensitivity to the wishes of the person, on a moment by moment basis. It is important that both parties coordinate their body language, humour and timing to demonstrate a close and friendly relationship, which is both professional and on the terms of the direct payments employer.     

Environmental hazard and disabled people: from vulnerable to expert to interconnected

Why are disabled people disproportionately affected by the impacts of environmental hazard, and is it really only their relative poverty that makes them so vulnerable? What might disabled people contribute from their experience of negotiating barriers to designing responses to the challenges of environmental hazard? Can the lived experience of inter-dependency, as opposed to individual independence, contribute to the radical rethinking of our relationships with the environment, other sentient beings and each other? Drawing on a short scoping study, this article reviews the multiple causes of disabled people’s vulnerability, and goes on to ask whether the experience disabled people enables them to become valued contributors, rather than just members of a vulnerable group. We also explore possible reasons for the lack of inclusion and diversity within the environmental movement, and suggest that the disability and environmental movements might make a more common cause.     

The Exclusion of Disabled People from Positions of Power in British Voluntary Organisations

Disabled people are excluded in various ways from a wide range of social privileges, activities and institutions. Voluntary and charitable organisations promote themselves as champions of disabled people in their struggle for access to the ordinary choices and opportunities of everyday life. This paper reports the findings of an empirical study which demonstrate that in voluntary agencies governed by able-bodied people, disabled people are excluded from positions of power and influence, and they experience the same sorts of barriers and constraints as those with which they are confronted in the wider world. Furthermore, the development of agencies governed by disabled people themselves is constrained by their lack of access to money, staff and other resources.