‘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.     

Tales of Hidden Lives: a critical examination of life history research with people who have learning difficulties

This paper explores the use of life history research with people who have learning difficulties. [1] A number of strengths and weaknesses associated with the life history as a method of imparting life experiences are examined. Particular emphasis is given to the dilemmas that researchers may face in explicating the life histories of informants labelled as having learning difficulties. With reference to literature on narrative-based research and by drawing upon my own research experiences, I will argue that life histories reaffirm the personal in social theorising, whilst providing a methodology in which individual and social worlds may be drawn together. In addition, eliciting life histories may promote a vivid sense of the research process, thus demystifying the often over technical and jargonised nature of social scientific study. On the down-side, I will suggest that images of the 'imaginative researcher' and 'articulate informant' portrayed in much life history literature, threaten to stifle researchers' concerns with the inclusion of people with learning difficulties. Furthermore, I will draw attention to dilemmas that arise in making links between an individual's life history and social theory. Finally, problems relating to issues of bias and power are explored. In research involving people with learning difficulties, it is concluded that life histories cogently expose the experiences of people so-labelled and therefore deserve further usage albeit with critical assessment.     

Issues in the development of a computer-based safety programme for children with severe learning difficulties

In the last decade, professional interest in and awareness of the sexual abuse of children has increased dramatically and has led to the development of safety programmes which aim to teach children a range of personal safety skills (Tutty, 1992). These efforts have previously concentrated on children in mainstream schools, but there is growing recognition of the need for parallel concern for children in vulnerable groups such as those with learning difficulties. The present paper outlines the development of a personal safety prevention programme for children with severe learning difficulties. The programme has incorporated work by Tutty (1992, 1994) and others who argue for a more developmental view in designing such programmes. Concepts such as the child's understanding about authority figures and moral development have been integrated into the programme, which utilizes multi-media technology. As this is a computer-based programme, the reason for such a medium rather than previously implemented presentation (e.g. books, film) are discussed. Views of the participants evaluating the implementation of the teaching package are also described. © 1998 John Wiley & Sons, Ltd.     

Listening to care-givers: The community,work and family interface

Vic Riley talks about families challenging and contesting many assumptions about their role in long-term care-giving. His reflections invite the reader to revisit narrow and restrictive images of people with learning difficulties as dependent upon their parents for the provision of care and reveal a powerful picture of changes in the organisation of family life that have taken place in one small-town community. The role of the community in facilitating such transitions cannot be underestimated in the lives of care-givers and the people with learning difficulties they support. This account provides a compelling picture of changing aspirations amongst families involved in care-giving and the reader is invited not just to read it, but to make sure it amplifies their personal understandings and assumptions.     

Self-advocacy for People with Learning Difficulties: Does it have a future?

Within such a short-time self-advocacy has become not only fashionable amongst organisations of people with learning difficulties, but also with service providers and non-disabled individuals who have worked in traditional services. The concerns are that self-advocacy has become a process of consulting with users about what they want from services which are usually designed and delivered by non-disabled people. This had led to people recognising and accepting choices that are on offer by non-disabled people. As a consequence an artificial boundary around self-advocacy has been created which has led to people only speaking up about what society is prepared to make available (usually in form of segregated and supervised services) rather than challenging the (lack of) power that people with learning difficulties have in their lives. For people with learning difficulties to gain real change in their personal lives self-advocacy needs to be developed to ensure they not only have the communication skills, but have an appreciation of the importance of changing rules, policies and laws which institutions, local authorities and Governments make to ensure their rights are protected. If they have an appreciation of laws and policies it will result in real change and self-advocacy won't be a tool for service providers. Also, self-advocacy must include speaking up about alternatives to choices being offered, recognising the importance of supporting one another in common areas of concern and to challenge the political system to legislate to provide relevant changes. I have developed a self-advocacy framework model which includes all the elements needed to advocate and achieve permanent change.     

In the Frame: photovoice and mothers with learning difficulties

This paper presents the results of a photovoice project involving mothers with learning difficulties. Photovoice is a technique that challenges the established politics of representation by putting people in charge of how they document their own lives. The authors describe how the project was carried out and the problems they encountered. Analysis of the content of the mothers' photo albums in the context of their own personal stories throws light on both their individual lives and their collective experience. The results challenge discriminatory views of the women as different mums.     

Practice educators’ experiences of facilitating and assessing student values and ethics learning: constructing dialogue

This study explored the experiences of practice educators in facilitating and assessing student values and ethics learning. Three practice educators in the North of England were invited to explore their experiences through semi-structured, in-depth interviews. Responses were coded using Interpretative Phenomenological Analysis. Interventions to manage discontinuities between students’ personal and professional values were explored alongside the rationale for holding these two as separate entities. Using a pedagogically informed concept of professional self-location, findings that illustrate both difficulties and successes with these strategies are presented within two major themes, Conceptualisations of Personal and Professional Values, and Constructing Dialogue. The critical functions that dialogic learning serves in the practice educator repertoire are discussed, along with recommendations for the training, support and continuous professional development of practice educators.     

Just Say 'No'? Alcohol and People with Learning Difficulties

This paper analyses critically the scant literature which exists on the role of alcohol in the lives of people with learning difficulties. Though the research evidence is largely insecure, it does seem relatively clear that people with learning difficulties drink considerably less and abstain in higher numbers than the general population. In spite of this, the literature is predominantly characterised by a focus on the potential dangers of excessive alcohol consumption. In contrast, the possibility that a great many people with learning difficulties may have their access to alcohol debarred is not considered to be a problem requiring attention. It is argued that this is based on a failure to appreciate the cultural significance of alcohol for most people, and that the discourse on learning difficulties is being underpinned by a concern with physical, but not cultural access.     

Cash payments in context: (self-)regulation in the new social relations of assistance

Cash payments to meet social care needs offer the possibility for the direct employment of personal assistants using public funds. Empirical work internationally has identified the benefits of cash payments. However, there has been less interest in the relationships between employers and their employees. This article offers some reflections upon the employment relationship from the perspectives of employers who have learning difficulties and their personal assistants. The study involved eight employers, their supporters and their personal assistants in an English city. A grounded theory approach was utilised and interviews were analysed using a framework approach. This article argues that the relational aspects of direct employment arrangements have not been adequately considered in academic literature and the policy framework. These insights can add to debates around how social care support mechanisms can offer responsive assistance whilst questioning the assumed ‘empowering’ effect of an unregulated market.     

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.     

Individual Planning with Adults who Have Learning Difficulties: key issues - key sources

For many people with learning difficulties the quality of individual assessment and planning can play a crucial role in their personal development. However, for many service providers, and service users, there is limited knowledge of current approaches and recent developments in this area of work. This article aims, then, to provide a brief overview of the key issues and key sources of information in the field of individual planning. A number of issues relating to the implementation of Individual Programme Plans are discussed. Particular attention is paid to the development of more recent approaches, such as Personal Futures Planning, which aim to place greater emphasis on self-advocacy and the involvement of 'non-service providers' in assessment and planning.     

Views of People with Learning Difficulties about Current and Future Accommodation: the use of focus groups to promote discussion

There is growing emphasis on inclusion as a central philosophy in services for people with learning difficulties in the UK, Europe and the USA. Coupled with this is recognition of the need to actively involve people with learning difficulties in the research process through the use of more inclusive approaches. This paper reports the use of focus groups as a strategy for data collection from people with learning difficulties in a project that sought to review existing accommodation and support. A number of important key themes emerged relating to the importance of social networks, inclusion, reciprocal relationships, privacy and security. The implications arising from these findings for the provision of accommodation and support are considered. Furthermore, it was concluded that focus groups are potentially a valuable approach in research that seeks to actively involve people with learning difficulties.     

Sex Education Programmes for Students with Severe Learning Difficulties in Further Education and the Problem of Evaluation

This paper is based on a qualitative study of the evaluation of sex education programmes for young people with severe learning difficulties. In an area so fraught with dilemmas and controversies, any such research will be problematic and tentative. The approach to evaluation described here is one which attempts to realise the right of people with learning difficulties to make informed choices. The course aims both to provide students with information which has traditionally been denied to them and to promote greater self-confidence. The evaluation methodology which has been developed embodies principles which seek to empower young people with learning difficulties. The questions which arise reach not only into the lives, feelings and values of individuals, but also confront the oppression of people with learning difficulties in our society.     

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.     

Listening to Hidden Voices: Power, Domination, Resistance and Pleasure within Huronia Regional Centre

A great deal of material has been written regarding the effects of institutional living on people with learning difficulties. Much of this literature focuses on the negative aspects of institutionalization and views the individual as 'products' of these experiences. This paper argues that adults with learning difficulties are active participants in creating their own sense of cultural identity and community. Stories of four adults with learning difficulties, who have grown up in an institution in Ontario are used to explore how they envision a sense of their community through their shared experiences.     

Concepts of access for people with learning difficulties: towards a shared understanding

This article explores both the process and outcomes of a seminar series on the concept of access for people with learning difficulties. The seminar topics chosen to foster dialogue across professional and disciplinary boundaries included access to information, education, employment, the law, health, leisure, community, past histories and future plans. The seminars brought together people with learning difficulties and their support workers, researchers and professionals, to examine the expert knowledge of people with learning difficulties in negotiating access, the role of practitioners in mediating access and the contribution of research to understanding access. The aim was to develop a rich, shared understanding of the concept of access for people with learning difficulties. However, a huge amount of ‘access work’ had to be done to achieve this. The article discusses that access work and proposes a multidimensional model of access and ways of promoting it.     

Insiders or Outsiders: normalisation and women with learning difficulties

This paper examines changing attitudes towards women with learning difficulties within the culture of normalisation. It builds on earlier critiques of the normalisation principle and, whilst welcoming these, argues the case for looking at women in particular. The authors review literature on sex education for people with learning difficulties to illustrate the ways in which gender has been ignored and women's sexuality has been treated. Writing from their perspective as lesbian feminists, they explore the oppressive nature of sex education in a culture that places a premium on normality. The paper ends with a discussion of alternative ways for women with learning difficulties to gain a sense of identity and belonging.     

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.     

‘Good faith and effort?’ Perspectives on educational inclusion

This paper considers what might ‘count’ as educational inclusion from the perspectives of six women who are both mothers of and teachers of children with special educational needs (SEN) and/or disabilities. The mother‐teachers draw on their own personal and professional experiences to consider meanings of inclusion in relation to ‘their’ children. Their voices suggest that it is the detail of daily interaction and the commitment to ‘good faith and effort’ on the part of both parents and educational professionals that matters. For the purposes of this paper I shall consider the discourses of SEN, learning difficulties and disability together, although I am aware of the danger of reductionism in doing so.