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.     

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.     

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.     

Subversive political praxis: supporting choice, power and control for people with learning difficulties

This paper is drawn from research conducted with gay and bisexual men with learning difficulties, a project that included participants' various struggles to self-identify within these alternative sexualities. Significant parts of this identity work were mitigated by participation in what is referred to here as 'politically radical support groups'. Three facilitators of these groups, professionals in the areas of sex education, were interviewed and a common itinerary was uncovered, namely a subversive and political praxis. At its heart, such praxis argues that educational endeavours for people with learning difficulties must not only account for disabling practices, but more importantly, maximally prioritise the mitigation of such prejudice within educational activities. Furthermore, it is argued that political praxis is not merely theoretical; six practical strategies are offered. In these ways, caregivers are offered concrete approaches to (genuinely) support the choice, power and control for people with learning difficulties.     

Trying to Get it Right: undertaking research involving people with learning difficulties

This paper uses criteria defined by Zarb to describe research undertaken with people with learning difficulties, in the context of an emerging emancipatory paradigm. First, the paper addresses the question: Who controlled the research and what it was about? It considers consultation with people with learning difficulties, the influence of public service organisations and the ethical committee. Secondly, the paper evaluates how far disabled people were involved in the research process, and discusses issues relating to the inclusion of people with learning difficulties as respondents, obtaining informed consent and the involvement of carers in interviews. Finally, the paper discusses the questions: What opportunities existed for disabled people to criticise the research and influence its future direction? What happened to the products of the research? The role of a pilot study, opportunities to provide feedback and dissemination strategies are described.     

Men with learning difficulties doing research: challenging views of learning difficulties

This paper explores the views of men with learning difficulties living in a secure environment. Reflecting findings from a doctoral thesis based upon a research project where the participants looked at the processes and concepts of research, the dialogues within the study were analysed using critical discourse analysis. Thesis aims relevant here include investigating given ‘truths’ about the positives of having a learning disability. The men are not only categorised as having a learning difficulty, but also have the added stigma of being offenders, and commonly having mental health issues which expose them to the worst of myths surrounding learning difficulty. Despite this, the findings suggest that the men are very positive about their lives – reporting that they have many attributes and talents – and view having a learning difficulty as an advantage at times. This affirms Foucauldian ideas on the way that dominant knowledge may be challenged.     

Research and empowerment: involving people with learning difficulties in oral and life history research

This paper takes as its central theme the argument that inclusive learning disability research has the potential to be empowering for the people who are involved in it. The author draws from two oral and life history research projects to explore the multiple uses of story-telling and the multi-layered picture of learning disability history that emerged. People with learning difficulties were involved in all stages of the research process, contributing their stories as oral and life historians but also co-researching written records in a bid to know and understand more about their own and other people's past lives. The research enabled participants not only to tell their stories but also to reflect on them, to develop new insights into their meaning and to see them in a wider social and political context.     

Ethical challenges in researching in group homes for people with severe learning difficulties: shifting the balance of power

Our aim in this paper is to open up debate about informed consent. We do this by presenting stories from group homes where staff have frustrated our research efforts and marginalised the interests of people with severe learning difficulties. We problematise normative ethics and argue that in some circumstances the basic principle of informed consent should be waived for employees of human service organisations. We maintain that, in such circumstances, researchers and an organisation’s senior managers can still act in a manner that is consistent with the broad aims of ethical regulation. We consider the role of Research Ethics Committees and suggest that in order to fully consider the conflicting interests of multiple stakeholders, the application of different ethical theories is required. A requirement for making balanced ethical judgements is to see outside the extant dominant view of ethical research standards and behaviour.     

'She Has Different Fits to Me': how people with learning difficulties see themselves

People with learning difficulties often appear to experience significant incongruence between their categorical identity as someone with learning difficulties and their self-identity. This paper draws on research undertaken with 60 young adults, and their parents or carers to examine the nature of that incongruence. We conclude that it is based almost entirely in discursive relationships, whereas experiential and power relationships promote incorporation of categorical identity into self-identity. We call for more careful consideration and open discussion of the ways in which the categorical identity of people with learning difficulties is handled in discursive relations with them.     

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.     

Process and evaluation of a group intervention for mothers with parenting difficulties

Twenty-one mothers with severe parenting difficulties, including 12 children on the Child Protection Register, were involved in an intensive parenting intervention. The 4-month group-based package included psychotherapy to allow mothers to come to terms with past and present stressors, and direct and video work with mothers and children using a multi-dimensional model of parenting. Considerable positive change in interaction and child centredness was evident when before and after videotapes of the mothers and children were compared. Negative interaction dropped to one-quarter of the pre-group level and mothers were more effective in exercising appropriate control. Of the 12 children on the Child Protection Register, 10 subsequently had their names removed, with both remaining children returning to the mother's care from compulsory care. This compares favourably with area figures, suggesting that about one-third of children are removed annually from the register. The multi-dimensional model of parenting not only provided a basis for measuring mother's skills but a coherent focus for intervention.     

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.     

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.     

Interdisciplinary staff perceptions of an occupational therapy return to work program for people living with AIDS

The purpose of this qualitative study was to identify the perception of interdisciplinary staff members regarding the impact of a model work and independent living oriented program for residents in supportive living facilities. This study used focus groups and individual interviews to collect these perceptions. Staff members identified four areas of impact: utilization of a holistic and process-oriented approach, an ability to identify and work with the strengths of clients, emphasis on the learning of practical skills, and creating an intersection for all aspects of services. These findings point to the fact that staff members found the value that occupational therapy has to offer their overall programming by improving participation of clients with HIV in learning practical skills for use in their daily lives and in developing work related skills.     

Self‐harm by people with learning difficulties: something to be expected or investigated?1

A review of the literature exploring self-harm highlights variations in the way it is understood. A marked difference in approach appears to relate to the presence of a learning difficulty in the person utilizing self-harm. Linkage with abuse has been given credence as one possible explanation for self-harming behaviour in the general population and yet has received little consideration within literature regarding people with learning difficulties. This paper proposes that it is oppression and abuse which provide the context in which self-harm is used by many people with learning difficulties. Continually ignoring the 'message' in self-harm is to further traumatize individuals. Therefore a challenge is posed to look beyond existing responses to the use of self-harm by people with learning difficulties.     

Public Research, Private Concerns: ethical issues in the use of open-ended interviews with people who have learning difficulties

This paper is an exploration of the ethical dilemmas in open-ended interview research with people with learning difficulties. We address the possibility that research which gives voice to the experience of abuse, from the viewpoint of the victim, can itself be abusive. Such research is justified in terms of empowering, illuminating and disseminating the meaning that participants give to their lives. Yet every stage of the process raises complex ethical issues when research participants are drawn from vulnerable and powerless groups in society, and the focus for investigation can be deemed private. As a vehicle for our exploration, we reflect on our ethical dilemmas in researching the story of a young woman who has learning difficulties and has been the victim of various forms of abuse. We argue that ethical dilemmas cannot be overcome solely by Ethical Codes or even predetermined 'good practice'. They are integral to the whole research process and necessitate continuous explicit examination of decision making processes within research.     

Life History or 'Case' History: the objectification of people with learning difficulties through the tyranny of professional discourses

Case histories of people with learning difficulties tend to privilege information that is useful to professionals, such as IQ and medical diagnosis. Such information allows professionals to slot people with learning difficulties into categories which inform 'treatment' and aid prognosis. Case records, as they are currently constructed, appear to further silence an already oppressed group of people, and to objectify, pathologise and label them. The subjects of such case records do not appear to be treated as stakeholders in the case recording process: their voices are not represented in such writings. Case records do not appear to contain information about the lived experience of people with learning difficulties. Ignorance of the unique histories of people with learning difficulties is dehumanising and allows professionals to psychologically distance themselves. Once humanity has disappeared, it is possible to treat people as 'objects' that can be controlled through 'respected' professional theories and their discursive practices.     

Begging as work: a study of people with mobility difficulties in Accra, Ghana

Even though begging is illegal in Ghana, an increasing number of disabled people engage in it. Begging is not only abhorred by the law, but also regarded by many Ghanaians as stigmatizing and devaluing. Successive governments of the country and some non-governmental organizations (NGOs) have made efforts either to reduce or eliminate begging. The attempts made have, however, been unsuccessful and the disabled beggars involved have returned to the streets of Accra. The question is why is it difficult to reduce begging in the research area. While poverty, mobility needs, lack of education and employable skills and employment avenues are factors that explain the decision to start begging, it also seems that the ways in which beggars justify their activities contribute to its perseverance. The study aims at sensitizing policy-makers and other stakeholders in attempts to find empowering alternatives to begging.