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.     

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.     

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.     

What Adolescents Learn in Organized Youth Activities: A Survey of Self‐Reported Developmental Experiences

This research inventoried adolescents' reports on different developmental and negative experiences in organized youth activities, including extracurricular and community‐based activities. High school students' experiences were assessed using a newly developed instrument, the Youth Experiences Survey (YES). These youth reported higher rates of learning experiences in youth activities than in 2 other major contexts of their lives. Youth activities were associated with experiences related to initiative, identity exploration and reflection, emotional learning, developing teamwork skills, and forming ties with community members. The findings also suggest that different youth activities offer distinct patterns of learning experiences. Service, faith‐based, community, and vocational activities were reported to be frequent contexts for experiences related to identity, prosocial norms, and links to adults. Sports were a frequent context for those related to identity work and emotional development.     

Family, Community and the 'Idiot' in Mid-nineteenth Century North Wales

In mid-nineteenth century north Wales, and indeed in Wales generally, 'community care' of persons with learning disabilities aided by the Poor Law survived longer than in England, where institutionalisation in the workhouse or asylum became the norm. This prehistory of community care has been largely unexplored, largely because of the difficulties of obtaining data. After discussing the methodology, and discussing the Lunacy and Poor Law documents used as sources, this paper seeks to advance understanding by using longitudinal histories of individuals with learning disability to explore their varied experiences in the community. It examines the attitudes of officialdom, and the role of family and community, and concludes by suggesting key factors in determining individual life stories included the presence of family, the ability to work, the degree of 'difficulty' or 'dangerousness' they presented.     

‘Chocolate … makes you autism’: impairment,disability and childhood identities

This paper discusses perceptions and experiences of impairment and disability from the perspectives of learning disabled children, their parents and their social workers. The author reports on findings from her doctoral study that adults often fail to take into account the views and experiences of learning disabled children. As a result, these children developed their own interpretations of impairment and disability based on their experiences and interactions with others. Whilst this indicates that they are active social interpreters, it also suggests that adults should make greater efforts to inform and consult learning disabled children. The author concludes by reflecting on the relevance of these findings to contemporary theories of disability and childhood.     

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.     

Sense of meaningfulness,sources of meaning,and self-evaluation of economically disadvantaged youth in Hong Kong: implications for youth development programs

This study aimed to explore the direction of youth development programs for economically disadvantaged youth by examining how their sense of meaningfulness and sources of meaning were associated with self-evaluation. Based on a survey design of 373 low-income Chinese adolescents recruited from five schools located in districts with the highest percentages of low-income households in Hong Kong, the results indicate a positive association between their sense of meaningfulness and self-evaluation. The findings also show that the intrinsic sources of meaning (individualism, collectivism, and self-transcendence) were positively associated with self-esteem. The results suggest that extrinsic aspirations were not a major source of positive self-evaluation of Hong Kong Chinese adolescents living in low-income families. On the contrary, they derived life meaning from various intrinsic sources. Their perception of the intrinsic sources of meaning and sense of meaningfulness worked jointly to affect their self-evaluation. Given the value of existential meaning in youth development under economic hardship, practitioners and educators should work with low-income adolescents’ life process of awareness in order to bring them to the possibilities for richer and deeper experiences for personal development, relationship enhancement, community participation, and spirituality enrichment. They should also initiate comprehensive life skills training in all formal, nonformal and informal learning contexts.     

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.     

'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.     

Older adults' narratives about a flood disaster: Resilience, coherence, and personal identity

Older adults are a vulnerable group in a disaster and are more at risk of adverse effects as a result. This paper draws on the use of narrative theory in health and gerontology studies to examine how a disruptive disaster was storied. Narrative interviews were conducted with nine older adults aged over 65 years who had recently experienced a flood disaster. The participants' narratives about the disruptive event were integrated with past personal events that spanned more than seven decades. The disaster became a reference point for previous challenging experiences, which created biographical continuity, coherence and order over time. Furthermore, the disaster stories were about biography and identity, and showed how older adults made sense of the flood from a life-course perspective. The use of narrative approaches provides an insight into how the flood disaster was experienced, and reveals how four older adults storied their experiences of a significant life challenge.     

The Paradox of the Quality of Life of Adults with Learning Difficulties

This paper is based on an empirical survey conducted in 1995 in Hungary. Data came from a stratified random sample of about 1300 adults with learning difficulties from all over the country. The author combines qualitative and quantitative methods in analysing the quality of life of people with learning difficulties and takes into consideration that their quality of life is as much determined by sociological factors as by the biologically and educationally understood level of difficulties. The paper shows that success in education and in the labour market does not equate to successful social integration. The quality of life of adults with learning difficulties is sometimes better in social circumstances which are less favourable for high achievement in education and in the labour market. Though the people from more privileged backgrounds may seem to lead a more active and social everyday life than those with working class origins they are still considerably less integrated in their social environments.     

Room at the academy? People with learning difficulties and higher education

This article considers the contributions of people with learning difficulties to an undergraduate degree programme in Learning Disability Studies at the University of Manchester. It begins with an evaluation of models of disability and their implications for the study and production of knowledge about learning disability. It then goes on to explore the role of people with learning difficulties—and the place of their experiences and knowledges—both on the Learning Disability Studies programme and within the academy. Drawing on the experience of the Learning Disability Studies programme, it argues for the inclusion of people with learning difficulties in learning, teaching and research.     

Deinstitutionalization, social rejection, and the self-esteem of former mental patients

Modified labeling theorists have long argued that the stigma of mental illness has important consequences for the lives of people with mental illness. We propose that social rejection is an enduring force in the lives of people with mental illness and that these experiences are central to understanding the poor self-concepts described by many former psychiatric patients. We explore changes in a cohort of recently deinstitutionalized mental patients' (N = 88) self-esteem and experiences with social rejection using data from a three wave panel survey conducted while institutionalized and over a two-year period following the patients' discharge from a long-term state hospital. Our results indicate that social rejection is a persistent source of social stress for the discharged patients. Moreover, these experiences increase feelings of self-deprecation that, in turn, weaken their sense of mastery. Where the patients' received their follow-up care--whether in a community setting or in another state hospital--had little impact on their self-related feelings or on their experiences of social rejection. Our results provide further support for modified labeling theory and underscore the need to consider the dynamic relationship between stigmatizing experiences and self-related changes.     

Toward Understanding the Child's Experience in the Process of Parentification: Young Adults' Reflections on Growing up With a Depressed Parent

This article reports on a qualitative study with 21 young adults who grew up with a depressed parent. We examined how young adults make sense of their childhood experiences of parental depression and how their retrospective reflections help us to understand the experiences of children and the processes of parentification. Participants recounted that their childhood consisted mainly of actions in the service of family well‐being. At that time, they reflected on their own experiences only rarely. In adolescence, there was an evolution toward a greater consideration for oneself and a repositioning within the family. In the discussion, we explore the therapeutic implications of this study—and in particular—the meaningfulness of silence in the family process of parentification.     

Quality of Life for People with Learning Difficulties Moving to Community Homes

Research concerning people with learning difficulties who have left institutions has typically investigated how well people 'adapt' to life in the community, and has often ignored users' own perceptions of the changes in their quality of life resulting from the move. In this study, eight people with learning difficulties who moved from a hospital and seven people who moved from parental homes to live in staffed homes in the community were interviewed. Choice, privacy, social life and relationships with their parents and staff emerged as important factors in participants' perception of their quality of life. Their relationships with their parents were found to be close, and in some cases their parents were overprotective. Staff were perceived in some cases as too controlling and in others as providing too little support. The findings indicate that people with learning difficulties moving to community residences have aspirations which encompass far more than a wish to adapt to life in the community, and their relationships with family and staff are a central factor in achieving such aspirations.     

The stress of progression from school to work for adolescents with learning disabilities em leader What about life progress?

Four students with learning disabilities were interviewed about their experiences at work. Two students, one male and one female, were high school seniors and two students, one male and female, were freshmen at a community college. Individual student interviews ranged from 2 to 4 hours. Informal interviews were conducted with students' teachers and parents. At the time of the interview, students had part-time, unskilled jobs in which they had worked for at least 6 months prior to participation in the study. Themes that emerged from analysis of the data included students' reactions to entering the workforce, stress in learning the job tasks, overcoming difficulties by developing coping strategies, learning work values and parental influences. Student interviews underscored the importance of practice runs and real life learning to reduce stress prior to entering the work force.     

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.     

Teachers and health workers: partners in primary health care. Experiences from Papua New Guinea

Primary health care (PHC) involves community health education. When health priorities in rural communities are focused on the vulnerable under-5-years-of-age group then one has to examine who actually cares for this age group and what are the most appropriate means of reaching them through health education programs. In the context of rural communities in Papua New Guinea the linking of school and community health programs has been taking place. Examples and insights from programs where teachers and health workers attempted to find appropriate channels for integrating child and adult education in order to improve the health status of the very young child are described. The school programs used a child to child approach to develop in children a sense of shared responsibility with adults towards better health for themselves, younger children in their care and the environment of the community. The goal was a health program that applied to the whole community, where division between child and adult learning activities was not so sharply drawn, and where formal school programs and nonformal community education programs were to complement and contribute to each other. A campaign against infant diarrhea and death through dehydration was implemented. As a result of a 3-day planning workshop a program was drawn up for schools and communities. The workshop covered causes of diarrhea, fluid loss and dehydration, simple preventive and curative measures, essential hygiene habits and current community practices. Teachers, health workers and community leaders fashioned a program of activities for school children and adults. It was discovered that adults often feel a barrier between themselves and the child's school learning. Also, a gap often exists between what is taught in school and what is needed and can be applied to community health priorities. Thus, an effective community health education program that includes both children and adults in an integrated program will need to cover the varying ages and groups of community members who, with different degrees of responsibility, take care of themselves and others.     

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.