Death Does Not Become Us

Abstract

The social issues of death, dying and bereavement represent important but neglected research areas, and such issues need attention both for practical reform and for deciphering what living with intellectual disability entails. The difficulties which life poses for people with intellectual disabilities may well persist in the times before and after death. As research issues they offer not only potential practical significance, but also a means of determining the social status and value of people with intellectual disabilities. This paper reviews the issues of death and dying from the viewpoint of sociological research and seeks to identify the ways death and dying have been treated within the research literature on living with intellectual disability. It is suggested that these issues have been discounted with some important consequences for the way intellectual disability is perceived. Important areas for research in this area are highlighted.     

Emotion and relatedness as aspects of the identities of adolescents with severe learning disabilities: contributions from ‘practice‐near’ social work research

This paper considers social and personal/individual approaches to researching identities of adolescents with severe learning disabilities; suggesting that vital components of emotionality and relatedness are largely missing from research and consequently from literature informing social care professionals. This leaves untapped, rich information and communication resources for research which may improve understandings of the experiences of a socially excluded group of young people. A psychosocial view of adolescent identity development, ‘subjectivation’, offers a way forward and a case study on ‘Billy’, drawn from a ‘practice‐near’ observational study, helps to illustrate this. Observation allows the researcher to be sensitive to the subtle ways in which identities of young people with severe learning disabilities are constructed, often with a sense of fragility and uncertainty. Continuities of experience between the young people and the rest of the adolescent community may be seen, but also the impact of living with impairment can be thought about in relation to the particular psychosocial circumstances of each young person. Knowledge of these processes enhances social work practice by encouraging workers to be sensitive to, and healthily curious about, the multiple ways in which identities of young people with severe learning disabilities are shaped in relationship with those around them and the wider social field.     

Factors affecting poverty among people with disabilities and antipoverty policies in South Korea

Previous studies analysed factors of poverty among people with disabilities without considering hierarchical or segmented structure by disability type or degree. Such approaches overlooked an auto-correlation problem among observations and overestimated the significance of the coefficient. In this study, a hierarchical generalised linear model (HGLM) was used to overcome these problems. This study found that sex, age, educational level, health condition, employment, being head of the household, area of residence, number of household members, and employment and work-life discrimination all had a significant effect on poverty among people with disabilities. The author suggests more detailed antipoverty policies.     

‘More time for what?’ Exploring intersecting notions of gender,work, age and leisure time among people with cognitive disabilities

This article explores intersecting notions of leisure among middle‐aged people with intellectual disabilities in the setting of the Swedish welfare state. The participants are recipients of long‐term disability services and have experienced the changing ideological frameworks of the welfare effort, which has recently focused on normalisation, inclusion and participation. Structured activities are arranged by disability services in order to normalise living conditions and provide recreation for disabled people. However, the range of activities is constrained by financial resources, by notions of gender and age and by an institutionalised emphasis on the work ethic – leading to constructions of leisure partly as ‘time beside’ where ‘free time’ activities should not interfere with the duties of the working week. The participants' limited resources and their lack of a strong voice limit their ability to demand their legal rights and leave many of them with ‘too much time with too little to do’. Key Practitioner Message: ● A common idea of leisure is the relationship between social and physical activities, well‐being and health; ● People with disabilities, regardless of age, engage in fewer leisure activities than the general population due to a lack of resources; ● Even with legal rights, the lack of a strong voice as well as institutional constraints limit their leisure opportunities.     

Mind the gap: the extent of violence against women with disabilities in Australia

A comprehensive national response to violence against women with disabilities is long overdue in Australia. Work to date suggests that the issue is endemic yet largely invisible. Responses at the national level are hampered by the lack of information regarding violence against women with disabilities due to under‐reporting and inadequate capture of the prevalence of this violence. This article explores approaches to collecting data regarding violence against women with disabilities in Australia and adds to the limited body of knowledge about the prevalence of violence for these women through interrogation of available data. Further analysis of the 2012 Personal Safety Survey data indicates that among women with disabilities aged under 50, 62 per cent have experienced violence since the age of 15, and women with disabilities had experienced three times the rate of sexual violence in the past 12 months compared to those without disabilities. These findings still do not represent the full extent of violence against women with disabilities, since the Personal Safety Survey samples only women who reside in private dwellings and excludes those living in disability care settings. Insight is offered as to what is needed to comprehensively capture the required data and the implications for policy.     

What influences BSW students’ attitudes towards cross-border marriage immigrants? The Taiwanese case of female marriage immigrants from China

Unlike existing supply-side employment of persons with disability (PWD) research in Korea, this study focused on demand-side issues. In this study, a qualitative research method was used to explore the perspectives of 20 human resource directors regarding employment of PWD in Korea. Based on the results of this study, the author recommends improving the job skills of people with disabilities, decreasing employer fears about industrial injuries among people with disabilities, reducing tax and social insurance costs for companies employing people with disabilities, setting up workplace accommodations, differentiating employment quota rate of PWD by occupational categories, offering information to companies about people with disabilities who are seeking a job, and stricter implementation of the quota system.     

Accelerating the translation of research into practice in long term services and supports: a critical need for federal infrastructure at the nexus of aging and disability

The nexus of aging and disability, characterized by the phenomenon of aging with a disability, will become more visible as the population ages and the number of people with disabilities surviving to midlife increases. This article addresses 3 interrelated issues critical to the fields of aging and disability: increasing demand for community-based long-term services and supports, a paucity of evidence-based programs demonstrating effectiveness in facilitating independence for those aging with a disability, and lack of a federal infrastructure to support coordinated investments in research-to-practice for this population. Suggestions for federal interagency collaborations are given, along with roles for key stakeholders.     

Effective personalised housing support for people with disabilities – case study analysis

International policy trends favour personalised approaches to housing support for people with disabilities. Previous research is inconclusive about whether these approaches are effective compared to group home support in the way they use government resources and benefit clients, partly because it does not usually consider the experiences of people who use the support. In this research we compared six new, innovative case studies of personalised housing support to previous research about group home support. We included qualitative data about client experiences, in particular regarding social networks, decision making, community service use and participation in domestic tasks. We found that client outcomes were positive in all four categories, while the financial costs to clients and government were similar to group home support. The results offer evidence that current, personalised approaches to housing support can be an effective policy option that allows people with disabilities to make choices about how to live and participate in their communities, without increasing the cost to government.     

Implementation of a Community-Based Approach to Dementia Care in England: Understanding the Experiences of Staff

ABSTRACT

Given the increasing numbers of people living with dementia, it is imperative that new, practical solutions are found to the issues faced by this group of people and their families. This article draws on findings from a qualitative study that explored the implementation of a community-based project to support people living with dementia in one local area in England. This approach has different names; in the United Kingdom it is Shared Lives or adult placement, which would be most comparable to family care in Europe and adult foster care in the United States. Interviews were conducted with 14 staff connected to the Shared Lives project. Interview data were coded using the normalization process theory constructs of coherence, cognitive participation, and collective action. Supportive program factors identified were a dedicated staff member and resources, and the availability of specialist knowledge and skills. Detriments to program success included lack of understanding about the service, perceptions it was a poor fit with existing practice, and wider organizational issues that negatively affected normalization of the intervention. Suggestions for future research go beyond staff opinions, stressing the importance of using a wider range of stakeholders and incorporating measurement of outcomes for people using the service.     

Western Christianity's two historical treatments of people with disabilities or mental illness

Christianity had two traditions of interpreting people with disabilities. The older tradition viewed disability as the result of sin. This tradition punished, separated, and restricted people with disabilities. It barred them from full participation in the Church and its rituals. However, as Christianity developed, a second tradition emerged that saw people with disabilities as needing compassion and that God accepted everyone. The second tradition saw people with disabilities as representing opportunities for the faithful to do charitable works. Christianity led the movement to provide assistance to people with disabilities until government later began to supplant its efforts.     

残疾人特殊性及其需求分析

近年来,我国残疾人社会保障事业取得了很大的成绩,残疾人社会保障和社会福利水平不断提高,但是我国残疾人社会保障还滞后于整个社会保障事业,残疾人的基本生活状况与健全人的生活水平还存在着较大差距,残疾人社会保障事业还滞后于经济社会的发展。本文认为残疾人社会保障不同于一般意义上的社会保障,只有在充分认识到残疾人特殊性及其需求的基础上,才能探索和建构出适宜残疾人的社会保障模式。     

Beyond Stigma: Visibility and Self-Empowerment of Persons with Congenital Limb Deficiencies

Goffman's (1963) theory of stigma holds that rejection by "normals" leads people with disabilities to adopt practices that help them to pass as normal or cover the immediate impact of their physical difference. However, such an attempt to mitigate the effects of stigma does not characterize the life histories of three adults with severe multiple congenital limb deficiences described in this paper. For them, self-display, within the context of American culture in the 1980s, is a strategy for self-empowerment in which the primary focus is the experience of the person with disabilities rather than the reactions of people who are "normal." Their adaptations suggest some limitations to the applicability of Goffman's theory in a changing social context.     

Building Care Management Competence in Services for People with Learning Disabilities

Correspondence to Paul Cambridge, Tizard Centre, The University of Kent at Canterbury, Canterbury, Kent CT2 7LZ, UK. Summary This paper examines care management arrangements in servicesfor people with learning disabilities. Its perspective is informedby research on the long-term outcomes and costs of care in thecommunity for people with learning disabilities (Cambridge etal., 1994) and by earlier experimental approaches to care managementin Britain. Building on arguments developed by the author ina position paper in 1992 (Cambridge, 1992), the focus here shiftsto the performance of mainstream care management in servicesfor people with learning disabilities, with an identificationand review of critical dimensions for reviewing competence.Lessons from earlier experimental and demonstration approachesare used to inform the analysis and to construct pointers forcommissioners or providers who are looking to assess the effectivenessof care management arrangements in learning disability withintheir own service systems.     

发展型社会政策视角下的残疾人福利研究

残疾人是社会中的弱势群体。对残疾人的关爱程度体现着一个社会的文明和发展程度。在党和国家领导人的高度重视下,我国残疾人事业取得了较大的发展。但仍滞后于社会经济发展水平,主要体现在福利水平仍局限在保障残疾人最低限度生活的经济救济上,而对促进残疾人发展的教育和就业扶持不够。笔者从发展型社会政策视角出发对残疾人问题进行较为深入的探讨,提出要建立关爱残疾人的长效机制,鼓励投资于残疾人教育和职业培训的社会支持模式,以试图为残疾人社会问题的解决提供一个崭新的思路和途径。     

Representing personal and common futures: Insights and new connections between the theory of social representations and the pragmatic sociology of engagements

To understand social issues and practices such as those related to climate change and technological change that are clearly future-oriented – collectively experienced events that are “not yet” – and co-constructed by different actors, we need nuanced conceptualizations of how people think about, negotiate and co-create futures that allow us to understand not only what people (can) think and do about future-related issues but also how that happens, what for and with which implications. However, so far, one of the key theoretical approaches that has conceptualised how people make meaning in situations of change and uncertainty – the socio-psychological social representations theory (SRT) – has not often engaged with the future or with different forms of temporality. By contrast, the French pragmatic sociology of engagements and critique (PS) has engaged with these notions, conceptualising them in relation to materiality and a plurality of moral orientations – two dimensions often seen as key to how collective futures are made and imagined. To offer a more nuanced and systematic conceptualization of how people represent the future and with what consequences, this paper will present, compare and synthesise SRT and PS, as a first step towards an interdisciplinary research agenda on social change and representations of the future.     

Who am I when I don't know who I am? The problem of personal identity in infants and elderly with cognitive disabilities

This article addresses the problem of whether we can speak of personal identity in cases of infants or elderly with cognitive disabilities as hydrocephaly or dementia, lives that could be considered borderline in terms of personal identity because they lack certain characteristics normally considered indispensable for personal life. Taking as a reference recent discussions on personal identity, particularly the narrative theories of Hilde Lindemann, Françoise Baylis and Marya Schechtman, the article analyses in what sense, under what assumptions, and in what way such a thing could be defended. Finally, some problems and objections to these approaches are considered.     

Considerations in Care for Individuals with Intellectual Disability with Advanced Dementia

Abstract

A number of physical, psychosocial, or ethical issues related to the care of the individual with advanced dementia are reviewed and related to individuals with intellectual disabilities. The sources used include the published literature and illustrations drawn from personal observations. The author notes that through anticipation and early planning, advanced directives and service planning (which looks to adaptation of services and other care management interventions), can effectively impact care at the end. Areas that need to be addressed include technical information, including a review of and, as appropriate, adaptation of general advanced dementia resources, relief, rest, support, reassurance, receipt of on-going information, participation in planning, a sense of humor, and appreciation. Also noted, are the differences experienced because of the presence of paid staff as carers and residence outside of the family home. It is concluded that, although the goals of quality care is the same for all people with advanced dementia, the process by which to reach these goals often needs further consideration and adaptation for people with intellectual disabilities.     

Jobless or Working Poor in the Kyrgyz Labour Market: What Role for Social Policies?

This paper attempts to identify the multiple aspects of vulnerability in the Kyrgyz labour market. Particular attention is devoted to the working poor and precarious workers. This analysis is undertaken using the Kyrgyz Poverty Monitoring Survey, which is the only survey to date that allows a comprehensive analysis of poverty and labour market outcomes in the Kyrgyz Republic. The period under investigation covers the years 1997 to 1998, for which data are available. The results point to the extreme vulnerability of individuals with less education and women, who cumulated a high risk of being unemployed, of remaining longer in unemployment, of being discouraged unemployed and, if employed, of being low‐paid or working in precarious jobs. Other groups facing a high risk of exclusion, both from and within employment, were people with disabilities, individuals living in rural or depressed areas, young people and internal migrants. The multiple aspects of vulnerability in the Kyrgyz labour market, in particular the large overlap between work and poverty, have important implications for the design of effective social policies.     

YOUNG REFUGEES TALK ABOUT WELL‐BEING: A QUALITATIVE ANALYSIS OF REFUGEE YOUTH MENTAL HEALTH FROM THREE STATES

Young people from refugee backgrounds face enormous challenges in the settlement process within Australia. They must locate themselves within a new social, cultural, geographic and adult space, yet also try to find security within the spaces of their own families and ethnic communities. Traumas of the past can mix with painful experiences of the present. The stressors in the lives of these young people can be both complex and diverse. This paper explores the nature of these stressors among young people from refugee backgrounds living in Australia. It is based on in‐depth interviews with 76 young people from refugee backgrounds now living in Brisbane, Adelaide and Perth. A qualitative analysis of the impact of these stressors as well as the coping strategies employed are discussed. It is argued that trauma exists within a life continuum and that approaches to supporting young people in these circumstances should be wary of limiting their focus to biomedical categories such as Post Traumatic Stress Disorder or Acculturation Stress and instead focus on a wider social context.