Parents,services and system: an exploration of power dynamics in future planning among parent carers for people with disability

Interactions between services and families have significant implications for families planning for the future needs of a family member who has a disability. However, little research interrogates the implications of these relationships for parent carers’ agency in this planning. This qualitative study explored parents’ experiences with public and not-for-profit services during planning. Findings revealed varied and fluid power dynamics, with attempts by carers to shift to more productive power relations, which carried risks and costs. In a context characterised by systemic constraints, these shifts create an iterative planning process, and highlight the need to support parents to use power productively.     

Voting and the Scottish referendum: perspectives of people with intellectual disabilities and their family and paid carers

Voting is a human right for every citizen yet many people with intellectual disabilities do not vote or have little support to exercise their right to vote. This article explores views on the wider aspects of voting against the backdrop of the Scottish referendum using focus groups involving people with intellectual disabilities (n = 12), family carers (n = 7) and paid carers (n = 5). Findings revealed that people with intellectual disabilities had similar concerns to the general population about the referendum. Regarding voting, all groups identified the need to discuss issues and for practical support and accessible information to ensure informed choices were made when voting.     

Negotiating identities: the lives of Pakistani and Bangladeshi young disabled people

Research has generally amalgamated minority ethnic (all called 'Asian' or 'black') disabled young people's experiences and failed to acknowledge the multiple aspects of Asian and black disabled identities, for example how the combined attributes of race, ethnicity, religion, gender, culture, class and disability shape their perspectives and experiences. In an attempt to address this issue my doctoral research explored the experiences and perspectives of 13 young Pakistani and Bangladeshi disabled people. By drawing on the substantive and theoretical findings which emerged from my analysis in this paper I shall consider how multiple aspects of identity, such as ethnicity, disability and gender, affect this population's identity and self-image and how this makes their experiences different from white disabled young people and other minority groups' experiences.     

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

Abstract

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers.     

Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programs for older carers occupied a unique place within the service system. The present paper discusses a study that further explored the functions of specialist programs for this group through a comparsion with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.     

Caring for people with intellectual disabilities in poor rural communities in Cambodia: experience from ADD International

The burden of care for a disabled relative traditionally falls on women: mothers, wives, sisters. In Cambodia, Khmer culture is strongly structured around the family unit within which both the role of women and discrimination towards people with disabilities are sanctioned by social hierarchy, perceptions of weakness, and the concept of karmic merit. This article explores the impact of ADD International's project in Cambodia to support people with ‘intellectual disabilities’ – that is, learning disabilities – and aims to assess how this work affected carers, the majority of whom were women.     

The identities and social roles of people with an intellectual disability: challenging dominant cultural worldviews,values and mythologies

Intellectual disability is commonly conceptualised as stigmatised identity with which one has to live. However, within the literature the notion of a damaged identity is contested. The aim of this research was to explore the social construction of intellectual disability, with an emphasis on the identities and social roles of people with an intellectual disability. Informed by a contextualist perspective, this research was conducted within a participatory framework. The co-researchers involved in this research were 18 members of an advocacy agency. Photovoice and conversational interviewing were used to collect data and causal layered analysis was used to deconstruct the data. Analysis of the interactions that emerged across the causal layers revealed a complex dynamic of worldviews which served to construct people with an intellectual disability as incompetent, inherently different and not quite human. For genuine, transformative change to occur, developing an awareness and understanding of social processes, such as dehumanisation, is crucial.     

The pen,the receiver and the pump: Exploring young children's experiences of having a parent with type 1 diabetes

In this article, we explore young children's experiences of having a parent with type 1 diabetes (T1D). In our research we found that the children's knowledge about T1D was not age related, and that some had more in-depth knowledge than others. This seemed related to how and what the parents taught them about diabetes, the individual child's curiosity and interest, and the parent's history with fluctuating blood sugar levels. Several children were affected by their parents' diabetes in their daily life. Our research contributes to knowledge about how children's lives can be affected by having a parent with chronic illness.     

Uncertain identities and health-risking behaviour: the case of young people and smoking in late modernity

This paper argues that 'uncertain identities' are a distinct contributing factor to the residual and intractable level of smoking among young people. Further, it argues that the significance of this factor is increased by the specific social/historical context of late modernity. Findings from research with 15 to 16 year olds in the East Midlands of England are used to explore the role that smoking is perceived to play in constructing a self identity. A voluntaristic perspective is adopted on the use of tobacco, reflecting both the focus on young people's motivation to smoke and the tendency for many young people to perceive smoking as a matter of personal choice. Smoking was found to have a symbolic significance not only in terms of the presentation of self to others but also in terms of the reflexive construction of the self by those involved. The paper analyses the role of smoking in relation to self-image, self-empowerment and self-affirmation and it is concluded that for many young people smoking has certain benefits in terms of coping with uncertain identities.     

One million and counting: the hidden army of young carers in Canada

The term ‘young carer’ refers to those youth under the age of 25 years who provide substantial unpaid support to a family member due to factors including, but not limited to, familial or parental absence, disability, mental health issue(s) or problems with alcohol and/or other drugs. In the UK, national statistics have been integral to tracking the prevalence of young carers while serving as an important tool towards the development of (and justification for) a national legislative framework supporting these youth. In Canada, research and awareness for young carers remains in its infancy and available national datasets have yet to be examined in relation to youths providing unpaid caregiving. As a result, this research provides the first trend analysis of youth-based caregiving in Canada using census data for the 1996–2006 time-period. Methodological limitations of official statistics are also discussed in terms of conceptual and operational constraints limiting the full identification of all those potential young carers.     

Promoting choice and control in residential services for people with learning disabilities

This paper discusses the gap between policy goals and practice in residential services for people with learning disabilities. Drawing on a nine month ethnographic study of three residential services, it outlines a range of obstacles to the promotion of choice and control that were routinely observed in the culture and working practices of the services. Issues discussed include conflicting service values and agendas, inspection regimes, an attention to the bigger decisions in a person's life when empowerment could more quickly and effectively be promoted at the level of everyday practice, problems of communication and interpretation and the pervasiveness of teaching. We offer a range of suggestions as to how these obstacles might be tackled.     

My child is not my carer: mothers with physical disabilities and the well-being of children

This article describes a qualitative study on the experiences of mothers with physical disabilities. Two focus groups were held for mothers with young children and mothers of older children. Eight mothers also participated in in-depth interviews. All have a physical impairment, most are wheelchair users. This article focuses on (a) participants' attempts to ensure the physical and psychological well-being of their children; (b) their child-rearing philosophies and practices; and (c) the overall nature of the parent-child relationship. A range of parenting practices, experiences and relationships was reported. The variability of experiences notwithstanding, participants' life stories demonstrate a strong commitment to children, actions to ensure their care and well-being, and attempts to shield them from any burden related to the maternal disability. Whilst challenges and barriers were candidly reported, by and large, they do not overshadow the joy and fulfilment that these women derive from motherhood.     

Positioning,strategizing, and charming: how students with autism construct identities in relation to disability

Contrary to views that young people with the label of autism are incapable of engaging in collective cultural practice, this article examines how they construct identities through social interactions to belong, compete, and participate. In a multi-sited ethnography of high school students with disabilities, we focused on two students as they move across contexts of school, debate team, and home. Over two years of interviews and participant observation, these students demonstrated nuanced efforts to distance themselves from the ‘autistic’ label. These acts of positioning illuminated how they negotiate identities with the knowledge their interactions shape how people perceive their participation in different contexts. By following them across informal and formal environments, we could see how they transition across multiple social worlds and appreciate the combined power these contexts have on youth identity.     

Use of parent education to improve self-efficacy in parents of students with emotional and behavioral disorders

The results of a practice-based research project are described, in which parents of students with emotional and behavioral disorders (EBD) participated in a parent education presentation aimed at increasing parental self-efficacy. Results indicated that parents who participated did increase both their parental self-efficacy in regard to influencing their child’s school-related performance and helping their child succeed in school. Qualitatively, parents also reported the parent education was helpful and that they had tried suggested interventions at home. Though a small-scale pilot project, results are promising and suggest parent education is a feasible technique school districts can use to reach parents of students with EBD. Limitations and future directions are discussed.     

Community-based arts research for people with learning disabilities: challenging misconceptions about learning disabilities

This article presents some of the community-based artwork of a group of men with learning disabilities, who aimed to challenge some of the misconceptions associated with learning disabilities. People with learning disabilities regularly face many forms of direct and indirect stigma. The consequences of such negative perceptions may affect individuals’ social relationships and ensure that barriers are strengthened which prevent their full inclusion. The men in this project used a series of visual and creative methods to challenge some of these misconceptions by telling stories through art, demonstrating skill through photography, using poetry to talk about sexual identity and improvising drama and filmmaking to challenge stigma, and through sculpture expressed their voices. Thus, by doing so, they were able to challenge some of the stigma associated with learning disabilities, indicating that community-based arts research is a valuable way in which to promote the voices of people with learning disabilities.     

Social capital, social inclusion and services for people with learning disabilities

Both social capital and social inclusion have emerged as significant concepts for human services in the last decade and yet their inter-relationship remains largely unexplored. This article argues that, whilst they are similar in their vision for a healthy society, they adopt sufficiently different perspectives to stimulate and challenge each other. This can be well illustrated by reference to services for people with a learning disability. Commissioners and providers of learning disability services are encouraged through this article to harness both concepts in order to assist in the process of modernizing services and increasing life opportunities for the people they support. It is argued that it is not possible to understand the full consequences of adopting either theoretical position without an adequate understanding of the other. Examples are given of the implications of this for advocacy services, day opportunities, rural communities, transition and staff training.     

Picturing social work,puzzles and passion: exploring and developing transnational professional identities

ABSTRACT

Exploring and in turn developing professional identity is a challenge faced by social work programmes, nationally and internationally. This paper developed from the authors’ shared research interest in how social workers and students of social work develop and express their professional identities. We report findings from a workshop designed to explore how a group of social workers from different countries conceptualised social work identity, including the effects of transnational and cultural contexts. Our starting point drew on theoretical concepts developed in Wiles’s research, in which the term professional identity is used to convey multiple meaning, and the method developed in Vicary’s research which uses drawing to elicit data. We found that a collective identity is shared across national boundaries albeit, and ironically, that this shared identity has components that are not cohesive and are continually being redefined. In the participants’ own words, the notion of social work identity is always just out of reach conceptually, or ‘over the horizon’. Tensions in identity were also revealed, alongside a sense of passion or deep commitment. These findings complement and add to the existing literature on exploring and developing professional identity in social work.     

Holding the line online: exploring wired relationships for people with disabilities

Clearly, the Internet represents a huge new step in interpersonal communications. It offers people with disabilities the possibility of confronting the issues of time, space, communication and the body, but what happens when people with disabilities engage with the computer? Do they use the Internet to develop friendships and intimate relationships? Does online communication enhance self‐identity and social being? Do people use the Internet to transcend the vagaries of their frail and vulnerable bodies? Or are they simply ‘holding the line’ online, using the Internet as they would use a letter or a telephone? Is the Internet a chimera, a failed promise, for people with disabilities?     

The use of photovoice with people with intellectual disabilities: reflections,challenges and opportunities

Photovoice is part of the growing use of participatory research approaches with people with intellectual disabilities. In this paper we explore the process, opportunities and challenges associated with the use of photovoice with people with intellectual disabilities, illustrated through a research project entitled ‘This Is Me’. Photovoice requires researchers to share power and control in the research process and to tolerate uncertainty. Large investments in time and money are also required. These challenges, however, are outweighed by the benefits of the use of photovoice with people with intellectual disabilities. Photovoice creates a space where people with intellectual disabilities can meaningfully participate and exert control in the research process, and as such is an empowering experience. As a participatory research approach, photovoice is accessible and offers the opportunity for people with intellectual disabilities to develop new skills, confidence and experience inclusiveness in their own terms.     

The 3rd May,a photograph: identities of and beyond displacement

This article proceeds from a photograph. It does so to begin an investigation of the diverse sites within and beyond it, and the reflections of several enactments of nation, culture, belonging and non-belonging. The image in question depicts a group of children waving flags. It is an old photograph, possibly removed from our ‘present’, though it holds within it multi-temporal spaces into which we might enter. The aim of this article is to do just that – to enter the image, armed with all the things a researcher gathers in terms of background data, narratives and contexts, and examine the complex negotiations enacted within and beyond it. How does this group of flag-waving children impact on us today? This article explores the extent to which an understanding of a temporal enactment of nation in displacement might reflect on contemporary negotiations of citizenship, culture and representation.