Narratives of Leisure: recreating the self

Utilising insights from narrative theory this paper explores the role of narrative in the everyday leisure experiences of people with a mild intellectual disability. Drawing on our experiences with an Australian leisure service Live it UP! we develop the connection between leisure and storytelling in order to open up an innovative approach to working with individuals. The stories of people's capabilities that we draw on run counter to a dominant cultural story of lack associated with disability. Through a post-structuralist analysis we argue that narratives of leisure are a powerful social medium with the potential to produce change in an individual's life and immediate social relationships. Such an understanding is crucial for the development of alternative leisure support services which identify the person's needs, challenging the social positioning of people with an intellectual disability.     

Belonging: women living with intellectual disabilities and experiences of domestic violence

Women with an intellectual disability are under-represented in domestic violence research, yet they are one of the most vulnerable groups who are at risk of violence and abuse. This article aims to contribute to the domestic violence field by reporting on a narrative dialogic performative study, which utilised a feminist poststructural perspective to explore significant relationships and the concept of belonging in the lives of women with a mild intellectual disability. Four in-depth narrative interviews were conducted. The study found that the women shared similar stories of devaluation and rejection in childhood and hence the women’s search for belonging contributed to their vulnerability to exploitation and abuse in domestic violence relationships. The paper argues that gendered discourses and constructions of intellectual disability regulate domestic violence as a personal problem or way of life for women with intellectual disabilities.     

Fundamentals of Theory and Practice Revisited: Adult Clients With Mild ‘Intellectual Disability’: Rethinking Our Assumptions

There is considerable confusion surrounding the concept of ‘intellectual disability’ and great stigma attached to this label. This paper questions whether the concept is a useful one when applied to adults with mild learning difficulties and encourages less rigidity in categorisation. Some implications of a pseudo‐medical model are examined. Counselling for adults with mild intellectual disabilities has been much neglected. Some aspects of counselling these individuals are briefly discussed: expectations; communication style; exploring the client's idea of ‘disability’; accepting versus challenging ‘disability’; importance of relationships; exploring discrimination and abuse; depression and anxiety; and the danger of assuming a lack of understanding.     

The ideology of neuroscience and intellectual disability: reconstituting the ‘disordered’ brain

During the last two or three decades, neuroscience has changed how we understand brain functioning. This shift, which is re-conceptualizing the relationship between the materiality of the brain and consciousness, is bound to have implications for intellectual disability, which is commonly seen as a condition of the brain. At present, examinations of intellectual disability that deploy techniques and concepts from neuroscience constitute a growing research field that has been welcomed in some quarters of the disability research community. The purpose of this article is to urge for caution as regards this development. I argue that the neuroscience of intellectual disability is embodying ideological propositions that need to be problematized. By theorizing the relationship between biology and politics and examining neuroscientific publications on intellectual disability, I argue that this strand of research is underpinned by a discursive division between normal and pathological, that it therefore constitutes a continuation of understanding intellectual disability as a ‘disorder’ and that any firm separation between the ‘nature’ of intellectual disability and processes of power is inherently problematic. To be able to critically approach the neuroscience of intellectual disability, it is vital that disability researchers problematize the relationship between biology and politics.     

Suranho healing: Filipino concepts of intellectual disability and treatment choices in Negros Occidental

This qualitative study investigated the use of folk medicine by families for people with intellectual disability in the Philippines. Workers from Negros Occidental who support people with intellectual disability participated in semi-structured interviews. Findings show families seek the intervention of a folk healer before seeking primary healthcare support and a prosperous cultural use of folk medicine exists across the Philippines. Intellectual impairment is perceived by some Filipinos to be caused by supernatural forces. Socio-cultural constructs of intellectual disability probably influence health outcomes for this populace. If primary healthcare tools and resources for people with intellectual disability that are developed in higher-income nations are to have the potential to be transferred into other settings, understanding of attitudes towards alternative medicine is needed.     

The blurred edges of intellectual disability

The label of ‘intellectual disability’ can be a very blurred concept, because for those on the borders their label often arises from the interaction of the individual with their environment, from their socio-economic status, and from the social role which they choose to undertake. This paper explores the contested notion of intellectual disability in the context of people who have been in trouble with the law in England, and contrasts their situation with that of people who have been protected by best interests decisions under the Mental Capacity Act (England and Wales). People who are on the ‘borderline’ of having an intellectual disability, like any citizens, have a range of intersecting identities. Drawing on the notions of ‘interactional’ disability theory, we reflect on the shifting, relative nature of intellectual disability, and the need for the law to focus on support needs, rather than on impairment.     

The construction of intellectual disability by parents and teachers

This study examines how disability is constructed by significant adults in the lives of young people with intellectual disability. Specifically, we are examined how parents of those affected by intellectual disability and teachers in special schools construct intellectual disability in talk. Using focus group interviews, we examined whether stigma might be recreated or sustained within the family and school settings of those affected by intellectual disability. Parents and school staff constructed disability as negative, articulating difference from ‘the norm’, which was claimed to drive social isolation for affected young people. There was also evidence that parents and teachers attributed less agency to young people affected by intellectual disability. Discussion orients to how parents and teachers, see themselves as advocates for those with intellectual disability highlight, whilst at the same time recreating pervasive and subtle distinctions between children with and without intellectual disability.     

Self-advocates have the last say on friendship

This study reports the friendship experiences and aspirations of adults with intellectual disabilities. The findings of a larger study were reviewed by an expert group of self-advocates with intellectual disability. The expert group confirmed some of the interpretation of the original data and expanded on issues. Friendship is established as an issue of concern among adults with intellectual disability. Consequently, policy-makers and service providers need to be intentional about providing support for friendships. Participants asserted a positive self-identity of being a person with intellectual disability and how this could be a basis for friendship. Also, people with intellectual disability demonstrated how they should be considered experts in their own life experience and how they can be effectively included in the formulation, implementation, analysis and review of research.     

Intellectual disability and faith communities: perspectives of Catholic religious leaders

Faith communities create community and are important to many individuals with intellectual disability. However, relatively little is known about how intellectual disability is construed among faith leaders and the inclusion of people with intellectual disability in faith communities. To address these gaps in knowledge, we interviewed 12 Catholic priests, parochial vicars, and deacons to explore: their experiences with individuals with intellectual disability; their beliefs towards the involvement of individuals with intellectual disability within faith communities; and how religion informs their understanding of intellectual disability. We identified five religiously-anchored narratives of intellectual disability, and explore implications for individuals with intellectual disability and faith communities.     

‘My grandchild has a disability’: Impact on grandparenting identity, roles and relationships

Being a grandparent is an important and valued role for many older adults, who often have strong views about the type of grandparent they will be and what they will teach their grandchild. When their grandchild has a disability, grandparents may have to significantly adjust their expectations and interactions. This research explores if and how having a grandchild with a disability influences grandparents' sense of identity and enactment of the grandparent role. Using qualitative purposive sampling, semi-structured interviews were conducted with 22 grandparents of children with an intellectual and/or physical disability residing in Brisbane, Australia. A thematic analysis identified three key themes characterising grandparent's views: formation of grandparenting identity, styles of grandparenting, and role enactment. The results highlight the critical role of grandparents when a child has a disability, illustrating that the grandparenting experience and role enactment may be universal with only the context and delivery varying.     

Reason,grace and charity: Augustine and the impact of church doctrine on the construction of intellectual disability

This paper examines how early church doctrine influenced the construction of and response to intellectual disability. Though the main focus of the paper is on intellectual disability, much of the discussion is more broadly relevant to other types of impairments and human differences. The vehicle for this examination is the work of the key figure in the development and codification of church doctrine, Augustine, Bishop of Hippo (354–430 CE). The paper concludes that while church doctrine mitigated the stark association of reason and human value found in classical Greek thought, it did not engender an attitude of equality in this world. The ideas of grace and the ‘divine plan’, while opening up a limited space for acceptance and broad equality in the eyes of God, also reinforced and legitimated an inferior position in this world, leaving those considered to have an intellectual disability on the margins of social life and subject to a charity ultimately undertaken for the salvation of the giver, rather than for the welfare of the recipient. Subsidiary themes related to the construction of intellectual disability, such as ‘object lessons to the wise’ or as ‘monsters’, use as sources of amusement, innocence and their association with children and the charity ethic, are also examined.     

Overprotection in the lives of people with intellectual disability in Malta: knowing what is control and what is enabling support

A study of overprotection in the lives of persons with intellectual disability in Malta was carried out on the principles of inclusive research. Focus groups were held with people with intellectual disability, parents of people with intellectual disability, and those working with persons with intellectual disability. Overprotection is a disabling barrier. Its effects were identified in employment, leisure time, intimate relationships, and the use of public transport, money, and mobile phones. People with intellectual disability who experience overprotection live very structured lives. They cannot develop their skills, abilities, and potential. Furthermore, they cannot live their life on their own terms, but on terms determined by others. This creates a sustained dependence on others, especially the family. It is important that a balance is achieved between protection and enabling support. Persons with intellectual disability should be given the support they need to express their wishes and act on them.     

Exploring the specific needs of an understudied group: Children with intellectual disability in residential child care

Children and adolescents who live in out of home care in the child protection system are considered to be vulnerable to manifesting mental health disorders as well as other types of difficulties. This risk is greater in the case of children who display any type of disability. The aim of this study is to profile the state of health and well-being of a group of children presenting intellectual disability who live in residential care in a Spanish autonomous community and to compare these results with their non-disabled peers.     

Making disability conferences more actively inclusive

In this article I explore how generic disability conferences can become more inclusive of participants with intellectual disability. Increased inclusivity entails adapting to the support needs of people with intellectual disability, in line with the principles and practice of inclusive research. In the article I consider three specific areas where there can be more inclusion – access to information related to the conference, access to knowledge imparted during the conference, and financial issues. While many good practices have been developed in these areas, it is important to ensure that inclusion is catered for in a systematic and pro-active manner, so that people with intellectual disability have increasingly more meaningful and active roles within disability studies and disability research.     

Who Shall Decide? The Relevance of Theory and Research to Decision-making by People with an Intellectual Disability

In the context of normalisation and rights recognition, capacity for decision-making by people with an intellectual disability has emerged as an important but potentially contentious issue. Although increased community integration has opened up many new options, opportunities for greater autonomy are still unnecessarily constrained. Perceptions of limited competence, the issue of who has control over choices, and organisational structures are some of the factors which influence the extent to which clients are able to make decisions. This paper argues that, in order to resolve these issues, decision-making by people with an intellectual disability should be studied within the broader context of psychological theories of decision-making and human behaviour. Theoretical findings are reviewed and areas identified in which decision-making behaviour may break down. The relevance of theoretical research to issues of competence and empowerment, and to the small body of research on decision-making and choice by people with an intellectual disability is discussed. It is concluded that future research should focus on contextual variables, including the nature of the decision to be made, which affect decision-making competence in people with an intellectual disability.     

Making a Statement: an exploratory study of barriers facing women with an intellectual disability when making a statement about sexual assault to police

Many women with intellectual disability become the victims of sexual assault. Despite this, anecdotal evidence suggests that few cases are prosecuted. This qualitative study looks at the barriers that arise at the crucial first step toward the prosecution of a complaint - making a statement to the police. In this study, sexual assault workers and members of the New South Wales police service in the greater Sydney area, Australia, were interviewed to identify the barriers that arise when women with intellectual disability decide to make a statement to police following sexual assault. The study's findings demonstrate a need for greater awareness within the police service of police policies and procedures, and legislation, as well as greater co-operation between the police service and other organisations, which have an impact on the lives of women with intellectual disability.     

‘Being friends means helping each other,making coffee for each other’: reciprocity in the friendships of people with intellectual disability

Friendship is an issue of concern for many people with intellectual disability. The aim of the research presented in this paper is to understand how people with intellectual disability experience friendship and what friendship means for them. A focus group was held with seven people with intellectual disability, who are members of a self-advocacy group. An inductive thematic analysis approach was used to analyse the data. The people that the research participants identified as their friends were fellow self-advocates, family members, support workers and co-workers. They also identified behaviours and actions that foster friendship and those that undermine it. The analysis shows how the research participants identified as friendships those relationships which had an element of reciprocity, while linking a lack of reciprocity with the absence of friendship. It is very important for non-disabled people to understand the perspectives of people with intellectual disability they live and work with.     

Sibling Roles in the Lives of Older Group Home Residents with Intellectual Disability: Working with Staff to Safeguard Wellbeing

Abstract

When parents die, siblings of older people with intellectual disability are likely to take responsibility for oversight of their wellbeing and negotiation with formal support services. This study explored the roles siblings played in the lives of older people with intellectual disability who live in group homes, and the relationships between residents’ siblings and group home staff. The siblings of 13 group home residents and the 17 supervisory staff associated with these services were interviewed, initially face-to-face and then intermittently by phone over a period of three years. Data were analysed using an inductive analytical approach. Siblings valued the relationship with their brother or sister with intellectual disability and played a significant role in safeguarding their wellbeing. Sibling–staff relationships fluctuated over time, sometimes becoming tense and difficult. Few protocols guided these relationships. A principle-based framework could facilitate negotiation between staff and siblings about expectations of communication and decision making.     

Exploring the impact of health inequalities on the health of adults with intellectual disability from their perspective

Across every indicator of health inequality, adults with intellectual disability are disadvantaged. However, first-hand accounts from adults with intellectual disability exploring the impact health inequalities have for their health and are absent from the literature. The research was underpinned by a participatory approach, involving Men with intellectual disability as members of a steering group and through 20 interviews. Thematic analysis revealed how low income and reduced employment had a negative impact on the men’s physical and psychological health. New findings show how living in deprived areas exposed men to constant threats to their safety with an adverse effect on their health.     

Everyday life of persons with intellectual disability living in residential settings: a systematic review of qualitative studies

This article presents a systematic review of studies published between November 2010 and November 2014 about the everyday life of adults with intellectual disability as viewed from their own perspective. Everyday life refers to an interdisciplinary concept including approaches attentive to the mundane and to ordinary routines of social relations and practices. Twelve studies met the inclusion criteria. The review was carried out as an interpretive synthesis. Findings from the included studies revealed neglect of participation regarding the wishes, self-determination, choice and control of persons with intellectual disability in their everyday lives. This neglect demonstrates the limitations persons with intellectual disability face as agents and adult citizens in their everyday life, and shows violation of fundamental human rights.