‘He was a secret’: family narratives and the institutionalization of people with intellectual disabilities

This article examines family narratives concerning the existence of an institutionalized family member with an intellectual disability. A research study investigating the experiences of institutional survivors and members of their families in post-World War II Ontario, Canada reveals ambiguous family narratives in which the story of an institutionalized family member with an intellectual disability was absent or uncertain. Secretive family narratives and their impact on family life are discussed from the perspectives of siblings of institutional survivors. Drawing from narrative enquiry literature, the potential repercussions of false or ambiguous narratives on the lives of people with intellectual disabilities 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.     

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.     

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.     

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.     

From leisure and disability to disability leisure: developing data, definitions and discourses

Although both disability studies and leisure studies have grown to become influential subject fields in their own right, there has been little discursive exchange between the two fields. This article seeks to address these equally significant gaps in disability research within leisure studies and leisure research within disability studies. Empirical data examining the role of leisure in the lives of a group of young people with cerebral palsy are introduced to contextualise definitions and discourses of leisure and disability. The article demonstrates that, for many young disabled people, the role of leisure in tackling social exclusion remains within the realms of policy rhetoric, rather than everyday reality. The dissonance between these agendas and actualities is reviewed in relation to definitions and discourses of disability and leisure evident in wider social policies, and in relation to definitions, discourses and models of disability that remain dominant within leisure provision.     

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.     

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.     

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.     

Problems associated with choice and quality of life for an individual with intellectual disability: a personal assistant's reflexive ethnography

A gap exists between research and practice within the field of intellectual disability. In particular, researchers suggest that personal choice enhances quality of life. Following Bourdieu's suggestion to focus on improving the practice of theory rather than the theory of practice, this paper is a reflexive ethnography detailing my struggles to provide choice to an individual who, it turned out, cannot think in the ways necessary to make choices that would improve his subjective quality of life. A narrative is included with the hope of revealing social processes outside and within the field of intellectual disability and to provoke discussion regarding problems with choice and quality of life in the field.     

Contributions of tourism to social inclusion of persons with disability

Tourism, although a relevant part of the modern lifestyle in economically more developed countries, is even in these countries not accessible to all, with particular barriers existing for persons with disabilities. These barriers are not only physical, but also internal, cultural and social. Tourism and leisure have revealed many benefits for individuals with a disability, enhancing personal development, quality of life, recovery and contribution to social inclusion. This article discusses the potential of tourism for people with disability and presents the results of an exploratory study undertaken in Portugal aiming at a better understanding of this market and its profile, desires and constraints experienced when participating in holidays and leisure activities. This information should contribute to the debate on the potential contributions of tourism to improving social inclusion of persons with disability, while simultaneously permitting tourism providers to better integrate this group in their clientele.     

‘There’s a lot of places I’d like to go and things I’d like to do’: the daily living experiences of adults with mild to moderate intellectual disabilities during a time of personalised social care reform in the United Kingdom

Adult social care services in the United Kingdom have undergone a period of transformation over recent years, characterised by a drive towards personalised care. Concurrently, social care budgets have been significantly reduced. This study aimed to explore the daily living experiences of adults with mild/moderate intellectual disabilities, who are at risk of no longer meeting eligibility criteria for statutory support. Focus group discussions, which included both people with intellectual disabilities and support workers, were analysed thematically. Two broad themes are presented: independence and agency; and social capital and well-being. While some participants echoed ideas central to the personalisation narrative, a number of contextual barriers to achieving greater independence and agency were discussed. Moreover, greater independence was not a desired goal for all participants. The findings highlight the potential mismatch between personalised social care, as delivered within significant budget constraints, and the needs of adults with intellectual disabilities.     

Interviewing victims of sexual abuse with an intellectual disability: a dutch single case study

The approaching to use with people with an intellectual disability who are (suspected) victims of sexual abuse is a challenge for social professionals. Being at the mercy of professional facilities, the victims are in a vulnerable position. They have limited capacities to defend themselves against the intimidations of perpetrators and to deal with the consequences of the terrifying happenings. Finally, sexual abuse is a criminal offence. Much depends on the quality of the interviews. In the Dutch practice of forensic reactions to (suspected) sexual abuse of people with an intellectual disability, experience has been acquired with different types of interviewing.

With the help of a single case study between a health professional and a victim, these forms of interviewing are demonstrated. The professional pursuit is to let the client disclose what has happened in their own words. The study shows that in social health and welfare practices the professional task is to navigate between, on the one hand, the communicative space for the client to provide free recall and, on the other hand, the need to provide help to clients with an intellectual disability to verbalize inner cognitions and emotions.     

“I was Excited by the Idea of a Project that Focuses on those Unasked Questions” Co‐Producing Disability Research with Disabled Young People

In this article, we detail the politics and practicalities of co‐produced disability research with disabled young people with life‐limiting and life‐threatening impairments. We centre an ESRC‐funded arts‐informed co‐produced research project that has brought together a Co‐Researcher Collective of disabled young people. Co‐production is an established approach; however, our co‐researchers have led us to develop inclusive research practices that engage with online social research methods in innovative ways. As we detail our experiences, we aim to encourage disability studies researchers and others to adopt virtual environments when researching with and for the lives of disabled people.     

Disability and Discrimination in Statutory Child Protection Proceedings

Families headed by parents with intellectual disability [1] are among the most vulnerable in the community. Poverty, social isolation and the lack of adequate support services all threaten their well-being. People with intellectual disability who are parents must also contend with out-of-the-ordinary treatment in statutory child protection proceedings. Legal scholars writing mainly in the North American context cite cases in which the children of these parents have been removed despite lack of evidence of abuse or neglect, or when evidence was refuted or, indeed, even when the parent was shown to be providing adequate care. In cases of substantiated abuse and/or neglect, support has not been given to the parent or parents before their children were removed. In this paper, we describe these discriminatory actions and discuss the political, social and institutional conditions that have lead to such extreme consequences for people with intellectual disability who also happen to be parents.     

Young people’s leisure patterns: testing social age,social gender,and linguistic capital hypotheses

We analysed young people’s leisure activities in order to identify their leisure habitus, discover how they combined activities into leisure patterns, and examine how leisure patterns were socially structured. We argue that the effects of age, gender, and language on how young people’s leisure patterns are structured are mediated by social class. We found that leisure practices could be classified in terms of three habitus: the frequent leisure habitus, the cultural activity habitus, and the social vs. entertainment habitus. The different combinations of these three leisure habitus by young people resulted in four patterns which we refer to as social, omnivorous, entertainment, and religious leisure patterns. The association of leisure patterns with indicators of social position suggests that, as predicted by our theoretical framework, age, gender, and language effects are diminished once we take into account the mediating role of social class. Young people’s leisure practices are therefore socially differentiated, with young immigrants forming a vulnerable group that should be the particular focus of youth leisure policies.     

‘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.     

Personalisation,individualism and the politics of disablement

This paper assesses the social policy narrative personalisation, and particularly the implications of the narrative for disability politics. The advantages and disadvantages of positioning specific funding mechanisms within the narrative are explored. It is argued that personalisation is insufficiently aligned with collective aspects of empowerment. More particularly, it disproportionately emphasises improvements in individual autonomy through personalised support, and lacks reference to structural oppression or the need for collective forms of action that bring about structural change. It is further argued that personalisation lack a multi-faceted analysis of disability and disempowerment, and as a result also lacks any vision of a positive alternative society. In assessing personalisation, the positive and negative dimensions of disabled people’s freedom are considered. As a response to the apparent shortcomings of personalisation, the integrated living approach and Centres for Independent Living are considered important elements in an alternative narrative to personalisation.     

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.     

In search of a level playing field – the constraints and benefits of sport participation for people with intellectual disability

This paper presents the results of a study seeking to examine the experiences of people with intellectual disability in a sporting context. The research design employed an online, interviewer-completed questionnaire in both a standard and an easy English version designed for administration by a third party for those requiring assistance to respond. Questions sought both quantitative responses about levels of participation and qualitative responses about constraints experienced and benefits received from participation. The results of the study show high levels of participation reported by people who are independent or have lower to moderate support needs, whereas people with high to very high support needs had substantially lower levels of participation. Constraints are examined for both those who participate in sport and those who do not. For those who do participate, the benefits were identified as overwhelmingly social in nature, including belonging, companionship and achievement.