‘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.     

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.     

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.     

Contesting Practices, Challenging Codes: self advocacy, disability politics and the social model

This paper examines the relationship between Self Advocacy and the disability movement in Britain in the light of social movement theory. Using the concept of 'collective identity' as it is explored in social movement theory, the analysis examines why the disability movement's promotion of a strong disabled identity may be difficult to achieve for all its constituents, particularly people with learning difficulties. Additionally the concept of symbolic production within social movement theory is used to explore how the movement uses the social model of disability as its 'collective action frame'. It is argued realignment of this frame is taking place within the movement and is reflected in debates within Disability Studies about the role of impairment. The voices of people with learning difficulties remain silent in this debate. The paper concludes by arguing for the recognition of social, psychological and cognitive difference as pre-requisite to an inclusive theory and politics of disability.     

Crip theory and the disabled identity: why disability politics needs impairment

This article highlights the importance of recognizing both the ontology of impairment as it relates to the creation of the disabled identity as well as why articulations of the disabled identity being ‘crip’ obfuscate potential politics. Examining how the disabled identity has been cast as a coherent social and political category, rather than the messy and complicated identity it truly is, I argue the adoption of a post-structuralist orientation by activists and advocates is bad for disability politics. Providing two examples, the first focusing on a publicized rape case of a person with an intellectual disability and the second on the importance of disability rights claims based on visibility of impairment, I show how articulations like those made in crip theory can have serious, negative implications for the lived experience of people with disabilities. I conclude with a call for disability studies scholars to engage disability politics in their work.     

Deaf identity construction in Malaysia

This paper focuses on the identity creation processes of Deaf people in Malaysian society using an intersectionality approach to issues of identity, disability, and Deaf studies. Deaf people belong to a marginalized community and typically experience stereotyped, prejudiced, and stigmatized treatment from the hearing community, which has a serious impact on their social and personal identity development. Without sufficient information about the process of identity creation for Deaf people, the hearing community cannot reduce inequality nor can it increase social integration and stability for the Deaf community. There is a paucity of research about this identity creation process in Malaysia, and few studies have used identity-related theories and Deaf studies to examine the issue. This study uses a constructivist point of view, employing an interpretive phenomenological epistemology in order to construct insightful accounts of participants’ personal and interpersonal experience in mainstream society. The data was analyzed using methods associated with grounded theory and constant comparative analysis in order to reveal the extent to which they identify themselves, that is linguistic minority or PWD. The findings suggest that, on the one hand, mainstream society categorizes Deaf people as Persons with Disabilities rather than as a linguistic minority; on the other hand, without realizing it, Deaf people typically accept society's evaluation by identifying with it and playing the expected roles of PWD.     

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.     

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.     

Towards an Affirmation Model of Disability

In this paper we argue that a new model of disability is emerging within the literature by disabled people and within disability culture, expressed most clearly by the Disability Arts Movement. For the purposes of discussion we call it the affirmative model. It is essentially a non-tragic view of disability and impairment which encompasses positive social identities, both individual and collective, for disabled people grounded in the benefits of lifestyle and life experience of being impaired and disabled. This view has arisen in direct opposition to the dominant personal tragedy model of disability and impairment, and builds on the liberatory imperative of the social model. Critiques of the latter have been consistently expressed as, or interpreted as, re-affirmations of personal tragedy, particularly in relation to impairment. In this analysis the affirmation model addresses the limitations of the social model through the realisation of positive identity encompassing impairment, as well as disability.     

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.     

Invisible to Themselves or Negotiating Identity? The Interactional Management of 'Being Intellectually Disabled'

There seems to be a professional (and perhaps societal) consensus that the identity label of 'intellectual disabled' is an aversive, even 'toxic' one. Indeed, Todd & Shearn (1995, 1997) have advanced the suggestion that parents' concerns over the toxicity of the label led them to bring up their children in ignorance of their disabilities, and thus produce people who are 'invisible to themselves'. However, drawing on work in discursive psychology, we argue that their data (and further data from our own work) suggests rather that the social identity of 'being intellectually disabled', and its management in talk, is considerably more fluid and dynamic than the static characteristic of self implied by the construct of an all-embracing, 'toxic', identity. A person with an intellectual disability can, like any other, avow or disavow such an identity according to the demands of the situation in which they find themselves.     

Negotiating Psycho-emotional Dimensions of Disability and their Influence on Identity Constructions

This paper uses Foucault's concept of 'technologies of power' to explore the ways in which the psycho-emotional dimensions of disability are created and maintained within society. The manner in which gaze and self-surveillance operate on the bodies of people with impairments to leave them feeling worthless, unattractive and stressed is considered, and the effects of impairment on these processes are also discussed. However disabled people are not simply passive victims of this form of emotional disablism--many exercise agency and resist. The manner in which disabled people resist the negative stereotypes is described and the process of 'coming out' as a disabled person is offered as an example of a 'technology of the self'. This interplay of dominating and emancipatory forces is shown to contribute to a disability identity, which is fluid and which better represents the diversity of the disability experiences of disabled people than an essentialist disability identity.     

Public Documents and Legislation: The South Australian Juvenile Courts Act, 1971, and Community Welfare Act, 1972

Abstract

This study of social work practice and disability follows the history of two fields of disability: mental illness and intellectual disability. Of particular interest are two key policy influences in the disability sector, deinstitutionalisation and normalisation. The extent to which deinstitutionalisation and normalisation have brought real benefit to people with disabilities is examined from social workers' perspectives. The implementation of these policies and practices on the daily work of social workers is discussed. This research indicates that social work practice in these two fields involves significantly different foci and approach. The study found that the similarities and differences between the two fields of practice are influenced by the historical and contemporary developments in the care and control of people with disabilities.     

Disability Discourses for Online Identities

Beneficial effects of the online medium have been reported for disabled people in terms of providing a 'levelling ground' where they can be treated on their merits as a person, rather than as a disabled person. If this occurs because impairment is invisible online, how then are disabled people managing disability disclosure within this social context? This paper addresses this issue discursively. Participants were recruited from various disability organisations in New Zealand and were invited to take part in an online interview. A 'choice to disclose' repertoire was identified and was organised around three key resources: relevance, anonymity and normality. Embedded within each resource is the idea that the presence or absence of impairment is constructed as a feature controlled by the individual. Positioning identity within a subjectivity removed from impairment was made possible through these resources and was valued by participants. Political implications associated with the absence of impairment are discussed.     

Life histories as counter-narratives against dominant and negative stereotypes about people with intellectual disabilities

The history of intellectual disabilities is largely a story of discrimination and social exclusion portraying people with intellectual disability as abnormal and inferior. This article describes a particular methodological approach to inclusive life history research with a small group of women with intellectual disabilities in Iceland. The article documents how, through a four-year collaborative research process, the life histories became counter-narratives to dominant historical beliefs and stereotypes. In addition to the personal empowerment of the women and the construction of a collective memory, this project has also resulted in public sharing of their stories through speaking up and giving presentations, and thus potentially also changing the historical memory.     

Working with the Experts: collaborative research with people with an intellectual disability

This paper reports on part of a wider study concerned with the collaborative efforts of an inquirer and six people with an intellectual disability, to develop a grounded theory explaining the processes by which these informants manage the relationships within their personal communities. The study was conducted through a series of in-depth interviews with each informant; a process characterised by information sharing, tentative theory development and elaboration, and informants' checking the accuracy of the emerging theory. This inductive approach allowed not only an insight into the lives of each informant, but recognised the informants' expertise in matters concerning their own lives and thus facilitated the emergence of theoretical elements of relevance to the informants themselves. The focus of the paper is on the collaborative or partnership approach adopted. The outcomes of the research partnership are detailed and implications drawn for the role of research in the lifestyles of people with an intellectual disability.     

It takes a sister: sisterhood and Black womanhood in families of people with intellectual and developmental disabilities

This study explores the sibling relationships of Black women with sisters who have intellectual and developmental disabilities in the southeast United States including Georgia, South Carolina, Florida, and Louisiana. The researchers used disability/critical race theory to understand the perceptions and stigmas associated with disability relating to social, cultural, and psychological structures within sibling relationships. Results were captured in four themes: cultural perceptions of family and extended kin; sibling relationships; beliefs about the self as a sister; and siblings’ identities. The findings from this study will contribute to research in disability studies by providing a better understanding of the intersections of identities and the familial experiences of diverse families.     

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.     

Fatness as a disability: questions of personal and group identity

Both fat people and disabled people share common barriers to full societal participation and acceptance. While there has been a substantial amount of literature relating to these two groups as separate entities, there is a lack of contemporary research that investigates the relationship between fat and disability identity formation. The purpose of this qualitative study was to engage in a dialogue with fat individuals and explore the construction of their identities – whether or not they identified with having a disability and, if so, whether or not they viewed their fatness as a disability. Interviews with a sample size of seven participants who self‐identified as ‘fat’ revealed an unwillingness to adopt a disability identity based on their fatness.