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.     

Reporting disability in the age of austerity: the changing face of media representation of disability and disabled people in the United Kingdom and the creation of new ‘folk devils’

Following its election in 2010 the UK’s Coalition Government has sought to implement radical restructuring of disability-related benefits justified by reference to the financial crises of 2007/08. In this article we examine how these changes have impacted on coverage of disability in the UK media comparing and contrasting coverage of disability in newspapers in 2010/11 with a similar period in 2004/05. Our analysis suggests that disabled people have become a ‘folk devil’ and that there has been a significant change in the way that disability is reported. Newspaper coverage in 2010/11 was less sympathetic and there was an increase in articles that focused on disability benefit and fraud, and an increase in the use of pejorative language to describe disabled people. An audience reception study suggests that this coverage is having an impact on the way that people think about disabled people.     

The ‘compliant’, the ‘pacified’ and the ‘rebel’: experiences with Swiss disability insurance

Switzerland’s social policies in the field of disability have been significantly reshaped over the last two decades by reducing the number of allowances awarded and by increasing the recourse to vocational rehabilitation measures. What stances do individuals who experience the implementation of these policies adopt? What kind of tests are they subjected to? How can we explain the posture they adopt – be it ‘compliant’, ‘pacified’ or ‘rebellious’ – when facing the (re)assignations of their identity and professional status? Drawing on interviews conducted with individuals who have recently been involved in programmes set up by Swiss disability insurance, we highlight their uncertainties and concerns relating to their place in society, as well as their reactions to disability insurance’s interventions.     

Constructing ‘disability’ in Myanmar: teachers,community stakeholders,and the complexity of disability models

This article explores Myanmar teachers’ and community stakeholders’ constructions of disability. We examine how various religious perspectives – particularly Buddhism – inform and shape understandings of impairment and how these beliefs intersect with a strongly medicalised construction of disability. However, in our discussion and exploration of the responses, we also found that the notion of two primary disability ‘models’ – namely the medical model and the social model – lack nuance, complexity, and socio-cultural consideration. Through examining teachers’ and community members’ perspectives of disability in Myanmar, we highlight the importance of socio-cultural variance in understanding local constructions of disability.     

‘The seal of approval’: referring adults with intellectual disabilities and challenging behaviour to community learning disability teams

This article describes a study that involved interviewing eight managers of residential services, who have made referrals to community learning disability teams (CLDTs) for challenging behaviour. Thematic analysis and a critical perspective are combined to analyse and interpret what referrers said about the process of the referral. The study found that managers referred people with intellectual disabilities to the CLDT primarily in order to manage organisational problems rather than to directly manage challenging behaviour. The referrals enlisted the services of professionals to legitimise the residential services, to confirm their practices and to provide credibility to existing decisions by managers. In referring a man or woman with intellectual disabilities to the CLDT, the managers submit themselves, their staff and the person with the intellectual disabilities to the power of the health and psy-complex professionals.     

The evolving construction and conceptualisation of ‘disability’ in Bhutan

This study – a year-long ethnographic exploration of disability and education in Bhutan – finds that two dominant discourses around ‘disability’ are entering Bhutan simultaneously: the discourse of the medical model of disability and the discourse of the social or human rights model of disability. In this paper, I argue that these two discourses are especially exposed in the Bhutanese context to be opposing forces in shaping local conceptualisation and construction of ‘disability’. By examining the Bhutan case, it can be seen that these kinds of disparate and contentious exogenous constructions of ‘disability’ occur everywhere in the world and negotiate with local constructions of ‘disability’ uneasily. Understanding the interactions of disability discourses in the Bhutanese context can help to understand the interactions of disability discourses writ large.     

‘Su guagua no escucha nada’: Ecuadorian families confronting the deafness of a child

In accordance with the social model of disability, this study proceeded from the assumption that parents’ experiences of a child’s hearing impairment reflect the circumstances of their lives rather than anything innate in the impairment itself. Few studies have explored the influence both of culture and social structure and of families’ economic and social resources. We studied families’ experiences of the diagnosis of hearing loss in Ecuador, a multicultural country in which family ties are strong but where pronounced social and economic inequalities persist and where many people have no access to health care. The study shows how inequality – and in particular the experience of poverty – shapes families’ experiences of acquiring a diagnosis and of trying to accommodate a child with special needs.     

‘It's afforded us a huge flexibility’: the impact of ‘Disabled Children's Access to Childcare Pilots’ on families with a disabled child in England

For many parents of disabled children, finding affordable and suitable childcare that meets their needs is very challenging. Research in the UK has shown that parents with disabled children experience barriers not just with cost, but also accessibility, the attitudes of childcare providers and in getting good information about sources of childcare. The Disabled Children's Access to Childcare (DCATCH) pilots was an initiative designed to improve access to childcare for disabled children in England. As part of an evaluation of DCATCH, qualitative interviews were carried out with 38 members of 22 families who had received support from the initiative. All of the families reported positive outcomes and highlighted: a beneficial impact on the parents' capacity to work; enjoyable experiences for the disabled child; increased confidence and independence for both parents and children; and the creation of time for parents to pursue other activities. The results of the DCATCH initiative support other research which argues that whilst cost is a significant factor around childcare choices for families with a disabled child, having confidence in the childcare provider's ability to meet specific needs (including complex health care needs) and providing positive experiences for the disabled child are also key, determining factors.     

‘A person with some sort of learning disability’: the aetiological narrative and public construction of Susan Boyle

Susan Boyle’s audition for the television talent competition Britain’s Got Talent attracted global attention and widespread media discourse. In this article, I would like to examine this discourse to consider how Boyle’s success troubles conventional constructions of both learning disability and celebrity.

I extend Ciara Evans’s recognition that learning disability is invisible to reflect on the media responses to Boyle’s impairment. This reflection notes that even within Boyle’s own discourse, she is loosely positioned as having ‘some sort of learning disability’.

Detailed attention is given to the aetiological account of the ‘brain damage’ Boyle ‘suffered’ at birth. The analysis will consider the correlation with scientific discourse, trauma theory and the imposed biography to suggest that the construction of Boyle as both contained and unpredictable is already implicit in the aetiological narrative.     

‘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.     

‘The invisible enemy’: disability,loneliness and isolation

Abstract

The aim of this article is to quantitatively explore the relationship between disability, emotional loneliness and social isolation. The data analysis presents a number of statistically significant findings which illustrate that disabled people (N?=?250) were at increased risk of experiencing emotional loneliness and social isolation compared with the nondisabled group (N?=?355). This study identifies a number of disabling barriers which result in this overrepresentation of disabled people. The study aims to move away from a pathological explanation of linking loneliness and social isolation to disability, in order to explain this occurrence from a barrier-based approach.     

Getting into the ‘Giving Habit’: The Dynamics of Volunteering in the UK

VOLUNTAS: International Journal of Voluntary and Nonprofit Organizations - Scholarship on volunteering has paid insufficient attention to how experiences of volunteering in the past affect current...     

‘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.     

‘Unjust,inhumane and highly inaccurate’: the impact of changes to disability benefits and services – social media as a tool in research and activism

This article details research carried out as part of an MA in Social Research at the University of Leeds (UK). The research was concerned with two key issues: documenting the impact of recent cuts in benefits and services on disabled people; and the role of disabled people’s organisations in responding to this impact. It also explored the use of social media in recruiting research participants. Working with Hammersmith and Fulham Action on Disability, the experiences of 95 disabled people were gathered using focus groups and an online questionnaire distributed via social media. The use of social media to gather participants is something I felt was particularly interesting in relation to disabled people, especially in light of social media’s role in current disability rights campaigns, and a method I feel should be explored further.     

‘The silence is roaring’: sterilization,reproductive rights and women with intellectual disabilities

This paper reviews the history of sterilization of women with intellectual disabilities, and considers its relevance to current practice regarding reproductive choice and futures. The paper provides an overview of published research on historical practices, focusing on the United Kingdom, the United States, Canada and the Nordic countries. Most of this research draws upon written records, centring on eugenics debates. However, emerging oral history testimonies gathered by the authors suggest that sterilization procedures were also conducted in the community, the result of private negotiations between parents and medical practitioners. The article presents these accounts and calls for an end to a ‘roaring silence’ on this issue. More empirical studies are needed to recover the experiences of women who have been sterilized and to explore how decisions about reproductive choice and capacity were made in the past and continue to be made today.     

‘We are actually,after all,just children’: caring societies and South African infantilisation of adults with intellectual disability

This article comments on infantilisation by attending to South African adult intellectual disability (ID) care through an intersubjective ethics of care lens, and shows how such an ethic can shine light on shifting our responses towards ID. Care performance data were gathered from three sources within two South African specialist ID care sites – from 10 adult residents, 16 nurses as spatiotemporal carers, and three wards as ethnographic sites. Deeply embedded and interwoven throughout various care practices is the disabling of adults with intellectual impairment when literally referred to as ‘children’. These adult-unmaking processes constitute practices that fall short of Tronto and Kittay’s caring societies ethic. Care exchanges generate relational and intersubjective spaces in which people are understood as never meeting full criteria for personhood. Infantilising care dynamics require urgent attention if we wish to change ways in which ID is viewed and responded to in South Africa.     

‘She will know that her mother’s doing something for her’: women with intellectual disabilities assuming the mother identity

This article explores the experiences of women with intellectual disabilities in becoming a mother. The presented findings are from a grounded theory research study with 19 women with intellectual disabilities from the Czech Republic. The findings are organised around external and internal factors affecting the women’s assumption of the mother identity, with the most prominent being poverty of the participating mothers, negative attitudes towards their motherhood, and a lack of preparation for motherhood. There is a need for systemic support for mothers with intellectual disabilities, starting in adolescence with sexual education, and continued throughout adulthood, including programmes focused on skills development.     

The significance of ‘the visit’ in an English category-B prison: views from prisoners,prisoners’ families and prison staff

A number of claims have been made regarding the importance of prisoners staying in touch with their family through prison visits, firstly from a humanitarian perspective of enabling family members to see each other, but also regarding the impact of maintaining family ties for successful rehabilitation, reintegration into society and reduced re-offending. This growing evidence base has resulted in increased support by the Prison Service for encouraging the family unit to remain intact during a prisoner’s incarceration. Despite its importance however, there has been a distinct lack of research examining the dynamics of families visiting relatives in prison. This paper explores perceptions of the same event – the visit – from the families’, prisoners’ and prison staffs' viewpoints in a category-B local prison in England. Qualitative data was collected with 30 prisoners’ families, 16 prisoners and 14 prison staff, as part of a broader evaluation of the visitors’ centre. The findings suggest that the three parties frame their perspective of visiting very differently. Prisoners’ families often see visits as an emotional minefield fraught with practical difficulties. Prisoners can view the visit as the highlight of their time in prison and often have many complaints about how visits are handled. Finally, prison staff see visits as potential security breaches and a major organisational operation. The paper addresses the current gap in our understanding of the prison visit and has implications for the Prison Service and wider social policy.     

Ethical injunctions: the University of the Western Cape in the face of the ‘here and now’

This essay poses the question of the ethical in relation to the work of memorialising the University of the Western Cape (UWC) after apartheid. Drawing on Gilles Deleuze’s statement on the ethical in The Logic of Sense and reading its implications through Walter Benjamin’s ‘Theses on the Philosophy of History’ and Jeremy Cronin’s ‘Even the Dead’, I argue that the ethical entails becoming adequate to the fracturing of event, leading to an understanding of the subject effect prior to its stamping by race, gender and identity. The ethical, in this formulation, reckons with the materiality of the past as its weight orders the present. It is this possibility of becoming adequate, of ‘not being unworthy of what happens to us’, which is offered in Ingrid Masondo’s photo-essay on UWC. I read Masondo as offering an encounter with images of the Leibnizian world as they appear at UWC, an encounter that registers alternate trajectories as they are expressed in ‘point of view’. Becoming adequate, here, involves registering the role of UWC (both conscious and unconscious) in the subjectification of persons during and after apartheid. This essay punctuates the rhythm of the memorialisation of UWC, by asking that this weight of the past be reckoned with while articulating alternate trajectories for both the university (and particularly the disciplines of the humanities) and for the understandings of subjectivity that attend to it, a demand that cannot be settled cheaply.