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.     

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.     

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.     

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.     

Advancing social inclusion in the neighbourhood for people with an intellectual disability: an exploration of the literature

The shift from segregated facilities to community settings did not automatically lead to social inclusion for people with an intellectual disability (ID). Policies are increasingly decentralized but little is known about the factors that are important to realize social inclusion in the neighbourhood. This literature study identifies five domains barriers and facilitators for social inclusion in the neighbourhood: individual characteristics, informal network, professional care, neighbourhood characteristics, and government policies. The findings suggest that social inclusion in the neighbourhood is a dynamic process that shows a series of complex interactions between environmental factors and personal characteristics to provide opportunities for people with an ID. It is recommended to include the perspectives of people with an ID and other neighbourhood residents in future research on social inclusion. Specific attention is needed for the role of neighbourhood social capital in achieving social inclusion in the neighbourhood.     

Exclusion of HIV-positive people with disabilities in the media

This current issue piece aims to address the harmful exclusion of people with disabilities in the Iranian media. In a case study, this author collected news related to statistics of HIV-positive people covered by popular news websites written in the Persian language between June 2011 and June 2012. Within the analysed electronic texts, no reference was made to the number of HIV-positive people with disabilities. Under the rubric of critical discourse analysis, one can argue that this lack of representation may also be linked to a more general level of discourse that constitutes the marginalization of people with disabilities. This damaging exclusion both legitimizes and reproduces the ideology that people with disabilities are social minorities who can be excluded to the benefit of powerful people. This current issue piece also discusses the potential negative consequences of excluding HIV-positive people with disabilities from the discourse of HIV/AIDS in the media. Ultimately, the conceivable reasons for the Iranian government failure or refusal to publish the statistics of HIV-positive people with disabilities will be provided. Studies from various countries could shed more light on the exclusion of HIV-positive people with disabilities in the media and the interplay between HIV/AIDS and disability issues.     

Unanticipated ethical issues in a participatory research project with individuals with intellectual disability

The conduct of a participatory research investigation into the everyday literacy of adults with intellectual disability within the context of a PhD thesis highlighted issues related to the ethics of participatory research and the need to revisit and reconsider ethical guidelines around working with individuals with intellectual disability. Tensions were identified between participatory research ideology and the reality of research experiences, with additional issues arising due to disability in the first author.     

School memories of young people with disabilities: an analysis of barriers and aids to inclusion

This article presents a selection of the results gleaned from research analyzing the way social exclusion processes are constructed among young adults between the ages of 18 and 25. The paper focuses on a subset of the population studied: young people with disabilities. Likewise, we limit our study to the dimension of school‐related experiences. Our research methodology – based on individual personal narratives and first hand accounts – allows a dynamic, participative and integrated approach to the study of exclusion. Participants in the study were asked to reflect on their experiences and, thus, were given a voice. Our specific objective in this article was to identify and explain the barriers and aids to inclusion encountered in a variety of educational environments as expressed by interviewees who had experienced them personally.     

Pathologising the victim: law and the construction of people with disabilities as victims of crime in Ireland

Victimologists have for many years explored the construction of identities associated with the ‘victim of crime’, and how certain groups in society are understood as more ‘deserving’ of victim status than others. This paper considers the victim subjectivities ascribed to people with disabilities¹¹ In Ireland, ‘people with disabilities’ is the preferred term to ‘disabled people’.View all notes as victims of crime in Ireland by exploring the legal frameworks that shape their encounters with the criminal justice system. The legislative bricolage that exists is shaped by disjuncture, whereby anti-discrimination measures grounded in people with disabilities’ equal rights to access the justice system sit alongside those that construct them in terms of incapacity. Criminal law overwhelmingly pathologises people with disabilities as crime victims, with impairment dominating their victim status. The paper suggests that notions of victimhood that associate people with disabilities with dependency and passivity will do little to raise awareness of the disabling barriers that characterise their encounters with the criminal justice system.     

Rights discourses in relation to education of people with intellectual disability: towards an ethics of care that enables participation

In this paper we argue that human rights approaches for intellectually disabled people have failed to recognise the complexity of rights claims made by and on behalf of this group. Drawing on a research project into discourses of education for intellectually disabled people in the Eastern Cape, South Africa we discern three rights discourses; namely, rights to full participation, rights to special services and rights to protection. These draw off a social model, a medical model and a protective model, respectively. We note that these discourses may be set up in contestation with each other. However, we argue that they can be seen as complementary if viewed within an ethics of care that enables participation. Within this conceptualisation, participation is viewed within relations of care but is subject to a critique that examines the role of context and disciplinary power in constructing dependency.     

Counting inclusion with Chantal Mouffe: a radical democratic approach to intellectual disability research

As mandates for social inclusion of people with intellectual disabilities remain unfulfilled, many scholars question whether the concept of inclusion is to blame. Critics worry that quantitative measurements of inclusion miss what should count: a meaningful life gained from a sense of belonging. We argue that both concepts – inclusion and belonging – embody a communitarian ethos in which citizens mirror the values of their community. In contrast, Chantal Mouffe’s radical democratic approach to inclusion emphasizes the importance of difference and the inevitability of exclusion. Mouffe thus offers a way to broaden our approach to social inclusion in the twenty-first century.     

Barriers preventing high-quality nursing care of people with disabilities within acute care settings: a thematic literature review

This literature review was conducted to identify obstacles in the provision of quality nursing care to people with disabilities within acute care settings. Research in 2006 by the Disability Rights Commission found that people with disabilities have healthcare needs that are not being adequately met with the quality of care expected or anticipated. Obstacles to the provision of high-quality nursing care are a matter of concern to nursing clinicians, educators and researchers involved with establishing and maintaining professional standards of care for nursing practice. Therefore, this review has identified three major themes illustrating barriers to provision of high-quality nursing care in the acute care setting to people with disabilities. Themes identified were: professional competence, professional attitudes and organisational management. Nurses have an obligation to take into account the concerns and needs of individual clients with a disability.     

Using video vignettes in research and program evaluation for people with intellectual and developmental disabilities: A case study of the Leadership for Empowerment and Abuse Prevention (LEAP) project

People with intellectual and developmental disabilities (IDD) are often excluded from meaningful participation in research and program evaluation for various reasons, including protocols and measures that are inaccessible for people with varying cognitive and communication abilities. Emancipatory research models emphasize the importance of inclusive research practices. Video vignettes are a promising tool for research and program evaluation with people with IDD because they are standardized, they use visual imagery rather than relying on written or verbal communication, and they allow for distance from sensitive topics. The Leadership for Empowerment and Abuse Prevention (LEAP) project used video vignettes to evaluate a healthy relationship program for people with IDD. The authors discuss the process of piloting various protocols and measures, which then ultimately led to the use of video vignettes in the evaluation.     

Learning how to be (a) patient: visual analysis of accessible health information leaflets for people with intellectual disabilities

Creation of jargon-free Easy Read health texts, incorporating carefully chosen words and images, is promoted as a way of removing health access barriers for people with intellectual disabilities. Using a social semiotic framework, this article explores the social construction of the patient with intellectual disabilities within a sample of adapted health texts, focusing on the visual images used. Images were coded and analysed according to dimensions suggested by Kress and van Leeuwen’s work on ‘visual grammar’. Images highlight the inclusion of patients with intellectual disabilities in mainstream healthcare settings. However, these patients are depicted as being inserted into somewhat idealized healthcare routines that are pre-determined and micro-managed through to completion. Consideration of risks and choices associated with healthcare use are downplayed. The article concludes that the care of patients with intellectual disabilities continues to constitute potential trouble for mainstream healthcare providers, rather than being an expected aspect of everyday practice.     

I am who I need to be: reflections on parental identity development from a father of a child with disabilities

In this article, I describe the process by which I internalized disability as a construct of my identity, as a result of my son being diagnosed with cerebral palsy. This process was focused on the skillsets I needed to develop to navigate structures associated with disability on behalf of my son. In doing so, an identity focused on negotiating/maintaining the borders between my own perspective as an able-bodied individual and the needs of my disabled son emerged.     

Voting barriers and solutions: the experiences of people with disabilities during the Dutch national election in 2017

Exercising the right to vote at elections is frequently denied to people with disabilities. In this study, we examined the voting behaviour of individuals with physical or learning impairments and the barriers they encountered during the national elections in 2017 in the Netherlands. A survey design was chosen to allow large-scale questioning of both target groups. Over 90% of people with physical impairments voted and respondents found that voting was accessible. Voter turnout among people with learning impairments was much lower (46%). They experienced difficulty to prepare themselves and at the polling station. The Netherlands seems well on the way to achieving an inclusive environment for people with physical impairments. Recommendations are given about accessibility for all and for exploring alternative methods of voting such as proxy voting and tailoring information and procedures to the needs of people with learning impairments.     

Towards economic participation: examining the impact of the Convention on the Rights of Persons with Disabilities in India

This paper examines the probable impact of India’s ratification of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), particularly in terms of promoting economic participation. The paper presents findings from recent fieldwork, conducted in India at the beginning of 2011. The main aim of the study was to examine some current national-level developments, relevant to disability, and to compare various approaches to promoting economic participation at the grass-roots level, with a view to determining the potential of the CRPD to make a real difference to the everyday lives of disabled people. The paper concludes that the CRPD has already had some impact at the national level. Furthermore, there are signs that some parts of Indian society are becoming more inclusive of disabled people, in the areas where research was carried out, thus increasing the likelihood of greater economic participation for disabled people in the future.     

Access to education in Africa: responding to the United Nations Convention on the Rights of Persons with Disabilities

Article 24 of the United Nations Convention on the Rights of Persons with Disabilities mandates that disabled people should have full rights to education in inclusive settings. However, to ensure that educational polices and settings are designed to meet this criterion seems challenging to African countries that have ratified this Convention. This article arises from the 2nd African Network of Evidence-to-Action on Disability Symposium. This fluid network was established to address the gap between research and practice in the region. The article reports proceedings and the emerging themes from the Education, Training and Work Commission; one of the six commissions of this Symposium, focusing specifically on the education aspect. It also challenges various stakeholders to move from evidence to action to ensure the educational rights of disabled people in inclusive settings.     

Extending reading research with a focus on cultural understanding and research on intercultural communication: an empirical investigation in Argentina

The work presented here is an empirical study of how advanced learners of English as a foreign language in Argentina access and understand the culture-specific dimensions of literary narrative texts. It has three purposes. First, to extend research into reading in a foreign language to take account of the culture-specific content of texts. Second, to extend the focus of research on intercultural communication to include the analysis of reading processes. Finally, to introduce an approach to the analysis of the cultural dimension of the reading process using a new model of levels of cultural understanding. It is argued that cultural understanding goes beyond the quantification of prior knowledge or background knowledge in the form of idea units as evidence of the comprehension process. In this sense, the proposed model succeeds in portraying a more detailed picture of cultural understanding in this setting.     

Living on a knife edge: the responses of people with physical health conditions to changes in disability benefits

Abstract

This article documents the experiences of people with a physical health condition or disability who have experienced a loss of or change in disability benefits under the welfare reform programme in the United Kingdom. A theoretical model was constructed using in-depth interviews and grounded theory methods. The findings show that participants experienced the benefits system as dehumanising, and felt that they lived in a judgemental and invalidating society, where they were perceived as ‘scroungers’ and faced discrimination from others. These experiences negatively affected their mental and physical health and well-being. They also negatively affected participants’ identity, leading to experiences of shame, hopelessness and social isolation. However, many participants attempted to resist these negative impacts (e.g. through seeking support or taking political action). The findings demonstrate the significant impact of benefit changes on well-being and identity, thus highlighting important implications for claimants, and staff in healthcare, the benefits system and government.