Dementia,disability rights and disablism: understanding the social position of people living with dementia

This article considers the recent history and consequences of positioning people living with dementia in the realms of disability, disablism and disability rights. The geo-political focus is the United Kingdom and neighbouring resource-rich nations in the Global North. The first section examines the growing trend of identifying ‘dementia’ with ‘disability’, a trend fuelled by the expansion of dementia-related activism and research. The second section focuses on how researchers who have published in Disability & Society and other journals have applied the social model of disability to individuals living with dementia. The third section discusses three conceptual challenges that lie ahead for those who choose to research and theorise the dementia/disability connection. These challenges concern: theorising dementia as disability; understanding intersectionality in dementia contexts; and understanding ‘abuse’ in dementia contexts.     

Parity of participation in liberal welfare states: human rights,neoliberalism, disability and employment

Governments continue to face challenges in implementing effective strategies to increase social and economic participation of people with disabilities. In a recent OECD high-level policy forum on Sickness, Disability and Work, the main policy message was the need for a culture of inclusion; with a dual focus on short-term active policy interventions and long-term structural reform. This paper examines policies in liberal welfare states that encourage people receiving disability benefits to participate in the labor market. Examples from the United States, the United Kingdom and Australia of active labor market programs aimed at moving people with disabilities from workfare are analyzed in the context of international disability rights and neoliberal discourse. The paper explores the extent to which new approaches to activation policies are facilitating parity of participation and factors that impact the effectiveness of these policies.     

Embracing the new disability rights paradigm: the importance of the Convention on the Rights of Persons with Disabilities

In 2008 the United Nations Convention on the Rights of Persons with Disabilities (CRPD) commenced operation. The CRPD has created a dynamic new disability rights paradigm that empowers disability people’s organizations and creates a new paradigm for disability scholars. This paper analyses the impact of the CRPD and provides practical guidance as to how this convention can be used to drive change. Prior to this convention, persons with disabilities were protected by a range of general human rights conventions. Despite receiving nominal protection under general human rights conventions, persons with disabilities have had many of their human rights denied to them. The CRPD goes further than merely re-stating rights. It creates a new rights discourse, empowers civil society and renders human rights more obtainable for person with disabilities than any time in history.     

In search of disability rights: citizenship and Turkish disability organizations

Criticizing modern citizenship’s emphasis on the ‘nation’ as a homogeneous body of citizens, recent citizenship conceptions draw attention to diverse group identities and their differentiated rights‐claims. By way of scrutinizing different disability organizations, this paper analyzes the struggles by people with disabilities in Turkey and examines whether these could be perceived as claims to new forms of citizenship. It argues that due to the institutional, political, cultural and historical specificities of Turkey, most non‐governmental organizations maintain relations of patronage with state actors. Far from initiating a rights‐based discourse, their activities cannot be perceived within recent citizenship frameworks. Yet, parallel to Turkey’s accession process to the EU and technological developments, alternative forms of organizing started emerging at the virtual level. These are the harbingers of a relatively more rights‐based discourse.     

Rights to research: utilising the Convention on the Rights of Persons with Disabilities as an inclusive participatory action research tool

For those labelled disabled, disability rights are synonymous with human rights, not merely a sub-category. In this paper we consider disability rights in terms of the right of people labelled with learning difficulties to be actively involved in research. Examples from an inclusive participatory action research project undertaken in partnership with people labelled with learning difficulties demonstrate how the Convention on the Rights of Persons with Disabilities was operationalised using photo-voice to facilitate accessible research, analyse findings and promote social change.     

Forced marriage of people with learning disabilities: a human rights issue

This paper reports some of the findings of an exploratory study which sought to better understand the demographics of forced marriage of people with learning disabilities and the contexts in which such marriages may occur. It was found that forced marriages of people with and without learning disabilities showed broad similarities in relation to ethnicity, some differences in terms of age and substantial differences in terms of gender. Men and women with learning disabilities are equally likely to be victims of forced marriage. The reasons for people with learning disabilities being forced to marry are most often associated with a desire on the part of families to secure permanent care, but can also be associated with cultural (mis)understandings of the nature of disability. These findings are contextualised by considering the relationship between forced marriage, human rights and learning disability.     

Navigating the ethical maze in disability research: ethical contestations in an African context

Despite changes in how disability is viewed, ethical requirements for disability research have hardly changed. Some ethical clearance procedures, processes and practices still consider persons with disabilities as not able, creating unease among researchers and research participants with disabilities themselves. This paper considers five ethical contestations arising from research in the area of disability in an African context: positionality, vulnerability, signed consent, anonymity, and research committee composition. We argue that ethical requirements in practice are still largely based on a medical model of disability and propose that culturally sensitive social and human rights models should influence disability research ethics.     

Qualitative inquiry of sibling relationships: reinforcement of disability devaluation through the exclusion of voices

People with disabilities share a history and culture of marginalization and oppression. In disability studies, disability has been re-defined as an inability or limitation in performance of the roles and tasks expected of individuals within society which excludes people from becoming full participants in social, cultural, and political affairs. Disability research has traditionally been ‘on’ rather than ‘with’ people with disabilities. This article examines how qualitative sibling disability research has been conducted, with a particular focus on the exclusion of people with disabilities.     

From advocacy to service provision: state transformation and the disability rights movement in Taiwan

This research uses the development of the disability rights movement in Taiwan as a case study to analyze the impact of state transformation, in particular marketization of social welfare policy, on the disability rights movement. First, the institutionalization of the disability rights movement enabled it to expand its organizational structure and become involved in shaping policy. Secondly, when disability rights organizations started to undertake state-funded projects, their focus shifted from advocacy to service provision. Thirdly, competition for limited state-funding gave the organizations led by urban-middle class advocates a significant advantage over small, community-based NPOs and gathered significantly greater resources. Finally, this paper suggests that, in a context in which the state did not provide basic social services for its citizens with disabilities, the institutionalization of SMOs turned advocacy groups into service providers. Although the number of disability civic organizations increased, the voices of advocacy groups were weakened.     

Communication rights and disability online: Policy and technology after the World Summit on the Information Society

This paper reviews and analyses the topic of disability, communication rights, digital technology, and policy. In particular, it focusses on the new ways that the human right to communicate has been articulated via international law and policy – especially at the World Summit on the Information Society (WSIS 2003–2005 and WSIS +10 in 2015) as well as the United Nations Convention on the Rights of Persons with Disabilities.     

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.     

An ‘action‐poor’ human rights education: a critical review of the development of human rights education in the context of civic education in Hong Kong

In Hong Kong, human rights education (HRE) is considered an aspect of civic education. For decades, HRE has been poorly attended. In 2009, a new compulsory subject, Liberal Studies, where HRE can be infused, will be introduced to senior secondary students (15–18 years old). This article reviews the development of HRE within civic education, followed by the analysis of Liberal Studies documents with reference to international human rights documents. It is concluded that Liberal Studies can be used as a vehicle for HRE. The aims and pedagogy proposed are similar to those adopted by HRE. International standards of human rights can be incorporated in the content. However, the HRE derived from Liberal Studies is a form of ‘action‐poor HRE’. Whether this ‘action‐ poor HRE’ can adequately cultivate a universal human rights culture is an issue for further research.     

Pushing the boundaries of our understanding of disability and violence: voices from the Global South (Guyana)

Our knowledge about disabled people’s lives is largely based on research in the Global North. This article considers disability and violence in the Global South, specifically in Guyana. It aims to push conceptual and empirical boundaries of our understanding of violence and disability. Conceptually, it argues for a social model materialist theory of disability attuned to how material barriers to disabled people’s inclusion in society and space are reproduced through processes of exclusion unfolding across geographic scales ranging from the global, to the inter-personal and intra-personal. It argues that Lacanian psycho-analytic theory provides a complimentary lens for understanding why people engage in acts that construct disabled people as ‘deserving’ of violence. Empirically, the article broadens our understanding of disability and violence by focusing on poverty, violence as a cause of impairment and disability, and disabled women’s and men’s experiences of violence in a majority world context.     

Time for justice: safeguarding the rights of disabled children

This article reviews two core strategies for safeguarding the rights of disabled children and examines the extent to which these processes advance justice for children in accessing an inclusive and equitable education. The article evaluates the adequacy of the legal system in the face of increased evidence of exclusionary practices of schools, and the low uptake of the disability tribunal as a vehicle for redressing discriminatory practices. It reviews the work undertaken with schools to develop procedures and processes to support them in identifying disabled pupils in order to monitor the impact of their policies and practices. Although there were some limitations, this work provided a platform from which to ensure that schools engaged with their responsibilities and understood more about the ways in which a child’s impairment impacted on their participation in school life. Instead we are dependent on the work of voluntary associations to safeguard children’s rights.     

Scalar properties of the transnational field of human rights: Field effects and human rights in Bahrain

Whilst a body of work exists that has engaged with and conceptualised transnational fields, and in particular for this paper, the transnational field of human rights, more work needs to be done to elaborate on the effects of transnational fields, at the national level. Using Bourdieu's field theory, and more recent scholarship that focuses on scalar aspects of fields, this research focuses on a human rights field at the national level in Bahrain. The paper addresses two levels/dimensions of the transnational field of human rights: the transnational level and the national level, focussing on the field's vertical autonomy. Based upon nineteen in-depth interviews, the research retrieves the biographical trajectories of Bahraini human rights activists and activists from iNGOs with a specific remit that includes Bahrain. The paper argues that the vertical autonomy of the transnational field of human rights has demonstrable field effects at the national level, and that this has a number of implications. First, where transnational fields have greater vertical autonomy, the national level can operate with varying hierarchies, with actors adopting practices that diverge from those acting transnationally. Second, as a result of these scalar differences and the vertical autonomy of the transnational field, actors at the national level may have to adapt their practices, others can be side-lined as a result of ‘symbolic pollution.’ Third, in order for local actors to engage with transnational advocacy networks, they must be the right type of actor.     

Explanatory models for disability: perspectives of health providers working in Malawi

Health providers’ understanding of disability determines how disabled people are treated, and hence it is imperative to address conceptualisations of disability, as this will contribute to better opportunities and realisation of human rights for disabled people. This article will use data from a qualitative study exploring conceptualisations of disability by 22 health service providers from the total health care system in Malawi, including the professional sector (e.g. medical doctors and nurses) and the folk sector (healers and indigenous practices). We will discuss how these perceptions influence the lives of disabled people, using the case of a health service user with physical and speech impairment as an example. Our data show that health providers largely conceptualise disability according to the medical model for disability, contributing to the exclusion of disabled people. The bio-psycho-social model for disability, largely absent as an explanatory model for disability among our informants, is the most inclusive and rights based.     

Community reintegration for people with psychiatric disabilities: challenging systemic barriers to service provision and public policy through participatory action research

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.     

Refugee resettlement and the Convention on the Rights of Persons with Disabilities

The Convention on the Rights of Persons with Disabilities (CRPD) created pathways for people who are refugees with disabilities to resettle and build new lives. Resettlement country Australia, in response to its CRPD obligations, created greater access to the waiver of visa health requirements for humanitarian entrants. This article chronicles key documents demonstrating that the CRPD has been an effective instrument for improving access to resettlement for people with disabilities. The article also describes new challenges to Australia’s compliance with the CRPD as it fails to address multiple discrimination of people from refugee backgrounds with disabilities, an area of concern to the Committee on the Rights of Persons with Disabilities for which it has issued guidance. This article proposes creating a United Nations High Commissioner for Refugees Resettlement Submission Category for disability to improve resettlement programmes’ compliance with the CRPD.     

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.     

The production of disability research in human geography: an introspective examination

The ‘geographies of disability’ is an important and evolving area of scholarship within human geography. Uniting the disparate areas of inquiry in this sub‐discipline are researchers’ shared interests in understanding processes of disablement and socio‐spatial experiences of disability. What drives human geographers to engage with this scholarship? We address this and other introspective questions through presenting an analysis of the findings of an online survey conducted with 30 such disability researchers. The overriding purpose is to understand how and why these researchers do what they do. Our presentation of the survey findings is divided into four organizational categories: (1) the researcher; (2) the inquiry; (3) the research outputs; and (4) the institutions. A key finding is that conducting disability research in human geography is very much about negotiating around or through constraints while identifying and enacting enablers in order to accomplish goals associated with producing disability research.