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The ambition of human rights-based research is to generate an evidence base aligned to specific rights and rights holders. This chapter addresses the question ‘How does the ethical communication of research evidence support the achievement of this ambition?’ It outlines a Communication of Evidence For Impact (CEFI) approach that is focused on the realisation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). CEFI proposes that human rights-based communication is: a public good; a legal imperative in States that have ratified CRPD, and a moral imperative in States yet to sign or ratify; a core research competency and ethical requirement; participatory; and grounded in a culture of inclusion, intersectionality, and allyship. This chapter explores how five actors – States, research ethics committees, researchers, funders, and publishers – can each contribute to ethical communication. Recommendations are made for including and futureproofing CEFI in a disability research ethics framework.

The goal of the Convention on the Rights of Persons with Disabilities (CRPD) is to secure the rights of persons with disabilities as full and equal members of society. Achieving these objectives requires appropriate and high-quality data for identifying disability gaps and areas of exclusion. Such data can be then used to develop policies and programmes to address that exclusion, and then to monitor and evaluate their effectiveness. However, researchers and policy makers face a number of challenges when collecting this data. This chapter reviews the various approaches to collecting data on disability, identifying potential sources of relevant data, including through surveys and repurposing of data collated for administrative means. It discusses at length the legal and ethical issues involved in their collection and use for alternative purposes, providing a comprehensive exploration of issues relating to participation, privacy, big data and rights of access. It concludes by suggesting ways forward for creating disability data systems that can fully support efforts to achieve a fully inclusive society.

The United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) (UN, 2006) obliges its signatory states to establish inclusive school systems. Germany ratified the document in 2008. This international steering impulse triggered a real “inclusion shock” (Heinrich, 2015, p. 235) when it came into force, because hardly any other country in Europe has worse conditions for implementing the convention than Germany. The school structure with up to nine special schools was called upon to fundamentally changes or adaptations by the CRPD. Since 2008, it has been observed that the various federal states in Germany react very differently to this impulse according to their own development. From an empirical point of view, this raises the question of the concrete “steering” of these inclusion-oriented transformations. The chapter examines the question of how the actors in the school system of the federal state Schleswig-Holstein reacted to this challenge between 2008 and 2014. The focus of the research interest is above all on the collective coordination of action by state and non-state actors in the multi-level system, the intentions of regulatory impulses and the effects of steering efforts in the process of implementing the CRPD. With regard to the implementation of Art. 24 of the CRPD, the “Governance-perspective“ makes it possible to conceive state activities and hierarchical forms of coordination as an integrative component of political regulatory processes, so that the complex mechanisms of influence, the intention to change, steering decisions and steering effects can be examined from an overarching perspective.

Research is conducted to inform our understanding of broadly defined topics often described in terms that are used in common discourse. In order to carry out research, it is necessary to develop specific definitions which are also measurable. The way a concept is defined should be determined by the objectives of the research project, making it necessary for these objectives to be clearly stated. For example, if a research enterprise is undertaken to provide information to monitor whether policy commitments have been realised, the definitions used must be grounded in the frameworks that define those commitments. If this is not the case, the research findings cannot be used for their intended purpose. Transparency in how concepts are defined is also key to the ethical use of research findings. Given the complex and multidimensional nature of disability, definition is particularly important in disability research. This chapter will first review the need to clearly define disability when conducting disability research, and will discuss the need to identify the population or populations with disabilities in order to monitor full inclusion in society. The difference in the level of inclusion in society among those with, as compared to those without disability, is referred to as the ‘disability gap’. The Chapter will then address challenges in identifying the population with disabilities consistent with the social and human rights models of disability. Finally, this chapter will conclude with a presentation of the data collection tools developed by the Washington Group on Disability Statistics.

The United Nation’s treaty from the Convention on the Rights of Persons with Disabilities (CRPD) speaks to the assurance of rights and access to justice. To assure the rights addressed in the treaty, disability scholars have argued for a collaborative approach between police officers, mental health, Intellectual and Developmental Disabilities, professionals, and disability rights organisations. Internationally, we have witnessed that rights are being trampled at the intersection of race/ethnicity, gender identity, disability, and sexual orientation. Interactions with the police and the various systems are sometimes experienced as sources of trauma, racism, disrespect, pain, and abuse by individuals living with disabilities. Allyship and organising with the community, particularly with BIPOC and other ‘minoritised’ communities, is essential for policy and other systemic change. Community conversations were done to learn how Black, Indigenous, and People of Color (BIPOC) and allies experience and address policing and disability and act at these intersections. The advocacy and activism of Surviving Race: The Intersection of Injustice, Disability, and Human Rights served as the impetus for this study. Surviving Race was created to unite psychiatric survivors, BIPOC impacted by the mental health and disability systems, White allies, and members of the LGBQTIA+ community to stand in solidarity with activists who were demanding systemic change after the deaths of far too many. This chapter explores intersectional and cross-disability allyship, allyship to BIPOC disability, and psychiatric survivor communities. It examines how people with disabilities and allies can more effectively work at the intersection of race, rights, equity, and justice.

The purpose of this study is to highlight the need to develop and expand specialized support for people with ASD, examining the effect of these services on their families' quality of life. Despite efforts to promote diversity and equal opportunities for people with disabilities, Cyprus faces challenges in various levels such as in society, education, and employment. Unlike other countries, there is limited literature and data on adults with ASD in Cyprus, which prevents from forming an accurate assessment of their needs and the impact on their quality of life. Further, as a European Union Member State, Cyprus has restrictions on specialized programs and benefits, which makes it difficult to fully implement the UN Convention on the Rights of Persons with Disabilities (CRPD). This led to a lack of effective support services for adults with ASD and their families. Consequently, parents express concerns about the support that will be available for their adult children in the future. This study uses qualitative data obtained through the constant comparative method and is part of a larger project that includes both quantitative and qualitative research methods. The study presents important issues such as the positive impact of services on these adults and their families, families' concerns about specialized support and programs for people with ASD, and their relationships with their parents. The results are expected to raise awareness, promote social policy development, and improve the quality of life of people with ASD and their families in Cyprus.

This chapter explores the role of an ethics committee led by disabled academics, in supporting co-produced disability research beyond academia, in the context of a five-year research programme in the UK (2015–2020). This chapter includes reflections by the Ethics Committee members, alongside documentary research which analysed the communications between the Ethics Committee and the research projects it supported. This review of the role of the Ethics Committee showed that there were dilemmas in considering the boundaries between ethical review and providing pedagogic advice on research design, and in balancing its role in supporting and regulating research. Ethics review processes are sometimes seen as overly bureaucratic and as an obstacle course for researchers, and this was also sometimes the case for projects supported by the DRILL (Disability Research on Independent Living and Learning) Ethics Committee. Lessons to be learned from the process included that communication between ethics committees and researchers is key, and that ethics review can be a two-way process, recognising the expertise of both the researchers and the reviewers, thus mirroring the principles of co-production. We suggest that an alternative model for ethics review process could build on this generally positive experience of the DRILL Ethics Committee.