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Book part
Publication date: 2 September 2024

Iris Elliott

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…

Abstract

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.

Details

Advances in Disability Research Ethics
Type: Book
ISBN: 978-1-78769-311-1

Keywords

Book part
Publication date: 2 September 2024

Daniel Mont

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…

Abstract

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.

Details

Advances in Disability Research Ethics
Type: Book
ISBN: 978-1-78769-311-1

Keywords

Book part
Publication date: 2 September 2024

Jennifer H. Madans

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…

Abstract

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.

Details

Advances in Disability Research Ethics
Type: Book
ISBN: 978-1-78769-311-1

Keywords

Book part
Publication date: 2 September 2024

Anne Good and Gary Allen

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) aims to transform the lives of people with disabilities around the globe. Many challenges to…

Abstract

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) aims to transform the lives of people with disabilities around the globe. Many challenges to achieving that goal still remain. The area of disability research ethics is one of those challenges and is the subject of this chapter. Systemic reform of disability research ethics is needed in order to ensure that the work of the UNCRPD rests on a bedrock of quality research and data collection. In that way, progress can be supported and any regression of disabled people’s human rights and equality can be recognised and reversed (Good, 2020). While much work has already been done, inconsistencies remain with regard to the fundamental challenge of removing all ableism from the UNCRPD knowledge base. The COVID-19 pandemic of 2020–2023 starkly revealed the level of remaining ableism across the world, and how this ableism meant that Covid negatively impacted the lives of disabled people more extremely than others. This was revealed, for example, in a recent study of Covid era policies in 14 countries (Shikako et al., 2023) and also in a study of disabled people’s experiences of the Covid pandemic in South Africa (Wickenden et al., 2023). Reformed ethics in research and data collection are needed to expose and understand the problems in policy and practice, during the pandemic, which in some cases reverted to eugenics, and to investigate how to address these. This chapter maps out some possible ways forward in the work to improve human rights and equality-based research as an ethical issue.

Abstract

Details

Advances in Disability Research Ethics
Type: Book
ISBN: 978-1-78769-311-1

Book part
Publication date: 2 September 2024

Celia Brown, Clarencetine (Teena) Brooks, Jonathan P. Edwards, Chyrell D. Bellamy and Kathleen O’Hara

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…

Abstract

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.

Book part
Publication date: 10 June 2024

Ioanna Georgiou and Stavros K. Parlalis

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…

Abstract

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.

Details

Disability and the Changing Contexts of Family and Personal Relationships
Type: Book
ISBN: 978-1-83753-221-6

Keywords

Open Access
Article
Publication date: 11 January 2024

Matteo Moscatelli, Nicoletta Pavesi and Chiara Ferrari

The United Nations Convention on the Rights of Persons with Disabilities (2006) recognizes the right of disabled people to access work. Against this legislative backdrop, this…

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Abstract

Purpose

The United Nations Convention on the Rights of Persons with Disabilities (2006) recognizes the right of disabled people to access work. Against this legislative backdrop, this study explores the strengths and weaknesses of the Italian system of targeted placement for disabled people, based on Law 68/1999, which delegates to regional authorities the management of the labor market. The examination centers on the perspective of companies, the primary stakeholders in the inclusion of persons with disabilities within organizational structures.

Design/methodology/approach

The article discusses the results of focus groups conducted with 28 managers of large, medium and small enterprises in Lombardy (Italy). Qualitative analysis was employed, and the results were structured using a simplified strengths, weaknesses, opportunities and threats (SWOT) analysis, incorporating practical recommendations.

Findings

The analysis leads to practical suggestions to improve the entire targeted placement process at the regional level, from selection and accompaniment to evaluation, such as improving the networking of local stakeholders who deal with the inclusion of disabled people, homogeneity of the procedures in different regions, making all employees aware of diversity management, etc. The territorial network and the welfare environment are particularly important in achieving a successful targeted placement and to promote an inclusive corporate culture.

Research limitations/implications

This study is not representative of Italy as a whole, as it remains a qualitative investigation focused on a single region.

Originality/value

This contribution accomplishes an in-depth study of the law of labor inclusion of people with disabilities observed from the point of view of companies, which are still usually reluctant to integrate people with disabilities into their organizations or encounter difficulties in doing so.

Details

Equality, Diversity and Inclusion: An International Journal, vol. 43 no. 9
Type: Research Article
ISSN: 2040-7149

Keywords

Abstract

Details

Collective Action and Civil Society: Disability Advocacy in EU Decision-Making
Type: Book
ISBN: 978-1-83549-531-5

Article
Publication date: 3 May 2023

Sahem Nawafleh

Based on the principle of equality, individuals with disabilities have the right to equal job opportunities and career advancements and to actively participate in the economy like…

Abstract

Purpose

Based on the principle of equality, individuals with disabilities have the right to equal job opportunities and career advancements and to actively participate in the economy like other members of society. This study aims to provide an integrated description of discriminatory occupational practices and behaviours that individuals with disabilities face. This study followed the descriptive analytical approach to achieve the objectives. A questionnaire was used for data collection purposes.

Design/methodology/approach

The target population for this study was male and female employees with disabilities working in the Jordanian Government sector for the years 2019–2022 in all governorates of Jordan. The sample method used was purposive-convenient random sampling, and the size of the sample valid for statistical analysis was n = 1,043. Using the Statistical Package for Social Sciences (v26), a number of statistical tests were conducted to infer the features of the researched phenomenon.

Findings

This study found an overall moderate level (mean = 2.76) of practices and behaviours of job discrimination against individuals with disabilities in the Jordanian public sector. All proposed practices and behaviours were at moderate levels of agreement, with the highest discriminatory behaviours being in the areas of training and learning opportunities (2.88), followed by job performance evaluation (2.84), work leave and vacation (2.75), integration and social participation (2.74), career advancement and promotion (2.73) and, last, the distribution of tasks and responsibilities (2.61). Furthermore, it was found that there are significant differences in the levels of discriminatory practices and behaviours towards people with physical disabilities, individuals with visual impairments and psychological disabilities, new employees at work and those with a low level of education. In addition, employees at higher administrative levels (manager, deputy/assistant manager and head of department/division) and workers in the southern and central governorates are exposed to the highest levels of discrimination.

Research limitations/implications

Lack of data: There is often a lack of reliable and comprehensive data on employees with disabilities, making it difficult for researchers to accurately study and understand the experiences of this population. Stigma and discrimination: People with disabilities often face stigma and discrimination, which can make it challenging for researchers to engage with them and collect accurate information.

Practical implications

Moreover, it was found that the main agencies to which cases of discriminatory practices towards individuals with disabilities working in the Jordanian public sector are reported are the direct managers/supervisors (n = 381), the ministry to which the institution/department belongs (n = 278) and the Higher Council for the Rights of Persons with Disabilities (n = 261).

Social implications

Supporting social inclusion: Employment can provide a sense of purpose, identity and social inclusion for people with disabilities, which can have a positive impact on their disabilities and overall quality of life. Improving diversity and inclusion: The inclusion of employees with disabilities can contribute to a more diverse and inclusive workplace, where all employees feel valued and respected.

Originality/value

This study found that discriminatory practices against employees with disabilities in the Jordanian public sector were largely because of a lack of awareness of reporting mechanisms and negative attitudes towards individuals with disabilities. This study proposes solutions such as raising awareness among non-disabled employees, implementing penalties for discriminatory behaviour and updating legislation for the rights of individuals with disabilities.

Details

International Journal of Organizational Analysis, vol. 32 no. 4
Type: Research Article
ISSN: 1934-8835

Keywords

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