This presentation, using key facts and statistics, introduces some of the steps and principles for becoming a disability-confident employer.
Technology affects almost all aspects of modern eldercare. Ensuring ethical decision-making is essential as eldercare becomes more digital; each decision affects a patient’s life, self-esteem, health and wellness.
We conducted a survey and interviews with eldercare professionals to better understand the behavioural ethics and decision making involved in the digital transition of eldercare.
Our qualitative analysis showed three recurrent roles among eldercare professionals in regard to digital service transformation; makers, implementers and maintainers. All three encountered challenging and stressful ethical dilemmas due to uncertainty and a lack of control. The matter of power relations, the attempts to standardize digital solutions and the conflict between cost efficiency and if digital care solutions add value for patients, all caused moral dilemmas for eldercare professionals. The findings suggest a need for organizational infrastructure that promotes ethical conduct and behaviour, ethics training and access to related resources.
This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis. The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity.
The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.
The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high-income countries, with low- and middle-income countries markedly under-represented.
Developing programs to be inclusive of people with disabilities ensures that all people benefit. Acknowledging and understanding the lived experiences of people with disabilities is essential in changing the paradigm that development programs ‘do to’ or ‘do for’ a specific vulnerable and marginalised portion of the community. It addresses issues of equity and of development effectiveness.
This guidance provides tools and resources for practitioners, researchers and policymakers for any and all forms of research, or evaluation with human participants, to ensure best-practice. This guide is for ensuring that all people with disabilities within the population or community are not excluded (either purposefully or accidentally, through poor planning or inexperience) in doing development research or evaluation. The guide is not specifically designed for those doing research or projects solely focusing on people with disabilities.
This guide is divided into three sections for addressing and implementing good practice in development research.
Section One sets out the fundamental principles and ethical considerations of disability-inclusive development (DID) research. This includes an overview of the rights-based approach to disability, and its guidance in shaping development.
Section Two discusses the ethical considerations for designing inclusive research questions and methods, including when working with children with disabilities. This involves enabling and obtaining informed consent.
Section Three details the key steps and processes for ethically involving people with disabilities throughout the four main phases of the research process: planning, design, implementation, and dissemination.
Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.
Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.
Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.
A COVID-19 Humanitarian platform to gather, curate, analyze, interpret and disseminate COVID-19-specific and -sensitive interventions that are being implemented in a variety of humanitarian settings.
The goal is to facilitate the sharing of context-specific field experiences about how humanitarian programs are responding to and being adapted to the COVID-19 pandemic. This website will host both technical guidelines as well as operational field experiences from humanitarian actors in different settings.
The COVID-19 (Coronavirus) pandemic is leading to a rapidly expanding and evolving literature. Evidence Aid is preparing summaries of relevant research, which are available below in English with links to translations in other languages.
- Clinical characterization and management
- Ethical considerations
- Health systems and services
- Infection prevention and control, including health care workers’ protection
- Public health interventions
- Research & Development: Therapeutics and Vaccines
- Social science in the response
CBM’s Disability and Gender Analysis Toolkit has been developed to support staff, partners and allies in strengthening capacity to address systemic and deeply entrenched discriminatory practices and specifically to meet their Programme Quality Standards. It provides practical tools for stronger disability and gender analysis to inform planning, practice and systems. The toolkit provides practical assessment templates and guidance for individuals, organisations and programmes to identify strengths and gaps and to develop focussed action plans to improve practice.
The Agenda for Humanity sets out five major areas for action and change, the 5 Core Responsibilities, that are needed to address and reduce humanitarian need, risk and vulnerability, and 24 key transformations that will help achieve them.
Legal capacity of persons with mental disabilities was a con- tentious issue during the process of drafting the Convention on the Rights of Persons with Disabilities. The Arab Group, consisting of Muslim-majority countries, in the United Nations expressed reservations about the formulation of the Article related to this issue. However, their reservations were dis- missed because they arguably had to do with language-specificity. The author revisits these deliberations and argues that the reservations of the Arab countries have to do with reli- gious aspects rooted in the Islamic tradition. By ignoring these religious aspects, the Disability Convention missed a rich source of wisdom provided by a world religion like Islam. On the other hand, the innovative insights provided by the Disability Convention can be of value to improve contemporary discussions on legal capacity within the Islamic tradition. Unlike the previous studies, which either focused on the approach of the Disability Convention or that of the Islamic tradition, this study examines both approaches and highlights the points of agree- ment and disagreement and finally proposes suggestions for narrowing the existing gap between these two approaches.
In this paper I show how, for many Karen living as refugees in ‘temporary-shelter-areas’ in Thailand, acts of care and kindness often slipped into something painful and controlling. Drawing on fieldwork among Karen refugees disabled by landmines I show how asking for and receiving help was almost always accompanied by the visceral sensation of ana, literally, ‘power hurt’. On the one hand, ana was the force driving the circulation of care and kindness, provoking people to help others. On the other hand this circulation also carried with it the constant potential to compromise not only the recipient’s but also the donor’s ‘power’, which was understood as their capacity to have an effect on the world. In this manner ana may offer us with a way to grasp the ethical-affective basis of a social arrangement that slips smoothly between lateral solidarities and vertical hierarchical relations allowing egalitarianism and hierarchy to co-exist.
The Field Manual has been created to provide technical guidance for those with medical training. It enables the user to adapt their knowledge to the treatment of severely injured children. It has paediatric-specific sections on:
- Pre-hospital care and transport
- Damage control resuscitation, surgery and intensive care
- Surgery (thoraco-abdominal, limb, burns)
- Neurological injury
- Ward care
- Psychosocial support
- Ethics and safeguarding
The Manual is also intended for use by anyone who is required to plan for the treatment of severely injured children, so they can see the resources, training and equipment that is required in a medical facility likely to receive blast injured children.
Gloria Anzaldúa’s writing has been read as decolonial based on her resistance to dominant national, racial, and cultural formations. This essay turns to unpublished documents from the Gloria Anzaldúa archive that are decolonial at a more fundamental level. In autobiographical writings about her own experiences with disability, as well as doodles and figure drawings, the alternate forms of human life that Anzaldúa depicts defy the logics of identification and differentiation that underlie colonial hierarchies. Refusing to fix bodies with labels, Anzaldúa accepted mystical encounters and inter-species minglings without judgment. She experienced her own disabling conditions (including a severe hormone imbalance and Type 1 diabetes) in the epistemological fold between medical diagnoses (which enforce the coloniality of power, knowledge, and being) and trans-corporeal perceptions that defy empirical analysis. I analyze the ways in which these more capacious ways of being resonate with recent developments in posthumanist theory and disability ethics.
Disability & the Global South (DGS), 2019, Vol. 6 No. 1
Alejandro González Iñárritu is a salient example of contemporary Latin American directors who portray sick or disabled bodies as a visual and affective shorthand for different forms of violence. This article explores the relationship between his signature intersecting plots that join seemingly disconnected social spheres in a shared precariousness and his portrayal of illness, injury, and disability to suggest the violence and inequality that underpin these connections. I argue that González Iñárritu’s films frequently represent injured and disabled bodies to expose invisible connections that make social injustice possible as evidence of his using film as a political or ethical intervention that might erode the way contemporary global capitalism reproduces coloniality in everyday life. At the same time, his films illustrate the pitfalls of utilizing disabled bodies to realize this critique, thus shedding light on the ethical dimensions of this tendency to link disability with a critique of violence.
Disability & the Global South (DGS), 2019, Vol. 6 No. 1
This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.
The first living condition-survey among people with intellectual disability in Sami areas in Norway was conducted in 2017. The purpose of this article is to present and discuss results from the living-condition study, with a focus on the results related to mental health and bullying as a risk factor for poor mental health among people with intellectual disability and a Sami background. We have conducted a questionnaire survey among people with intellectual disability in Sami areas, with and without a Sami background (N = 93). People with intellectual disability have poorer mental health compared to the population in general and those with Sami background have the poorest mental health. Bullying is one of several factors that increase the risk of poor mental health among people with intellectual disability and Sami background. Having a Sami background makes people with intellectual disability more disposed to poor mental health.
Purpose: Examining everyday challenges in the interactions between people with intellectual disabilities and their staff, as seen from the user’s perspective, is an important perspective in health care research. Involving people with intellectual disabilities as so-called co-researchers is a relatively unexplored research strategy. In this paper, co-researchers participated in all the steps of the research process, from planning to reporting, in addition to the written reporting of the findings. The aim of this study was to explore how people with intellectual disabilities experienced a filmed vignette of an everyday situation.
Method: Based on audio-recorded and transcribed individual and focus-group interviews with people with intellectual disabil- ities, performed by co-researchers with intellectual disabilities together with researchers, qualitative content analysis was used.
Results: The analysis reveals three themes: “being emotionally touched”, “being aware of the other”, and “being unclear”.
Conclusions: The results are discussed in light of normalization and participation in society with independence and one’s own decision-making. Regarding the care of people with intellectual disabilities, the main finding is the need to focus not only on greater involvement of this population in their own daily lives, but also to teach self-determination skills. Another finding is the importance of involving people with intellectual impairment as co-researchers.
Purpose: Choice and autonomy are recognized as values facilitating genuine self- determination. Subsequently greater understanding of these concepts in decision-making practices of adults with intellectual disabilities is required.
Aims: The twofold aim of this research study was to ascertain the core concern (most important issue) for adults with intellectual disabilities as they make choices and exercise autonomy and to develop a theory explaining how these adults attempt to resolve their core concern.
Methods: This research study undertaken in a single organization in the Republic of Ireland applied classic-grounded theory methods. Participants included twelve adults who were attending day services and accessing a variety of other organizational services. Interviews were undertaken, between January 2012 and September 2013, in different contexts on up to 4 occasions (46 interviews). Data analysis utilized concurrent processes of constant comparative analysis.
Results: The main issue of concern for these participants was ‘control’ in environments that were controlling of them and they responded by ‘aligning with the flow of control’ explained by how they framed control, emotionally connected and adjusted in compliance situations.
Conclusions: This theory offers a conceptual delineation of the way adults with intellectual disabilities manage the daily tensions and harmonies in decision-making.
This article takes its starting point in the Nazi ideology as it appears in the writings of Adolf Hitler, and discusses how disability and the body can be understood in the context of Mein Kampf. The article underlines how disability and bodily infirmities, alongside race, featured significantly in Hitler’s demagogic message. Although the overall image of disability was related to a sense of threat – and a culture gone wrong – Mein Kampf also contains a mixed interpretation of disability as a phenomenon, in which different and opposing disability narratives took part in the construction and the image of the body as a national property.
This paper explores connections between affect studies and critical disability studies. Our interest in affect is sparked by the beginnings of a new research project that seeks to illuminate the lives, hopes and desires of young people with ‘life-limiting’ or ‘life-threatening’ impairments. Cultural responses to these young people are shaped by dominant discourses associated with lives lived well and long. Before commencing our empirical work with young people we use this paper to think through how we might conceptualise affect and disability. We present three themes; ontological invalidation in neoliberal-able times; affect aliens and crip killjoys; disability and resistant assemblages.
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