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Rituals of knowing: rejection and relation in disability theology and Meister Eckhart

SMITH, Daniel G W
2017

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One of the most powerful claims of disability theology is that the rejection of persons with disabilities somehow correlates with a rejection of God. This ‘correlative rejection’ is, however, frequently just stated rather than explored in detail, something this article therefore seeks to remedy by examining one example of the correlative rejection that draws together the ethical concerns of theologians writing on intellectual disability with Meister Eckhart’s teaching on the human relationship with God. Here, the correla- tive rejection is exposed as an inevitable result of the narrow emphasis on autonomy and rationality in human self-perception which shape the habituated, even ritualised ways that we try to know persons with intellectual disabilities and God. By contrast, truly knowing and relating to persons with intellectual disabilities, God, and finally also ourselves, relies on a reconciliation with the dependence, vulnerability, and non-rational forms of exchange that a narrow attachment to autonomy and rationality seems directly to occlude. The correlative rejection thus signals both a practical and epistemological problem which results from how we view ourselves and how we subsequently relate to and try to know others, the harmful effects of which are both ethical and spiritual.

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Belaynesh
VAN ENGEN, Marloes
VAN DER KLINK, Jac
SCHIPPERS, Alice
2017

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This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

Hard to teach: inclusive pedagogy in social science research methods education

NIND, Melanie
LEWTHWAITE, Sarah
2017

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Amidst major new initiatives in research that are beginning to address the pedagogic dimension of building capacity in social science research methods, this paper makes the first move to apply the lens of inclusive pedagogy to research methods pedagogy. The paper explores the ways in which learning social science research methods is hard and may be anxiety-provoking, which has sometimes led to a deficit discourse in which learners are positioned as ill-prepared and fearful. Learners can then be blamed for being hard to teach when an inclusive pedagogical lens would support a more asset-based discourse. Nonetheless, the authors argue that without traditional deficit-based solutions of the remedial class, special needs label or special teacher within the methods learning environment, methods teachers have developed their own responses. These pedagogic responses, elicited from the authors’ research using methods of expert interviews, focus groups and video-stimulated dialogue, address challenges associated with the learner, the learning material and the teacher’s context. The paper differentiates between practical solution-focused strategies and more holistic approaches. The authors illustrate how methods teachers reach out to diverse learners and they conclude that data and standpoints are used in inclusive teaching to make connections and to support learning.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

Confessions of an inadequate researcher: space and supervision in research with learning disabled children

BENZON, Nadia von
2016

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Location is often at the fore of decision-making regarding fieldwork and choice of methods. However, little research has directly discussed the importance of the choice of site in the production of research data, particularly concerning the way that different relationships will manifest between researcher and participant in different spaces. Site may be particularly important in research with (learning disabled) children, as research location is intertwined with the level of caregiving required from the researcher, and the sorts of surveillance the research engagement may be subject to. This paper draws on research with learning disabled 6–16-year olds that took place in homes, schools and the outdoors, in a variety of microgeographical locations from bedrooms to nature reserves. This paper reflects on the challenges, including the very ‘worst’ research moments, occurring in the different research environments. Whilst the research was carried out with learning disabled children and young people, the discussion has implications for research with non-disabled children and ‘vulnerable’ participants more broadly.

Ethical and methodological issues in research with Sami experiencing disability

MELBØE, Line
HANSEN, Ketil Lenert
JOHNSEN, Bjørn-Eirik
FEDREHEIM, Gunn Elin
DINESEN, Tone
Minde, Gunn-Tove
RUSTAD, Marit
2016

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Background. A study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature.

 

Objectives. The main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these.

 

Methods. The ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian). Findings and discussion. The researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability.

 

Conclusion. The knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.

Exploring normativity in disability studies

VEHMAS, Simo
WATSON, Nick
2016

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Normativity is a concept that is often misapplied in disability studies, especially in ‘postconventional’ accounts, where the concept is conflated with ‘normal’, ‘normate’, or ‘standard’. This article addresses this confusion, explores the meaning and use of ‘normativity’, and presents some analytic tools to discuss normative issues of right and wrong. The article finishes by discussing examples where conceptual confusions result in confused normative judgments focusing in particular on agency, responsibility and moral status. The article argues that disability research should carefully consider the use of theories and empirical knowledge in the light of their ethical implications as well as the lived experiences of disability.

Influence & ethics - Handicap International's analyses, alerts, debates and recommendations on policy and ethics.

HANDICAP INTERNATIONAL
2015

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Influence & Ethics is operated jointly for Handicap International by the Advocacy Team of the Federation and by Handicap International Foundation.

Its aim is to provide information on our advocacy messages and activities, and to promote a dialogue and share analyses and ideas on policies and ethical issues related to Handicap International three main fields of intervention: reduction of armed violence, inclusive development, effective and inclusive humanitarian response

Studies and research at Handicap International : promoting ethical data management

BRUS, Aude
September 2015

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This guide explains the importance of ethical data collection and management. Using Handicap International’s decades experience implementing projects and programmes globally, the report highlights the impact of data collection and the importance of implementing ethical approaches in a variety of situations where data is being collected. It aims to raise the awareness of Handicap International’s operational and technical staff and their partners to the ethical questions to be considered when managing data (preparation, collection, processing, analysis and sharing of information). It reaffirms the ethical principles underpinning the organisation’s actions and concludes with eight ethical recommendations that are applicable to studies and/or research in our intervention settings

Moral wrongs, disadvantages, and disability : a critique of critical disability studies

VEHMAS, Simo
WATSON, Nick
November 2013

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This paper offers a review of Critical disability studies (CDS), an approach which challenges the predominantly materialist outlook of more conventional approaches to the study of disability. The paper “reviews the ideas behind the development of CDS and analyses and critiques some of its key ideas. Starting with a brief overview of the main theorists and approaches contained within CDS, the paper then moves on to normative issues; namely, to the ethical and political applicability of CDS”
Disability & Society, Volume 29, Issue 4

Moral wrongs, disadvantages, and disability: a critique of critical disability studies

VEHMAS, Simo
WATSON, Nick
2013

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Critical disability studies (CDS) has emerged as an approach to the study of disability over the last decade or so and has sought to present a challenge to the predominantly materialist line found in the more conventional disability studies approaches. In much the same way that the original development of the social model resulted in a necessary correction to the overly individualized accounts of disability that prevailed in much of the interpretive accounts which then dominated medical sociology, so too has CDS challenged the materialist line of disability studies. In this paper we review the ideas behind this development and analyse and critique some of its key ideas. The paper starts with a brief overview of the main theorists and approaches contained within CDS and then moves on to normative issues; namely, to the ethical and political applicability of CDS.

Sexual and reproductive health needs assessment with deaf people in Ghana: Methodological challenges and ethical concerns

MPRAH, Wisdom K
2013

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Background: Deafness is a complex and multifaceted phenomenon. The different ways of perceiving and understanding deafness have practical implications for research with deaf people. Whilst the deaf community is not homogenous, it is generally distinct from the hearing population. Consequently, the appropriateness of applying research methods and informed concern processes designed for the hearing population in research with deaf people has been questioned.

 

Objectives: This article reflected on some methodological challenges and ethical concerns arising from conducting a sexual and reproductive health needs assessment with deaf people in Ghana. The aim was to provide some perspectives on some of the challenges associated with doing research with deaf people.

 

Method: The study was a two phase, sequential, mixed methods design, consisting of three focus groups to assist in the development of a survey and then the implementation of the survey for needs assessment data collection. The number of participants in the study was 179, consisting of 26 focus group participants: 7 executives of the Ghana National Association of the Deaf (GNAD), 10 male adults, and 9 female adults. There were 152 survey respondents (students, women and men) and one key informant. All participants, except the key informant, were deaf people.

 

Results: The application of traditional research methods to studies involving deaf participants presents numerous methodological and ethical dilemmas associated mainly with deaf people’s unique cultural and linguistic characteristics.

 

Conclusion: Research methods should not be taken as universal guidelines for conducting research in all settings because of differences in settings.

 

Risks to Client Confidentiality when Communicating Health Information to Blind and Partially Sighted Persons

THURSTON, M
THURSTON, A
2013

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Purpose: This research was carried out to give a more accurate picture of the particular needs of the blind and partially sighted people living in Scotland. It explores the risks to client confidentiality if information is not provided in accessible formats.

 

Method: Data were gathered from a survey of 228 blind and partially sighted persons in 15 Health Authorities across Scotland. The survey reported NHS clients’ experiences of receiving health information in accessible reading formats.

 

Results: The data indicated that about 90% of blind and partially sighted persons did not receive communications from various NHS health departments in a format that they could read by themselves.

 

Conclusions: The implications for client privacy, confidentiality and the wider impact on life and healthcare have been highlighted. The implications for professional ethical medical practice and for public policy are discussed, and recommendations for improved practice are made.

Sterilisation and intellectually disabled people in New Zealand—still on the agenda?

HAMILTON, C
2012

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Support through care and protection within a medical framework, rather than through the idea of independence within the least restrictive environment, continues to guide service provision for intellectually disabled people in the sexuality area. Past practices have included use of involuntary sterilisation. This article outlines the outcome of a search for information undertaken because of concerns that use of sterilisation-related procedures may remain embedded in contemporary approaches to sexuality support management. Verified instances of hysterectomy carried out between 1991 and 2001 were uncovered. Documents tabled at a Parliamentary Select Committee in 2003 expressing concerns about use in relation to young disabled girls were also found. Requests for sterilisation-related procedures exemplify how the right of all vulnerable citizens to full bodily integrity is currently adjudicated in New Zealand. It is suggested that further research is needed to pinpoint and address the underlying social customs through which requests for such procedures are negotiated and resolved.

Human rights indicators : a guide to measurement and implementation

OFFICE OF THE UNITED NATIONS HIGH COMMISSIONER FOR HUMAN RIGHTS (OHCHR)
2012

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This guide is "a reference resource with operational tools, including an approach to identifying quantitative and qualitative indicators, and the corresponding methodology, to promote objective and comprehensive human rights assessments...The objective of this Guide is to bring together materials covering the conceptual, the methodological and the empirical aspects of the approach underlying the identification of context-sensitive indicators to promote and monitor the implementation of human rights. The Guide provides elements of a framework for building the capacity of human rights monitoring systems and facilitating the use of appropriate tools in policymaking, its implementation and monitoring (fig. I). The Guide aims to reach all those who share a commitment to the promotion of human rights and those who are mandated, directly or indirectly, to address human rights issues in the course of their day-to-day work"
HR/PUB/12/5

Paying stories of impairment - parasitic or ethical?|Reflections undertaking anthropological research in post-conflict Sierra Leone

BERGHS, Maria
December 2011

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This article presents ethnographic research in Sierra Leone with people with disabilities. The author explores challenges faced with the research and the importance of engaging in more reciprocal and collaborative communal research using a social model of disability framework to try and access discourses
Journal of Disability Research, Vol 3, No 4

Medicines : corruption and pharmaceuticals

WORLD HEALTH ORGANIZATION (WHO)
December 2009

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This fact sheet gives a brief overview of the key facts regarding corruption in the pharmaceutical supply chain. It focuses on unethical practices in the medicines supply chain, factors contributing to pharmaceutical corruption, the impact of corruption, and the response of the WHO

Genocide by denial : how profiteering from HIV/AIDS killed millions

MUGYENYI, Peter
2008

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This open access book charts the spread of AIDS and its impact on people in villages in Uganda, sub-Saharan Africa and the rest of the world and the unnecessary numbers of deaths, particularly among poor people that it has caused. It also looks at the campaign to gain universal access to anti-retroviral therapy and the limited level of response from the rich world. The author challenges pharmaceutical companies to develop more ethical and humanitarian ways to trade, involving crucial life-saving drugs, and calls for a new world order to ensure entitlement of the poor to rapid humanitarian relief

The medical peace work textbook

ROWSON, M
MELF, K
Eds
2008

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This textbook provides an introduction to medical peace work and includes chapters relating to human rights; the causes and health effects of war and violent conflict; how health workers can promote peace-building and reconstruction; and the health and well-being needs of refugees and immigrants. The book is aimed at doctors, nurses, public health workers and other health professionals, and students. This e-textbook is part of an online course on Medical Peace Work. The book can be consulted, downloaded, or printed for free without registering for the course

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