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COVID-19 Disability Rights Monitor

2020

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Evidence is emerging that persons with disabilities are being disproportionately affected by the Coronavirus pandemic and emergency measures being taken by governments worldwide. As governments rush to respond to the virus, it is more critical than ever to guarantee that measures taken are fully inclusive of persons with disabilities and prevent human rights violations from taking place.

 

With the endorsements of the United Nations Special Rapporteur on the Right to Health, Mr Dainius Pūras, and the UN Special Rapporteur on the Rights of Persons with Disabilities, Ms Catalina Devandas Aguilar, a coalition of six disability rights organisations is today launching a major international monitoring initiative entitled “COVID-19 Disability Rights Monitor” to conduct rapid independent monitoring of state measures concerning persons with disabilities. The first element of this global initiative is the launch of two surveys requesting official information from governments and requesting the testimonies of persons with disabilities and their representative organisations. The surveys aim to collect information about what states are doing to protect core rights of persons with disabilities including the rights to life, access to health and essential services.

COVID-19 and the rights of persons with disabilities: Guidance

Office of the United Nations High Commissioner for Human Rights
April 2020

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This guidance aims to:

  • bring awareness of the pandemic’s impact on persons with disabilities and their rights;
  • draw attention to some promising practices already being undertaken around the world;
  • identify key actions for States and other stakeholders;
  • provide resources for further learning about ensuring rights based COVID-19 responses inclusive of persons with disabilities.

Topics are:

1. What is the impact of COVID-19 on the right to health of persons with disabilities

2. What is the impact of COVID-19 on persons with disabilities who are living in institutions

3. What is the impact of COVID-19 on the rights of persons with disabilities to live in the community

4. What is the impact of COVID-19 on work income and livelihood of persons with disabilities

5. What is the impact of COVID-19 on the right to education of persons with disabilities

6. What is the impact of COVID-19 on the right of persons with disabilities to protections from violence

7. What is the impact of COVID-19 on specific population groups in which persons with disabilities are overrepresented

Transformative equality: Court accommodations for South African citizens with severe communication disabilities

WHITE, Robyn M
BORNMAN, Juan
JOHNSON, Ensa
TEWSON, Karen
NIEKERK, Joan van
April 2020

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Background: Persons with disabilities are generally at greater risk of experiencing violence than their peers without a disability. Within the sphere of disability, individuals with severe communication disabilities are particularly vulnerable and have an increased risk of being a victim of abuse or violence and typically turn to their country’s criminal justice system to seek justice. Unfortunately, victims with disabilities are often denied fair and equal treatment before the court. Transformative equality should be pursued when identifying accommodations in court for persons with communication disabilities, as the aim should be to enable such individuals to participate equally in court, without barriers and discrimination.

 

Objectives: This research aimed to identify court accommodations recommended by legal experts, which could assist individuals with severe communication disabilities in the South African court.

 

Method: A qualitative design was used to conduct a discussion with a panel of legal experts.

 

Results: Using Article 13 (Access to Justice) of the Convention on the Rights of Persons with Disabilities (CRPD) as a human rights framework, four themes were identified: equality, accommodations, participation and training of professionals.

 

Conclusion: Foreign and national law clearly prohibits discrimination against persons with communication disabilities because of their disability and state that they should be given fair and equal access to the court system. For transformative equality to be achieved, certain rules and laws need to be changed to include specific accommodations for persons with communication disabilities so that they may be enabled to participate effectively in court in the criminal justice system.

 

 

 

African Journal of Disability, Vol 9, 2020

Recommendations for Immediate COVID-19 Action

Marcie Roth
March 2020

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This document provides recommendations for rapid response solutions for federal and state governments to close the real and anticipated gaps in the COVID-19 outbreak and public health emergency-related continuity of operation for people with disabilities, older adults, and people with access and functional needs. Our recommendations include contingency plans for disability and aging services, supports, and programs funded directly with federal or state funds or through federal assistance to state, local, tribal and territorial governments and non-government providers.

COVID-19 and International Humanitarian Law

INTERNATIONAL COMMITTEE OF THE RED CROSS (ICRC)
March 2020

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International humanitarian law (IHL) is a key legal framework that provides crucial safeguards to people affected by armed conflicts. This overview summarizes some of the main provisions of IHL that may be particularly relevant during the COVID-19 pandemic

National call to action: COVID-19

MOYAWID
March 2020

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A coalition of disability rights and emergency management experts from across the USA issued an urgent call to action for immediate strategies and solutions from the federal government and governments at every level, including local, state, tribal and territorial, to address the specific needs of persons with disabilities throughout the COVID-19 outbreak and all public health emergencies.

Advancing equality - How constitutional rights can make a difference worldwide

HEYMANN, Jody
SPRAGUE, Aleta
RAUB, Amy
2020

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Combining a comparative analysis of equal rights in the constitutions of all 193 countries with inspiring stories of activism and powerful court cases from around the globe, the book traces the trends in constitution drafting over the past half century, and examines how stronger protections against discrimination have transformed lives. Looking at equal rights across gender, race and ethnicity, religion, sexual orientation and gender identity, disability, social class, and migration status, the authors uncover which groups are increasingly guaranteed equal rights in constitutions, whether these rights on paper have been translated into practice, and which nations and protections from discrimination lag behind

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

The Convention on the Rights of Persons with Disabilities and the Islamic Tradition: The question of legal capacity in focus

GHALY, Mohammed
2019

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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.

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

Between duty and right: disabled schoolchildren and teachers’ ableist manifestations in Sweden

GILLBERG, Claudia
PETTERSSON, Andreas
2019

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In this article we discuss ableist manifestations about chronically ill and disabled schoolchildren in Sweden. On claiming their right to schooling, these children risk being excluded due to not conforming with norms while being refused alternative formats that would enable participation. They are then accused of not attending school and construed as problematic. Parents are derided as mollycoddling perpetrators by teachers who perceive themselves as superior knowers of disability and illness, polarising an already infected school debate. Alternative formats for participation are derided, claiming that certain disabilities do not exist or that parents exaggerate their children’s symptoms. We concede that teachers’ poor work environments due to underfunding and unreasonable workloads are problematic, but we are adamant that unfavourable work conditions must not entail unethical professional conduct. We hope this article will contribute to putting the situation of chronically ill and disabled schoolchildren in Sweden on the radar of Critical Disability Studies as well as in relevant fields of practice and that it might stimulate a change in public debate.

Physical Disability, Rights and Stigma in Ghana: A Review of Literature

GRISCHOW, Jeff
MFOAFO-M’CARTHY, Magnus
VERMEYDEN, Anne
CAMMAERT, Jessica
2019

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Purpose: This is a survey of peer-reviewed articles focussed on the causes and consequences of stigma towards persons with physical disability in Ghana.

 

Method: After a systematic search of the online databases EBSCOhost, ProQuest, PubMEd and Web of Science for peer-reviewed articles on disability in Ghana, 26 articles were chosen for critical review.  The three main selection criteria were: the articles had to be peer-reviewed, they had to be based on interviews with Ghanaians in the field, and they had to discuss stigma and human rights.  For analysis, the content of the articles was grouped under two sections: major themes (human rights, causes of stigma, consequences of stigma) and policy recommendations (economics, medical services/healthcare, affirmative action, attitudes and awareness-raising, inclusion of cultural beliefs).

 

Results:   This review found that most of the studies attribute stigma to negative attitudes towards Ghanaians with disability, and many highlight beliefs among Ghanaians that disability is caused by spiritual and supernatural forces. The consequences, according to most authors, are social, economic and political exclusion. Policy recommendations include improving government policy, increasing funding for disability programmes, changing public attitudes, and paying attention to Ghanaian culture and tradition in designing disability interventions. While these are valid points, the authors of this paper are of the opinion that the literature also suffers from lack of a deep understanding of the historical and socio-cultural roots of supernatural beliefs in Ghana.

 

Conclusion: The 26 studies discussed in this review show that since 2006 very good work has been produced on disability in Ghana, especially by Ghanaian disability scholars.

 

It is hypothesised, however, that a full understanding of disability and stigma in Ghana must be based on deeper research into the roots of the beliefs that drive stigma.  Future work therefore should focus on deepening the analysis of cultural beliefs towards disability in Ghana, in order to understand fully the roots of culturally-based disability stigma. More research into the economic causes and consequences of disability is also recommended, without which a full analysis of cultural stigma will not be possible.

Children with Cerebral Palsy in Bangladesh: Their Contribution to the Development of a Rehabilitation Training Programme

ZUURMOND, Maria
MAHMUD, Ilias
HARTLEY, Sally
2019

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Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.

 

Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the activity, and it generated rich information.

 

Results: ‘Inclusion in play’ and ‘being able to attend school’ made the children happy and were their two main priorities, yet were not key issues for parents. The children were frustrated by their dependence on others for day-to-day activities such as feeding, bathing, and transport to school. Children also played an important part in encouraging their parents to attend the training course.

 

Conclusion: This study showed that valuable information can be gathered from children with cerebral palsy by using a simple and adaptable participatory research tool. Children’s views and priorities sometimes differed from those of their parents and carers, and could be useful for developing more relevant and valid interventions. Children need to be recognised as important ‘agents of change’ within their own rehabilitation. This methodology is in harmony with the UNCRPD recommendations, and supports inclusive and rights-based intervention development.

Disability, socialism and autonomy in the 1970s: case studies from Denmark, Sweden and the United Kingdom

RYDSTRÖM, Jens
2019

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n the 1970s, grassroots disability movements in many countries changed the thinking around disability and disability politics. Nonetheless, they were also part of larger political upheavals in the western world. How were they inspired by the socialist, feminist, and gay and lesbian movements? In addition, how did they relate to non-disabled allies? Organisations in Denmark and Sweden are investigated and compared to early disability-rights movements in the United Kingdom. Independently of each other, all groups developed materialist models, although only in Sweden and the United Kingdom did this lead to a linguistic distinction between ‘impairment’ and ‘disability’. Danish activists would rather use provocative language, while developing a social understanding of disability. They were also the only ones to discuss gender and sexuality. There are more similarities than differences between the movements, although the Danish specificities contributed to improvements in how Danes with disabilities can develop a positive sex life.

  • In the 1970s, new political ideas grew about ways of living, equality between the sexes, gay and lesbian rights, and sexual freedom. New groups started to talk about how to understand disability.
  • This article investigates whether the new disability groups in Denmark and Sweden talked about these ideas and whether they involved non-disabled people.
  • Danish and Swedish disability groups are compared to early disability rights organisations in the United Kingdom. The Danish and Swedish disability groups were more open to non-disabled members than groups in the United Kingdom.
  • The article also found that the Danish group discussed sexuality a lot. In Sweden and the United Kingdom, the disability groups did not talk about sex at all.

Alternative spaces of failure. Disabled ‘bad boys’ in alternative further education provision

JOHNSTON, Craig
BRADFORD, Simon
2019

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This article draws from an ethnographic study of a group of school-aged disabled white working-class and self-proclaimed ‘bad boys’ in one Alternative Provision (AP) in an English further education college. These young disabled students’ disabilities contribute to the formation of their revalorised – yet stigmatised – identities. Stigma also facilitates the governance of their educational careers. The article considers how this group understands its precarious existence in and beyond AP and how these young men resist the conditions of their devaluation. Despite multiple, stigmatising experiences, the article shows how they appropriate space and (social) capital, often in tension with other students and college staff. The article suggests that there are questions about AP as an appropriate means to confer value upon young disabled students.

  • White, disabled, working-class male students are increasingly placed into Alternative Provisions intended for young people who would otherwise not receive suitable education for various reasons. The experiences of such students have received limited research attention.
  • This article is based on research conducted with young people who attend a provision located within an English further education college. The research found that these young people experience a lack of support, low trust and disregard from peers and some professionals at a crucial time in their educational careers.
  • It is important to understand disability in relation to other social differences – social class and gender, for example – as the combined impact of these in educational settings may undermine future career prospects and life chances.
  • The article emphasises the importance of education practices that develop reciprocity, trust and cooperation in improving the often oppressive circumstances young disabled people face in post-school settings.

The effect of a serious game on empathy and prejudice of psychology students towards persons with disabilities

OLIVIER, Linda
STERKENBURG, Paula
Van RENSBURG, Esmé
2019

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Background: Much has been done regarding the promotion of equality in rights in terms of legislation, but persons with disabilities remain marginalised in society. Negative attitudes and prejudice contribute towards numerous challenges for persons with disabilities.

 

Objectives: This study investigated the level of empathy and prejudice of students towards persons with disabilities, and the effect of the use of a serious game to enhance empathy and reduce prejudice.

 

Method: A randomised controlled experiment with pre-test, post-test and follow-up test was used. Availability sample (N = 83) of psychology university students (22% males; 78% females) was divided into an experimental group that played the serious game The World of Empa and two control groups. The first control group received texts on case studies and information on reacting in a sensitive and responsive way, and the second control group received no intervention.

 

Results: Participants have average levels of empathy (score: 32 to 52) and strong prejudice (score: 0.08 to −0.87) towards persons with disabilities. The intervention results in a slight short-term effect for prejudice and sub-scale measurements of empathy. A slight improvement was noted in participants’ ability to transpose themselves imaginatively into the experience of disabled characters.

 

Conclusion: The findings contribute to the understanding of empathy as a dynamic component that can be positively influenced by, for example, a serious game. These results have teaching implications on the facilitation of empathy. The short-term effect on empathy and prejudice towards persons with disabilities may contribute to bridge the inequality experienced by persons with disabilities.

 

African Journal of Disability, Vol 8, 2019

Persons with profound intellectual disability and their right to sex

VEHMAS, Simo
2019

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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.

Governmentality of disability in the context of lifelong learning in European Union policy

KAUPPILA, Aarno
KINNARI, Heikki
NIEMI, Anna-Maija
2018

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The possibility to participate in education and lifelong learning has been introduced in EU disability policy in recent decades as one of the key means to improve the socioeconomic position of disabled persons. Simultaneously, lifelong learning has been developed as the defining concept of EU education policy to increase social cohesion and economic competitiveness. However, the education, employment rate and socioeconomic status of disabled persons have remained far below the EU average. In this article, we theo- rize governmentality to explore (1) how EU lifelong learning and disability policy discourses constitute and govern disabled persons and (2) how disabled persons are positioned in the policy dis- courses. The data consist of the most relevant EU policy documents concerning lifelong learning and disability policy in the twenty-first century. We argue that the policies constitute and govern disabled persons as a group who do not fulfil the premises set for the lifelong learner, and that consequently, policy dis- courses marginalize disabled persons instead.

Maintaining professional integrity: experiences of case workers performing the assessments that determine children’s access to personal assistance

HULTMAN, Lill
FORINDER, Ulla
FUGL-MEYER, Kerstin
PERGERT, Pernilla
2018

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This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.

Aligning with the flow of control: A grounded theory study of choice and autonomy in decision-making practices of people with intellectual disabilities

CAREY, Eileen
2018

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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.

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