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Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use

THOMPSON, Stephen
CANNON, Mariah
WICKENDEN, Mary
2020

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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.

A comparison of disability rights in employment: Exploring the potential of the UNCRPD in Uganda and the United States

OJOK, Patrick
GOULD, Robert
2019

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The disability employment policy systems in the US and Uganda are compared, and areas identified to improve implementation by examining the broader socio-cultural contexts that have shaped disability policy and practices of the two countries over time. Using the United Nations Conventions on the Rights of Persons with Disabilities (UNCRPD) as the overarching analytical framework, the analysis is framed within the discussion of the right to employment, as both countries are recognized for policy advances in this domain, but continue to experience low labor market participation for persons with disabilities. It identifies three critical areas that impact the realisation of disability rights in each context: ideological frameworks; hiring and retention initiatives; and state level supports. Ultimately, it considers the limitations of the rights based framework for actualising employment rights in the context of limited state and individual resources. 

 

Disability and the Global South, 2019, Vol.6, No. 2

 

At risk of exclusion from CRPD and SDGs implementation: Inequality and persons with deafblindness. Initial global report on situation and rights of persons with deafblindness

JENSEN, Rune
et al
September 2018

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Representing between 0.2% to 2% of the population, persons with deafblindness are a very diverse yet hidden group and are, overall, more likely to be poor and unemployed, and with lower educational outcomes. Because deafblindness is less well-known and often misunderstood, people struggle to obtain the right support, and are often excluded from both development and disability programmes. This initial global report on the situation of persons with deafblindness seeks to start a dialogue between international disability rights and development stakeholders, and is based on research undertaken by the World Federation of the Deafblind (WFDB) combining the largest population-based analysis of persons with deafblindness conducted to date (disaggregation of 22 population-based surveys from low, middle and high-income countries), an academic literature review, two surveys conducted among members and partners of WFDB and Sense International. Women and men with deafblindness from across the world took part in the Helen Keller World Conference in June 2018, and were consulted to confirm the findings and elaborate on the recommendations for this report.

 

Data and discussion are presented on people with deafblindess and: inequality; poverty; work; education; health; participation on political and public life; and social life. Datasets are included. 

 

Measuring the prevalence of violence against women with disabilities

VAUGHAN, Cathy
et al
February 2018

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This short report summarises discussions during a meeting concerning what is known about violence against women with disabilities and the evidence gaps, with a focus on Asia and the Pacific. It includes a brief overview of the current situation and suggested ways forward for researchers, the kNOwVAWdata initiative and other regional and global initiatives to measure prevalence of violence against women with disabilities, and for relevant regional and national institutions

Challenges in global Indigenous–Disability comparative research, or, why nation-state political histories matter

SOLDATIC, Karen
MELBOE, Line
KERMIT, Patrick
SOMERS, Kelly
2018

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Globally, Indigenous people, also known as First Peoples, have the poorest health outcomes of all population groups, resulting in significantly higher rates of chronic disease, ill-health, and disability. Recent research strongly suggests that Australian First Peoples and the Sami peoples of the Nordic region are positioned at opposite ends of the disability–health spectrum. Australia’s First Peoples, now experience the highest rates of disability in the nation’s recorded history, despite the significant government investment over recent decades in national Indigenous policy. Yet, Nordic Indigenous populations appear to have similar health outcomes and living conditions as the rest of the population in the region. In this paper, we compare some of the global assumptions of the two leading countries of the United Nations Human Development Index– Norway (ranked first) and Australia (ranked second)– and examine the ways in which such rankings act to hide the disparities of life trajectories and outcomes for Indigenous persons living with disability compared to the rest of the population in each country. The findings of the comparative analysis illustrate core areas for consideration when undertaking in-depth comparative research with First Nation’s peoples. This includes issues surrounding the differentiated political significance of national population data systems for local Indigenous peoples in their struggles for recognition, and the nuanced processes of population data categorisation that are developed as a result of First Nation’s localised struggles for recognition, respect and rights under processes of European colonisation.

 

Disability and the Global South, 2018, Vol.5, No. 2

National Mechanisms for Reporting and Follow-up : A practical guide to effective state engagement with international human rights mechanisms

United Nations High Commissioner for Refugees (UNHCR)
December 2016

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This Guide seeks to provide practical advice on the critical elements that States need to consider when establishing or strengthening their national mechanism for reporting and follow-up, and illustrates this advice with examples of State practice. It is based on the more comprehensive Study of State Engagement with International Human Rights Mechanisms (HR/PUB/16/1/Add.1), which contains more detailed information on these practices

Participatory and emancipatory approach in disability research. Possible allies for supporting active citizenship, civil rights and actions of social innovation.

TRAINA, Ivan
August 2016

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Participatory and emancipatory approaches in disability research are addressed through three research questions related to: the extent the participatory approach can encourage an active citizenship paradigm for the involvement of disabled people; the extent emancipation through research can contribute to the affirmation of a civil rights model of disability; and the extent it is possible to consider these approaches as tools that can support the design and implementation of socially innovative actions. The paper considers the academic literature and a reviews international documents, assuming a disability perspective

Considering Disability Journal. DOI: 10.17774/CDJ12015.2.2057584

Opera : a four step framework for monitoring economic, social and cultural rights fulfillment

CENTER FOR ECONOMIC AND SOCIAL RIGHTS (CESR)
March 2016

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This infographic illustrates the OPERA framework. This framework is for monitoring economic, social and cultural rights fulfilment and consists of four levels of analysis: outcomes, policy efforts, resources and assessment. The infographic lays out specific benchmarks and for what is measured by each level of analysis and how each concept is to be measured

Advancing human rights : update on global foundation grantmaking : key findings

LAWRENCE, Steven
et al
2015

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This paper analyses the current (as of 2012) state of global human rights funding. Through the use of tables, graphs and other methods of data presentation, the International Human Rights Funders Group​ (IHRFG) outline the largest grants foundations, where and how the money is spent by these foundations, and the causes which these funds are spent on

Key findings

FOUNDATION CENTER
INTERNATIONAL HUMAN RIGHTS FUNDERS GROUP
2015

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A webpage from the Foundation Center, which gives hyperlinked access to the funding profiles of various international causes such as disability, access to justice, and gender equality. In addition there are links to the annual Key Findings on Global Foundation Grantmaking reports published by the Center 

Disability at a glance 2015: Strengthening employment prospects for persons with disabilities in Asia and the Pacific

UN ECONOMIC AND SOCIAL COMMISSION FOR ASIA AND THE PACIFIC (ESCAP), Social Development Division
2015

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This report, the fifth edition in the Disability at a Glance series, focuses on barriers to the employment of persons with disabilities in the Asia-Pacific region, and offers solutions to strengthen their employment prospects. It offers a regional overview of disability legislation, policies and practices, as well as relevant country-specific information with a particular emphasis on the employment of persons with disabilities. The information is drawn from a targeted disability survey carried out in 2015 by the ESCAP secretariat, and research undertaken by other organizations and scholars.

The publication consists mainly of two parts. In Part 1, Chapter 1 discusses key employment trends shaping the experiences of persons with disabilities in Asia and the Pacific. Chapter 2 considers the major barriers that persons with disabilities face as they seek to find decent work in the open labour market. Chapter 3 explores a number of strategies used by governments and in the private sector to promote greater access to employment for persons with disabilities. Finally, Chapter 4 lays out a series of action points governments should consider in their efforts to remove the numerous employment barriers faced by many millions of disabled people. In Part 2, country snapshots provide the latest demographic, socioeconomic and employment-specific data from 58 countries in 5 ESCAP subregions .

Beneath the rhetoric: Policy to reduce the mental health treatment gap in Africa

COOPER, Sara
2015

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In this paper I problematize knowledge on reducing the ‘gap’ in treatment produced by 14 national mental health policies in Africa. To contextualize this analysis, I begin with a historic-political account of the emergence of the notion of primary health care and its entanglement within decolonization forces of the 1960s. I unpack how and why this concept was subsequently atrophied, being stripped of its more revolutionary sentiments from the 1980s. Against this backdrop, I show how, although the 14 national mental health policies are saturated with the rhetoric of primary health care and associated concepts of community participation and ownership, in practice they tend to marginalize local meaning-systems and endorse a top-down framework heavily informed by colonial medicine. The policies thus end up reproducing many of the very Eurocentric assumptions that the original primary health care notion sought to transcend. More specifically, the paradigms of evidence-based research/practice and individualised human rights become the gatekeepers of knowledge. These two paradigms, which are deeply embedded within contemporary global mental health discourse, are legislating what are legitimate forms of knowing, and by extension, valid forms of care. I argue that a greater appreciation of the primary health care concept, in its earliest formulation, offers a potentially fruitful terrain of engagement for developing more contextually-embedded and epistemologically appropriate mental health policies in Africa. This in turn might help reduce the current ‘gap’ in mental health care treatment so many countries on the continent face.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 3

The state of the world's children 2014 in numbers : every child counts

UNITED NATIONS CHILDREN’S FUND (UNICEF)
January 2014

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This report highlights the critical role data and monitoring play in realising children’s rights. It presents an updated compendium of statistics and data (which has been produced thirty years after the initial report) relating to the position of children throughout the world but particularly within the Global South. The data indicators cover a vast range: from demography, health and education, to rate of progression, child mortality, and disparities by household wealth. It emphasises that credible data, disseminated effectively and used correctly, make change possible to target interventions that help right the wrong of exclusion by identifying needs, supporting advocacy, gauging progress and holding duty bearers to account

A deeper silence : the unheard experiences of women with disabilities : sexual and reproductive health and violence against women in Kiribati, Solomon Islands and Tonga

SPRATT, Joanna
March 2013

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"This report contains information gained in situation analyses exploring the SRH needs of women with disabilities in three Pacific Island countries: Kiribati, Solomon Islands and Tonga. This work was carried out over a four-month period spread out between October 2010 and September 2011. UNFPA undertook these situation analyses to gain greater understanding of the opportunities and needs experiencedby women with disabilities in relation to their ability to realize their sexual and reproductive rights"

Sustaining human development : addressing NCDs and disability across the lifecourse

THE NCD ALLIANCE
et al
2013

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This report explores three interconnected global trends — a growing burden of non-communicable diseases (NCDs), the rising prevalence of disability, and changing global population demographics (including rapidly ageing populations). The report highlights that there issues were collectively neglected as policy priorities during the era of the Millennium Development Goals (MDGs). It stresses that the unique opportunity to ensure a future framework that fully integrates NCDs, that goals and targets drive progress for all people including persons with disabilities, and that a lifecourse and rights-based approach underpins all goals and targets to ensure no one is left behind

Armed violence and disability : the untold story

THAPA, Rashmi
THALER, Kai
2012

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"This study aims to understand the links between armed violence and impairments that can lead to disabilities. It focuses on individuals who sustain impairments resulting from incidents of armed violence. The Disability Creation Process is adapted to analyse the combination of health problems, discrimination and socio- economic exclusion that can lead to disability for people who have sustained serious injury and/or lasting impairments as a result of armed violence...This report is written in a linear progression keeping the research project’s goals, objectives and approach as its backdrop. Chapter 1 (introduction) gives an overview of armed violence along with the justification of this research and its methods. Chapter 2 presents the findings from the four case study regions in countries, situated within its contextual analysis. Each case study draws on its discussion and summary of findings. Chapter 3 presents the discussion and lessons learned from this research, placing assistance and people at the centre of armed violence initiatives. Finally, a glossary, Annexes and references as endnotes are at the end of the report with notes at the end of every page"

The OPERA framework : assessing compliance with the obligation to fulfil economic, social and cultural rights

CORKERY, Allison
WAY, Sally-Anne Way
OTERO, Victoria Wisniewski
2012

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“This paper presents a practical framework for integrating different tools and techniques in order to provide a more comprehensive assessment of how public policies comply with the obligation to fulfill ESC rights. The OPERA framework (so called because it triangulates Outcomes, Policy Efforts and Resources to make an overall Assessment) articulates relevant human rights standards and principles to take into account when monitoring ESC rights fulfillment and offers practical guidance on which tools and techniques might be employed to evaluate them. These range from simple descriptive statistics that summarize data to more complex fiscal policy and budget analysis that assess the availability and allocation of resources. By making explicit this crucial link between the various human rights standards and principles that underpin the obligation to fulfill and the different assessment methods available to monitor them, the framework enables a systematic approach to building evidence of failures to fulfill ESC rights”

Assessing fiscal policies from a human rights perspective : methodological case study on the use of available resources to realize economic, social and cultural rights in Guatemala

CORKERY, Allison Corkery
EVA, Maria Jose
2012

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This report is a “methodological case study on the use of available resources to realize economic, social and cultural rights in Guatemala…To assess Guatemala’s compliance with its development and human rights commitments, the study adopted a multidisciplinary approach, combining a range of quantitative and qualitative research techniques drawn from the fields of human rights law, public policy analysis and development economics. This paper provides a step-by-step explanation of the methodological approach designed for the “Rights or Privileges” project, in order to illustrate the application of CESR’s analytical framework OPERA (so called because it triangulates evidence gathered on Outcomes, Policy Efforts and Resources to make an overall Assessment)”

Mental health atlas

WORLD HEALTH ORGANISATION (WHO)
2011

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This report "represents the latest estimate of global mental health resources available to prevent and treat mental disorders and help protect the human rights of people living with these conditions. It presents data from 184 WHO Member States, covering 98% of the world’s population. Facts and figures presented in Atlas indicate that resources for mental health remain inadequate. The distribution of resources across regions and income groups is substantially uneven and in many countries resources are extremely scarce. Results from Atlas reinforce the urgent need to scale up resources and care for mental health within countries"

Access to services for people with disabilities in Freetown, Sierra Leone

PILLERON, Sophie
2011

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"The purpose of the DECISIPH project is to promote the rights of people with disabilities in six countries in West Africa: Burkina Faso, Niger, Mali, Senegal, Sierra Leone and Togo. The first expected outcome of the project is to enhance the availability and access to relevant and reliable information on people with disabilities, their rights and their organisations in order to foster advocacy campaigns by disabled people's organisations. The aim of the study was to analyse and compare access to services for people with disabilities with that for people without disabilities in the project's intervention zones. This study in no way attempts to determine the disability prevalence rate. A cross-sectional survey was carried out in several of the DECISIPH project countries. Despite its limitations, this was the first study to be conducted in Sierra Leone and the first to provide data for gaining a better understanding of access to services for people with disabilities compared to that of people without disabilities"
SD/RS 06 No 8

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