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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.

Disability Inclusive Development - Bangladesh Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Bangladesh?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Bangladesh. It will be helpful for anyone interested in disability inclusion in Bangladesh, especially in relation to stigma, employment, education, health, and humanitarian issues.

Disability Inclusive Development - Nigeria Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Nigeria?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Nigeria. It will be helpful for anyone interested in disability inclusion in Nigeria, especially in relation to stigma, employment, education, health, and humanitarian issues.

Recording of the Virtual Event: COVID-19 Crisis and Promoting Rights of Women and Girls with Disabilities

IDA
April 2020

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Recording of the Virtual Event: COVID-19 & Promoting the Rights of Women and Girls with Disabilities

On April 8, 2020, IDA in collaboration with the EDF held the Virtual Event: COVID-19 crisis and Promoting Rights of Women and Girls with Disabilities. The virtual event with 572 registered participants was an effort to provide space and prevent any loss of momentum in promoting the rights of women and girls with disabilities in the global gender equality agenda. 

During the webinar, the panelists have discussed various topics ranging from the inclusion of women and girls with disabilities into mainstream gender mainstreaming strategies, multiple forms of discrimination faced by women and girls with various forms of disability, and the impact of the current pandemic on their well-being.

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.

At the Margins of Society: Disability Rights and Inclusion in 1980s Singapore

ZHUANG, Kuansong Victor
2020

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A new era focused on the inclusion of disabled people in society has emerged in recent years around the world. The emergence of this particular discourse of inclusion can be traced to the 1980s, when disabled people worldwide gathered in Singapore to form Disabled Peoples’ International (DPI) and adopted a language of the social model of disability to challenge their exclusion in society. This paper examines the responses of disabled people in Singapore in the decade in and around the formation of DPI. As the social model and disability rights took hold in Singapore, disabled people in Singapore began to advocate for their equal participation in society. In mapping some of the contestations in the 1980s, I expose the logics prevailing in society and how disabled people in Singapore argued for their inclusion in society as well as its implications for our understanding of inclusion in Singapore today.

 

Disability & the Global South (DGS), 2020, Vol. 7 No. 1

Disability Data Lab learning paper: a practical guide to disability data

JENKINSON, Astrid
et al
December 2019

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The Bond Disability and Development Group (DDG) has commissioned this learning paper to summarise discussions which took place at the DDG’s Data Lab workshop, held in London on 22 October 2019, and to be used as a reference document going forward. This first workshop focused on why organisations need to collect disability data; what tools are available and practical ways in which these can be used. This learning paper provides a summary of these discussions and can act as a guide and reference tool for organisations looking to be more inclusive in their programming, generally, and in their data collection practices, specifically. A number of case studies and numerous resource references are provided.

Disability stigma in the Disability Inclusive Development (DID) programme countries: an overview of the evidence

ROHWERDER, Brigitte
September 2019

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This literature review outlines factors contributing to disability stigma in low- and middle-income countries. Overviews of disability stigma in the six Disability Inclusive Development (DID) programme countries – Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania – are presented next. The review then looks at the literature on interventions to reduce disability stigma. Interventions aimed at addressing disability stigma in developing countries have been aimed at the intrapersonal and familial level; the interpersonal level; and the structural level.

Rehabilitation for the realisation of human rights and inclusive development

COLE, Ellie
et al
July 2019

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This report illustrates how rehabilitation contributes to achievement of several of the Sustainable Development Goals (SDGs), improves global health, and promotes the realisation of human rights for all. The purpose of this report is to provide evidence to stakeholders upon which to build successful strategies to improve the availability of quality, coordinated, affordable, and user-centred rehabilitation. By situating disability and rehabilitation within global discourse and policy, it is intended to provide guidance on the implementation of effective rehabilitation-focused policy and practice, contributing to progress towards global development goals.

SDGs 1,3,4,5,8, 10 and 11 are considered

The report concludes with sets of specific recommendations for different stakeholders (states, donors and civil society, including disabled people’s organisations), which have the potential to strengthen rehabilitation services and improve the health and wellbeing of millions around the world. Included in annex are case studies of government donors and their progress towards meeting the recommendations set out in this report. These case studies are intended to serve as examples for stakeholders for how some of the recommendations have already been included within national policies and activities, where gaps exist and identify areas for improvement.
 

Forgotten in a crisis: Addressing dementia in humanitarian response

GLOBAL ALZHEIMER'S & DEMENTIA ACTION ALLIANCE
ALZHEIMER'S DISEASE INTERNATIONAL
ALZHEIMER'S PAKISTAN
May 2019

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Every 3 seconds someone develops dementia and it’s one of the leading causes of death worldwide. Despite being some of the most at-risk in times of natural disaster, conflict and forced migration, there is a lack of awareness that dementia is a medical condition, meaning people with dementia are being neglected when they’re most in need of support.

This report investigates ways humanitarian emergency responses can protect and support people living with dementia. It draws on the experiences of people affected by dementia, Alzheimer’s specialists in affected countries, humanitarian organisations and inter-governmental organisations including the World Health Organisation and UNHCR.

Our findings reflect a wider issue of a lack of support for older people and those with disabilities in humanitarian response. We have found that people with dementia are systemically overlooked, due to a lack of global awareness of the condition and associated stigma.

The report is a collaboration between the Global Alzheimer’s & Dementia Action Alliance, Alzheimer’s Disease International and Alzheimer’s Pakistan.

Informe regional America Latina Bajo El enfoque de la convencion sobre los derechos de las personas con discapicidad

March 2019

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Este primer informe regional de la situación de las personas con discapacidad en América Latina ha sido elaborado por RIADIS con la finalidad de realizar un primer acercamiento al estado de la implementación de los ODS bajo el enfoque de la CDPD y la reformulación del Programa de Acción del Decenio de la Organización de los Estados Americanos (OEA). En este sentido, el informe pretende identificar los avances y buenas prácticas que se encuentran realizando los gobiernos de la región en materia de la aplicación de la CDPD a través de la implementación de los ODS en la región, así como establecer las oportunidades y los desafíos que se presentan para que las organizaciones de personas con discapacidad puedan seguir conquistando nuevos espacios y haciendo efectivo el ejercicio pleno de sus derechos. El presente informe se enfoca en diez principales áreas temáticas, identificadas como prioritarias por las personas con discapacidad de la región, quienes aportaron al abordaje de las mismas, tanto a través de las respuestas que se recopilaron de la encuesta inicial, como a través de las contribuciones grupales e individuales obtenidas en el taller de revisión del borrador del informe regional.

 

Las diez áreas temáticas que se abordan en el presente informe son las siguientes: 1. Educación inclusiva 2. Mujeres con discapacidad 3. Personas indígenas con discapacidad 4. Inclusión laboral de las personas con discapacidad 5. Reducción de riesgos de desastres y acción humanitaria 6. Accesibilidad 7. Acceso a la justicia 8. Derecho a vivir de forma independiente y ser incluido en la comunidad 9. Recopilación de datos 10. Participación de las personas con discapacidad

HIV prevention, treatment and care programming for people with disabilities (Disability Inclusion Helpdesk Report No. 7)

BELL, Emma
CORBY, Nick
February 2019

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This document provides a rapid review of the evidence on disability inclusive approaches to HIV prevention and response. The purpose of this review is to inform DFID’s policy and programming around integrated approaches to HIV, care and treatment. After briefly outlining the methodology in section 2, section 3 provides an overview of the evidence base on disability and HIV programming, and section 4 provides an overview of key barriers to accessing HIV-related services for people with disabilities. Finally, section 5 provides a series of case studies highlighting lessons learned including key enabling factors. This review finds that overall the evidence base on disability inclusive HIV programming is limited, with the majority of evidence from disability-specific interventions targeted at specific groups of people with different impairments

Deaf people in Pacific Island countries. A design for the Pacific deaf strenthening program

JENKIN, Elena
WATERS, Philip
SEN, Krishneer
ADAM, Robert
2019

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Pacific Disability Forum (PDF) is committed to advancing the rights of people with disabilities living in Pacific Island Countries (PICs). Developing an evidence base to understand more about deaf children and adults’ experiences and priorities will better assist communities, DPOs, organisations and governments to plan inclusive communities, policy and programs.

 

The development of the design was deliberately planned to be highly collaborative and the team met with 161 people who shared their views. This provided opportunities for deaf people and DPOs to contribute to the design, along with representatives from government, non-government and regional organisations. This collaboration occurred in three countries in the Pacific, namely Solomon Islands, Samoa and Fiji. Within Fiji, the design team met with deaf and DPO representatives of other PIC’s along with regional multi-lateral organisations such as UNICEF and the Pacific Island Forum Secretariat (PIFS). Consultations also occurred remotely with supporting organisations and development workers that are focused on disability inclusion in the Pacific. The design undertook a desk review to learn what is known about deaf children and adults in the Pacific region. Participatory methods ensured the process was highly respectful of the views of deaf people. DPOs, other organisations and governments will be asked to identify to what extent deaf children, adults and their families are participating in services, programs and establishments, and to identify potential supports required to increase deaf people’s participation.  A capacity building element has been carefully built into the design. The report is divided into three parts. Part A rationalizes the design, with background information and a brief desk review to collect evidence from and about deaf children and adults in the Pacific. Part B describes the design development process and reports findings. Part C details the design for the situation analysis.  

Need to know guidance: Working with persons with disabilities in forced displacement

UNHCR
2019

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In situations of forced displacement, persons with disabilities have the same rights and basic needs as others and face the same challenges as other individuals. They also face particular protection risks such as heightened risk of violence, exploitation and abuse, as well as high levels of stigma.  Guidance is given concerning the application of an age, gender and diversity approach, to achieve protection, assistance and solutions. Example approaches are provided concerning: non discrimination; changing attitudes about disability and promoting respect for diversity; Improving identification and data collection; making all facilities physically accessible; ensuring accountability mechanisms are inclusive; preventing and responding to violence and abuse; and building links with organizations of persons with disabilities & other national and local actors.

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

 

Access to human rights for persons using prosthetic and orthotic assistive devices in Sierra Leone

MAGNUSSON, Lina
BICKENBACH, Jerome
January 2019

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Access to human rights of persons with disabilities who use prosthetic and orthotic assistive devices was assessed, and groups of participants were compared in terms of gender, residential area, income, and type and level of assistive device. The addressed areas were rights to: health, a standard of living adequate for health, education, marry and establish a family, vote, and work.

Questionnaires were used to collect self-reported data from 139 lower-limb prosthetic and orthotic users in Sierra Leone

 

Journal of Disability and Rehabilitation, Volume 42, 2020 - Issue 8

https://doi.org/10.1080/09638288.2018.1515267

Community-Based Rehabilitation programming for sex(uality), sexual abuse prevention, and sexual and reproductive health: A scoping review

SCHINDELER, Tamara Lee
ALDERSEY, Heather
2019

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Purpose: The United Nations Convention on the Rights of Persons with Disabilities aims to protect the human rights and dignity of all people with disabilities. In low-and middle-income countries (LMICs), one way this goal is pursued is through Community-Based Rehabilitation (CBR), a strategy to support the full and equal participation of people with disabilities. In spite of policy and community-based interventions, people with disabilities continue to experience inequities in many areas of life - one of these being their sexual and reproductive health (SRH) rights. This scoping review explored the literature to understand how CBR programming has supported sex(uality), sexual abuse prevention, and SRH for people with disabilities.

 

Methods: Arksey and O’Malley’s (2007) framework was used to identify relevant studies in academic and grey literature. This included six databases, the WHO website, and five Regional CBR Network websites. Relevant studies were selected using criteria and data was charted to examine the quantity, variation, and nature of CBR interventions.

 

Results: Fifteen studies were identified. The majority were implemented in Africa; targeted all people with disabilities, regardless of gender, age, or type of disability; and frequently focussed on the topic of HIV/AIDS.  The interventions were most commonly designed to educate people with disabilities on issues of sex(uality), sexual abuse prevention, or SRH.

 

Conclusion: A number of studies discussed CBR programmes that aim to support sex(uality), sexual abuse prevention and SRH for people with disabilities, yet gaps were identified that indicate that certain populations and topics are being overlooked by CBR interventions.

 

Implications: CBR practitioners can focus on filling the gaps identified in this review through future programming. Further action must concentrate on implementing a variety of CBR Matrix strategies to address comprehensive issues related to sex(uality), sexual abuse prevention, or SRH.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Participation, agency and disability in Brazil: transforming psychological practices into public policy from a human rights perspective

GESSER, Marivete
BLOCK, Pamela
NUERNBERG, Adriano Henrique
2019

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Participation is a little discussed or researched concept in the social sciences, despite its importance in understanding activism. This article presents some theoretical and methodological considerations for promoting social participation and agency for disabled people through the work of psychologists associated with Brazilian public policies. This article takes the form of a discursive study, based on the dialogue between: a) Brazilian legislation on disability; b) Bader Sawaia’s Ethical-Political Psychology; and c) Disability Studies. Based on the assumption that psychological practices should promote participation and agency for disabled people, we present the elements that hinder or control participation. We then present theoretical methodological contributions to build practices that promote participation and agency, highlighting: a) critiques of moral and biomedical models of disability; b) understandings of disability from intersectional perspectives that incorporate it as a category of analysis; c) including disabled people in the construction of research and professional practices disabled people and d) the rupture with ableism, which blocks the participation of disabled people. Participation has shown to be a multidimensional concept that covers a spectrum of aspects – from the practice of activism to the constitution of subjectivity in disabled people.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 2

Case studies on leaving no one behind. A companion volume to the Development Co-operation Report 2018

ORGANISATION FOR ECONOMIC COOPERATION AND DEVELOPMENT (OECD)
December 2018

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These case studies complement the 2018 Development Co-operation Report: Joining forces to leave no one behind. Case study contributors share knowledge and lessons on what it takes to answer the pledge of the 2030 Agenda for Sustainable Development to leave no one behind through national and sub-national policies, strategies and programmes as well as international development co-operation projects, programmes and partnerships.

 

Chapters include:

 

 

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. 

 

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