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SOUTH SUDAN. Protection Analysis Update. Protection risks facing persons with disabilities and older persons

GLOBAL PROTECTION CLUSTER, UNHCR
October 2023

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This South Sudan Protection Analysis Update places a thematic focus on protection risks facing persons with disabilities and older persons.

The most recent census reported that 5% of the population in South Sudan, or approximately 424,000 people, were living with a disability. However, the current number is likely to be much higher, possibly reaching 1.2 million people, or 16% of the population, according to the global estimate. Data in South Sudan also suggests a rapid increase in the number of older persons each year, mounting to 5.1% of total population with this percentage expected to continue to steadily increase.

People with disabilities and older people in South Sudan are often excluded and face multiple challenges in accessing essential services and protection. Decades of civil war have increased the number of older people and persons with disabilities who are being left behind as they are unable to flee due to chronic health conditions and mobility impairments. People who have managed to flee the violence are often faced with barriers accessing protection and health services. Therefore, older people with and without disabilities in South Sudan face higher risks and greater challenges in getting the necessary humanitarian assistance.

WHO disability-inclusive health services training package: a companion to the Disability-inclusive health services toolkit. A resource for health facilities in the Western Pacific Region

WORLD HEALTH ORGANISATION (WHO) WESTERN PACIFIC
June 2023

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The WHO Disability-Inclusive Health Services Training Package is a companion to the “WHO Disability-Inclusive Health Services Toolkit: A resource for health facilities in the Western Pacific Region” published by WHO in 2020. This package offers a range of additional training materials including presentations, workbooks and videos that will allow users to develop the foundational skills and understanding of the Toolkit for its implementation. Together the Toolkit and Training Package will help ensure equitable access to health services, best-quality outcomes and improved quality of life for all people with disabilities to achieve universal health coverage.

Barriers to inclusive employment for self-advocates and families

BIALIK, Kimber
MHIRI, Manel
June 2022

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This article is about the barriers to inclusive employment that people with intellectual disabilities and families face in Kenya, Uganda, Nigeria, and Bangladesh.

Through the Inclusion Works Project, we worked with our members in Kenya, Uganda, Nigeria, and Bangladesh to talk with self-advocates and family members about employment.

We had 3 consultation meetings with self-advocates and 3 consultation meetings with families – we talked to 54 self-advocates and 45 family members about access to inclusive employment in their countries.

Some of the barriers that they told us about were discrimination from employers, lack of access to education, unfair pay, issues with safety and security at work, and being pressured to choose self-employment.

This article explains some of the issues accessing inclusive employment that people with intellectual disabilities and their families told us they face in low- and middle-income countries.

The article also gives recommendations for how organisations doing work on inclusive employment can work towards addressing some of these barriers and being more inclusive.

 

 Journal of International Development, Volume 34, Issue 5

Disability inclusive employment in urban Malawi: A multi-perspective interview study

REMNANT, Jennifer
WANGGREN, Lena
HUQUE, Sarah
SANG, Katherine
KACHALI, Limbani
RICHARDS, James
June 2022

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The paper presents interview data from Malawian government representatives, trade unionists, employers and people with disabilities from the country's largest cities Lilongwe and Blantyre. Findings relate to the gap between the discourse of employers and government officials and that of workers with disabilities. Firstly, we find a policy-based assumption of a formalised workforce that is not representative of the predominantly informal disabled workforce. Secondly, the disruptive, intermittent and oftenreactive nature of non-governmental organisation (NGO ) interventions can limit long-term inclusivity agendas and undermine the work of disabled activists in Malawi. Lastly, we present findings on the stigmatised nature of disability in these urban centres. We find that stigma is economic: Urban workers with disabilities are discriminated against locally by employers, landlords and banks on assumptions they will not produce or earn enough to meet productivity demands, rent or repayment costs.

 

Journal of International Development, Volume 34, Issue 5

https://doi.org/10.1002/jid.3678

Global Report on Assistive Technology

WORLD HEALTH ORGANISATION (WHO)
UNITED NATIONS CHILDREN'S FUND (UNICEF)
May 2022

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The WHO-UNICEF Global Report on Assistive Technology (AT) reveals that more than 2.5 billion people need one or more assistive products, such as wheelchairs, hearing aids, or apps that support communication and cognition. Yet nearly one billion of them are denied access, particularly in low- and middle-income countries, where access can be as low as 3% of the need for these life-changing products.

The Global Report provides the best available evidence about the barriers currently preventing access, how access can be improved, and how enabling environments and AT can enable persons with disabilities to enjoy their human rights while generating a tremendous return on investment for governments. The report also makes 10 key recommendations for concrete actions that will improve access to AT, for everyone, that needs them. 

Access to assistive technology for children with disabilities is often the first step for childhood development, access to education, participation in sports and civic life, and getting ready for employment like their peers. Children with disabilities have additional challenges due to their growth, which requires frequent adjustments or replacements of their assistive products.

Towards a disability-inclusive humanitarian response in South Sudan?

FUNKE, Carolyn
DIJKZEUL, Dennis
February 2022

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The Inter-Agency Standing Committee (IASC) Guidelines on the Inclusion of Persons with Disabilities in Humanitarian Action (2019) set out four ‘must do’ actions to identify and respond to the needs and rights of persons with disabilities. This study investigates how humanitarian organizations implement the four ‘must do’ actions in South Sudan. It shows that mainstream and inclusion-focused organizations actively promote their implementation to make disability inclusion an integral part of humanitarian action, investing heavily in capacity-building and awareness-raising at all levels of the response. Nevertheless, serious gaps and challenges to disability inclusion remain. 

Intersectionality Resource Guide and Toolkit. An intersectional approach to leave no one behind

UN WOMEN
UN PRPD
2022

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The Resource Guide and Toolkit has been developed to help both organizations and individual practitioners and experts to address intersectionality in policies and in programmes. It may be used by individuals or teams to assess their own knowledge, attitudes, and practice, at a programme level as a supplement to existing design, adaptation, and assessment processes or at policy level to better understand and address the different and intersecting effects of policy on marginalised persons.

This Resource Guide and Toolkit emerged from an identified need to use an intersectional approach that included people with disabilities in all their diversity in the development, implementation and evaluation of policies, programmes, advocacy and inter-governmental processes. However, the authors and collaborators realised that an effective intersectionality resource needed to go beyond a focus on specific intersecting identities, such as disability and gender, as this would still exclude those who are most marginalised

Step Towards Disability Inclusive Sexual Reproductive Health: Learnings from WISH2ACTION Project

Faruk Ahmed Jalal
Esrat Jahan
Md. Tareq Mahmud
Md. Rakibul Islam
Md. Mazedul Haque
Samira Naher Tazreen
August 2021

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WISH2ACTION project is being implemented in Bangladesh since September 2018 and will end on 31 August 2021. During these years of implementation, HI worked to ensure the inclusion of persons with disabilities in the sector of sexual & reproductive health through community engagement as well as policy changes at the national level. Throughout the project period, many success stories & good practices were drawn as learning and could be used as a reference for future practices, and HI Bangladesh is delighted to introduce these documents of learning through this publication.

Persons with disabilities in the context of armed conflict - Submission to the UN Special Rapporteur on the rights of persons with disabilities

HUMAN RIGHTS WATCH
June 2021

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Human Rights Watch provided input to the UN Special Rapporteur on the Rights of Persons with Disabilities for his thematic report to the 76th session of the United Nations General Assembly regarding the rights of persons with disabilities in armed conflict.

This submission was based on Human Rights Watch’s research in Afghanistan, Cameroon, the Central African Republic, Israel/Palestine, Jordan, Lebanon, South Sudan, and Syria. 

 

Six issues were focussed on in particular:

  • At higher risk during fighting
  • Availability of assistive devices
  • Access to basic services
  • Education for children with disabilities
  • Abuse and stigma
  • Mental health impact

How do we support women and girls with disabilities to overcome stigma against them? - Evidence brief

MACTAGGART, Islay
FELIX, Lambert
May 2021

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Stigma refers to the labelling of an individual or group of people in a way that ultimately denies them full social acceptance and equality of opportunity, and is often the root cause of discrimination and exclusion experienced by people with disabilities. The negative implications of stigma are far-reaching and profound, including limiting opportunities for accessing health care, education or livelihoods; affecting quality of life  and wellbeing, and increasing the risk of violence and abuse. Stigma is intersectional, meaning that women and girls with disabilities often experience several layers of discrimination, on account of both their disability and their gender. Reducing stigma experienced by women and girls with disabilities is therefore critical to supporting their full inclusion in society on an equal basis as others.

 

Evidence was reviewed and recomendations are provided.

Disability-related stigma and discrimination in sub-Saharan Africa and south Asia: a systematic literature review

VIRUNDRAKUMAR, Bhavisha
STEPHEN, Kathy
JOLLEY, Emma
SCHMIDT, Elena
May 2021

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This systematic literature review was undertaken to understand the extent, quality and findings of published and unpublished literature on interventions designed to tackle disability-related stigma and discrimination in sub-Saharan Africa and south Asia.

The primary focus of this review was to identify studies that describe the effectiveness of interventions to tackle disability-related stigma and discrimination. The secondary set of objectives focused on understanding the individual, interpersonal, organisational, community and public policy factors that are associated with stigma and discrimination.

Leave no girl with disabilities behind: Ensuring efforts to advance gender equality in education are disability-inclusive.

DIAMOND, Gloria
CASTRES, Pauline
April 2021

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This advocacy brief from the UN Girls’ Education Initiative (UNGEI) and Leonard Cheshire draws attention to the main barriers to education for girls with disabilities, in the context of major opportunities for advocacy and tangible change in 2021.  The recommendations outlined are targeted at world leaders, governments, ministries, UN agencies and NGOs. They offer a framework for rights-based action and principles towards gender-responsive and inclusive education, to ensure that no girls with disabilities are left behind. 

Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

‘Satan is holding your tongue back’: Stuttering as moral failure

ISAACS, Dane H
2021

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Background: The last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.

 

Objectives: This article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.

 

Method: Drawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.

 

Results: This analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.

 

Conclusion: As long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

Family Planning for Women and Girls with Disabilities

Dr FRASER, Erika
CORBY, Nick
MEANEY-DAVIS, Jessie
2021

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This is an updated evidence review looking at the evidence on factors affecting access to and uptake of family planning for women and girls with disabilities in low- and middle-income countries and the evidence on good practice on increasing full free and informed contraceptive choice for women and girls with disabilities.

 

Query:

1) What is the evidence on factors affecting access to and uptake of family planning for women and girls with disabilities in low and middle income countries, highlighting examples from FP2020 commitment-making countries?

2) What is the evidence on good practice on increasing full free and informed contraceptive choice for women and girls with disabilities – from the same countries or elsewhere? 

Prevalence, types, and combinations of multiple problems among recipients of work disability benefits

BRONGERS, Kor A
HOEKSTRA, Tialda
ROELOFS, Pepijn D D M
BROUWER, Sandra
2021

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Purpose: For persons on disability benefits who are facing multiple problems, active labour market poli- cies seem less successful. Besides health problems, these people perceive personal, social, and environ- mental problems. Since very little is known about these “non-medical” problems our aim was to explore the prevalence of clients experiencing multiple problems, the types and number of perceived problems, combinations of perceived problems, and associated characteristics in a group of work disability benefit recipients.

 

Methods: We performed a cross-sectional study, using self-reported data on perceived problems and socio-demographics, and register data from the Dutch Social Security Institute on diagnosed diseases and employment status. A convenient group of labour experts recruited eligible clients on work disability benefit.

 

Results: Of the 207 persons on work disability benefit, 87% perceived having multiple problems. Most reported problems were related to physical (76%) or mental (76%) health. Health problems most fre- quently occurred together with a mismatch in education, financial problems, or care for family members. Clients with lower education experienced significantly more problems than clients with an intermediate or high educational level.

 

Conclusions: Clients with multiple problems face severe and intertwined problems in different domains of life, and need tailored multi-actor work disability management.

Persons with disabilities and their representative organisations in Iraq

March 2021

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Iraq has one of the largest populations of persons with disabilities in the world. Despite this, there has been little consultation among persons with disabilities and their representative groups by government and humanitarian and development agencies. Persons with disabilities and their representative organisations in Iraq: Barriers, challenges and priorities aims to improve the understanding of the barriers experienced by persons with disabilities, including the key challenges and priorities of their rep­resentative organizations, in order to inform humanitarian and development programming. The report is based on interviews conducted with 81 representatives of 53 Organiza­tions of persons with disabilities across 18 governorates in Iraq.

Persons with disabilities and their representative organisations in Iraq

INTERNATIONAL ORGANISATION FOR MIGRATION (IOM) IRAQ
March 2021

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Iraq has one of the largest populations of persons with disabilities in the world. Despite this, there has been little consultation among persons with disabilities and their representative groups by government and humanitarian and development agencies. Persons with disabilities and their representative organisations in Iraq: Barriers, challenges and priorities aims to improve the understanding of the barriers experienced by persons with disabilities, including the key challenges and priorities of their rep­resentative organizations, in order to inform humanitarian and development programming. The report is based on interviews conducted with 81 representatives of 53 Organiza­tions of persons with disabilities across 18 governorates in Iraq.

The effective engagement toolkit

LEONARD CHESHIRE
March 2021

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The engagement toolkit is a practical resource guide for anyone committed to ensuring the voice of disabled people is front and centre of their work.

Starting with influencing approaches on policy, campaigning and public affairs engagement, the toolkit provides:

• Step by step guidance on entry points for developing productive and mutually beneficial relationships with the disability community.
• Quick guides on key disability movement context, approaches and best practice
• A breakdown of key elements of the Influencing Cycle.
• Examples of where good practice has worked well.
• Links to in-depth information for further learning.

COVID 19 in Nepal: The Impact on Indigenous Peoples and Persons with Disabilities

GURUNG, Pratima
2021

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The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations. 

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