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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.

The impact of corruption on the rights of persons with disabilities

ATLAS ALLIANCE
September 2023

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Corruption and discrimination go hand in hand. In 2021, Transparency International and the Equal Rights Trust published a report highlighting how corruption and discrimination reinforce each other, leaving marginalized groups with little room to access public services, exercise their human rights, and live their lives with dignity. In this seminar organized by Norad, CMI/U4 and the Atlas Alliance collectively, researchers and DPO representatives discuss research findings and the situation as lived experience for persons with disabilities.

Children with disabilities in the Middle East and North Africa: A statistical overview of their well-being

UNITED NATIONS CHILDREN'S FUND (UNICEF)
October 2022

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An estimated 21 million children with disabilities live in the Middle East and North Africa. Each of them – like every child in the world – has the right to be nurtured and supported through responsive care and education, to receive adequate nutrition and social protection, and to enjoy play and leisure time. Too often, however, such rights are denied. The reasons vary. They include stigma, lack of accessible services, institutionalization and physical barriers, but the consequences are sadly consistent. When marginalized from society, the chances for these children to survive and thrive are diminished, along with their prospects for a bright future.

Monitoring the inclusion of children with disabilities in development efforts has long been held back by the lack of reliable and comprehensive data. Recent years, however, have seen renewed efforts to fill these data gaps. The development of new data collection tools has resulted in a substantial increase in the availability and quality of data on children with disabilities, fostering new analyses and contributing to increased knowledge generation.

This report is a testament to these efforts. It includes internationally comparable data from four countries in the Middle East and North Africa and covers 18 indicators of child well-being – from nutrition, health and education to protection from violence, exploitation and discrimination. It also presents global and regional estimates of children with disabilities drawn from more than 1,000 data sources, including 95 from countries in the Middle East and North Africa.

The report’s objective is to promote the use of these data to make children with disabilities in the region more visible, bringing about a fuller understanding of their life experiences. It offers evidence crucial to decision-making to fulfill obligations, both moral and legal, to give every child an equal chance in life.

Sexual and Reproductive Health and Rights for All: Disability Inclusion from Theory to Practice Women’s Integrated Sexual Health 2 Action Project (WISH2ACTION)

BERGER, Gisela
ARESU, Alessandra
NEWNHAM, Jane
March 2022

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The overall objective of this Guideline is to support project and programme developers, Sexual and Reproductive Health (SRH) public and private service providers, and advocates to design, implement, monitor, and evaluate inclusive SRH programmes. Realising SRHR for all requires a comprehensive, multi-sectoral, and coordinated approach, involving a range of actors and actions. The Guideline is designed to be a resource on the human rights standards and key principles required to achieve disability inclusion, with more specific guidance available for actors working at different levels of SRH service programming and service delivery. This Guideline is intended primarily to support SRHR actors and practitioners who are active at the local level. The chapters provide relevant background information and refer to selected national and international data. It contains practical recommendations to support implementation and advocacy activities, accompanied by a list of the most relevant resources available on the subject

Global Disability Summit 2022 - Oslo, Norway

GLOBAL DISABILITY SUMMIT
February 2022

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The International Disability Alliance (IDA), the Government of Norway, and the Government of Ghana hosted the second Global Disability Summit on 16 and 17 February 2022 (GDS22). Due to the COVID-19 pandemic, and to ensure inclusive participation at the Summit, the event was held on a digital platform.

The first Global Disability Summit (GDS18), held in 2018 in London, generated an unprecedented level of focus on and commitment to disability-inclusive development. 171 national governments, multilateral agencies, donors, foundations, private sector, and civil society organisations made 968 individual commitments. More than 300 governments and organisations signed the GDS18 Charter for Change, encouraging the focused implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD).

The Global Disability Summit 2022 (GDS22) in was built on the results achieved at the first Summit, to further accelerate much-needed progress towards the fulfillment of the rights of persons with disabilities worldwide.

The Summit led to concrete commitments that brought genuine change for persons with disabilities. GDS22 gathered a total of 1413 commitments on disability inclusion.

People with disabilities want equality through access and participation. To obtain lasting change at the country level, we seek collaboration with States, multilateral organisations, and civil society. We seek action and we seek the voices of persons with disabilities themselves.

Global Disability Youth Summit and a Civil Society Forum. was also held under the auspices of the GDS22.

 

The Chair's summary, recordings of GDS22, commitments made and the program are available.

Global Disability Youth Summit 2022

GLOBAL DISABILITY SUMMIT
February 2022

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IDA, UNICEF, and the Atlas Alliance, represented by Youth Mental Health Norway, co-hosted a Youth Summit on 14 February 2022 to ensure the inclusion of youth in the Global Disability Summit. 

All planning and decision making around the Summit were led by youth with disabilities, including through the design of a novel format to ensure the participation of youth from around the globe, from local to global.

 

The Summit showcased the innovations of organizations led by youth with disabilities. Youth with disabilities at the local, regional and global levels have created groups and activities, both online and offline, fostering a sense of community, even during the COVID-19 period. Through the Summit, the youth focused on topics that they have identified to be particularly important in this regard, such as participation of youth in OPDs and youth mainstream organizations, inclusive education, deinstitutionalization and community inclusion, access to employment, climate change, new technologies, humanitarian action, access to inclusive healthcare including sexual reproductive health and mental health, among others.

 

A working group consisting of co-hosts and selected partners was responsible for developing a Youth Charter for Change - summing up and challenging the commitments

 

Accessible Sanitation in the Workplace – Important Considerations for Disability-Inclusive Employment in Nigeria and Bangladesh

Stephen Thompson
Rasak Adekoya
Utpal Mallick
Omojo Adaji
Abdur Rakib
Mark Carew
January 2022

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This paper explores the relationship between accessible sanitation and disability-inclusive employment in Bangladesh and Nigeria. Both countries have sanitation and hygiene challenges as well as disability-inclusive employment challenges, but the existing evidence on the intersection of these issues that is focused on Nigeria and Bangladesh is extremely limited. Building on the literature where this complex issue is addressed, this paper presents the findings of a qualitative pilot study undertaken in Nigeria and Bangladesh. It focuses on the need for toilets at work that are easy for people with disabilities to use in poor countries. These are sometimes called accessible toilets. Accessible sanitation is not regarded as a challenge that must be addressed by people with disabilities themselves, but as a challenge that must be addressed by many people working together – including governments, employers, and the community.

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

Lives turned upside down in COVID-19 times: exploring disabled people's experiences in 5 low-and-middle income countries using narrative interviews

WICKENDEN, Mary
SHAW, Jackie
THOMPSON, Stephen
ROHWERDER, Brigitte
2021

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This article explores COVID-19 related experiences of disabled people in Bangladesh, Kenya, Nigeria, Nepal and Uganda. Narrative interviews generated storied responses, focussing on respondents' priorities, which enabled us to hear what was most significant for them and their families. 143 interviews were conducted online or by phone by 7 local researchers (3 disabled), with appropriate inclusive support. Nearly everyone was interviewed twice to capture the progression of impacts over time. The data was analysed thematically through a virtual participatory approach. An overarching 'subjective' theme of feelings experienced by the participants was labelled 'destabilisation, disorientation and uncertainty'. We also identified 'concrete' or material impacts. People experienced various dilemmas such as choosing between securing food and keeping safe, and tensions between receiving support and feeling increased vulnerability or dependence, with interplay between the emotions of fear, loss and hope. We found both the concept of liminality and grief models productive in understanding the progression of participants' experiences. Disabled people reported the same feelings, difficulties and impacts as others, reported in other literature, but often their pre-existing disadvantages have been exacerbated by the pandemic, including poverty, gender and impairment related stresses and discrimination, inaccessible services or relief, and exclusion from government initiatives.

Reclaiming SRHR of women and girls with disabilities

DAS, Shreshtha
August 2021

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The manual Reclaiming SRHR of Women and Girls with Disabilities was developed as part of ARROW’s initiative, ‘Defending SRHR of Women and Girls with Disabilities’ with inputs and insights incorporated from regional experts from multiple disciplines whose contributions enriched the content of the manual. The manual aims to equip women and girls with disabilities with necessary SRHR information and knowledge to make informed choices free from coercion, violence, discrimination, and abuse. The Manual, therefore, contains detailed Modules on gender, sexuality, disability, rights, and their interlinkages in the context of addressing sexual and gender-based violence against women and girls with disabilities. Through this, it seeks to provide accessible information and knowledge on SRHR to women and girls with disabilities in various contexts, including in the face of the ongoing Covid-19 pandemic.

 

A Training of Trainers (ToT) manual on disability rights, gender and SRHR.
 

“This Time of Corona Has Been Hard”: People with Disabilities’ Experiences of the COVID-19 Pandemic in Kenya

ROHWERDER, Brigitte
NJUNGI, Josephine
WICKENDEN, Mary
THOMPSON, Stephen
SHAW, Jackie
June 2021

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The COVID-19 pandemic is deepening pre-existing inequalities. Emerging research suggests that people with disabilities across the world have experienced various rights violations and been disproportionality affected by the health, economic and social impacts of the COVID-19 pandemic and the responses to it. The aim of this research was to explore how people with disabilities, who often are excluded from research, have experienced the evolving COVID-19 pandemic in Kenya. To better understand how it has affected jobseekers with disabilities, in-depth qualitative research was conducted in Kenya as part of the Inclusion Works programme.

“The Situation has Exposed Persons with Disabilities to Double Edged Pain”: People with Disabilities’ Experiences of the COVID-19 Pandemic in Uganda

WICKENDEN, Mary
ROHWERDER, Brigitte
SHAW, Jackie
THOMPSON, Stephen
WAKOKO, Eric
June 2021

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This qualitative study was undertaken as part of the work of the Foreign, Commonwealth and Development Office (FCDO) funded Inclusion Works programme which aims to improve inclusive employment for people with disabilities in four countries: Uganda, Kenya, Nigeria, Bangladesh. When the COVID-19 pandemic emerged early in 2020 the work of this consortium programme was adapted to focus on pandemic relief and research activities, while some other planned work was not possible.

“This pandemic brought a lot of sadness”: people with disabilities’ experiences of the COVID-19 pandemic in Nigeria

THOMPSON, Stephen
CHUBA-UZO, Shadrach
ROHWERDER, Brigitte
SHAW, Jackie
WICKENDEN, Mary
June 2021

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This qualitative study was undertaken as part of the work of the FCDO funded Inclusion Works programme which aims to improve inclusive employment for people with disabilities in four countries: Uganda, Kenya, Nigeria, Bangladesh. When the COVID-19 pandemic emerged early in 2020 the work of this consortium programme was adapted to focus on pandemic relief and research activities, while other planned worked was not possible.
The Institute of Development Studies (IDS) led a piece of qualitative research to explore the experiences and perceptions of the pandemic and related lockdowns in each country, using a narrative interview approach, which asks people to tell their stories, following up with some further questions once they have identified their priorities to talk about. 10 people with disabilities who were involved in Inclusion Works in each country were purposively selected to take part, each being invited to have two interviews with an interval of one or two months in between, in order to capture changes in their situation over time. The 10 interviewees had a range of impairments, were gender balanced and were various ages, as well as having differing living and working situations.

“Everything is Totally Uncertain Right Now”: People with Disabilities’ Experiences of the COVID-19 Pandemic in Bangladesh

SHAW, Jackie
AKTER, Fatema
ROHWERDER, Brigitte
WICKENDEN, Mary
THOMPSON, Stephen
June 2021

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The COVID-19 pandemic is deepening pre-existing inequalities. Emerging research suggests that people with disabilities across the world have experienced various rights violations and been disproportionality affected by the health, economic and social impacts of the COVID-19 pandemic and the responses to it. The aim of this research was to explore how people with disabilities, who often are excluded from research, have experienced the evolving COVID-19 pandemic. In order to better understand how it has affected jobseekers with disabilities, in-depth qualitative research was conducted as part of the Inclusion Works programme in Bangladesh.

Disability and Indigeneity: intersectionality of identity from the experience of Indigenous people at a global level

GILROY, John
UTTJEK, Margaretha
LOVERN, Lavonna
WARD, John
2021

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The authors of this paper have protested, fought, written extensively and represent the broader theoretical foundations of Indigenous and disability research by focusing on their standpoint perspectives informed by their ancestral spirits and knowledge. Based on our knowledge, cultures, and advocacy skills, this paper collectively explores and compares the intersections of Indigeneity and disability as an embodied identity in four countries: USA, Canada, Sweden, and Australia. This is accomplished by beginning with a brief synopsis of colonization to provide context and then examine the consequences of Western assimilation practices, including academic support of the Western status quo. The paper will then turn to the impact of both colonization and academic constructs on Indigenous epistemologies and ideas of self in disability dialogues. Finally, the paper will focus on Indigenous concepts of difference to not only advance Western disability discussions, but also as a way for Western dialogue to overcome its predilection to hierarchical binaries.

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

EDF-IDA workshop on Using the UN Optional Protocols to defend the rights of women and girls with disabilities

SUAREZ, Natalia
PELAEZ NARVAEZ, Ana
May 2021

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Several international human rights treaties exist to protect their rights, such as the UN Convention on the Rights of Persons with Disabilities (CRPD) and the UN Convention on Elimination of All Forms of Discrimination Against Women (CEDAW). These Conventions are complemented by agreements called Optional Protocols. They establish individual complaints mechanism for individuals or groups of individuals who have seen their rights violated in their country.

This online workshop organised on the 10th of May, 2021 jointly by the International Disability Alliance and the European Disability Forum informed participants on the role and functioning of the Optional Protocols, as tools to defend the rights of women and girls with disabilities. Speakers included representatives and legal experts from the Officer of the High Commissioner for Human Rights, the International Disability Alliance, the International Women’s Right Actions Watch Asia Pacific and Validity Foundation. The workshop was introduced and moderated by Ana Pelaez Narvaez, Vice President of the European Disability Forum and member of the CEDAW Committee.

Joint submission on promoting and protecting the human rights of women and girls in conflict and post-conflict situations

HUMAN RIGHTS WATCH
HUMANITY & INCLUSION
INTERNATIONAL DISABILITY ALLIANCE
WOMEN ENABLED INTERNATIONAL
WOMEN'S REFUGEE COMMISSION
April 2021

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Joint submission on promoting and protecting the human rights of women and girls in conflict and post-conflict situations on the occasion of the twentieth anniversary of Security Council resolution 1325 by Humanity & Inclusion, Human Rights Watch, International Disability Alliance, Women Enabled International and the Women’s Refugee Commission.

This submission sets out information and recommendations on promoting and protecting the human rights of women and girls with disabilities in conflict and post-conflict situations. Women and girls with disabilities are disproportionately impacted by armed conflicts, yet remain underreported and excluded from peace and security processes. Women and girls with disabilities account for nearly one-fifth of all women and girls worldwide and face multiple and intersecting forms of discrimination based on their gender, as well as their disability. Sustainable peace, recovery and inclusive humanitarian action requires the full, equal and meaningful participation of diverse women, including women and girls with disabilities. The Office of the High Commissioner on Human Rights, in its report, should request member states, the Human Rights Council and its mechanisms, as well as other stakeholders to ensure that monitoring and reporting on the experiences of women and girls in conflicts includes the specific experiences of women and girls with disabilities, and ensure their meaningful participation in conflict prevention, response, peacekeeping and peacebuilding.

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.

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