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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.

Inclusive design and accessibility of the built environment in Freetown - an Inclusive Infrastructure Case Study from Sierra Leone

PATRICK, Michaela
MULDOWNEY, A
TURAY, A
KOROMA, B
McKINNON, I
October 2023

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Showcasing findings and recommendations for infrastructure, the built environment and urban development in Freetown, Sierra Leone, the case study provides actions towards creating a more accessible and inclusive city. Building a picture of the current state of inclusive design and accessibility of the built environment, the report sets out the potential for inclusive design to address existing barriers to inclusion for persons with disabilities.  

 

Research conducted in Sierra Leone included interviews, co-design workshops and photo diaries, with 15 stakeholders and 20 persons with disabilities living and working in the city.

 

Inclusive Infrastructure is a sub-programme of UK aid funded AT2030, testing ‘what works’ to improve access to life-changing Assistive Technology (AT) for all. The research demonstrates how access to AT is dependent on an enabling and inclusively designed built environment. The Sierra Leone case study is the fifth of six that help build a global picture of the current state of inclusion and accessibility in our cities through engaging local stakeholders and communities. 

 

How disabled people are leading innovation and systems change in the UK

KANODIA, Kush
September 2023

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The most important part of innovation in systems change is the lived experience.

The successful campaign to eliminate car park charges for people with disabilities at NHS hospitals in the UK is outlined. (Charges from over 200 hospitals are now dismissed).

The ongoing campaign to exempt all people with disabilities who are "Blue badge" holders from charges associated with ULEZ (ultra low emission zones) or the equivalent in cities in the UK is also described. The importance of integrating climate action and disability rights is highlighted.  

Disability justice and stigma – Pathways to change

PUNEET, Singhal
September 2023

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Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.

 

A short talk highlighting disability intersectionality, from personal experience of multiple unseen disabilities, poverty, marginalisation and abuse.

The work of the Global Network of Young Persons with Disabilities is highlighted.

Can para-sport drive community-level change in Sub Saharan Africa

WONG, Jennifer
MAGALASI, Mufunanji
NKHOMA, Samuel Nakhozwe
MOGALO, Sheila
September 2023

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Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.

 

Short presentations and a discussion are reported concerning the transformational change associated with para-sport in Sub Saharan Africa, highlighting Sport for Development, Para Sport against Stigma and I'mPOSSIBLE. 

Commentary of the highlights of the Tokyo Paralympic games were translated into the Malawian local language and were shown in mobile cinemas. Theatre for development produced provocative performances with communities re sports and stigma. The importance of a Paralympic sportsman visiting schools as a role model is highlighted. The journey of Malawi from having no paralympic athletes in London to today is outlined, highlighting the transformational growth in the ecosystem of educators, supporters, trainers, coaches and national technical officials. The importance of para-sport in reducing stigma is emphasised.  

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.

“Give us the chance to be part of you, We want our voices to be heard”: Assistive Technology as a mediator of participation in (formal and informal) citizenship activities for persons with disabilities who are slum dwellers in Freetown, Sierra Leone

AUSTIN, Vicki
HOLLOWAY, Cathy
OSSUL VERMEHREN, Ignacia
DUMBAYA, ABS
BARBARESCHI, Giulia
WALKER, Julian
May 2021

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The importance of assistive technology (AT) is gaining recognition, with the World Health Organisation (WHO) set to publish a Global Report in 2022. Yet little is understood about access for the poorest, or the potential of AT to enable this group to participate in the activities of citizenship; both formal and informal. The aim of this qualitative study was to explore AT as mediator of participation in citizenship for persons with disabilities who live in two informal settlements in Freetown, Sierra Leone (SL). The paper presents evidence from 16 participant and 5 stakeholder interviews; 5 focus groups and 4 events; combining this with the findings of a house-to-house AT survey; and two national studies—a country capacity assessment and an informal markets deep-dive. Despite citizenship activities being valued, a lack of AT was consistently reported and hindered participation. Stigma was also found to be a major barrier. AT access for the poorest must be addressed if citizenship participation for persons with disabilities is a genuine global intention and disability justice is to become a reality.

 

International Journal of Environmental Research and Public Health, Int. J. Environ. Res. Public Health 2021, 18(11)

https://doi.org/10.3390/ijerph18115547

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? 

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