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Supporting young children with disabilities in humanitarian settings

BEILER, ROSALENGA BERMAN
ZUIDEMA, SUZANNE
BECKERLEGGE, FIONA
RODRIGUEZ GARCIA, DEBORAH MARIE
June 2022

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The rapid growth that occurs in the first years of life provides an opportunity to influence and improve developmental outcomes that may impact the entire course of an individual's life. Addressing the developmental needs of children with disabilities during this critical period is essential if they are to survive, flourish, learn, and be empowered (WHO, n.d.). 

Recognizing the importance of addressing all children's unique needs and acknowledging the influence of social stigma and misconceptions about disability that may lead to underdeveloped potential and social exclusion, we seek to advocate for and support the inclusion of young children with disabilities in Early Childhood Development in Emergencies programming. 

The webinar was moderated by Rosangela Berman Bieler, UNICEF’s Global Advisor on Disability, and included presentations on foundational concepts for disabilities-inclusive programming, and alternatives to address young children with disabilities needs in a resourceful, creative manner. 

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.

UNHCR Facilitator’s Guide - Strengthening Protection of Persons

UNITED NATIONS HIGH COMMISSIONER FOR HUMAN RIGHTS (UNHCR)
July 2021

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This guide is designed to support UNHCR staff, partners and other stakeholders at field level to:

  • Recognize the protection concerns and capacities of refugees with disabilities and other persons with disabilities protected and assisted by UNHCR;
  • Apply the principles reflected in the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and UNHCR Guidance on Working with Persons with Disabilities to a range of programs and sectors;
  • Design immediate and long-term strategies to mitigate protection risks and promote the inclusion of persons with disabilities in UNHCR programming.

 

The four modules include:

  • Introductory module - Organizing an accessible and inclusive workshop (Module 1);
  • Promoting a rights-based approach to disability (Module 2);
  • Raising awareness about the impact of forced displacement on persons with disabilities (Module 3);
  • Learning key strategies to foster inclusion of persons with disabilities in forced displacement (Module 4). 

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.

Design journey of an affordable manual standing wheelchair

SHAIKH-MOHAMMED, Javeed
DASH, Swostik Sourav
SARDA, Vivek
SUJATHA, S
2021

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Purpose: Only 1 in 10 people with disabilities can access assistive devices, underlining the critical need for low-cost assistive products. This paper describes the design evolution of a manual user-operated standing wheelchair (SWC), translating from prototype to product.


Methods: The SWC design has been refined over 5 years through multiple iterations based on comments from user trials. The SWC product, Arise, provides standing functionality, facile outdoor mobility, afford- ability, customisability, and is aesthetically pleasing. A one-time fitting and training ensure optimal effort for operation, correct posture, and comfortable user experience. The SWC accommodates users of differ- ent sizes and body weights (up to 110kg) and minimises user effort with the use of a gas spring. Incorporating discrete adjustments enables customisation while retaining the advantages of mass manu- facturing, which is necessary for ensuring affordability.

 

Results: The SWC has been field-tested and well received by over 100 wheelchair users, and Arise was launched recently by the industry partner.


Conclusions: It should be noted that RESNA cautions on the use of any standing device without medical consultation. Nevertheless, with appropriate dissemination and awareness, it is anticipated that the afford- able SWC product, Arise, will immensely benefit the eligible users and make a difference in their quality of life.

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.

Reducing albinism related stigma in Tanzania: an exploration of the impact of radio drama and radio interview

DE GROOT, T M M
VELDMAN, M
JACQUET, W
PETERS, R M H
VANWING, T
MEURS, P
2021

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Reducing stigma is key to improving the wellbeing of people with albinism in Tanzania. This study aimed to obtain more insight into the effects of two radio interventions with regard to albinism-related stigma: a radio drama and a radio interview. Assessment of the radio interventions was based on two attitude measurement instruments (The Albinism Explanatory Model Interview Catalogue Community Stigma Scale and the Albinism Social Distance Scale), an entertainment scale, and two informal (group) interviews. In total, 111 community members participated in the assessment prior to the radio drama, and 65 after. In the case of the radio interview, 123 community members participated in the assessment prior to the radio show, and 77 after. Following the radio drama, a significant reduction was found in terms of community stigma, and a reduction in social distance was found after both interventions. The entertainment score for both interventions was high, but significantly higher for the radio drama. The respondents indicated that they had gained more understanding of albinism as a result of the interventions, and were positive about this type of education. The current study shows that a radio show in which the listener interacts with someone with albinism can contribute to a reduction in stigma, and demonstrates that different types of radio intervention can have different outcomes.

Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

International Summit on Legal Professionals with Disabilities

INDIAN LAW SOCIETY
OXFORD HUMAN RIGHTS HUB
HARVARD LAW SCHOOL PROJECT ON DISABILITY
CENTRE FOR DISABILITY STUDIES, UNIVERSITY OF LEEDS
December 2020

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3-day Summit with three panel discussions by disabled legal professionals to foster a well-considered dialogue on how we can break down the structural and attitudinal barriers that prevent disabled legal professionals from leading lives of equal productivity and dignity as their able-bodied counterparts.

The themes for the days were: Day 1 - Academicians; Day 2 - Lawyers; Day 3 - Judges 

Mixed-Methods Programme Evaluation of Disability Equality Training (DET) in Mongolia

Higashida, Masateru
Gereltuya, Ganbayar
Altanzul, Gantaikhuu
2020

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Purpose: An evaluation of a disability equality training (DET) programme, based on the social model of disability, was conducted to explore the changes in the participants’ attitudes and behaviours in Ulaanbaatar, Mongolia.

 

Methods: This study is composed of two parts. First, the participants’ attitude changes during DET sessions were examined through a descriptive quantitative and qualitative analysis of questionnaires and related documents. Second, thebehavioural changes at the organisational and individual levels, the impact on society, and related factors were explored by quantitative and qualitative analysis of good practice cases: 39 participants were selected through purposive sampling and semi-structured interviews were conducted.

 

Results: It was found that most participants adopted the social model perspective within these sessions. A qualitative content analysis of the good practice cases also found that the majority of participants attempted to change their social environments after the sessions. Thematic analysis identified promotional factors, such as within-organisation dynamics and compatibility and barriers at the individual and organisational levels, which were associated with participants’ behaviours after DET sessions.

 

Conclusion: The implications of these findings are discussed in connection with the strategic implementation of DET to promote disability-inclusive development. Future studies should examine the effectiveness of a strategy by considering the factors identified in this study and by using a reliable sample in various settings where DET sessions are conducted.

Investing in human potential

BROWN, Simon
SCOTT-PARKER, Susan
2020

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This document gives methods to amplify the impact of your corporate social responsibility strategy and how it is possible to influence labour markets to be more inclusive for persons with disabilities.

The social and human rights models of disability: towards a complementarity thesis

LAWSON, Anna
BECKETT, Angharad E
2020

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This article aims to reorient thinking about the relationship between the long-standing social model of disability and the rapidly emerging human rights model. In particular, it contests the influential view that the latter develops and improves upon the former (the improvement thesis) and argues instead that the two models are complementary (the complementarity thesis). The article begins with a discursive analysis of relevant documents to investigate how each of the two models has been used in the crafting and monitoring of the UN Convention on the Rights of Persons with Disabilities. This highlights the increasing importance of the human rights model in this policy context. It also provides examples of the operation of the two models which inform the remainder of the discussion. We then critique the comparisons between the models which underpin the improvement thesis; and, drawing on Foucault’s technologies of power and Beckett and Campbell’s ‘oppositional device’ methodology, deepen and develop this comparative analysis. The result, we argue, is that the two models have different subjects and different functions. In the human rights context, their roles are complementary and supportive.

COVID-19 Preparedness and response protection of groups at disproportionate risk – Yemen

PROTECTION CLUSTER YEMEN
May 2020

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Steps are described that support the implementation of mitigation measures to help prevent, reduce and respond to risks of exclusion and/or disproportionate impact on vulnerable groups. The mitigation measures aim to promote the protection of all groups during the pandemic (throughout the various phases of prevention and response) and contribute to alleviating the impact of the changing dynamics on the protection environment of the most vulnerable.

 

Groups highlighted to be at disproportionate protection risk include internally displaced people (IDPs) in IDP hosting sites, Muhamasheen (marginalized communities), refugees, migrants and asylum seekers, people with disabilities, women and girls

Pats Journal

LARUBI, Pat Robert
2020

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Pats Journal – Albinism News Network (ANN) is an online story telling platform where people come to discover, relate and share positive and inspiring stories of persons with albinism and those around us helping make a difference in the world. The platform features in-depth news analysis, information, interviews, opinion and coverage of events promoting public awareness and social inclusion of persons with albinism

 

Overall, the portal was aimed at creating public awareness across the East African Region and the world at large about challenges face by PWA in Africa in a bid to reduce stigma, social oppression, break myth and showcase the potential of PWA through a well structure and unlimited media space.

Aid Connect Inclusion Works (NIGERIA) Qualitative Formative Research

BBC Media Action
April 2020

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BBC Media Action is implementing a Department for International Development (DfID) funded project aimed at increasing action and investment from private, public and civil society actors to enable economic inclusion for women and men with disabilities through employment, with focus on FCT, Lagos and Kano states. The formative research provides insights to help (re)shape the design and implementation of media capacity strengthening activities on the project.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

COVID-19: How to include marginalized and vulnerable people in risk communication and community engagement

UN WOMEN
TRANSLATORS WITHOUT BORDERS
March 2020

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Recommendations for inclusion of marginalised and vulnerable groups in risk communications and community engangement are made. Groups considered are: children; people with disabilities; women and girls; pregnant women; persons living with HIV; gender based violence survivors; refugees and migrants; elderly; people in existing humanitarian emergencies; people with pre-existing medical conditions; sexual and gender minorities; ethnic minorities.

Pages

E-bulletin