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No tech about us, without us

SALELKAR, Amba (IDA)
BANDUDKA, Maryam (GDI hub)
OJOK, Banya (IDA)
September 2023

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Two short talks concerning the centering of assistive technology projects on persons with disabilities and organisation of persons with disabilities (OPD/DPO). The talks are presented by a representative from IDA in India and one from IDA in Uganda. The talks are introduced by Maryam Bandudka of GDI hub. Story telling, the CPRD, communities of practice and advocacy are mentionned

 

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

Using a community-based participatory research (CBPR) approach to explore economic empowerment for youth with disabilities in rural Uganda

GREENWOOD, Margo
BECHANGE, Stevens
EMONG, Paul
KYOSABA, Winnie
NSSAJA, David
THE PEERS RESEARCHER TEAM
August 2023

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This paper presents findings from a community-based participatory study exploring the lived experiences and key livelihood changes post-intervention of a vocational skills training for young people with disabilities in rural Uganda. Twenty-four youth with disabilities (13 female, 11 male) who had previously taken the vocational training were trained to become peer researchers and conducted 72 in-depth interviews with a more recent cohort of youth with disabilities. 

 

Social Sciences & Humanities Open, Volume 8, Issue 1, 2023, 100647

https://doi.org/10.1016/j.ssaho.2023.100647

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. 

The impact of COVID-19 measures on children with disabilities and their families in Uganda

MBAZZI, Femke Bannink
NALUGYA, Ruth
KAWESA, Elizabeth
NIMUSIIMA, Claire
KING, Rachel
VAN HOVE, Geert
SEELEY, Janet
2021

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To understand the impact of the COVID-19 public health response on families of children with disabilities in Central Uganda we conducted phone interviews with parents and children during the first 5 months of the outbreak (March - July 2020). Most parents and children were well informed about COVID-19 and were keen to adhere to government prevention measures. The majority said lock-down measures had a negative effect on their mental and physical health, social life, finances, education and food security. Access to medical services and medication for chronic illness had been limited or absent due to restrictions in travel, some facilities restricting access, and limited financial resources. The majority of parents reported loss of work which resulted in difficulties in finding enough food and paying rent. Parents worried about children missing education and friends. We suggest greater attention to children with disabilities and their families when implementing mitigating and long-term responses.

Unheard children. Championing deaf children’s rights to family, community, education and independence in developing countries

DEAF CHILDREN WORLDWIDE
November 2020

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This report highlights the specific barriers facing deaf children and young people and demonstrates a number of smallscale approaches and initiatives that have succeeded in breaking down some of these barriers.

Topics are:

  • Language and communication. Early diagnosis and support (example from Bangladesh). Effective and affordable hearing technology. Communication choices. What is sign language? Tanzanian Sign Language – the need for more interpreters
  • Families. Early diagnosis and support. Upskilling parents and primary caregivers. Power to the parents (example from Uganda). Catalyst for change (example from India). 
  • Communities. Deaf role models (example from Bangladesh). Challenging the public and professionals. Educating the police force (example from India). Sharing knowledge across organisations
  • Education. Intensive communication. Extra help in the classroom (example from Kenya). Making secondary education accessible. Developing sign language skills. Inclusive further and higher education
  • Independence. Listening to deaf young people. Involving deaf young people in research. Support to make informed choices. Challenging perceptions in the workplace (example from Kenya)

 

 

CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

LEONARD CHESHIRE
October 2020

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These recommendations provide guidance on how to ensure more inclusive and effective implementation of Citizen Generated Data (CGD) initiatives and partnerships that engage communities effectively, and especially young people, persons with disabilities and civil rights defenders.

 

The recommendations focus on:

Inclusive Partnerships and Effective Collaboration including a "Spotlight from Uganda: Using WG questions in the national census"

Data Access and Disaggregation including a "Spotlight from Madagascar: Youth generated data and accountability"

Resourcing and Funding including a "Spotlight from International Non Government Organisations: Using Washington Group Questions (WGQ) in humanitarian and development settings"

Disability Inclusion Helpdesk Report : What works in mental health services and community interventions to support people with mental health conditions and psychosocial disabilities: a rapid evidence review

MILLS, China
AHLENBÄCK, Veronica
HAEGEMAN, Emma
September 2019

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Summaries on the findings from the following queries:

What works to develop quality services and community interventions to support people with mental health conditions and psychosocial disabilities and wellbeing for all, across the lifecycle?

What are examples of effective interventions in this area?

Success in Africa: People with disabilities share their stories

SHAKESPEARE, Tom
MUGEERE, Anthony
NYARIKI, Emily
SIMBAYA, Joseph
2019

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Background: Whereas most narratives of disability in sub-Saharan Africa stress barriers and exclusion, Africans with disabilities appear to show resilience and some appear to achieve success. In order to promote inclusion in development efforts, there is a need to challenge narratives of failure.

 

Objectives: To gather life histories of people with disabilities in three sub-Saharan African countries (Kenya, Uganda and Sierra Leone) who have achieved economic success in their lives and to analyse factors that explain how this success has been achieved.

 

Methods: Qualitative research study of economic success involving life history interviews with 105 participants with disabilities from both urban and rural settings recruited through disabled people’s organisations and non-governmental organisation partners, framework analysis of transcripts to chart success and success factors.

 

Results: Participants had faced barriers in education, employment and family life. They had largely surmounted these barriers to achieve success on an equal basis with others. They were working in private and public sectors and were self-employed farmers, shopkeepers and craftspeople.

 

Conclusion: The findings of this study suggest that, given the right support, disabled people can achieve economic success, with the implication being that investment in education or training of disabled people can be productive and should be part of overall development efforts for economic reasons, not solely to achieve social justice goals.

 

 

African Journal of Disability, Vol 8, 2019

Impact of training programmes for people with disabilities (Disability Inclusion Helpdesk Report 5)

FRASER, Erika
ABU AL GHAIB, Ola
February 2019

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 Supporting people with disabilities into employment is important not only in providing income, but research in Nepal has shown positive life changes including increased confidence, social status, and acquiring new skills. This document provides a rapid review of the evidence of the types of interventions used to reduce barriers and support people with disabilities into employment, as well as the impact of training programmes on employment and/or livelihood outcomes (Section 4). Case studies are included in Section 5 and Annex 1 to give further details on key learnings.

 

Case studies outlined are 

  • Vocational training programme by Madhab Memorial Vocational Training Institute (MMVTI), Bangladesh 
  • Gaibandha Food Security Project (Bangladesh)
  • Self-help groups (Nepal) 
  • EmployAble programme (Kenya, Rwanda and Ethiopia) 
  • Economic Empowerment of Youth with Disabilities (Rural Uganda)
  • Access to Livelihoods Programme (India, Sri Lanka, Bangladesh, Pakistan, the Philippines, South Africa)

Disability, health and human development

MITRA, Sophie
October 2017

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This book presents new research on disability, health, and wellbeing in four countries (Ethiopia, Malawi, Tanzania and Uganda) . The primary focus is empirical. It also makes a conceptual contribution as it presents a new model of disability based on the human development and capability approach. It addresses four questions: 

  • How should disability be defined to analyse and inform policies related to wellbeing?
  • What is the prevalence of functional difficulties?
  • What inequalities are associated with functional difficulties?
  • What are the economic consequences of functional difficulties? 

Detailed data analysis using large-scale household survey datasets is combined with an interactional model of disability based on Amartya Sen’s capability approach.

 

DOI 10.1057/978-1-137-53638-9

 

First of book series: the Palgrave Studies in Disability and International Development

Community Action Research in Disability (CARD): An inclusive research programme in Uganda

HARTLEY, Sally D
YOUSAFZAI, AK
KAAHWA, MG
FINKENFLÜGEL, H
WADE, A
BAZIRAKE, G
DRACHLER, ML
SEELEY, J
ALAVI, Y
MATAZE, W
MUCURNGUZI, E
2017

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The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.

 

The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.

 

CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.

Social inclusion, care and belonging of children with spina bifida: perspectives from Uganda

BANNINK, Femke
February 2017

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This study presents a situation analysis on daily functioning, caregiving, and inclusion of children with spina bifida in Uganda. 139 children with spina bifida and their families from 4 regions in Uganda participated in this study. Findings show how a complex play of cultural values, globalisation and access to biomedical care determines knowledge, and negative attitudes about, and perception of children with spina bifida


Afrika Focus, vol 30, no. 1, 2017,  pp. 130-136

DOI https://doi.org/10.21825/af.v30i1.4984

 

Disability inclusion in higher education in Uganda: Status and strategies

EMONG, Paul
ERON, Lawrence
2016

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Background: Uganda has embraced inclusive education and evidently committed itself to bringing about disability inclusion at every level of education. Both legal and non-legal frameworks have been adopted and arguably are in line with the intent of the Convention on the Rights of Persons with Disabilities (CRPD) on education. The CRPD, in Article 24, requires states to attain a right to education for persons with disabilities without discrimination and on the basis of equal opportunities at all levels of education.


Objectives: Despite Uganda’s robust disability legal and policy framework on education, there is evidence of exclusion and discrimination of students with disabilities in the higher education institutions. The main objective of this article is to explore the status of disability inclusion in higher education and strategies for its realisation, using evidence from Emong’s study, workshop proceedings where the authors facilitated and additional individual interviews with four students with disabilities by the authors.


Results: The results show that there are discrimination and exclusion tendencies in matters related to admissions, access to lectures, assessment and examinations, access to library services, halls of residence and other disability support services.

 

Conclusion: The article recommends that institutional policies and guidelines on support services for students with disabilities and special needs in higher education be developed, data on students with disabilities collected to help planning, collaboration between Disabled Peoples Organisations (DPO’s) strengthened to ensure disability inclusion and the establishment of disability support centres.

Sexual Abuse of Persons with Disabilities - Research

Rob Aley
et al
November 2016

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The aim of the research was to investigate the social, cultural and institutional factors which contribute to the high incidence of sexual abuse of persons with disabilities in East Africa and to identify interventions which could change detrimental attitudes, beliefs and practices which perpetuate this high incidence. The research is framed within the United Nations Convention on the Rights of Persons with Disability (UNCRPD), particularly articles 12, 13 and 16.

The study used a qualitative participatory action research approach and worked with local partner organisations and Ugandan and Kenyan field level researchers to collect data. Survivors of sexual abuse were not interviewed but instead the research investigated the understandings, beliefs and practices of a range of service providers and key responders who are involved in the prevention of and response to sexual abuse against persons with disabilities in their communities. Groups consulted included police, teachers, health-care workers, government administrators, faith and community organisations and traditional leaders, as well as persons with disabilities and their parents. Participatory workshops were run with a reference group of people with disabilities (with a range of impairments and experiences) and relevant specialists at the initial stage and during the participatory analysis process. After initial orientation and training the field researchers undertook a total of 52 individual interviews and 9 focus group discussions with a range of stakeholders.

The overall findings show that social attitudes and understanding of disability and sexuality in general are strong influencing factors on the risks that persons with disability face in relation to sexual abuse. Participants reported a range of harmful attitudes and beliefs about disability and about the needs and rights of persons with disabilities. It is very common for cases of abuse to go unreported and to be dealt with at the family or community level, rather than being viewed as a serious criminal matter which should be taken to the formal authorities. Many barriers exist, especially at community level which mean abuse does not get reported. Lack of awareness and knowledge, stigma and exclusion and poverty were key drivers of continuing abuse and survivors of abuse seldom get proper support. Guidelines, training and clear procedures for good practice in the various professions were generally weak or absent. Key recommendations were generated for both community level interventions and in relation to policy and training at regional and national levels. The practical implementation of some recommendations was undertaken.

Sexual Abuse of Persons with Disabilities - Research

ALEY, Rob
et al
November 2016

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Abstract
The aim of the research was to investigate the social, cultural and institutional factors which contribute to the high incidence of sexual abuse of persons with disabilities in East Africa and to identify interventions which could change detrimental attitudes, beliefs and practices which perpetuate this high incidence. The research is framed within the United Nations Convention on the Rights of Persons with Disability (UNCRPD), particularly articles 12, 13 and 16.

The study used a qualitative participatory action research approach and worked with local partner organisations and Ugandan and Kenyan field level researchers to collect data. Survivors of sexual abuse were not interviewed but instead the research investigated the understandings, beliefs and practices of a range of service providers and key responders who are involved in the prevention of and response to sexual abuse against persons with disabilities in their communities. Groups consulted included police, teachers, health-care workers, government administrators, faith and community organisations and traditional leaders, as well as persons with disabilities and their parents. Participatory workshops were run with a reference group of people with disabilities (with a range of impairments and experiences) and relevant specialists at the initial stage and during the participatory analysis process. After initial orientation and training the field researchers undertook a total of 52 individual interviews and 9 focus group discussions with a range of stakeholders.

The overall findings show that social attitudes and understanding of disability and sexuality in general are strong influencing factors on the risks that persons with disability face in relation to sexual abuse. Participants reported a range of harmful attitudes and beliefs about disability and about the needs and rights of persons with disabilities. It is very common for cases of abuse to go unreported and to be dealt with at the family or community level, rather than being viewed as a serious criminal matter which should be taken to the formal authorities. Many barriers exist, especially at community level which mean abuse does not get reported. Lack of awareness and knowledge, stigma and exclusion and poverty were key drivers of continuing abuse and survivors of abuse seldom get proper support. Guidelines, training and clear procedures for good practice in the various professions were generally weak or absent. Key recommendations were generated for both community level interventions and in relation to policy and training at regional and national levels. The practical implementation of some recommendations was undertaken.

Parental stress and support of parents of children with spina bifida in Uganda

BANNINK, Femke
IDRO, Richard
VAN HOVE, Geert
2016

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Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.

 

Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.

 

Methods: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels.

 

Results: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**).

 

Conclusion: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.

‘Ask us what we need’: Operationalizing Guidance on Disability Inclusion in Refugee and Displaced Persons Programs

PEARCE, Emma
2015

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Persons with disabilities remain one of the most vulnerable and socially excluded groups in any displaced community. Barriers to accessing humanitarian assistance programs increase their protection risks, including risk of violence, abuse and exploitation. Women’s Refugee Commission has been supporting the United Nations High Commissioner for Refugees and implementing partners to translate guidance on disability inclusion into practice at field levels through the provision of technical support to eight country operations. In the course of the project, WRC has consulted with over 600 persons with disabilities and care-givers and over 130 humanitarian actors in displacement contexts. Key protection concerns identified include a lack of participation in community decision making; stigma and discrimination of children and young persons with disabilities by their non-disabled peers; violence against persons with disabilities, including gender-based violence; lack of access to disabilityspecific health care; and unmet basic needs among families of persons with multiple impairments. Suggested strategies to further advance disability inclusion in humanitarian programming include: strengthening identification of protection risks and case management services for persons with disabilities; facilitating contextspecific action planning around key guidelines; and engaging the disability movement in advocacy on refugee issues.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 1

Disability : making CLTS fully inclusive

WILBUR, Jane
JONES, Hazel
2014

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This issue of Frontiers of CTLS (Community led total sanitation) focuses on “people with disabilities and particular needs for access to sanitation. There are many forms of disability, including mobility impairments, sensory impairments (affecting sight or hearing), chronic illness, impairments caused by older age or mental health issues.  People affected tend not to be present at triggering, to lack voice in the community, to have their needs overlooked, and may even be hidden by their families. This issue outlines the reality of the experiences of disabled people, the varied nature of their needs and how they can be met. It includes practical recommendations for people engaged in CLTS to make the different phases and processes of CLTS more inclusive”

Frontiers of CLTS : innovations and insights, Issue 03

A video and presentation is also available

Applied research on disability in Africa : general mapping

INTERNATIONAL FOUNDATION OF APPLIED DISABILITY RESEARCH (FIRAH)
2014

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“The goal of this literary review is to report on existing knowledge about applied research on the African continent, regarding the living conditions of people with disabilities, poverty, violence and sexual abuse especially regarding children and women with disabilities, community-based rehabilitation and employment”

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