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Uganda's disability data landscape and the economic inclusion of persons with disabilities

Development Initiatives
November 2021

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This report looks at the landscape of data on disability in Uganda – summarising what data on persons with disabilities is available, who produces and uses it, and how – as well as what this means for the economic inclusion of persons with disabilities.

 

For persons with disabilities to benefit from and contribute to society and the economy there needs to be effective policies, programmes and services that support their inclusion, particularly in employment. Reliable information and data on persons with disabilities, known as ‘disability data’, is essential to planning and for decision-making. When it is of high quality, accessible and used effectively, disability data can help organisations of persons with disabilities (OPDs), civil society, government and businesses better understand and prioritise interventions that are vital for supporting persons with disabilities and ensuring their inclusion.

 

OPDs, civil society and the government have an important role to play in strengthening the landscape of disability data. Developed as part of Development Initiatives’ work on data to support disability inclusion, in consultation with Uganda’s disability rights movement, this report presents an analysis of Uganda’s landscape of disability data. It highlights important data sources, challenges and recommendations, providing a valuable evidence base to inform efforts aimed at strengthening the enabling environment for disability inclusion.

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.

Labour Market Assessment: Bangladesh 2021 refresh

INCLUSIVE FUTURES
BROWN, SIMON
August 2021

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This Labour Market Assessment for Bangladesh is a refresh of the initial assessments done in 2019 for the Inclusion Works programme. The assessment adopts a Markets for Poor (M4P) approach to mapping demand for and supply of labour, supporting functions and regulatory frameworks; recognising that labour markets conditions will have evolved since 2019, especially in light of COVID-19. The perspectives of jobseekers, employers, and organisations of persons with disabilities (OPDs) are also included in this analysis. The report provides insights into market changes and recommendations to enable Inclusion Works programming to adapt and be more effective in their interventions.

Labour Market Assessment: Kenya 2021 refresh

INCLUSIVE FUTURES
BROWN, SIMON
OBOSI, Shikuku
August 2021

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This Labour Market Assessment for Kenya is a refresh of the initial assessments done in 2019 for the Inclusion Works programme. The assessment adopts a Markets for Poor (M4P) approach to mapping demand for and supply of labour, supporting functions and regulatory frameworks; recognising that labour markets conditions will have evolved since 2019, especially in light of COVID-19. The perspectives of jobseekers, employers, and organisations of persons with disabilities (OPDs) are also included in this analysis. The report provides insights into market changes and recommendations to enable Inclusion Works programming to adapt and be more effective in their interventions.

Labour Market Assessment: Nigeria 2021 refresh

INCLUSIVE FUTURES
BROWN, Simon
August 2021

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This Labour Market Assessment for Nigeria is a refresh of the initial assessments done in 2019 for the Inclusion Works programme. The assessment adopts a Markets for Poor (M4P) approach to mapping demand for and supply of labour, supporting functions and regulatory frameworks; recognising that labour markets conditions will have evolved since 2019, especially in light of COVID-19. The perspectives of jobseekers, employers, and organisations of persons with disabilities (OPDs) are also included in this analysis. The report provides insights into market changes and recommendations to enable Inclusion Works programming to adapt and be more effective in their interventions.

Labour Market Assessment: Uganda 2021 refresh

INCLUSIVE FUTURES
BROWN, SIMON
OBOSI, Shikuku
August 2021

Expand view

This Labour Market Assessment for Uganda is a refresh of the initial assessments done in 2019 for the Inclusion Works programme. The assessment adopts a Markets for Poor (M4P) approach to mapping demand for and supply of labour, supporting functions and regulatory frameworks; recognising that labour markets conditions will have evolved since 2019, especially in light of COVID-19. The perspectives of jobseekers, employers, and organisations of persons with disabilities (OPDs) are also included in this analysis. The report provides insights into market changes and recommendations to enable Inclusion Works programming to adapt and be more effective in their interventions.

“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.

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.

Assessment of functioning and disability in patients with low back pain – the low back pain assessment tool. Part 1: development

IBSEN, Charlotte
SCHIØTTZ-CHRISTENSEN, Berit
NIELSEN, Claus Vinther
HØRDER, Mogens
SCHMIDT, Anne Mette
MARIBO, Thomas
2021

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Purpose: To present the process used to develop the low back pain (LBP) assessment tool including evaluation of the initial content validity of the tool.


Methods: The development process comprised the elements: definition of construct and content, literature search, item generation, needs assessment, piloting, adaptations, design, and technical production. The LBP assessment tool was developed to assess the construct “functioning and disability” as defined by the International Classification of Functioning, Disability and Health (ICF). Involvement of patients and health professionals was essential.

 

Results: The elements were collapsed into five steps. In total, 18 patients and 12 health professionals contributed to the content and the design of the tool. The LBP assessment tool covered all ICF components shared among 63 ICF categories.


Conclusions: This study presents the process used to develop the LBP assessment tool, which is the first tool to address all ICF components and integrate biopsychosocial perspectives provided by patients and health professionals in the same tool. Initial evaluation of content validity showed adequate reflection of the construct “functioning and disability”. Further work on the way will evaluate comprehensiveness, acceptability, and degree of implementation of the LBP assessment tool to strengthen its use for clinical practice.

A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System – Child version

AXELSSON, Anna Karin
ULLENHAG, Anna
ÖDMAN, Pia
2021

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Purpose: The aim was to culturally validate a questionnaire about children’s/youth’s participation to be used in a Swedish context.


Methods: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed.

 

Results: The interviews provided support for the questionnaire’s relevance by being a tool to assess important aspects of participation, to gain insights into one’s own/the child’s participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where “parades” are unusual in Sweden and therefore removed, while “singing in choir” was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. 

 

Conclusions: The questionnaire can be used for establishing meaningful goals and to potentially increase children’s participation.

The Experiences of Carers of Adults With Intellectual Disabilities During the First COVID-19 Lockdown Period

PATEL, Varsha
PEREZ-OLIVAS, Gisela
KROESE, Biza Stenfert
ROGERS, Gemma
ROSE, John
MURPHY, Glynis
COOPER, Vivien
LANGDON, Peter E
HILES, Steve
CLIFFORD, Clair
WILLNER, Paul
2021

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Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers.


Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the rst 2020 lockdown period.


Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis.


Results: Four main themes were identied: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being.


Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These Findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

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.

How can we overcome barriers to accessing rehabilitation for persons with disabilities in LMIC? - Evidence brief

MACTAGGART, Islay
April 2021

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Rehabilitation is described as a set of measures to optimise the functioning of individuals, and is important for wellbeing, participation and quality of life. Rehabilitation includes diagnosis, treatments, surgeries, assistive devices and therapies. Not all people who need rehabilitation are people with disabilities, and not all people with disabilities need rehabilitation. The World Health Organisation (WHO) recently estimated that 1 in 3 people globally (2.41 billion people) would benefit from rehabilitation: this number has increased nearly two thirds since 1990, due to population growth and increase in Non-Communicable Diseases (NCDs). In contrast, there are estimated to be less than 10 skilled rehabilitation practitioners per million population in Low and Middle Income Countries (LMICs), and only 5 – 15% of people in need of assistive devices are thought to have received them.

 

Evidence is reviewed and recommendations provided

A comparison of routine and case-managed pathways for recovery from musculoskeletal disorders in people in employment

BERGMAN, Beverly P
DEMOU, Evangelia
LEWSEY, James
MACDONALD, Ewan
2021

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Purpose: To compare outcomes in employed people from an enhanced routine management pathway for musculoskeletal disorders within National Health Service Scotland with an existing active case-management system, Working Health Services Scotland.


Materials and methods: The study comprised a service evaluation using anonymised routinely collected data from all currently employed callers presenting with musculoskeletal disorder to the two services. Baseline demographic and clinical data were collected. EuroQol EQ-5DTM scores at the start and end of treatment were compared for both groups, overall and by age, sex, socio-economic status, and anatomical site, and the impact of mental health status at baseline was evaluated.

 

Results: Active case-management resulted in greater improvement than enhanced routine care. Case-managed service users entered the programme earlier in the recovery pathway; there was evidence of spontaneous improvement during the longer waiting time of routine service clients but only if they had good baseline mental health. Those most disadvantaged through mental health co-morbidity showed the greatest benefit.

 

Conclusions: People with musculoskeletal disorders who have poor baseline mental health status derive greatest benefit from active case-management. Case-management therefore contributes to reducing health inequalities and can help to minimise long-term sickness absence. Shorter waiting times contrib- uted to better outcomes in the case-managed service.

The effects of wheelchair mobility skills and exercise training on physical activity, fitness, skills and confidence in youth using a manual wheelchair

SOL, Marleen E
VERSCHUREN, Olaf
HOREMANS, Henricus
WESTERS, Paul
VISSER-MEILY, Johanna M A
DE GROOT, Janke F
Fit-for-the-Future Consortium
2021

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Purpose: To evaluate the effects of a combination of wheelchair mobility skills (WMS) training and exer- cise training on physical activity (PA), WMS, confidence in wheelchair mobility, and physical fitness. Methods: Youth using a manual wheelchair (n 1⁄4 60) participated in this practice-based intervention, with a waiting list period (16 weeks), exercise training (8 weeks), WMS training (8 weeks), and follow-up (16 weeks). Repeated measures included: PA (Activ8), WMS (Utrecht Pediatric Wheelchair Mobility Skills Test), confidence in wheelchair mobility (Wheelchair Mobility Confidence Scale), and physical fitness (cardio- respiratory fitness, (an)aerobic performance) and were analysed per outcome parameter using a multilevel model analyses. Differences between the waiting list and training period were determined with an unpaired sample t-test.

 

Results: Multilevel model analysis showed significant positive effects for PA (p1⁄40.01), WMS (p<0.001), confidence in wheelchair mobility (p<0.001), aerobic (p<0.001), and anaerobic performance (p<0.001). Unpaired sample t-tests underscored these effects for PA (p<0.01) and WMS (p<0.001). There were no effects on cardiorespiratory fitness. The order of training (exercise before WMS) had a significant effect on confidence in wheelchair mobility.

 

Conclusions: A combination of exercise and WMS training appears to have significant positive long-term effects on PA, WMS, confidence in wheelchair mobility, and (an)aerobic performance in youth using a manual wheelchair.

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