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“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 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.

“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.

Musculoskeletal impairment among Syrian refugees living in Sultanbeyli, Turkey: prevalence, cause, diagnosis and need for related services and assistive products

BOGGS, Dorothy
ATIJOSAN-AYODELE, Oluwarantim
YONSO, Hisem
et al
April 2021

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Epidemiological data on musculoskeletal impairment (MSI) and related service and assistive product (AP) needs for displaced populations are lacking. This study aimed to estimate the prevalence, aetiology, and specific MSI diagnosis and the need for related services and APs among Syrian refugees living in Sultanbeyli, a district in Istanbul, Turkey.

A population-based survey used probability proportionate to size and compact segment sampling to select 80 clusters (‘street’) of 50 individuals (aged 2+), for total sample size of approximately 4000 participants. An updated version of the Rapid Assessment of MSI tool (RAM) was used to screen all participants using six questions. Any participant who screened positive underwent a standardised examination by a physiotherapist to assess the presence, aetiology, severity and specific diagnosis of MSI and an assessment of need for related services and APs.

 

Conflict and Health volume 15, Article number: 29 (2021)

https://doi.org/10.1186/s13031-021-00362-9

German version of the Chelsea Critical Care Physical Assessment Tool (CPAx-GE): translation, cross-cultural adaptation, validity, and reliability

EGGMANN, Sabrina
VERRA, Martin L
STEFANICKI, Valentine
KINDLER, Angela
SEYLER, Daphne
HILFIKER, Roger
SCHEFOLD, Joerg C
BASTIAENEN, Caroline H G
ZANTE, Bjoern
2021

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Purpose: To translate and cross-culturally adapt the Chelsea Critical Care Physical Assessment tool from English to German (CPAx-GE) and to examine its validity and reliability.


Materials and methods: Following a forward-backward translation including an expert round table dis- cussion, the measurement properties of the CPAx-GE were explored in critically ill, mechanically ventilated adults. We investigated construct, cross-sectional, and cross-cultural validity of the CPAx-GE with other measurement instruments at pre-specified timepoints, analysed relative reliability with intraclass correl- ation coefficients (ICCs) and determined absolute agreement with the Bland–Altman plots.

 

Results: Consensus for the translated CPAx-GE was reached. Validity was excellent with >80% of the pre- specified hypotheses accepted at baseline, critical care, and hospital discharge. Interrater reliability was high (ICCs > 0.8) across all visits. Limit of agreement ranged from 2 to 2 points. Error of measurement was small, floor, and ceiling effects limited.

 

Conclusions: The CPAx-GE demonstrated excellent construct, cross-sectional, and cross-cultural validity as well as high interrater reliability in critically ill adults with prolonged mechanical ventilation at baseline, critical care, and hospital discharge. Consequently, the CPAx-GE can be assumed equal to the original and recommended in the German-speaking area to assess physical function and activity of critically ill adults across the critical care and hospital stay.

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.

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. 

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? 

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

‘Because of COVID, Everything is a Mess’ How Have People with Disabilities Experienced the Pandemic in Nepal and Bangladesh?

ROHWERDER, Brigitte
THOMPSON, Stephen
SHAW, Jackie
WICKENDEN, Mary
KAYASTHA, Shubha
SIGDEL, Anita
AKTER, Fatema
BOSRI, Rabia
March 2021

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COVID-19 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 pandemic and responses to it. The aim of this research was to better understand how people with disabilities who are often excluded from research have experienced the evolving COVID-19 pandemic in Bangladesh and Nepal. In order to better understand how it has affected some of the most marginalised groups of people with disabilities, this study used in-depth qualitative research to focus on people with intellectual, psychosocial, deafblindness and other multiple impairments.

 

আমরা বাংলাদেশে (20 জন লোক) এবং নেপালে (15 জন লোক) বসবাসরত 35টি ডিজেবলড লোকদেরকে কোভিড-19 প্রাদুর্ভাব চলাকালীন সময়ে তাদের জীবন সম্পর্কে জিজ্ঞাসা করেছি। তাদের মধ্যে বধিরতা, নেত্রহীনতা, বৌদ্ধিক ডিজেবিলিটি এবং মানসিক ডিজেবিলিটি’র মতন বিভিন্ন ধরণের ডিজেবিলিটি রয়েছে। তাদেরকে জিজ্ঞাসা করার প্রধান কারণ হল যে প্রায়শই তাদেরকে তাদের জীবন সম্পর্কে কিছুই জিজ্ঞাসা করা হয় না। আমরা ডিজেবলড বাচ্চাদের বাবা-মাদেরকেও তাদের অভিজ্ঞতা সম্পর্কে জিজ্ঞাসা করেছি।

 

हामीले बङ्गलादेश (20 जना मानिस) र नेपाल (15 जना मानिस) मा अपाङ्गता भएका 35 जना व्यक्तिलाई कोभिड-19 को प्रकोपको समयमा आफ्नो जीवन बारे हामीलाई बताउन अनुरोध गर्‍यौं। उहाँहरूलाई वणदृष्टिविहीन, बौद्धिक अपाङ्गता र मनोसामाजिक अपाङ्गता जस्ता विभिन्न अपाङ्गता थिए। उहाँहरूलाई प्रायः आफ्नो जीवन बारे नसोधिने भएकोले हामी उहाँहरूलाई सोध्न चाहन्थ्यौं। हामीले अपाङ्गता भएका बालबालिकाका आमाबुवाहरूलाई पनि सोध्यौं।

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.

The influence of a contoured seating base on pressure distribution and discomfort

DE MARE, Lieke
DE GROOT, Bas
DE KONING, Fleur
GEERS, Richard
TETTEROO, Daniel
2021

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Purpose: This research paper examines how contouring of a wheelchair seating base can help prevent pressure sores by distributing pressure over the buttocks. Contouring wheelchair cushioning is already done to some extent and has proved to be beneficial for pressure distribution. We researched the effect of contouring the seating base, and whether contouring the seating base affects effectiveness in pressure distribution and perceived discomfort.

 

Materials & methods: 13 healthy participants performed a within-subject experiment with three differ- ently contoured seating bases. Perceived comfort and seating pressure were measured for each condition.
Results: Results indicate that a more contoured base is positive for both comfort and increased pressure distribution.

 

Conclusions: Contoured seating bases can provide increased comfort and improved pressure distribution over flat seating bases. Future research should examine the effect of contouring on stability, as well as compare the effects of contoured seating bases and contoured cushions.

A high prevalence of manual wheelchair rear-wheel misalignment could be leading to increased risk of repetitive strain injuries

OTT, Joseph
HENDERSON, Travis
WILSON-JENE, Holly
KOONTZ, Alicia
PEARLMAN, Jonathan
2021

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Purpose: To determine the prevalence and severity of manual wheelchair rear wheel misalignment in community-dwelling manual wheelchair users and estimate the associated increases in rolling resistance (RR) and risk of repetitive strain injuries (RSIs).


Materials and Methods: Data were collected in an outpatient rehabilitation clinic, a university research laboratory, and at adaptive sporting events in the United States. Two hundred active, self-propelling man- ual wheelchair users were recruited. Angular misalignment (referred to as toe angle) while the wheelchair was loaded with the user, and the difference between the maximum and minimum toe angle (referred to as slop) with the wheelchair unloaded.

 

Results: Average results for toe angle and slop (movement in the rear wheels) were 0.92 and 0.61 degrees, respectively. Using a lab-based testing method, we quantified the impact of increased RR forces due to misalignment in increased RR forces. Our results indicate that the average toe angle while under load and slop, without loading, measured in the community increase required propulsion force by 3.0 N. Combined toe angle and slop (i.e., the worst-case scenario) added increased propulsion force by 3.9 N. Conclusions: We found that rear-wheel misalignment was prevalent and severe enough that it may increase the risk for RSIs and decrease participation. To mitigate this issue, future work should focus on reducing misalignment through improved maintenance interventions and increased manufacturing qual- ity through more stringent standards.

‘Teachers Did Not Let Me Do It.’: Disabled Children’s Experiences of Marginalisation in Regular Primary Schools in China

WANG, Yuchen
2021

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The large-scale mainstreaming of disabled children in education in China was initiated with the launching of a national policy called ‘Learning in Regular Classrooms’ in the late 1980s. More than thirty years on, and little is known about disabled children’s daily experiences in regular schools due to a lack of research that foregrounds their voices. This paper reports the main findings from an ethnographic study conducted in 4 state- funded primary schools in Shanghai involving 11 children labelled as having ‘intellectual disabilities’, 10 class teachers and 3 resource teachers. Data were collected through participant observation, semi-structured interviews, and child-friendly participatory activities, and thematically analysed to identify patterns in practices and beliefs that underpin the processes of inclusion and exclusion. The research found that the child participants were facing marginalisation in many aspects of school life with rather limited participation in decision-making. The exclusionary processes were reinforced by a prevailing special educational thinking and practice, a charitable approach to the disadvantaged in a Confucian society, and an extremely competitive and performative schooling culture. The findings address the need to hear disabled children’s voices to initiate a paradigm shift in understanding and practice to counterbalance deep-rooted barriers. The paper concludes with suggestions for future research.

How targeting mechanisms can identify people with disabilities for inclusion in social protection programmes

SAMMON, Elayn
CARRARO, Ludovico
COTE, Alexandre
ZEVENBERGEN, Stacey
HOLMES, Rebecca
March 2021

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Developed by Social Protection Approaches to COVID-19: Expert Advice (SPACE) in collaboration with the UNPRPD joint program on inclusive Social Protection, the UNPRPD global initiative on COVID 19 inclusive response and recovery, and Humanity & Inclusion.

The COVID-19 pandemic has demonstrated that countries which have disability identification mechanisms and registries already in place have been in a better position to provide fast relief and expand shock responsive support to persons with disabilities and their families. 

This guidance note includes:

  • Brief introduction to the definitions and terminology surrounding disability and the concept of inclusive social protection
  • Summary of the rationale for the inclusion of persons with disability in social protection programming
  • Examples for overcoming the challenges for outreach, identification, and registration, and needs assessment
  • Some country examples
  • Overall implications for future programming.

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