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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.

Uncertain Personhood: Notes on Ageing and Disability in Guwahati During COVID 19

BEZBARUAH, Vaijayanti
2021

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The circumstantial understanding of the ‘normal’, ushered in by the spread of COVID 19, has been the practice of ‘social distancing’. Exercising this ‘new normal’ has been a challenge in general for society. However, it is particularly important to recognize the psycho-social impact and analyse it through the lens of ageing in relation to experiences of disability. This paper therefore attempts to explore the experiences of uncertainties in the light of ageing with disabilities, pronounced during a time of crisis, leading to social distress. With the help of telephonic conversations, the paper discusses some of the stories of people living in Guwahati, in the age-group of 70 to 90, drawing on an intersectional understanding of personhood, social suffering, and symbolic disability. It is also an attempt to look into the aspect of wellbeing (physical, psychological and emotional) of the elderly amidst disabilities, while stepping into unfamiliar social boundaries of ambiguity, that further disable the elderly in terms of the sudden fading of the regular support structures and systematic foundations of the ‘social’ once known to them.

The impact of Covid-19 on people with disabilities – emerging findings

ROHWERDER, Brigitte
THOMPSON, Stephen
WICKENDEN, Mary
WAKOKO, Eric
AKTER, Fatema
NJUNGI, Josephine
CHUBA-UZO, Shadrach
September 2020

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Emerging evidence suggests that people with disabilities are amongst the groups most affected by the COVID-19 pandemic in all aspects of their lives. In order to provide more systematic evidence, narrative interviews were conducted with a diverse group of 40 jobseekers with disabilities in Bangladesh, Kenya, Nigeria, and Uganda who are involved with the Inclusion Works programme. The first round of interviews were conducted in July and August 2020. Initial key findings are given.

 

Differentiation and individualisation in inclusive education: a systematic review and narrative synthesis

LINDNER, Katharina-Theresa
SCHWAB, Susanne
2020

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This study integrates research about differentiation and individualisation in inclusive education since the UN Convention on the Rights of Persons with Disabilities in 2006 (United Nations, 2006). The concept of inclusive education for all learners increases the requirement for teachers to create educational spaces that encourage stimulating teaching and learning processes. Accordingly, a methodological shift from the traditional ‘one-size-fits-all’ model to individualised teaching and learning offers a starting point for educational equity. The aim of this paper is to investigate the progress of differentiated and individualised teaching practices in inclusive classroom settings considering collaboration and teamwork, instructional practices, organisational practices and social/emotional/behavioural practices (see Finkelstein, Sharma, & Furlonger, 2019. “The Inclusive Practices of Classroom Teachers: A Scoping Review and Thematic Analysis.” International Journal of Inclusive Education, 1–28). Results of a criteria-based review considering papers from 2008 to December 2018 encompass 17 articles that were included in the narrative synthesis. Results indicated that the following aspects are characteristic of inclusive education: collaboration and co-teaching, grouping, modification (of assessment, content, extent, instruction, learning environment, material, process, product and time frame), individual motivation and feedback, and personnel support of students. Implications of the findings and gaps in the research have been outlined.

Work ethics and societal norms influence sick leave and return to work: tales of transformation

MOLDVIK, Isa
STAHL, Christian
MUSSENER, Ulrika
February 2020

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Purpose: This study’s purpose was to explore how people on sick leave manage societal norms and values related to work, and how these influence their perspectives of themselves throughout the rehabilitation process.

 

Materials and methods: This was a longitudinal interview study with a narrative approach, comprising 38 interviews with 11 individuals on long-term sick leave. Data collection was conducted in two phases and analysed iteratively through content analysis.

 

Results: The results suggest that work ethics and societal norms influence individuals’ views of themselves and the sick leave and rehabilitation process. Conforming one’s personal values to the work norm can create internal conflicts and cause feelings of shame for not being able to live up to the established norm. The strong work norm may create unrealistic expectations, which in some cases may result in constraining the return to work process.

 

Conclusion: To transform a sick leave narrative into a positive one, societal norms and their influence on identity needs to be recognised. Stakeholders involved in the process can contribute to a positive transformation by not only supporting return to work, but also to acknowledge and help people manage their self-image as having a disability that limits their ability to work.

Impact of Covid-19 on the lives of people with disabilities. Insight and stories from Bangladesh and Kenya

i2i INNOVATION TO INCLUSION
January 2020

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In April and May 2020 the Innovation to Inclusion (i2i) programme, supported disabled persons organisations (DPOs) to complete a qualitative survey of 312 people with disabilities (including 147 women) in Bangladesh and Kenya to understand the impact of COVID-19 and measures to prevent its spread. The survey - a descriptive survey with a representative sample of people with physical, intellectual and multiple disabilities, visual and hearing impairments and mental health issues in the Nairobi, Mombasa and Kasumu areas of Kenya and in the Dhaka, Sylet and Chattogram districts of Bangladesh - has been part of wider efforts by DPOs in the two countries to test and embed data driven advocacy processes towards realising CRPD.   

 

Topics covered included: employment and job insecurity; access to general pulic information; PPE; access to support; assistive tecnology and discrimination

Storying disability’s potential

WHITBURN, Ben
GOODLEY, Dan
2019

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In this paper, we weave in and out of theory and narrative in order to consider the potential of disability and its relationship to knowledge construction. We consider theories to be stories that one can tell about the world. And these theories are enlivened by other stories that we tell about ourselves and the world around us. As disability researchers, we explore the ways in which disability becomes known in the world and we do so through our own tales and theoretical narratives of knowing disability. In telling stories, then, we break down artificial boundaries between theory and narrative. And in theorising our stories – and storying our theories – we seek to explore the potential of disability to unsettle and challenge exclusionary curriculum. This textual assemblage traverses diverse themes including diagnosis, school programming, welfare, transportation, social interaction and access.

Views from the borderline: Extracts from my life as a coloured child of deaf adults, growing up in apartheid South Africa

HARRISON, Jane
WATERMEYER, Brian
2019

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Background: Over 90% of Deaf parents have hearing children, but there are very few, if any, studies that have explored the life worlds of hearing children of Deaf adults (CODAs) in South Africa. This article is an account of part of the life experiences of a female hearing child who was born and raised by her Deaf parents in apartheid South Africa in the 1980s.

 

Objectives: This study used auto-ethnography to explore the socialisation of a female coloured CODA during the height of South Africa’s apartheid era, in order to shed light on intersectional influences on identity and selfhood. The study was intended to contribute to the limited knowledge available on the life circumstances of CODAs in Global South contexts.

 

Methods: Evocative auto-ethnography under a qualitative research paradigm was used to explore the life world of a now adult female hearing child of Deaf parents. Her thoughts, observations, reflections and involvements are articulated in a first person written narrative that is presented in this article. A thematic analysis approach was used to analyse data, and the themes that emerged are: (1) CODAs as language brokers, (2) being bilingual and trilingual, (3) being bicultural, (4) role reversal and parentification and (5) issues of identity. A discussion of these themes is interwoven with the literature, in an effort to provide a rich and robust analysis that contributes to the body of knowledge.

 

Results: Multiple identity markers that include disability, gender, race, age, nationality, culture and language intersect to frame the life world of a hearing child of Deaf parents who grew up in the apartheid era in South Africa. The result is both positive and negative life experiences, arising from being located simultaneously in both a hearing and Deaf world.

 

Conclusion: This study suggests that, in part, the life world of a hearing child of Deaf parents is multi-layered, multidimensional and complex; hence, it cannot be presented with a single description. Recommendations that inform policy and practice are outlined in the concluding section of the article.

 

 

African Journal of Disability, Vol 8, 2019

Disability, Decoloniality, and Other-than-Humanist Ethics in Anzaldúan Thought

BOST, Suzanne
2019

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Gloria Anzaldúa’s writing has been read as decolonial based on her resistance to dominant national, racial, and cultural formations. This essay turns to unpublished documents from the Gloria Anzaldúa archive that are decolonial at a more fundamental level. In autobiographical writings about her own experiences with disability, as well as doodles and figure drawings, the alternate forms of human life that Anzaldúa depicts defy the logics of identification and differentiation that underlie colonial hierarchies. Refusing to fix bodies with labels, Anzaldúa accepted mystical encounters and inter-species minglings without judgment. She experienced her own disabling conditions (including a severe hormone imbalance and Type 1 diabetes) in the epistemological fold between medical diagnoses (which enforce the coloniality of power, knowledge, and being) and trans-corporeal perceptions that defy empirical analysis. I analyze the ways in which these more capacious ways of being resonate with recent developments in posthumanist theory and disability ethics.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 1

Is there really a “golden hour” for work disability interventions? A narrative review

ASADAHL, Lene
STEIRO FIMLAND, Marius
January 2019

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The subacute phase of low back pain has been termed as the “golden hour” to intervene to prevent work disability. This notion is based on the literature up to 2001 and is limited to back pain. In this narrative review, we examined whether the current literature indicate an optimal time for return to work (RTW) interventions. We considered randomized controlled trials published from 1997 to April 2018 assessing effects of occupational rehabilitation interventions for musculoskeletal complaints (15 included), mental health disorders (9 included) or a combination of the two (1 included). We examined participants’ sick leave duration at inclusion and the interventions’ effects on RTW. Most studies reporting an effect on RTW included participants with musculoskeletal complaints in the subacute phase, supporting that this phase could be a beneficial time to start RTW-interventions. However, recent studies suggest that RTW-interventions also can be effective for workers with longer sick leave durations. Our interpretation is that there might not be a limited time window or “golden hour” for work disability interventions, but rather a question about what type of intervention is right at what time and for whom. However, more research is needed. Particularly, we need more high-quality studies on the effects of RTW-interventions for sick listed individuals with mental health disorders.

Yuin, Kamilaroi, Sámi, and Maori people’s reflections on experiences as ‘Indigenous scholars’ in ‘Disability Studies’ and ‘Decolonisation’

GILROY, John
UTTJEK, Margaretha
GIBSON, Chontel
SMILER, Kirsten
2018

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Disability research in Indigenous communities operates within a culture of academic neo-imperialism. There is a need to decolonise disability research on a global level. Limited knowledge exists on Indigenous disability researchers' experiences in the disability research academy and on Indigenous disability research methodologies. In part, this is due to the limited writings produced by Indigenous peoples on disability research and research methodologies. Four indigenous disability researchers, one from the Nordic Region and two from Australia, and one from New Zealand met during and after the 2017 Nordic Network on Disability Research conference and reflected on and discussed each other’s experiences as Indigenous disability researchers. This paper reports on these scholars’ reflections on comparing the research methodologies and experiences of their disability research. Findings highlight how although Indigenous peoples are from different tribes/nations and countries, there are similarities and differences between each of the Indigenous disability researcher’s approach to decolonisation in disability research. The paper concludes that Sami, Australian Aboriginal people, and Maori people can learn from each other to advance the decolonisation of disability research, service and policy, at local, national and international levels.

 

Disability and the Global South, 2018, Vol.5, No. 2

Audiology and speech-language pathology: Practitioners’ reflections on indigeneity, disability and neo-colonial marketing

PILLAY, Mershen
KATHARD, Harsha
2018

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Indigenous peoples are part of those populations who are underserved by Audiology and Speech-Language Pathology. They include minority world populations like Aboriginal Australians/Canadians and majority world peoples in Asia, Africa and the Americas. How do Western-oriented rehabilitation/disability practitioners practice with Others? In this article, we reflect on our own experiences and use ideological critique to reveal the fault lines in Audiology and Speech-Language Pathology practices. Along with other examples, we analyse South African data, viz.: canonical articles as illuminators and our works (c1990-). We reveal predominant practices/ideologies that contribute to the production of disability. We focus on three interconnected issues (i) the construction of rehabilitation/disability practitioners as (il)legitimate providers for indigenous peoples; (ii) the engagement of epistemic violence across disability practice, educational and policy domains; and (iii) the authoritative (re)inscription of indigenous persons as disabled by transnational practitioners who, like their corporate counterparts, market practices. Professional marketeering is infused with bigotry, masked as benevolence and resourced/justified by global, neo-liberal policies (e.g., international conventions) and funding. We conclude that disability practices and indigeneity in the post-colonial moment capitalises on established settler-native relationships to continue dominance over Others’ lives. Finally, we present a way forward, namely the relationship of Labouring Affinities which promotes deimperialisation and decolonisation practices to enable professional transformation.

 

Disability and the Global South, 2018, Vol.5, No. 2

Frida Kahlo and pendular disability identity: A textual examination of El Diario de Frida Kahlo

JONES, Elizabeth
2018

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Frida Kahlo is undoubtedly one of Mexico’s most famous female artists, and her rising popularity led to the 1995 publication of the diary she kept the last ten years of her life. Nonetheless, while the diary has received some critical scrutiny, the text has not been analyzed as an independent unit from the book’s visual components. As a result, Kahlo’s disability identity has also not been explored, but rather was assumed due to the extensive injuries Kahlo suffered as a young woman. These examinations have also tended to view Kahlo as having a fragmented sense of self and have allowed the diary’s artwork to guide this assumption. In dialogue with prior studies of Kahlo’s diary, this analysis will view the diary as an independent text and apply Karen K. Yoshida’s model of pendular reconstruction of self and identity to demonstrate how Kahlo describes her disability identity and better understand what others have called her ‘fragmentation.’ 

 

Disability & the Global South (DGS), 2018, Vol. 5 No. 1

Confessions of an inadequate researcher: space and supervision in research with learning disabled children

BENZON, Nadia von
2016

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Location is often at the fore of decision-making regarding fieldwork and choice of methods. However, little research has directly discussed the importance of the choice of site in the production of research data, particularly concerning the way that different relationships will manifest between researcher and participant in different spaces. Site may be particularly important in research with (learning disabled) children, as research location is intertwined with the level of caregiving required from the researcher, and the sorts of surveillance the research engagement may be subject to. This paper draws on research with learning disabled 6–16-year olds that took place in homes, schools and the outdoors, in a variety of microgeographical locations from bedrooms to nature reserves. This paper reflects on the challenges, including the very ‘worst’ research moments, occurring in the different research environments. Whilst the research was carried out with learning disabled children and young people, the discussion has implications for research with non-disabled children and ‘vulnerable’ participants more broadly.

Success in the workplace: From the voice of (dis)abled to the voice of enabled

MARSAY, Gloria
2014

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The intention of this article is twofold; first to encourage a shift in seeing ‘the disabled’not as people with disabilities but rather as people with unique abilities. Secondly, toexplore ways of facilitating gainful employment for these uniquely abled people. The termdisability is examined against a backdrop of definitions including the definition postulatedby the International Classification of Functioning. In this article, the life experiences of apurposive sample of people with (dis)abilities who have been successful in the world ofwork are explored. A narrative approach gives voice to their experiences. Quotes from theparticipants’ responses are used to illustrate the common themes that emerged relating totheir experiences. These themes are resonated against a backdrop of relevant literature. Ifdisabled people are enabled to recognize and use their unique abilities, as well as developvarious self-determination skills, imagine the endless possibilities which could arise for themand society in general.

Disability and masculinity in South African autosomatography

LIPENGA, Ken J
2014

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This article examines the representation of disability by disabled black South African men as portrayed in two texts from the autosomatography genre, which encompasses first-person narratives of illness and disability. Drawing on extracts from Musa E. Zulu’s The language of me and William Zulu’s Spring will come, the article argues that physical disability affects heteronormative concepts of masculinity by altering the body, which is the primary referent for the construction and performance of hegemonic masculinity. In ableist contexts, the male disabled body may be accorded labels of asexuality. This article therefore reveals how male characters with disabilities reconstruct the male self by both reintegrating themselves within the dominant grid of masculinity and reformulating some of the tenets of hegemonic masculinity.

Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

ALDERSEY, Heather M
2012

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When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

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