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“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.

‘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.

‘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.

Engaging girls and women with disabilities in the global South: Beyond cultural and geopolitical generalizations

NGUYEN, Xuan Thuy
STIENSTRA, Deborah
2021

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This article invites readers to engage with girls and women with disabilities in the global South. It challenges the epistemological domination of Western disability studies in Southern bodies and contexts, and provides one specific way to read the intersection between disability, gender, and ethnicity in the context of Vietnam. Drawing on the politics of engagement developed within the Transforming Disability Knowledge, Research, and Activism project, we argue for recognizing the lingering impacts of colonialism and imperialism in producing disability and impairment in the South, while suggesting new ways of engaging with disabled girls and women through the use of inclusive, decolonial, and participatory methods.

COVID-19 in South Asia: State practices, responses and the experiences of persons with disability within the region

MEHROTRA, Nilika
SOLDATIC, Karen
2021

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An introduction into South Asia looking at the pandemic who people are struggling with in 2020. The DGS has aimed to first identify and acknowledge the diversity of disability experiences in the Global South and, second, make these experiences readily available and accessible to disabled people and their communities in the regions where the contributors themselves are from. In fact, in undertaking this special issue as editors, we would like to recognize the incredible persistence of our contributors to continue to work with us throughout the development of the papers, alongside acknowledging the many original contributors who were also unable to accept our invitation to participate because of the covid19 pandemic impacts upon every aspect of their lives.

Emergent Disability voices on Social Media during COVID -19 times

MEHROTRA, Nilika
2021

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Persons with disabilities are invisible and almost silent in the Indian media. This paper examines the emergence of articulate expressions of persons with disabilities (pwd) in the social media over the months March to June 2020 during COVID Lockdown. While technology has been seen as a great leveller for persons with disabilities, the digital divide, however, remains very real for masses of disabled persons, whereby it is largely the educated middle class who have access to internet facilities and presence on social media. This paper draws from observation and analysis of posts on Facebook by different categories of persons with disabilities. There appear to be a number of discourses emerging and imageries running almost parallel. Accessibility and support appear to be very important issues especially in terms of access to domestic workers, regular medical checkups, and procuring daily provisions as well as access to online teaching. On the other hand, little concern is being paid to the huge humanitarian crisis of returnee workers from cities to villages. Interestingly, disabled persons appeared more connected, participating in discussions and Webinars and voicing out their experiences with greater clarity and also analysing the COVID situation through Disability Studies (DS) perspectives.

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.

Mental health of LGBTIQ+ people in India during the COVID 19 pandemic: risks, access, lessons

TENNETI, Suchaita
2021

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The COVID-19 pandemic and the associated containment measures have resulted in a mental health crisis globally. Marginalised populations have been disproportionately affected during the pandemic with an aggravation of existing inequalities, and this has increased the risks to their mental health. The LGBTIQ+ population is among those marginalised whose lives have been rendered even more precarious than before by the pandemic. This paper explores some of the main risks to the mental health of LGBTIQ+ people in India, the advice being given to them by mental health professionals and activists, and need for queer revisionings of uncertainty, the concept of a future and individualism.

Psychosocial Consequences of COVID-19 on Persons with Visual Impairments

NAYAR, Mahima
JUVVA, Srilatha
LAKSHMAN, Chitra
2021

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The ongoing pandemic situation has disrupted lives globally. These disruptions are embodied in gender, social location, ethnicity and in the body. Public health facilities, accessibility of urban infrastructure, support services for persons with disability, educational accessibility in cities prior to the pandemic have influenced the manner in which disabled people are able to adapt to the current situation. This paper presents the experiences of young people living with visual impairments who reside in an urban low-income community in India. It explores the unique challenges such as the further reduction in accessibility to health and educational facilities that they are facing and the manner in which their carefully structured everyday lives have changed. The narratives also describe the manner in which they are coping with the public health disaster in addition to preparing for the new ‘norms’ that people living with visual impairments are required to navigate as an outcome of the pandemic. The paper gives voice to their needs and requirements in this situation, and in turn, aims to inform policy responses through first person accounts. 

Making themselves heard: deaf people in India during the global COVID-19 pandemic

GULYANI, Ritika
2021

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The onset of the sudden and global pandemic, COVID-19, has forced all of us to change our ways of living and interacting with the outside world. Additionally, a lot of restrictions on movement mandated by governments have also been issued in the past few months. In the context of India, a nationwide lockdown was in place from midmarch till the end of May. These lock-downs have had serious consequences for various segments of the population across the country, especially, those on the margins, who are vulnerable and/or in a minority. One such segment has been the disabled population. This paper, with the help of narratives, addresses the challenges faced by the deaf population during the COVID crisis and the ways in which they have negotiated these. There has been a big void in the dissemination of information to the deaf, owing to the fact that the majority of information from official sources has not been translated into sign language. More so, in times when information is the key to maintaining proper health care, this is a big lacuna. Additionally, the paper will also talk about the role of technology as well as of deaf groups in the lives of deaf people, and how it has proved to be very helpful to not just spread proper awareness about the pandemic, but also in trying to build up a movement in trying to recognise Indian Sign Language as the 23rd Official Language of India. 

COVID-19 and State Responses in Pakistan’s Policy towards Persons with Disabilities

ORAKZAI, Saira Bano
2021

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The outbreak of COVID-19 has initiated debate in the world about the response mechanism towards different communities in society. Pandemics have a long history in human societies, changing not only human behavior but also world politics. The Russian flu of 1889, the Spanish flu of 1918, the polio pandemic of 1949, H2N2 virus, 1956, HIV/AIDS 1981, Swine flu 2001, SARS 2002 among others have caused millions of deaths in contemporary recorded history. This paper examines Pakistan’s response mechanisms for persons with disabilities through an analysis of relevant policy documents, UN guidelines and content analysis of key speeches by the Prime Minister Imran Khan, interviews and initiatives taken by the government. The paper concludes that in the absence of any definitive policy for persons with disabilities during COVID19, there has been a general ignorance and apathy towards the way persons with disabilities were given care or in dealing with them during the lockdown situation. As the COVID-19 second wave started in different parts of the world, it is time for the government to take substantive measures to ease problems faced by persons with disabilities. 

COVID-19 from the margins: Gendered-Disability experiences in Sri Lanka

KANDASAMY, Niro
PERERA, Binendri
SOLDATIC, Karen
2021

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Recent research in the global South has highlighted that persons with disabilities are a vulnerable category of persons during the COVID19 outbreak. This paper provides some preliminary insights into Sri Lankan government responses to the outbreak, which, as we will be highlighting, take an ableist approach that further neglect the interests of persons with disabilities while entrenching disability dependencies on informal structures of familial and household support and in turn, increasing their marginality and economic insecurity. The COVID-19 outbreak hit Sri Lanka during a period of political turmoil – national Parliament had been dissolved on 3 March 2020 with elections initially called for 25 April 2020, six months prior to the official end of the Government’s elected term. Drawing upon rapid interview narratives, we present the lived experiences of two women with disabilities and the unique challenges they are facing during the COVID-19 pandemic. As we write this paper in September 2020, we acknowledge that the longer-term impacts of COVID-19 will not become immediately visible, particularly for disabled people from ethno-religious minority groups, including those residing within the former conflict zones.

COVID 19 in Nepal: The Impact on Indigenous Peoples and Persons with Disabilities

GURUNG, Pratima
2021

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The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations. 

Invisible to the Law: COVID-19 and the legal consciousness of persons with disabilities in Bangladesh

MIZAN, Arpeeta Shams
2021

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Despite disability rights being recognized through formal legislation in Bangladesh, the rights of persons with disabilities are still not effectively ensured. State interventions during the pandemic have not sufficiently accommodated the rights of Persons with Disabilities. Pre-existing social prejudices have added to their plight. Due to social prejudice and myriad access to justice challenges, persons with disabilities in Bangladesh face negative attitudes when it comes to exercising their legal rights. The article uses primary data obtained through qualitative interviews and secondary sources to illustrate how the Covid19 pandemic has reinforced structural discriminations and increased the vulnerability of persons with disabilities

Life Becomes Harder: Intersectional Feminist Lens to Dis/abled Experience of Women in Afghanistan during Covid 19 Pandemic and Post Covid Development Context

SHAJAHAN, Sharin
2021

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More than 40 years of war, ethnic conflict, violence and poverty have made Afghanistan a country where at least one in five live with a serious physical, sensory, intellectual, or psychosocial disability. Women with disabilities in Afghanistan are considered to be ‘doubly stigmatized’ due to gender inequality and disability stigmatization, and are often hidden from the social and political aspects of life. Although in the post-Taliban era, development interventions backed by international aid have been designed to include women with disabilities, their intersectionalities cutting across class, ethnicity, region, different types of impairments and other positionalities have not been explored to address different needs, barriers and inequalities across various regions. In this context, the Covid 19 crisis has made the lives of Afghan women with disabilities harder due to gender discrimination, stigma and shame, unemployment, lack of mobility, lack of awareness, and insufficient institutional support and infrastructure coupled with widespread feelings of insecurity resulting from conflict and terrorist attacks. Based on both primary and secondary data, this paper will shed a feminist intersectional insight into the plight of women with dis/abled experience during the Covid 19 pandemic in the complex political and social terrain of Afghanistan. The paper will also explore visions for designing interventions aimed at integrating women with disabilities in post Covid development plans.

Considering age and disability in the Rohingya response

ASSESSMENT CAPACITIES PROJECT (ACAPS)
February 2021

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This report evaluates existing data on the Rohingya refugee response. It highlights the key challenges and constraints faced by persons with disabilities (PwD) and older people in accessing essential services and explores how COVID-19 and related containment and risk mitigation measures have affected humanitarian programming for PwD and older people. It also identifies information gaps and challenges linked to disability prevalence in the camps

 

This secondary data review focuses on the Rohingya refugee camps in Cox’s Bazar and combines publicly available secondary data with 11 key informant interviews conducted with age and disability experts working on the humanitarian response. The interviews took place between 1 July–30 August 2020 with experts from the UN, national NGOs, INGOs, and the International Red Cross and Red Crescent Movement.  

A report on the social protection response to COVID-19 for persons with disabilities, South Asian Region

BALASUBRAMANIAN, Meenakshi
INTERNATIONAL DISABILITY ALLIANCE (IDA)
CENTRE FOR INCLUSIVE POLICY (CIP)
February 2021

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The purpose of this report is to provide an overview of the social protection response and recovery initiatives by countries in the South Asian Region towards people with disabilities from the perspective of DPOs. The region is characterised by a high population with majority of states falling under low and middle-income status, high levels of economic informality, low social protection coverage, intersectional marginalisation due to gender, ethnicity and caste, and a high concentration of migrant population. The COVID-19 crisis has magnified vulnerabilities in the region and furthered the marginalisation of persons with disabilities
 

Traffic crash injuries and disabilities : The burden on Indian society

WORLD BANK
February 2021

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Road crashes endanger the lives and livelihoods of millions of road users globally and in India.  The risk of a road crash in low-income countries is three times higher than compared to that in high-income countries. Not only does it lead to untold and unaccounted for suffering and loss for victims and their families, but also, it drains the GDP of countries by claiming millions of economically productive young lives6. While it is recognized that RTIs affect the developed and developing world in different ways, it also impacts poor households and disadvantaged sections of the population within developing countries differently. World Bank commissioned a survey-based assessment study in association with the Save LIFE Foundation (SLF) to determine such differential impacts more objectively in India. This study aims to capture the socioeconomic realities and nuances of road crashes at the sub-national level in India. It seeks to document inter-linkages between poverty, inequalities, road users, and road crash outcomes by analyzing data from four States in India, i.e., Uttar Pradesh, Bihar ,Tamil Nadu and Maharashtra. The four states have been selected on the basis of several criteria including demographic and geographical representation, magnitude of fatality burden and socio-economic parameters such as economic growth, poverty rate and social welfare. 

Impact of Visual Impairment and Correction on Vision-Related Quality of Life: Comparing People with Different Levels of Visual Acuity in Indonesia

WIDAGDO, T M M
RAPPUN, Y
GANDRUNG, A V
WIBOWO, E
2021

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Purpose: This study assessed the extent to which visual impairment impacts on vision-related quality of life in Indonesia, by comparing four groups of people: those with 1) normal vision, 2) corrected visual impairment, 3) uncorrected visual impairment, and 4) blindness.

 

Method: Purposive sampling was used. There were 162 respondents, between 21 and 86 years of age. Participants with normal vision and blindness were community-dwellers in Yogyakarta, Indonesia. Those with corrected and uncorrected visual impairment were recruited from an eye clinic. This cross- sectional study used NEI VFQ-25 to assess vision-related quality of life. The total scores and 11 NEI VFQ-25 subscales scores of four respondent groups were analysed using ANOVA, followed by post-hoc analyses to reveal between group differences.

 

Results: There was a significant difference in the NEI VFQ-25 total scores among the four respondent groups. Respondents with normal vision had the highest score and those with blindness had the lowest. There were also significant differences among the four groups for the 11 subscales. Post-hoc analyses revealed no significant difference between respondents with normal vision and corrected visual impairment in the total and 9 NEI VFQ-25 subscales. Respondents with uncorrected visual impairment and blindness had significantly lower vision- related quality of life compared to those with normal vision or corrected visual impairment in the total and 5 NEI VFQ-25 subscales, indicating that visual impairment decreases vision-related quality of life.

 

Conclusion: Visual impairment has a detrimental impact on a person’s vision- related quality of life. The negative impact of visual impairment can be minimised by correction. Failure to correct visual impairment leads to significantly lowervision-related quality of life.

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