Abstract

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.


Introduction

As soon as it was apparent that the COVID-19 pandemic was spreading globally, negative impacts were predicted for disabled people 1, with particular concern about middle- and lower-income countries where disability inclusion across sectors is generally weak (Ahmad et al., 2020; Meaney-Davis et al., 2020; Banks et al., 2021; Boyle et al., 2020; Rohwerder, 2020; Yap et al., 2020). Key organisations quickly produced guidelines to avoid the anticipated exacerbation of disadvantage for disabled people (IDA, 2020; IDA and IDDC, 2020; ILO, 2020; Inclusion International, 2020; OHCHR, 2020; WHO, 2020a, WHO, 2020b; Humanity and Inclusion 2020a).

The purpose of our study was to understand the realities of the evolving COVID-19 pandemic from the perspectives of disabled people and their families in low- and middle-income countries. It was undertaken collaboratively by teams of international and local partners working together, including Organisations of Persons with Disabilities (OPDs). 2 In this paper, we present the findings from Nepal, Bangladesh, Kenya, Nigeria, and Uganda. (For further information about this research that includes country-specific findings see Rohwerder et al., 2021a, Wickenden et al., 2021a; Rohwerder et al., 2021b; Wickenden et al., 2021b; Thompson et al., 2021; Shaw et al, 2021.)

Background to COVID-19 disability research in middle- and low-income settings

Emerging evidence suggests that COVID-19 is deepening pre-existing inequalities, including those faced by people with disabilities (UN, 2020), who have experienced various rights violations, and been disproportionality affected by the health, economic and social impacts of the pandemic (COVID-19 DRM, 2020). In relation to health, some people with disabilities are more at risk of catching and dying from COVID-19 - some due to increased clinical vulnerability and/or the lack of accessible information about prevention (e.g. sign language interpretation, online or easy-to-read information), and some because care and support needs makes it harder to socially distance (Webster, 2020; Humanity and Inclusion, 2020a; Goyal et al., 2020; COVID-19 DRM, 2020). Research in Bangladesh and Kenya involving 312 people with physical, intellectual, visual, hearing, psychosocial, or multiple impairments found that 45% of respondents were not getting the support required to live safely and independently as a result of COVID-19 restrictions including lockdowns, movement restrictions, and physical distancing measures (i2i, 2020). A Nepali survey involving 686 people with different disabilities found that 32% were not getting vital services usually provided by caregivers due to the lockdown (Humanity and Inclusion 2020b). Barriers to healthcare have also been exacerbated (COVID-19 DRM, 2020). In Jordan, for example, "88% of [256] persons with a physical impairment and with current medical needs reported that they could not get to hospital for regular checks or additional medical needs" (Humanity and Inclusion 2020a, p.7).

The move to online learning has increased education barriers for many disabled children as their access needs have generally not been considered in the move to remote formats (Goyal et al., 2020; COVID-19 DRM, 2020). An Indian survey with 3,627 people, including students with disabilities, parents and teachers, found that 43% of children with disabilities were planning to drop out of studies due to the lack of accommodations they experienced in online education, and many more were struggling to cope (Nagari, 2020). Related to economic impacts, the Nepali survey found that lockdowns had negatively affected personal and family income for 49% and 76% of respondents, respectively, and over 40% of respondents faced food insecurity (Humanity and Inclusion, 2020b). 95% of 73 youths with disabilities surveyed in the Philippines needed urgent financial aid; 74% were worried about insufficient food supplies, and 69% about loss of employment or income (Humanity and Inclusion, 2020a). Women with disabilities in India reported difficulties accessing work and livelihoods and food insecurity (Goyal et al., 2020). In Bangladesh and Kenya, 80% and 68% of 312 people with disabilities, respectively, reported being unable to work and more than 85% and 65% felt insecure in their current job (i2i, 2020). 40 representatives from different OPDs in Uganda and 91 respondents from different OPDs in Bangladesh were interviewed and reported losing around 65% of their monthly household income since the outbreak. Some also reported skipping meals, although this was not quantified (Ahmed et al., 2020; Christensen, 2020a; Christensen, 2020b).

Additionally, there are reports that pre-existing disability related stigmatisation and discrimination have increased during the pandemic (Humanity and Inclusion, 2020a; UN, 2020). Public restrictions, household isolation, and disruption of community life, services, and social support have contributed to increased violence and protection risks for people with disabilities and their caregivers, especially women and girls (Christensen, 2020a; COVID-19 DRM, 2020; Goyal et al., 2020; Humanity and Inclusion 2020a; ; Stakeholder group of persons with disability for sustainable development, 2020). WEI, 2020). In Cambodia, 40% of 87 respondents from OPDs felt the risk of violence had increased (Christensen, 2020b). Mental health has been severely impacted by enforced isolation (COVID-19 DRM, 2020; Sale et al., 2020), with research in India identifying decreased emotional wellbeing and mental health of women with disabilities as a result of loneliness, isolation, and increased stress (Goyal et al., 2020).

In summary, the predominantly survey-based research described above suggests that the global COVID-19 pandemic has led to various negative consequences for disabled people, as expected. However, there is limited in-depth qualitative evidence about how people with disabilities in low- and middle-income countries have experienced the evolving COVID-19 situation. Our study aimed to address this gap.

Research process and methodologies

The research design, which was informed by the UN Convention on the Rights of Persons with Disabilities (UNCRPD) (UN, 2006) principles and involved qualitative methodologies deemed most appropriate for generating subjective knowledge from within specific contexts (Tracy, 2013, p.4; Braun and Clarke, 2012, p.24; Hammett et al., 2015, p.130). We chose narrative interviews because people naturally communicate by telling stories and this method is accessible regardless of education level, language competence or communication mode (Jovchelovitch & Bauer, 2000). Being prompted to recollect experiences as stories assists participants to make sense of events, and, importantly, as a 'teller-focused' method (Hydén, 2014), reveals what matters to them, rather than using pre-determined questions to investigate topics that may not concern them. Each participant was interviewed twice to provide an additional processual lens or insight on how they interpreted and responded as the pandemic progressed over time. Finally, pragmatically, conducting virtual narrative interviews was possible (online or by phone) (Holt, 2010), making research participation safe for the interviewer and interviewee during the pandemic.

In Bangladesh, Kenya, Nigeria and Uganda we were already collaborating with four local researchers, using participatory approaches on the Inclusion Works (IW) programme. One of these team members is disabled (Uganda). They took on additional roles conducting interviews for this current project. We recruited new team-members in Nepal and Bangladesh, including two inexperienced disabled researchers who were paired with more experienced interviewers who supported and mentored them. The IDS team developed the research processes and materials, provided training and supervisory accompaniment for the local researchers, and led the analysis process. Ethics approval for this work was obtained from our institutional ethics committee.

With support from in-country consortium partners, and Organisations of People with Disabilities (OPDs) participants were recruited from populations we were already working with: jobseekers in the four IW countries, and in Bangladesh and Nepal Disability Inclusive Development (DID) livelihood programmes with more marginalised disabled populations, such as youth with intellectual disabilities, deaf-blindness, and multiple and complex disabilities. Recruitment was purposive to ensure a gender-balance, a range of impairment groups and ages, rural and urban locations, and the inclusion of some parents /carers when relevant (see Table 1 in appendix). Participants were over 18 and able to connect with the interviewers by phone or internet, with appropriate technical access and personal support (including sign language or tactile interpreters and or other assistance) as necessary.

Holt (2010) argues that phone (and by extension all virtual) interviewing need not be second-best for participants familiar with the communication medium. However, we perceived heightened ethical risks compared with face-to-face interviewing, such as the additional difficulties of reading dynamics or responding supportively if strong emotions arose. To mitigate these risks the research process involved three calls with each interviewee, who did not know the interviewers, during the first interview round. Firstly, the research purpose and process were explained, including consent, anonymisation, the right to withdraw, and the analysis and reporting plans. Participants were not asked to give verbal consent until the second call. This gave them space to decide whether to participate without being pressured. Participant's access and communication support needs (e.g., braille documents, sign language interpretation or sensory communication support) were also discussed at this time, which enabled necessary accommodations to be organised for the interview. Researcher training included input on dealing with sensitive issues and communication needs for different impairment groups. We encouraged researchers to use online video platforms (in preference to just audio), when possible, to aid relationship building and effective communication This was particularly important for some, such as the intellectually disabled participants, who may rely more on body language, gestures, or facial expressions. However, the choice depended on participants' preferences, functional skills and access to technology.

The interview was conducted in the second call, after verbal consent had been obtained. After an initial introduction, a narrative interview proceeded by asking one very general and open question (Jovchelovitch and Bauer, 2000). The topic guide was developed following this model by the team. Participants were asked to share how the COVID-19 situation had developed for them and impacted their lives. The interviewers reassured them that they could share experiences in any way they liked but encouraged the story-form by suggesting they start at the beginning, when they first heard about the pandemic, and then relate what happened afterwards up to the present. Prompts and follow-up questions probed for specific examples, and expansion on the key aspects that interviewees chose to talk about. For example: 'you told me about…..Can you tell me more about that?'

A third call was made later to ensure that the interviewee was feeling OK and still happy to be involved. The second interview, which was conducted by the same interviewer about two months later, followed a similar process, and as anticipated we found greater openness and narrative flow due to established relations between the researchers and participants.

The interviewers in each country were, in most cases, people with whom we were already working on other aspects of the programmes, so they had received extensive training from us on inclusive participatory and action orientated research methods. In Nepal and Bangladesh, the additional inexperienced researchers who were recruited were given similar training and support from their more experienced local colleagues. In all cases the local researchers spoke the main local languages and the interviews were undertaken in these languages (Swahili, Luganda, Nepali, and Bangladeshi) or in English, depending on the preference of the interviewee. The interviewers wrote notes in these languages as well as taking audio recordings either on a digital recorder or phone and then translated and transcribed them into English.

The interviews lasted between 30 and 60 minutes and a variety of platforms were used depending on the choice of the interviewee, the availability of equipment and the internet connection. Most interviews were conducted by phone (including WhatsApp), and some were on video conferencing platforms such as Zoom. Data connection costs were reimbursed as needed.

In all countries, additional training on the narrative interview approach was provided to the interviewers during several online participatory sessions. Additional support to the in-country researchers was provided during the data collection period, with each having a junior and senior mentor from the UK research team to link with at any time. Check-in sessions were provided, as well as introductory training on analysis after the first round of interviews before the main analysis sessions at the end of data collection.

Interviewers were encouraged to keep a reflexive diary and were asked for summary reflections both during online videoconference support sessions and in writing. In Nepal and Bangladesh, where there were two interviewers in each team, discussion and mutual support was encouraged.

We had initially anticipated conducting a participatory thematic analysis process face-to-face in-country with the researchers and some participants. However, this was not possible due to ongoing COVID-19 restrictions (within countries and international travel). Instead, we ran a series of collective analysis sessions online, involving the IDS team and in-country researchers. For example, after some thematic analysis training and an initial reading of the first interviews they conducted, the interviewers shared selected narratives. The transcripts were also read by the UK based researchers, who each focused on one country. During the online analysis sessions, UK and in-country researchers individually generated themes on physical Post-it notes. The themes were shared verbally, and documented in PowerPoint slides and Word documents, and compared across countries. We then clustered them (using shared PowerPoint slides, and online tools such as Jamboard) to produce a first-level analysis. We also synthesised overarching themes such as gender, impairment specific aspects, emotions and economic/financial impacts. The IDS team-members each analysed the remaining interviews from all the countries using one of these lenses. After the in-country researchers had conducted the second interviews we repeated the process. This generated some additional themes and comparison was made with the detailed first round themes. This validated previous themes and suggested data saturation, as there were many similar points made, but there were also changes in impacts and feelings, and some additional overarching themes. Next we explored the linkages between themes to produce a conceptual map using Jamboard. Collectively generating overarching meanings and interpretations, ensured that this synthesis is grounded in local perspectives.

Finally, we held joint online participant validation and sharing events for interviewees in pairs of countries (e.g. Bangladesh and Nepal and Uganda and Kenya together). Some interviewees had expressed an interest in meeting other participants and hearing about their experiences and this was the main aim of the event. We had anticipated and indeed found that an online process like this is complex. It sometimes involved translation between 3 languages, as well the different access needs for people with intellectual impairments, deaf-blindness and deafness to be carefully considered and accommodated. However, feedback from these meetings was very positive despite the challenges. Participants enjoyed hearing about each other's experiences and generated interesting questions that were addressed in the meeting. They also validated our thematic analysis and elaborated on some of the data we already had.

Results

Participants

Of the 75 participants, 30 were from Bangladesh (drawn from 2 different programmes), 15 from Nepal, and 10 from each of Kenya, Nigeria and Uganda. 38 were male and 37 were female. 10 participants had a physical impairment, 7 had visual impairments, 3 had hearing impairments, 16 had intellectual impairments and 6 had psychosocial impairments. A further 12 participants had other impairments and 21 had multiple impairments. 34 of them were under 29 years old, 38 were 30 to 49 years old and 3 over 50 years old. In terms of education, 5 participants had no education, 12 had primary level and another 12 had secondary level education. 41 had tertiary level education, and the education of 5 of the participants was classified as other. 26 participants described themselves as employed or working, while 25 were unemployed. A further 20 described themselves as students and the occupation of 4 of the participants was classified as other. The majority of participants (49) were single. 24 participants were married. A further 2 participants described their marital status outside of these categories. 38 were from urban areas, 27 from rural areas and 10 from peri-urban areas. The majority of participants (42) had others depending on them, while 11 participants depended on others. 22 participants said they neither relied on others nor have others relying on them and for 2 people the response was unclear. 69 out of 75 participants were happy and available to be interviewed twice. Only 6 participants declined or were unavailable for an interview for the second round. Table 1 in the appendix summarises the participants' characteristics.

Thematic Findings

In this paper we present the key themes that emerged, combining data across the 5 countries, as the analysis revealed substantial consensus and relatively little that was country specific. Two different types of themes emerged: overarching 'subjective' experience themes, and more 'concrete' material impacts. 3

The overarching 'subjective' experience themes emerged consistently across countries, genders, impairment groups and ages. Broadly, they reflected the participants' feelings during the initial COVID-19 crisis and its continuation over several months. Overall, strong themes of de-stabilisation, disorientation and uncertainty were experienced due to the extraordinary situation, with subthemes of shock, confusion, fear, loss, stress, conflict, anxiety, despair and depression in various forms. These subjective emotions arose in response to the loss of the stability of a usual 'known life', the 'old normal', the pandemic risks and lockdown restrictions, and the uncertain journey towards a 'new normal'. These themes were sometimes expressed rather indirectly through the use of metaphors during storytelling, so the underlying feelings were inferred by team-members and understandings were jointly refined during analysis. We interpreted these subjective emotions as 'floating' above and weaving through the more 'concrete' or material themes participants experienced.

The 'concrete' (material) themes illustrating the more tangible impacts fall into two main types, with links and overlaps between them. Firstly, there are individual (and intersecting) identity focussed experiences related to gender and disability status. Whilst recognising that the experience of disability is not homogenous, and that people's lives are not necessarily defined by their impairment, we did identify some common themes which were specific to impairment or seemed more broadly disability related. Secondly, there are themes that are broadly connected with structural/systemic factors including government and other agencies' responses (e.g. emergency relief) and about access to services and economic/financial impact. To a large extent, these echo the predictions of disability focussed agencies and allies and earlier research findings reported above.

We have structured our discussion in relation to the subjective experience themes and sub-themes. Emotional impacts are crucial to understand, as they are often barriers or enablers of agency and positive change (e.g. hopelessness and anger constrain change action, see Burns et al., 2013). These emotional affects often resulted from the concrete impacts experienced. We therefore consider some emergent 'concrete' themes such as the economic and disability-specific or impairment-related impacts alongside the emotions they are linked to. However, we focus on the gender and structural/systemic impacts in separate sections.

There were insights on the unfolding and progression of the pandemic over time, both from the interview transcripts, and the interviewers' reflections on the similarities and differences between responses during the first and second interviews. Indeed, at the time of writing the pandemic is still continuing, so during the more recent validation meetings, participants were still experiencing some of the same responses and impacts that they had described about 4-6 months earlier during the main data collection. Several of the participants in their second interviews expressed concern that their situation may get worse in the future due to a combination of subsequent waves of COVID-19 (and the national responses) and their dwindling resources. Our reflection on the data prompted us to offer some theoretical lenses on the data, which are presented in the discussion section below.

Key subjective theme: Destabilisation, disorientation and uncertainty

Of course, worldwide many people have gone through similar emotional journeys during the COVID-19 period, with dramatic life changes, abrupt suspension of the 'old normal', and the need to adapt. However, we were interested in the scale, strength and extent of the emotional affect and concrete impacts on disabled participants, as we anticipated that prior precarity would mean they were more likely to be tipped into crisis. We consider here how de-stabilisation, disorientation and uncertainty manifested emotionally in the data, and the progression of feelings as the pandemic evolved. 4 These are grounded in the discussion by the material themes underlying them, as explained above. These overarching feelings of destabilisation, disorientation and uncertainty were expressed through a number of sub-themes:

Shock, disorientation and fear

Initially, many participants experienced intense shock as their usual life was completely disrupted, as well as confusion and uncertainty about what would happen to them.

'First of all, COVID is totally a new thing. We are not able to identify what is myth and what is reality' (Nepal, parent of child with II)

'what will happen to all my set goals and dreams' (Uganda, woman, Phys)

The trauma was extreme enough to be predicted to leave permanent scars on some individual's lives. The disorientation was followed swiftly by various manifestations of fear, which seemed existential at the beginning.

'it was so scary …… it was like this is now a death sentence. It was like we would die, everyone is going to die' (Kenya, woman, PS)

However, this general panic was soon replaced by fear of both the virus as an entity and the safety measures. Various individuals also expressed fear of authorities (police and doctors) and of increased gender-based violence in their communities (women) (see gender impacts section below).

Many, unsurprisingly, reported extreme fear of contracting the virus, some using war like metaphors such as 'the enemy'. Some also reported others being afraid of them as disabled people, which was exacerbated for those needing physical support due to visual or physical impairments, especially those with deaf-blindness. These impairment-specific challenges arose because it was harder to find people to guide or support them, because guiders (also known as support aides or assistants) were anxious about close contact, and those needing assistance also worried about others touching them. Respondents with physical disabilities reported fewer transport options, not only due to travel restrictions, increased costs and lack of accessible alternatives, but also because they were refused transport, because of an assumption that disabled people are more infection prone, as well local superstitions (e.g. witchcraft in Uganda).

'when I asked to be shown a hand-washing facility in my community, people whispered that once I touched it, they will not use it again.' (Uganda, woman, Phys)

However, the prejudiced assumption that they weren't following safety measures seemed worse for those with intellectual impairments.

'really people view me from an angle that I am brainless and can't do much …… Now with COVID -19 …. it even worsened …. people could not wish to even move on the same lane with me ……' (Bangladesh, woman, II & Phys)

These are clearly disability specific and impairment related impacts.

Exacerbated discrimination

'the pain in my heart' (Uganda, woman, Phys)

The concrete experience of exacerbated negative attitudes since COVID-19 was widely reported by participants with a range of impairment types and included mocking in the street (particularly in Bangladesh). Many participants said they had experienced increased isolation or being ostracised by neighbours or community-members.

'The community around me is one which has never regarded a person with disabilities to be human and so when this COVID-19 came up, persons with disabilities were viewed from the wrong side of the coin ….' (Uganda, woman, Phys)

Some felt painfully rejected by this:

'I saw something that I had never seen when people were isolating me including my siblings - this even brought tears in my eyes'. (Uganda, woman, Phys)

However, some felt that the social disregard reflected the usual, persistent negative discrimination based on impairments, rather than being worse for COVID-19.

'I did not face any different treatment from my family or others. But as always I [was] neglected and faced challenges due to my dwarfism.' (Bangladesh, man, Phys)

Loss - of opportunities, freedom and social relations: exacerbated stress

Loss was a predominant theme across the dataset at individual, family, community and societal levels. This manifested as the loss of study, training and work opportunities, extinguishing hopes and permanently destroying future prospects:

'I really felt every other dream of mine had been buried. I left school (residential college) for home and up to now I don't know what next' (Uganda, woman, Phys)

There was also an obvious loss of freedom due to lockdown restrictions. Respondents understood the protection to be imperative, but experienced staying home as suffocating.

'I cannot take breath due to the suffocation and stuck at home' (Bangladesh, woman, II)

Some felt 'boxed in' (Nigeria, woman, Phys) or 'imprisoned' (Bangladesh, man, M) and forced to stay home when others continued with their lives outside the house. This was especially felt by those with intellectual impairments. The imposed loneliness from social restrictions, and the consequent loss of contact with friends, family, neighbours and colleagues was a strongly recurring theme.

Lockdown was experienced as exacerbating mental and emotional stress, limiting relational coping strategies, as people lost access to their social networks.

'You are always low. Before we would always meet with friends for a cup of coffee and talk. But now this is not there' (Kenya, woman, PS)

As jobs or other opportunities moved online, many people struggled as they could not afford the necessary technology or the cost of getting online (sometimes known as 'airtime'). Most participants accessed the internet by phone on a pay-as-you-go basis, not through a computer. This contributed to feelings of isolation, as it was hard to stay in touch with friends and OPD members.

Extreme anxiety, despair and depression from the economic impacts

'Some people could not get food to eat. Some lost their employment. They face difficulty to join their hand and mouth' (Nepal, man, II)

There were major negative economic impacts (see concrete theme) for the interviewees across all five countries, and, like many others globally, some fell into (deeper) poverty as they or their families lost jobs, businesses, or other regular income. Therefore, the acute fear of the virus itself was inevitably taken over by fear of hunger. The risk dilemma shifted between adhering to COVID-19 protection measures to the need to earn to survive. Medical costs, particularly for those with ongoing needs (e.g. those with psycho-social impairments needing drugs), and rent were also major concerns. To survive, interviewees relied mainly on their savings, selling assets, support from family or friends, or taking loans, which generated further burdens. Those living in financial precarity prior to the outbreak were especially affected by the economic impacts, such as those previously unemployed. This includes many disabled people due to existing employment barriers, as well as single parents and those with family dependants.

'My family suffered a lot during the covid lock down and we faced lot of challenges and difficulties due to the financial unstable condition…. the economic condition of my family totally broke down.' (Bangladesh, man, M)

'[COVID-19] majorly affected finances.' (Kenya, woman, PS)

'Life has shifted. No money. It has been a struggle.' (Kenya, woman, VI)

'Since February this year [2020], I have not received any salary. My financial stress started then and has continued to worsen by the day. I am now unable to meet basic personal needs and other responsibilities.' (Nigeria, woman, Alb)

'At this time of the epidemic, no one could work, so we could not afford food, rent, medical treatment properly.' (Bangladesh, woman, II)

In response, several suggested that

'Having two or more sources of income will ensure that one is not left stranded at any time. It is a good idea to have one of such sources as a job or business that cannot easily be locked down.' (Nigeria, man, Alb)

and

'it has taught me to diversify and have some other sort of skills to supplement on my survival needs' (Uganda, man, VI)

In general, the respondents felt that they were worse off than others in their communities. Most reported reduced food consumption and/or hunger with insufficient money to pay for regular food, often exacerbated by increased costs.

'Meals were no longer guaranteed' (Nigeria, man, VI)

'I slept hungry.' (Kenya, woman, PS)

Various interviewees described extreme stress, anxiety, despair and depression as they reached financial crisis points and struggled to meet basic food needs.

'my end as a bread winner, it took me moments of thoughts, stress and even depression' (Uganda, man, VI)

Feelings of hopelessness and helplessness with nowhere to turn were strongly evidenced, with increased thoughts of suicide reported. Recourse to prayer seemed the only option for some.

People with disabilities were left feeling guilty and sad for becoming more dependant than before or for not being able to provide for their dependants.

'I started seeing the narrow path between keeping safe and the welfare of my family, yet as a bread winner, my wife ….asked me every morning what the children would eat' (Uganda, man, Alb)

The combination of income loss and lockdown restrictions caused family tensions, which are further explored through a gender lens.

Gender impacts – responsibilities, conflict, violence and vulnerability

There were some specific gendered experiences in all the countries, which resonated across contexts. However, before discussing contrasts, it is notable that some respondents thought that the pandemic had affected men and women alike, and we identified that the main subjective feelings were experienced rather similarly by all (e.g. shock, fear, loss, and worry about survival).

'we are all miserable now' (Bangladesh, woman, II)

Interestingly, perspectives about whether men or women had been more affected were not linked neatly to respondents' own genders. Use of nonbinary gender identity terms did not arise in this data, such concepts often being taboo and extremely sensitive in some of these countries. Thus, some (men and women) thought the impacts worse for men, arguing that men had needed to adapt roles and expectations more. In all 5 countries, traditional gender norms position men as the breadwinners. This brings a heavy financial responsibility, and when unable to provide, alongside worry about their families' welfare, fear of blame, a sense of failure, and dented self-esteem were perceived likely. It was also reported that men found it difficult being at home all day, as they were used to being out, were not used to domestic life, and unable or unwilling to adjust.

'I would say men are not stable. When you just look in their faces, they are not okay. Even though the home is not broken but you find each is living separately. There is cold war in the homes' (Kenya, man, Phys)

In contrast others (men and women) felt that women's experiences were more difficult, as they were less able to leave the house (some men still did) and had all the worry of keeping the family fed and safe. Some women had lost their normal work outside the home (e.g., domestic or factory work), and some were trying to earn money, either continuing previous home-based work, adapting to it, or starting microbusinesses such as cooking snacks or making hand sanitizer to sell.

The tensions and worries discussed above manifested for both genders, but within households with less space and more financial worries the stress was amplified, seriously affecting gender relations, and upsetting the usual dynamics between spouses, parents, children and other relationships. Thus, there were more arguments, and although no interviewees reported direct experience of physical violence, their perception was that it was happening in other households.

men are not used to staying a long time at home which increases their financial burden as well as their mental pressure. Many of the men did not have any other income source. This actually irritates them all the time and increase the domestic violence. (Bangladesh, man, M)

'

A perception of an increase in gender-based violence outside the home was reported, including the attack or rape of girls and women with disabilities in the wider community suggested in Kenya, though no actual cases were described in our data. Respondents attributed this to increased stress within homes, and disruption of the norms of social behaviour. Some young women with learning disabilities complained that their parents were keeping them in, when they were usually allowed out. They interpreted this as linked to worry about their safety, given the risks of violence and infection. There were suggestions (Kenya, Nigeria) that the number of teenage pregnancies has risen, including for girls with disabilities, though we had no direct data on this.

There was some discussion about the intersection between gender and disability in the COVID-19 context. Generally, single mothers and widows were highlighted as particularly vulnerable because of lack of support and protection from male family members. It was also suggested that disabled women were more likely to be abandoned by their partners in times of crisis than disabled men.

'The problem for women with disability is the men leave. You are left with children. So, what do you do with the children? What I will not do is leave the children' (Kenyan, woman, Phys)

However, we know that abandonment and exclusion is common for disabled women generally, so it is not clear if this is exacerbated by the pandemic.

Structural and systemic responses, support and services

Several concrete themes relating to government and non-government actions and support services were identified in the data, with a widespread feeling that governments had not done enough to respond to the particular needs of people with disabilities, or to ensure their pandemic interventions were inclusive.

Corruption by duty-bearers was reported in Kenya, Nigeria and Bangladesh, with specific concern about the lack of transparency of official relief efforts implemented to mitigate the COVID-19 impacts. Some participants perceived that many disabled people received inadequate social protection previously, and that the pandemic had worsened the situation, either because of their increased need, or the opportunities generated for fraud.

'Many of the people with disabilities did not get the support due to the lack of support from government and also for corruption.' (Bangladesh, male, M)

Some respondents had received support from OPDs or NGOs, and a few had received social protection assistance from their respective governments. The highest level of support from OPDs was noted by respondents with intellectual disabilities and deaf-blindness in Bangladesh and Nepal, around half of whom mentioned receiving some support, and all of whom were recruited via their OPDs. However, in all the other countries and impairment groups in Bangladesh, fewer respondents mentioned receiving support. Some interviewees said they would not have survived without the NGO cash relief they received, but others, although grateful, thought it was insufficient for their needs. However, the majority of respondents did not receive any financial or material support from OPDs or NGOs and even fewer from their governments. There were major problems with accessing relief including: not being on the beneficiary list; lists not being transparent; inaccessible information about relief distributions; the distances to distribution centres; money not arriving; labour programmes (cash for work) being inaccessible/not inclusive; and assumptions that the usual disability allowance was enough without additional support.

'No access to information to deaf-blind and other people with disabilities. No flow of information in accessible format from government' (Nepal, man, DB)

'the mode of distribution of palliatives by the government remained poor throughout, and not disability inclusive' (Nigeria, man, VI)

Much of the government information provided about COVID-19 and the national responses was inaccessible to some people with disabilities, which was particularly so for those with hearing and/or visual impairment. Additionally, the government messaging was seen by many to be confusing or inaccurate, causing further anxiety. Efforts by the authorities to make information accessible were felt to be inadequate, which may have led to increased risk of infection and increased likelihood that people with disabilities would inadvertently break COVID-19 rules.

Reduced access to essential services, including healthcare, medicines and assistive devices, was reported by people with a range of impairments. This was felt most acutely by those with psychosocial disabilities, who lost access to drugs and counselling services because of restrictions, but also because they lacked the means to pay for them due to changed economic circumstances. Additionally, several participants mentioned difficulties in accessing appropriate peri-natal healthcare, including two examples where women lost a baby and had poor physical and mental health themselves.

Conspiracy theories were reported, especially in Nigeria where the existence of the disease or the motives behind the government response was questioned, but this was not disability related:

'Most people believe that the government called off the lockdown because government officials have achieved their sole purpose of carting away public fund and donations meant for managing the pandemic'. (Nigeria, man, VI)

In countries where people with disabilities feel their governments have historically failed to recognise their rights or act in their best interest, it seems COVID-19 has further eroded an already fragile trust of authorities.

Discussion

It is notable that to a large extent the findings are very similar across the 5 different countries, despite them being in different regions globally e.g. in West and East Africa and South East Asia, which have contrasting cultural and religious and socio-economic profiles 5

Some underlying patterns and theoretical links emerged during analytic discussions as we interrogated the data in different ways. A snapshot of these is presented here.

Understanding change over time - the emotional progression and concrete circumstances

The COVID-19 pandemic period can be understood using the concept of liminality, as others have identified (e.g. Bell, 2021; Bedynski, 2020; McCormick, 2020). Originally proposed by anthropologist Van Gennep (1960/2019) and expanded by Turner (1969/2008), liminality is concerned with the uncertainty generated by the transition between one state and another. It has spatial and temporal dimensions and is pertinent to individuals, groups or whole societies, usually when going through a change, crisis or dramatic disruption of normality (Thomassen, 2006, p. 16-20). It can be argued that having the identity disabled is often already a liminal one, where individuals are often regarded as being marginal, not having full citizenships and their status in society is commonly diminished. When disabled people report feeling constantly excluded and marginalised, this may be an indication of their liminal position, which may be ongoing rather than temporary.

COVID-19 times are a good example of a liminal transition when life as previously known has been abruptly suspended and may not be the same again. Such liminal periods are typically experienced as disorientating and uncertain, and people's sense of self is unsettled as the social status quo is (at least temporarily) de-stabilised, and they find themselves in newly ambivalent positions. Liminal feelings were reflected in the overarching themes of de-stabilisation, disorientation and uncertainty that emerged from the data. There is limited literature on the subjective emotional experiences of liminality (Kelly, 2008).

If we see the 'COVID-19 journey' as one of adapting to the loss of a life as previously known, then Kubler-Ross's (1969) influential grief model also has some relevance in defining five main emotional stages following a loss. Following a de-stabilising event, emotions can include: initial shock (paralysis) and denial (incorporating fear and confusion); followed by anger (frustration and anxiety) and depression (lack of hope); then bargaining (sense-making) and finally acceptance (adaption to the current circumstances). Kubler-Ross's work has been critiqued as being too simplistic to explain people's complex, unpredictable reactions, and multiplicity of responses (Friedman and James, 2008). However, she never intended that the model necessarily be sequential. Individuals may experience these feelings differently, miss some stages, cycle back to an 'earlier' stage, or get stuck in a stage. Applying this model to our interview data, we see that in all countries there are examples of shock, fear and confusion at the beginning of the pandemic, then awareness of loss, anger and frustration, followed by extreme anxiety, hopelessness and depression. Denial (of the existence of the virus) was most present in Nigeria. In some second interviews we saw some signs of adaptation and acceptance. However, there were also see-saw balances between some emotions such as between despair and hope, losing opportunities but sometimes finding new ones, being fearful and then feeling less so.

What is most relevant here is what we learnt about how things changed for the interviewees as the pandemic progressed. Turner (1969/2008) emphasised that liminal periods are inevitably transitioned over time, as the intensity of emotions cannot be maintained for a long time, so people do adapt to a new normal whether better or worse.

Comparing the first and second interviews, we observed feelings changing for particular interviewees, which was often related to their material circumstances. For some there were negative shifts due to ongoing frustration and boredom from lack of employment, and stress from increasing financial concerns when savings had been used up, relief assistance sometimes decreased without the situation improving and:

' we have to repay our loans which also worsens our situation' (Bangladesh, woman, II).

Others felt more positive with a resumption of income earning and more food on the table, lessening of fear, reduction of conflict in the home, resumption of social life with the loosening of restrictions and places of worship opening. Some were resuming previous activities, and others were adapting by finding alternative livelihoods and starting new small businesses. These respondents were feeling a bit more optimistic about survival and life ahead.

'Three months later, there is still a light at the end of the tunnel. Hope is not lost'. (Kenya, Man, Phys)

This was very variable across individuals and perhaps depends on individuals' social capital, levels of education, family or other support and other factors. Sometimes, where there were very few cases of infection, people had stopped believing the virus exists.

'it has been so long. So people had already digested it. They think like corona won't do anything. There is also no such incident of people in our area. Only one or two are dead because of corona. Only chronic patients suffer from corona' (Nepal, parent of child II)

'It is just simply a common cold and cough' (Nepal, man, II)

For some people there seemed to have been a turning or tipping point towards a better situation, or indeed for others the lack of one, which was crucial as the situation continued in a downward trajectory. For households where previous work or studies had been resumed or new ones started, and the coronavirus situation was improving, things seemed more positive. For others, where the situation remained financially precarious or where another lockdown loomed, negative emotions remained and were sometimes increased as means of survival had been exhausted and financial pressures had worsened. Overall, because fear of the virus itself was reduced, the main impacts were the financial ones, worries about the future and emotional links to these.

'Recently I got my job back and I am so happy now.' (Bangladesh, man, II)

'We are still going to struggle until the end – it ends, a miracle and everything is back to the way it was. And at that point we have to start from zero or farther than that.' (Kenya, man, Phys)

'It's been challenging now, compared to how it was before. It's like devices, you can charge things for some time, but then once the charge finishes, the problem is still there. The savings I had have finished. The relief support I used to get from organisations and people in the past has now reduced.' (Nepal, man, DB)

It is important to note that at the time of data collection, the prospect of a second lockdown and increased infection rates seemed distant. However at the time of writing, this situation has changed for the worse in all the countries with the possible exception of Nigeria. Additionally the possibility of a vaccine was rather distant at the time of the interviews.

Achievements and Limitations of the study

We used narrative interviewing to focus on interviewees' concerns, and also because this approach can generate insights on situational, emotional, relational and dynamic aspects that can be missed by researcher-directed interviews. However, this approach was harder for inexperienced researchers than more conventional interviews with their set structure. As we anticipated, this study generated rich and deep evidence on the interviewees' subjective feelings, and some insight into the nuances of contextual impacts by gender, impairment and other intersecting influences such as relative poverty or location as evidenced by the quotes.

In some countries the gap between interview rounds was shorter than planned because of logistical delays. Nevertheless, we were able to identify changes over time, depending on the specific country lockdown circumstances. Researchers also found that the interviewees communicated more openly in the second round, as we had anticipated.

While we successfully recruited interviewees from the most marginalised groups: people with deaf-blindness, intellectual, and psychosocial disabilities (particularly in Nepal and Bangladesh), they were not necessary amongst the most marginalised within these groups (e.g. by financial status, impairment, support structures, or geography). One group who are not included in this study are those people with disabilities living in institutional care. In addition, despite the research design which gave the opportunity to understand how experiences of the pandemic changed over time, at the time of writing it still is ongoing, so what is presented cannot be the full story of our interviewees' experiences of the COVID-19 pandemic overall.

Additionally, interviewing people remotely using online platforms or phones, is inevitably limiting and unsatisfactory for some participants and for the interviewers. Although we made great efforts to ensure that the process was inclusive and accessible, we recognise that it was less so than a face-to-face process would be and excluded some potential participants who did not have access to this technology.

Conclusions

As evidenced by the quotes we have included above it is clear that the COVID-19 pandemic has had catastrophic and life-changing effects on people with disabilities in all 5 countries, both at the emotional subjective level, relationally and materially in concrete ways. The impacts are complex, often with interactions between different aspects being clearly expressed (for example the extreme stress caused by financial insecurity). Some used stark expressions to demonstrate the extent of the fear, loss, disruption and uncertainty they felt. Some of these impacts have been reported in general populations globally, but we can also see clear exacerbated and specific effects for people with disabilities. The well recognised interaction between disability and poverty is evidenced, as to a certain extent is the increased disadvantage for those living rurally and those with particular impairments.

It is clear from our narrative interview data collected from more than 75 participants with disabilities in 5 low-and-middle income countries that the impact of the COVID-19 pandemic has been wide-ranging and extreme in some cases. We had very few interviewees reporting that they or family members had been infected with the virus themselves, but the social, psychological and material impacts have had a damaging effect on many people's lives and aspirations for their futures. Interviewing people twice with a 2-month interval enabled us to see that the situation was changing and for the most part things were better during the second interview. However, there were concerns about how people would cope with a possible second lockdown, with resources depleted from surviving the first and indeed at the time of writing the situation has worsened in many of these countries.

Notwithstanding some local, cultural variation, the feelings of shock, loss of a previous life and of future plans, stress and anxiety, boredom, depression, uncertainty, anger and others were widespread and similar across countries, genders and impairment types. Many people experienced continued or increased stigma and discrimination related to their impairment, and there is some evidence of increased bullying and violence, within and outside the home.

The concrete material effects were being catapulted into extreme financial stress and poverty, lack of access to services such as education, health, social protection and relief benefits that the general population had better access to. There was also a lack of accurate accessible information suitable for different impairment groups and governments were criticised for their inaction, lack of an inclusive approach and in some cases, accused of corruption.

To a very large extent our findings echo the impacts of the pandemic predicted by various agencies at the outset of the pandemic (Meaney-Davis et al., 2020; IDA 2020) and the findings of other studies (Christensen et al., 2020 a; i2i, 2020; COVID-19 DRM 2020). It is clear that the marginalised and disadvantaged position of many people with disabilities in low and middle income has been exacerbated by the pandemic, and more inclusive approaches to service provision and to emergency planning and relief in crises is urgently needed.

People's agency or lack of it is crucial in understanding their experience in the liminal space generated by COVID-19. Individual and collective agency is necessary to adapt and survive, or to transition to a post-liminal new reality. However, disabled people are more likely to lack autonomy and resources to control their own lives because of ongoing structural disadvantage. They are already often marginalised and financially insecure, and this means that for them, where feelings of uncertainty and lack of understanding is already common, COVID-19 has exacerbated these liminal feelings, and makes the journey from the known past to the unknown future more difficult.

'As the world recovers from the pandemic, we must ensure that the aspirations and rights of persons with disabilities are included and accounted for in an inclusive, accessible and sustainable post COVID-19 world,' (UN Secretary-General António Guterres, Dec 2020)

Acknowledgements

We would like to thank all the participants in the 5 countries who gave up their time to be interviewed and who were open and willing to share their experiences with us. Their participation at this difficult time is very much appreciated. We would also like to acknowledge the contribution of our INGO and local OPD partners in each country who helped us greatly with logistics and recruitment of interviewees.

Finally, we would like to thank our local researchers Fatema Akhtar, Rabia Bosri, Shubha Kayastha, Anita Sigdel, Josephine Njungi, Eric Wakoko, Shadrach Chuba-Uzo for their energy, hard work and enthusiasm in working on this project. They collected the data and translated/transcribed it, participated in participatory analysis processes and contributed to collating the data for the paper and related reports. Thanks to a great team.

Funders

This study was funded by two FCDO (UK Aid) funded disability consortium programmes, under the Inclusive Futures banner: 'Inclusion Works' and 'Disability Inclusive Development' . IDS is a research partner in both these consortia.

The material presented in the paper does not necessarily reflect the views of the funder or wider consortia.

Conflict of Interest

The authors have no conflicts of interest.

References

Endnotes

  1. We are aware of the controversy around and significance of the use of 'disabled people' versus 'people with disabilities'. In the countries where we work the latter is more common as it is seen to be in alignment with the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and other international discourses. However, we prefer disabled people as this more accurately represents our stance in espousing the social model of disability.
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  2. We had existing research relationships with these teams as part of two current UK Aid (FCDO) funded projects (Inclusion Works (IW) 2018-2022, and Disability Inclusive Development (DID) 2018-2024, http://Inclusive Futures.org). These focus on improving the lives of disabled people and involve us in various participatory research activities, in collaboration with other consortium partners (mainly INGOs and OPDs), focused on inclusive employment, education, health, and reducing discrimination in 7 countries in Africa, the Middle East and South Asia. The COVID-19 qualitative research was an adaptation of our activities in response to the pandemic, and while other work was suspended, this research complements the consortium's direct relief work.
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  3. For more details on individual country findings see Rohwerder et al., 2021a, Wickenden et al., 2021a; Rohwerder et al., 2021b; Wickenden et al., 2021b; Thompson et al., 2021; Shaw et al, 2021.
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  4. Quotes are identified as from individuals by country, gender and impairment type. Abbreviations for impairment types: Phys=Physical impairment, II=intellectual impairment, VI=Visual impairment, HI=Hearing impairment, Alb=Albinism, PS=Psychosocial impairment, M=multiple impairment, DB=Deaf-blindness
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  5. Due to the length constraints of this article, we have not presented detailed data illustrating differences between the findings across countries and cultures.
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Appendix

Table 1 Study Participants
Bangladesh IWBangladesh DIDKenyaNepalNigeriaUgandaTotalsPercent
GenderMale51058553851
Female51057553749
ImpairmentPhysical 2020331013
Visual20102279
Hearing00002134
Intellectual1625111621
Psychosocial00330068
Other3022231216
Multiple21405002128
Age<29 91144153445
30 to 49 196*8953851
50>00030034
Education**None05000057
Primary0722011216
Secondary0317011216
Tertiary8466984155
Other21101057
Occupation***Employed/works1572652635
Unemployed36112212533
Student6720232027
Other02010145
Marital StatusMarried2429252432
Single81684854965
Other00020023
LocationRural51005162736
Urban5886923851
Semi0224021013
Dependence****Depends on others0046101115
Others depend on them8839774256
Neither 21210232027
Unclear00200023
Times InterviewedOnce10230068
Twice92081210106992

*Age of one participant in Kenya unknown, but estimated as early 30s.
** Education categories standardised across the five countries. College education included under 'tertiary'. Other includes religion-based education and informal education.
*** The occupation category of 'other' included volunteers, and those with caring responsibilities who were not actively seeking employment.
**** The dependence category was open to interpretation by data collectors, but an attempt at standardising the categories across the countries has been made.

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Copyright (c) 2021 Mary Wickenden, Jackie Shaw, Stephen Thompson, Brigitte Rohwerder

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