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.

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.

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.