There was great concern at the start of the Covid-19 pandemic about the consequences of such an unprecedented global crisis on people with disabilities; particularly on people with disabilities in low- and middle-income settings. The Disability Research team at IDS wanted to explore whether and how these concerns had played out as the crisis had progressed. In particular we wanted to speak with people with disabilities themselves to hear about their experiences in their own voices.
As part of the Inclusive Futures initiative, we undertook research in Bangladesh, Kenya, Nigeria, Nepal and Uganda.
To celebrate the International Day of Persons with Disabilities, we share some of our findings.
Undertaking disability inclusive research
We worked with seven local researchers across the five countries and three of the researchers had disabilities themselves. After careful consideration with regards to how to safely and ethically conduct disability-inclusive research during the pandemic, we completed narrative interviews with 75 participants to generate storied responses. This ensured that they had the opportunity to focus on their priorities. The participants had a range of impairments and backgrounds and were an equal mix of men and women. Importantly, they had the opportunity to share what the most significant impacts were for them and their families. Nearly everyone was interviewed twice to capture changes in impact as the situation unfolded. We undertook a participatory analysis of the data and online validation meetings with some of the participants from each country so that they could give feedback on our interpretation of what they had told us.
The impact of Covid-19 on people with disabilities
‘What will happen to all my set goals and dreams?’ Woman with physical impairments, Uganda
The emerging themes showed two broad types of experiences and impacts: subjective themes relating to feelings and concrete themes relating to material impacts. These were found to be interconnected and interrelated. It is perhaps unsurprising that for many of the participants, the pandemic brought feelings of destabilisation, disorientation and uncertainty. Fear, shock and loss also came across strongly. On a more positive note, during second interviews about two months later, some participants felt hope – a feeling which became stronger and more widespread as national lockdowns were lifted and many aspects of life returned to how they were before Covid-19.
The participants spoke of experiencing various dilemmas such as choosing between leaving the house to secure food or staying at home and keeping safe. They also recounted feeling tensions between receiving support that was needed but feeling increased vulnerability or dependence. Many of the feelings, difficulties and impacts experienced by the participants are the same as those experienced by others in society. However, we argue that many of the multitude of pre-existing and intersecting disadvantages faced by people with disabilities have been exacerbated by the pandemic. These include poverty cycles, gender-based inequalities and impairment related discrimination, inaccessible services, and exclusion from aspects of societal life.
The pandemic as an unsettling time
‘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.’ Man with multiple impairments, Bangladesh
We found the concept of liminality particularly useful to gain an understanding of what the participants had experienced. In past literature, Willett and Deegan have described the liminality experienced by people with disabilities as a failure to be incorporated. Transitory positions can make people feel uncertain and unsettled. Our research found that many people with disabilities in low-income settings felt their lives were in a state of uncertainty where their previous lives had been abruptly suspended and there was concern they would never be the same again.
As the pandemic progressed, we were able to see some participants were transitioning from positions of desperation to more hopeful situations. Responses were of course highly contextual, but we saw, in general, a reduction in fear of the virus. For some, this fear of infection was replaced by concerns about financial stability and societal discrimination. This indicated at least a partial return to the previously experienced state of exclusion and discrimination.
Catastrophic effects and exacerbated disadvantage
‘You are always low. Before we would always meet with friends for a cup of coffee and talk. But now this is not there’ Woman with psychosocial impairments, Kenya
Our research showed that the pandemic has had unquestionable catastrophic effects on people with disabilities in all five countries. These effects were both emotional and material. While many people globally also experienced these effects, we found clear exacerbated and specific effects for people with disabilities, particularly with regards to poverty and discrimination. The pandemic has exacerbated the feelings of being devalued as citizens that many people with disabilities experience. For this group of people in particular, Covid-19 has exacerbated these liminal feelings, and makes the journey from the known past to the unknown future more difficult.
To a very large extent, the experiences we documented resonate with the concerns expressed by various agencies at the start of the pandemic. The marginalised and disadvantaged position of many people with disabilities in low and middle income has been exacerbated by the pandemic. Addressing the situation caused by the current crisis (and to better plan for crises of the future) requires more inclusive approaches to emergency planning and crisis relief are urgently needed. People with disabilities themselves must play a major part in this process if they are to be successful.
