Cole, Ellie Frances; (2025) What does a disability-inclusive pandemic response mean for Liberia and how can it lead to genuine systemic change? Doctoral thesis (Ph.D), UCL (University College London).

Preview

Text Ellie Cole full PhD thesis.pdf - Accepted Version Download (7MB) | Preview

Abstract

People with disabilities globally have been disproportionately affected by the COVID-19 pandemic (FCDO, 2020; UN, 2020), but there has been little research on how people with disabilities in low-income countries have been affected by the response to the pandemic, and how this compares with other emergency health responses. My research aimed to understand in-depth how people with disabilities in Liberia experienced the COVID-19 response, and how this compares with their experience of the Ebola response. This is a unique opportunity to analyse systemic ways in which people with disabilities face exclusion from emergency health responses and public health programmes, putting them at greater risk. Epidemic responses are also an opportunity to reveal broader structural inequalities. People with disabilities faced significant exclusion during the Ebola response in Liberia (Kett, Cole, Beato, Carew, Ngafuan, Sekou Konneh, et al., 2021) and my research sought to understand whether and how this was different in the COVID-19 response. My research has two main questions: ▪ How have people with disabilities in Liberia experienced recent epidemic responses and public health measures and to what extent have they been included? ▪ What approaches can enable people with disabilities to participate in and lead inclusive systemic change? My project gathered in-depth qualitative data on disability in Liberia, building upon previous research1. My research has three main strands: a photovoice project with people with disabilities and caregivers and service providers; key informant interviews with actors involved in the COVID-19 and Ebola epidemic responses; and life-history interviews with people with disabilities in urban and rural settings. Data were analysed using reflexive thematic analysis (Braun and Clarke, 2006, 2012) using theoretical frameworks on structural violence (Galtung, 1969; Farmer, 2004) and social justice (Fraser, 1997, 2009). Results formed a multidimensional understanding of the impact of epidemic response and recovery on people with disabilities. I examined inequalities experienced by people with disabilities during public health crises, exploring issues including participation, trust, and poverty (Austin et al, 2021; Kett et al, 2021) to understand how people with disabilities can achieve meaningful inclusion in epidemic responses. Findings challenge normative assumptions around humanitarian responses to show that systemic exclusions and material deprivations experienced by people with disabilities during times of health crises exacerbate existing systems of exclusion and pervasive ableism, rendering people with disabilities ‘invisible’ to epidemic responses. Results also showed that rurality was a driver of structural violence experienced by people with disabilities, which increased between the Ebola and COVID-19 outbreaks. However, findings also contested assumptions around people with disabilities as passive recipients of aid, revealing a confidence among people with disabilities to actively ‘combat’ COVID-19 due to their learning from the Ebola outbreak. This research makes a timely contribution by centring the experiences of people with disabilities during two public health emergencies in an extremely resource-constrained context. These findings have relevance beyond Liberia, and the empirical data can offer lessons for other low-income settings on how disability can be meaningfully included in humanitarian preparedness, planning and emergency response and recovery. The research also has global relevance, where insights can inform more inclusive emergency planning and implementation at international levels. By highlighting the systemic gaps encountered by people with disabilities in emergency responses, this work underscores the urgent need to embed disability inclusion as a core principle and not as an afterthought in crisis response frameworks everywhere. Given the increasing frequency and complexity of global health crises, this research is well-placed to have impact within academia and in global health, development and advocacy arenas.

Download activity - last month

Export as XMLJSONCSV

Download activity - last 12 months

Export as JSONXMLCSV

Downloads by country - last 12 months

Export as CSVXMLJSON

Archive Staff Only

View Item