Disability as Embodied Memory? A Question of Identity for the Amputees of Sierra Leone

This paper examines the problematic construction of amputee identity in Sierra Leone society after the decade long civil war through discourses and imagery of amputees presented in the media. Empowerment by NGO’s and other charities lead to a reaffirmation of amputee identity in which notions of class, ethnicity, and age may not play a big role, but gender certainly remains a relevant cultural marker

Practices and discourses of ubuntu: Implications for an African model of disability?

Background: Southern African scholars and activists working in disability studies have argued that ubuntu or unhu is a part of their world view. Objectives: Thinking seriously about ubuntu, as a shared collective humanness or social ethics, means to examine how Africans have framed a struggle for this shared humanity in terms of decolonisation and activism. Method: Three examples of applications of ubuntu are given, with two mainly linked to making explicit umaka. Firstly, ubuntu is linked to making visible the invisible inequalities for a common humanity in South Africa. Secondly, it becomes correlated to the expression of environmental justice in West and East African countries. Results: An African model of disability that encapsulates ubuntu is correlated to how Africans have illustrated a social ethics of a common humanity in their grassroots struggles against oppression and disablement in the 20th century. Ubuntu also locates disability politically within the wider environment and practices of sustainability which are now important to the post-2105 agenda, Convention on the Rights of Persons with Disabilities (CRPD) and the (UN) Sustainable Development Goals linked to climate change. Conclusion: A different kind of political action linked to social justice seems to be evolving in line with ubuntu. This has implications for the future of disability studies

Policy Briefing: Implementing empirical ethics and rights - IDEAS for ensuring disability equity in research

Research collaboration between University of York, De Montfort University and Lancaster UniversityIn this policy briefing, we illustrate the development and potential of tools developed from commissioned public health research project where empirical ethics was combined with human rights to elucidate a critical framework for conducting and evaluating Randomised Controlled Trials (RCTs) in public health and disabilit

Let's Get Back to Normal? COVID-19 and the Logic of Cure

open access articleThe COVID-19 pandemic has inversed certainties of absolutes of cure in everyday life but paradoxically this has occurred during a time when novel scientific advancements seem to herald a new frontier of cures for rare diseases, chronic conditions, disabilities and viruses that were previously incurable. In this paper, I illustrate the development of a logic of cure by first of all noting a lacuna in the medical sociological and anthropological literature, where although a lot of empirical research and theoretical work to understand cure has been undertaken, there has been no sociology or anthropology of cure. Using three case studies, I examine what they reveal about the logic of cure. Firstly, I argue that there is a development of a bioethics of cure in reactions of disability community and disabled people to care as cure during the COVID-19 pandemic. The second case-study focuses on understanding limitations of vaccines and how people react against such indeterminancies of loss of absolutes of cure. Lastly, the final case study describes how while there are cures, for example, for rare genetic conditions, they are often initially curated with long-term cost-benefit analysis for the Global North. In conclusion, it is found that many of the developments within sociology and anthropology are missing from a logic of cure and that a new theory of cure has to develop

A Report on Sickle Cell in Sierra Leone

Sierra Leone is thought to be one of the West African countries most affected by sickle cell disorders. Estimates state that one in four people carry the gene for sickle cell and between 1 to 2% of births are of children with the condition. Despite this, there has been a general public health and social neglect of the condition, so that prevalence is poorly understood and policy non-existent. This participatory qualitative research project, conducted in 2018 in two districts in the country, sought to understand both women’s experiences caring for children with the condition, as well as what the needs were of women who had the condition. The findings illustrated that a historical memory of the condition and its effects exists in the intergenerational memories and practices of people. This is important to learn from to combat stigmatisation of women and people who have the condition. However, past expertise and medical knowledge currently co-exist in isolation from each other, with access to proper healthcare unavailable in most parts of the country. This has led to an inability to get a correct medical diagnosis, no advice about how to live with the condition and an inability to access specialized medical and rehabilitative services. These failures in care have led to early deaths and disablement, with the result that the general public fear the condition. A neglect of reproductive justice and the relational implications for women with the condition was also apparent in the high number of deaths of women and infants with sickle cell. Lastly, due to the work of the voluntary and medical sector, there is increasing awareness in parents, schools and communities of how the total environment is crucial for holistic management of sickle cell conditions in a low- income country. However, it is women who are still mostly responsible for ensuring that their children access a better quality of life and women who still incur moral blame and shame for their ill-health and that of their children

Editorial: Intersections of ageing and disability during the COVID-19 pandemic

open access articleThe pandemic exposed the loss of human rights of older and disabled people and illustrated the critical commonalities these two groups have. As sociologists with personal and professional experience of ageing and disability, we were concerned with the proliferation of such “care-less” spaces (Rogers, 2017) and wanted to explore what could be learnt. Considering the general population's positive trajectory in increased life expectancy, not enough has been written about experiences of ageing with, and into, disability. This Research Topic brings together a range of epistemological and methodological perspectives in five papers to understand how to situate a better future of care

Introducing medical parasitology at the University of Makeni, Sierra Leone

The file attached to this record is the author's final peer reviewed version.Capacity building in Sierra Leone (West Africa) is critical to prevent potential future outbreaks similar to the 2013-16 Ebola outbreak that had devastating effects for the country and its poorly developed healthcare system. De Montfort University (DMU) in the United Kingdom (UK), in collaboration with parasitologists from the Spanish Universities of San Pablo CEU and Miguel Hernández de Elche, is leading a project to build the teaching and research capabilities of medical parasitology at the University of Makeni (UniMak, Sierra Leone). This project has two objectives: a) to introduce and enhance the teaching of medical parasitology, both theoretical and practical; and b) to implement and develop parasitology research related to important emerging human parasites such as Cryptosporidium spp. due to their public health significance. Two UniMak academics, hired to help initiate and implement the research part of the project, shared their culturally sensitive public health expertise to broker parasitology research in communities and perform a comprehensive environmental monitoring study for the detection of different emerging human parasites. The presence of targeted parasites are being studied microscopically using different staining techniques, which in turn have allowed UniMak’s academics to learn these techniques to develop new practicals in parasitology. To train UniMak’s academics and develop both parts of our project, a DMU researcher visited UniMak for two weeks in April 2019 and provided a voluntary short training course in basic parasitology, which is currently not taught in any of their programmes, and was attended by 31 students. These sessions covered basic introduction to medical parasitology and life-cycle, pathogenesis, detection, treatment and prevention of: a) coccidian parasites (Cryptosporidium, Cyclospora and Cystoisospora); b) Giardia intestinalis, Entamoeba and free-living amoebas; c) malaria and d) microsporidia. A theoretical session on common staining techniques was also provided. To facilitate the teaching and learning of these parasites, the novel resource DMU e-Parasitology was used, a package developed by the above participating universities and biomedical scientists from the UK National Health Service (NHS): http://parasitology.dmu.ac.uk/ index.htm. Following the two weeks of training, UniMak’s academics performed different curriculum modifications to the undergraduate programme ‘Public Health: Medical Laboratory Sciences’, which includes the introduction of new practicals in parasitology and changes to enhance the content of medical parasitology that will be subjected to examination. Thus, a new voluntary practical on Kinyoun stain for the detection of coccidian parasites was introduced in the final year module of ‘Medical Bacteriology and Parasitology’; eighteen students in pairs processed faecal samples from pigs provided by the Department of Agriculture and Food Security from a nearby farm. Academics at UniMak used the Kinyoun staining unit (available at http://parasitology.dmu.ac.uk/learn/lab/Kinyoun/story_html5.html; [1]) to deliver this practical. Although our project is at a preliminary stage, it has been shown to be effective in promoting the introduction and establishment of medical parasitology at UniMak and could be viewed as a case-study for other universities in low-income countries to promote the United Nations (UN) Sustainable Development Goals (SDGs) and improve public health understanding of infectious diseases

Involving Fathers in Ante-Natal Screening for Sickle Cell Disorders: Improving Informed Decision-Making

There are many reasons why fathers find it difficult to be involved in ante-natal screening for sickle cell disorders. Some are the consequence of disadvantage and inequalities, others are associated with how services are organised. Men’s perceptions about the relevance of screening are equally important, along with their relationship with their partners and families. Examples of good practice also exist and we can learn from these. Our report includes findings and recommendations for policy and practice