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open access article Interventions that promote public health have the potential to transform lives, particularly for those who experience disability, where marked social and material inequalities occur across the life-course. When evaluating such interventions, health-related quality-of-life is regarded as a primary outcome and used to inform evidence-based practice. Quality-of-life measures, however, are not straightforward heuristic devices but express technologies of epistemic power. By prioritising methodological certainty over the credibility of personal testimonies, those experiencing disability can find themselves excluded from the evidence-base, on which public health interventions are based. Our paper explores how disability is represented by tools informing evaluative public health research and establishes the possibility of alternate practices, including the potential for more appropriate measures better suited to representing experiences. We conclude, by considering how discussions about “flourishing” can create more inclusive and empowering practices, able to challenge inequalities and discrimination, consistent with a commitment to social justice.

open access article The 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.

This pilot mixed methods study wanted to understand the psychological impact, as well as the social needs, of people with sickle cell disorders (SCD) who had been identified as ‘extremely clinically vulnerable’ by the government and had been asked to ‘shield’ at home from the 23rd of March 2020, to when shielding was officially lifted, on the 31st of March 2021. We were also interested in how parents who had SCD and parents of children with the condition were coping. We found that throughout the pandemic, while people’s very basic social needs were being met, their psychological health needs were not.

Following the devastating effects of the 2013-16 Ebola outbreak on the Sierra Leonean public health system, De Montfort University (DMU, UK) is leading a project to build the teaching and research capabilities of medical parasitology at the University of Makeni (UniMak, Sierra Leone). A DMU researcher visited UniMak for two weeks in April 2019 and provided a voluntary short training course (theoretical and practical) in basic parasitology, using our novel web-based resource DMU e-Parasitology® (http://parasitology.dmu.ac.uk/index.htm), which is little taught in their programmes. Following this training, UniMak’s academics offered a voluntary practical to study the presence of coccidian human parasites in farm pig stool samples to final year students enrolled in the degree of ‘Public Health: Medical Laboratory Sciences’. Nine of the eighteen students that attended the practical provided feedback: 88.9% (22.2% agreed, 66.7% strongly agreed) indicated that the videos displaying how to perform the Kinyoun stain facilitated their learning; and only 11.1% indicated that the web-based resources did not help them to perform the Kinyoun stain. Our results would indicate that the DMU e-Parasitology® is an appropriate resource to introduce and facilitate the teaching of emerging and opportunistic parasitic diseases in a low-income university.

The file attached to this record is the author's final peer reviewed version. This paper begins by giving a description of the relationship between austerity and the neoliberal policy focus on work in the UK, and how this impacts negatively on disabled people. It examines why Black disabled people’s employment experiences have been missing in the literature despite the fact that they are more affected by austerity. Black disabled people’s experiences in the job market tend to focus on racism and discrimination, whilst other struggles linked to disability, and what this implies for Black people, are poorly understood. A case study, of Black disabled workers, living with the sickle cell condition, is examined to comprehend why more nuanced intersectional research might be needed to understand why some Black people’s experiences of employment remain invisible.

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.

This chapter aims to: • Understand how patterns of disablement and chronic illness may partly derive from levels of material deprivation. • Illustrate why it may be important to look at the interactions not only between ethnicity and disablement, but between other factors such as age, gender, socio-economic status. • Show why it is important to interpret official figures on disability and ethnicity with care; and how cultural explanations from a policy perspective might worsen inequalities. • Understand the changing policy contexts associated with increased racism and disability discrimination. .