"I want to become someone!" gender, reproduction and the moral career of motherhood for women with sickle cell disorders.

In Sierra Leone, motherhood is being transformed into a moral career for women with sickle cell disorders. This qualitative participatory study, conducted in 2018, involved thirty-six semi-structured interviews with female care-givers and women with sickle cell disorders. Mothers argued that medical models of disease, combined with caring practices, are means to morally manage ideas of 'spoiled identity' and rethink the sick role, disability and life-outcomes of a potentially serious condition. Mothers encourage their children with sickle cell to stay in education as a route to access formal employment and careers that will not tax their bodies and ensure reproductive timing. Education and employment are framed temporally to ensure a delay so that girls can develop caring relationships and access motherhood safely. Understanding and encouraging the development of motherhood as a moral career, involving embodied hyper-vigilant caring practices, is valuable for the self-identity of mothers, allowing them to see a future for themselves and their children.

Repercussions of overturning Roe v. Wade for women across systems and beyond borders.

June 24th, 2022, a day that will be etched in today and future generations' textbooks as a historic day, the United States of America revoked the constitutional right to seek safe abortion care. Overturning Roe v Wade allowed the divided individual states to independently decide the legal parameters regarding abortion care. A decision that disproportionately effects the reproductive lives of women residing on the land of America. Given the systemic impacts of racism, neoliberalism and white supremacy, it is the Black, racialized and poor women who suffer terrible repercussions. In this commentary the authors begin by discussing the historical biopolitical perspective, colonial systems and longstanding impacts on racialized women's bodies in America. The discussion transitions to the implications of geopolitics at play nationally and cascading impacts globally, focusing on humanitarian and emergency settings. Using a medical humanities perspective, authors highlight the collision between politics and reproductive health policy and its implications on social determinants of health, such as women's education, employment, housing, racial and gender equity and wellbeing. Long standing advocates, community leaders and healers, leading scientists, birth attendants, doctors, nurses, allied health professionals/providers and humanitarian workers - and many others - are reminded and live the weight of the continuous battle of population control, stemming from the oppressive history of control and exploitation.

Rights to social determinants of flourishing? A paradigm for disability and public health research and policy.

BACKGROUND: The term evidence based medicine was introduced in the early 1990s in clinical medicine to educate clinicians about how to assess the 'credibility' of research to ensure best treatments for their patients. The evidence based medicine paradigm has become more diffuse in times of austerity and randomised controlled designs are being used to address complex issues in public health and disability research. This research is not addressing inequalities in terms of disability nor how people can live well with disabilities. MAIN TEXT: We argue that there are four ways that public health research needs to change if it wants to address inequalities linked to disability: 1) rethinking theoretical connections between public health and disability; 2) building ethics and equity into interventions through a human rights approach; 3) ensuring ethical inclusion through intersectionality; and 4) evaluating policy and other social impacts to ensure they capture diversity. We argue that these are key issues to building a social determinants of flourishing. CONCLUSIONS: We need to understand how disability might have an accumulative impact across the life course, as well as how to ensure equity for people living with disabilities. This means conceptualising a social determinants of flourishing where we evaluate how exactly randomised controlled trials and public health interventions, not only lead to greater equality but also ensure rights to health and wellbeing.

The indignities of shielding during the COVID-19 pandemic for people with sickle cell disorders: an interpretative phenomenological analysis.

This article seeks to understand the first-hand experiences of people with sickle cell, a recessively inherited blood disorder, who were identified as clinically extremely vulnerable during the COVID-19 pandemic. Part of a larger sequential mixed-methods study, this article uses a selective sample of eight qualitative semi-structured interviews, which were analysed using interpretative phenomenological analysis (IPA). The first stage of IPA focused on practical concerns participants had correlated to understanding shielding and their feelings about being identified as clinically extremely vulnerable. In a secondary stage of analysis, we examined the emotions that it brought forth and the foundations of those based on discriminations. This article adds to our theoretical understanding of embodiment and temporality with respect to chronicity and early ageing. It explains how people with sickle cell disorders have an embodied ethics of crisis and expertise. It also elucidates how people's experiences during the pandemic cannot be seen in void but illustrates ableism, racism, and ageism in society writ large.

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

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.

Black sickle cell patients' lives matter: healthcare, long-term shielding and psychological distress during a racialised pandemic in England - a mixed-methods study.

OBJECTIVE: To understand the psychological and social impact of shielding on people with sickle cell disorders and their carers in the Midlands region of England. This region was badly affected during the pandemic, with the city of Birmingham having some of the highest rates of COVID-19 deaths. DESIGN: A mixed-methods project with a quantitative survey on shielding and adapted SF36 V.2 questionnaire, which was supplemented by qualitative semistructured interviews analysed using interpretive phenomenological analysis (IPA). PARTICIPANTS: Fifty-one participants who were predominantly of Black Caribbean or Black African heritage anonymously took part in the online survey. We supplemented this with eight in-depth semistructured interviews with adults with sickle cell disorders using IPA. RESULTS: The adapted 36-Item Short Form Survey (SF36) version 2 (V. 2) survey indicated worse quality of life and mental health. The open-ended questions from the adapted survey also identified shielding concerns about hospital care, pain management and knowledge of sickle cell by healthcare professionals. From the interviews, it emerged that the racialised element of the pandemic caused significant psychological distress for a population group that had to regularly access hospitals. It was noted that psychological health needs both during a pandemic and outside of it were poorly understood and became invisible in services. The psychological impact of experiences of hospital care as well as growing up with an invisible chronic condition were important to understand psychologically.

On the possibility of a disabled life in capitalist ruins: Black workers with sickle cell disorder in England.

The link between workers with sickle cell disorder (SCD) and employment has until now been seen through the lens of the person's disease, not their relationship to work (paid and unpaid). Using SCD as a case study, we foreground relations of employment, setting sickle cell and work into ecological context. In 2018, two focus group discussions and 47 depth-interviews were conducted with black disabled workers living with SCD across England. The relational concepts of Anna Tsing (2015) - salvage accumulation, entanglement and precarity - were used as an analytical framework to assess the reported experiences. To understand the experiences of those with SCD and employment, it is necessary to apprehend the whole ecology of their bonds to their bodies; their social relationships of kin and family; and their wider social relations to communities. Paid employment breaks bonds crucial to those living with SCD. First, employers can only extract sufficient productive value from workers if they disregard the necessary self-care of a precarious body. Secondly, reproducing labour though child-care, housework and care work is a taken-for-granted salvage central to capitalism. Thirdly, voluntary and community work are salvaged for free by employers towards their accumulation of profits. People with SCD find bond-making activities that create the commons life-affirming, thereby reconfiguring our understanding of connections between disability and work. Tsing, AL (2015) The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruins Princeton, NJ: Princeton University Press.

Competing ethics in a pilot strategy to implement parasitology training and research in post-Ebola Sierra Leone.

Much of the focus of public health research post-Ebola in Sierra Leone has been on rebuilding the healthcare system. However, very little attention has focused on capacity building in knowledge necessary for (bio)medical research, specifically around emerging opportunistic human pathogens that contribute to the high morbidity and mortality rates in Sierra Leone. In collaboration with academic staff from the University of Makeni, we engaged in a small-scale pilot intervention to strengthen medical parasitology teaching and research. The cultural competencies and ethical expertise provided by Sierra Leonean academics was critical to work in local communities and ensuring consent to undertake research. Yet, at the end of a day of collecting samples, in small pieces of conversation, the staff also explained ethical constraints they experienced taking part in research collaborations. They illustrate that, while on the surface all may seem well with a project, there can be harmful effects in terms of accessibility, ownership, cultural responsiveness and accountability, which should be taken into consideration when establishing networks and collaborations with universities from low-income countries.

Practices of responsibility and nurses during the euthanasia programs of Nazi Germany: a discussion paper.

In this paper, we focus on the contexts of moral decision-making by nurses in the euthanasia programs of Nazi Germany between 1939 and 1945 using Urban Walker's philosophical model. We use the second hypothesis of this model, that morality consists of practices of responsibility, to give an analysis of the understandings nurses had of their responsibilities in the euthanasia programs. The article starts with a brief introduction to the euthanasia programs of Nazi Germany from 1939 to 1945 and nurse participation, to illustrate how the responsibilities of nurses were manipulated. Secondly, nursing as moral practices are analysed in the context of the euthanasia programs that implement commonly shared understandings and practices of responsibility. Thirdly, the reasons that nurses gave for avoiding any responsibilities are examined. Fourthly, it is examined if nurses took any responsibility in the euthanasia programs. In conclusion, this paper discusses three points of relevance such a reflection on moral responsibility in the context of Nazi Germany has for nurses today who may be confronted with euthanasia.

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.

Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair.

Connecting theoretical discussion with empirical qualitative work, this article examines how sickle cell became a site of public health intervention in terms of 'racialised' risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public health screening efforts. Using qualitative research based in the United Kingdom, we show how a focus on collective efforts of repair can lie in tension with how services and individuals understand and negotiate antenatal screening. We illustrate how screening for sickle cell disorder calls into question narrative identity, undoing paradigms in which ethnicity, disablement and genetic impairment become framed. Research participants noted that rather than 'choices', it is 'risks' and their negotiation that are a part of discourses of modernity and the new genetics. Furthermore, while biomedical paradigms are rationally and ethically (de)constructed by participants, this was never fully engaged with by professionals, contributing to overall perception of antenatal screening as disempowering and leading to disengagement.

'Who's the guy in the room?' Involving fathers in antenatal care screening for sickle cell disorders.

Fathers are increasingly invited to take part in antenatal care of which screening for sickle cell trait is a part. Expectations about involvement reflect changing perceptions of fatherhood and negotiation of gendered identities. Current policy supports male involvement, but is less clear on what basis and with what consequences. In exploring this, our qualitative study, using semi-structured interviews, presents the experiences of fathers who have recently undergone antenatal screening for sickle cell. The sample was generated in discussion with eight non-governmental organisations. We recruited 24 fathers from nine UK cities. Our analysis outlines the importance of 'presence', in which fathers rely on nurturing definitions of fatherhood to display their sense of responsibility. Fathers, however, struggled to find a meaningful role as traditional masculinities became juxtaposed with new and complex forms of gender organisation, creating the potential for estrangement. To conclude, screening policy makes an appeal to emergent masculinities. It also generates risks and compromises choice, due to the normative values implicit in the screening process, reinforced by the more controlling aspects of health surveillance. This creates confusion among fathers, who are not sure why they have been invited into the antenatal space.