Click the star to add/remove an item to/from your individual schedule.
You need to be logged in to avail of this functionality.
Log in
- Convenors:
-
Eva Jörgensen
(University of Iceland)
Muriel Lamarque (Sheffield Hallam University)
Send message to Convenors
Short Abstract:
This panel aims to explore liminal healthcare actions of marginalised groups and the way people seek care within alternative therapeutic spaces to counteract standing inequalities.
Long Abstract:
In recent years, public health emergencies and global political crises have heightened and accelerated the drawing of barriers, borders and boundaries between regions, groups, and individuals. The logic of political economic value remains applied to bodies, dictating, as the main rule, the differentiation, exclusion, and marginalization of some over others.
In this context of restrictions, people's capacity to obtain, enjoy and sustain basic levels of well-being are permanently threatened, and health is one of the domains where vulnerability becomes critical. Economic, legal, ethnic, racialized and gender-related lines, among others, prevent equal access to healthcare, health rights, safety, and risk prevention at different stages of the life course.
However, despite such scenarios, individuals and communities constantly seek ways to navigate the margins, drawing on their resilience and different forms of socio-cultural capital to challenge constraints. How do groups act, advocate, and negotiate the barriers created between them and mainstream or institutional healthcare? In which ways do people utilize alternative therapeutic measures to optimize their sense of health and well-being? How do they express and narrate their somatic and social suffering?
This panel invites contributions that explore and critically examine alternative social action within the realm of health, especially from a lay or informal perspective. As a suggestion, possible topics could include: Somatic experiences of liminality, alternative therapeutic spaces as resources to navigate health marginalities, performative actions as health strategies, or lived experiences in times of medical uncertainties. Other submissions that address liminal spaces of healthcare are also welcome.
Accepted papers:
Session 1 Friday 14 April, 2023, -Paper short abstract:
In Brazil, Candomblé religious communities represent alternative spaces of healthcare, through healing rituals, social actions directed to vulnerable groups as well as denounce of ethno/racial and gender inequalities in the public health system.
Paper long abstract:
Based on an ethnographic study, I analyse how Candomblé communities develop forms of care, healing and assistance directed to their members (mostly Black and poor people, living in urban peripheries) and vulnerable groups, often filling the gaps and inefficiency of the Public Health System.
In Candomblé communities, preventive, diagnostic and therapeutic methods based on traditional African knowledge are employed, often in combination with herbal medicines, traditional medicines, alternative and complementary medicines, biomedicine and other religious treatments. Children, the elderly and people with disabilities are cared for, welcomed and protected. In case of health problems, the community gathers around the suffering person, making him/her feel its support, and offering advice and help.
The impacts of socioeconomic, ethno/racial, geographic and gender inequalities on health, vulnerability to certain diseases (such as HIV/AIDS and the Covid-19 pandemic) and the lack of public policies directed to treat health issues that affect specific groups (especially Black people) are denounced and made object of social actions, often in collaboration with the Public Health System, governmental agencies, non-governmental organizations, associations and social movements.
Candomblé communities reacted to the Covid-19 pandemic with campaigns of information, actions for preventing contagion and protect the most vulnerable, offering health, psychologic, spiritual, legal and economic assistance to the needy, while also denouncing the relationships between racism and vulnerability to Covid-19.
Paper short abstract:
Increasing immigration restrictions in the UK have been creating barriers to the NHS for many migrants and their families, who rely on alternative forms of medicine. This paper provides a critical examination of the role of Rastafari herbalists in healing the African Caribbean diaspora in London.
Paper long abstract:
As migrant and refugee populations expand around the world, healthcare systems are under pressure to meet growing demands for increasingly multicultural needs, with limited resources. Over the past decade increasing immigration restrictions in the UK have been creating barriers to the National Health Service for many migrants and their families. Yet while much of the anthropological work on migrant health focuses on access to biomedical care, migrants’ use of alternative medicine has received less scholarly attention. This paper will provide a critical examination of the role of Rastafari herbalists in healing the African Caribbean diaspora in London, as an ethnographic example of how migrant alternative medicine provides an important medium for anthropological explorations of the biopolitics of healing.
Central to Rastafari healing is a focus on cultivating health through the consumption of plants. This includes eating an Afrocentric plant-based diet, using sacred plants in meditation and divination, and taking herbal medicines. There is also widespread lack of trust in biomedical and (other) government authorities. Due to the fluidity of Caribbean spirituality Rastafari health practices are popular with members of the African Caribbean diaspora from all religious backgrounds. To a population that includes many members with irregular immigration status and relatively high levels of mistrust in health authorities, Rastafari healers offer an alternative, holistic approach to human, community and planetary health. The patchwork ethnography that I have conducted since 2011, suggests that this approach to healing is especially suited to addressing the harms of the ‘hostile environment’ by promoting health sovereignty.
Paper short abstract:
In Denmark, the welfare state has made solo living a structural possibility and a cultural value. In the context of increased focus on informal care 'at home', what kinds of vulnerabilities emerge when solo living citizens turn ill and dependent, and how are these new 'care borders' navigated?
Paper long abstract:
Still more people live alone, globally and in Denmark where a comprehensive welfare system has made it possible and culturally approved to make living arrangements independent of family and social relations, sustained by notions of an egalitarian individualism. The state is 'taking care' of basic needs such as healthcare when citizens fall ill. However, an increasing and politically driven focus on informal care and the home as a 'natural' site of care is changing the care terrains of the welfare state, most explicitly among people who have no 'natural carers' in their homes.
Departing in prolonged fieldwork, I explore how solo living elderly adults in cancer care navigate these shifting borders of care by looking at care as social exchanges among intimate others. Based on the empirical material, I analyse solo living as social reality; as something that is lived, felt and experienced, nor solely negative nor solely positive, but simply as a life circumstance or choice that becomes challenged in the context of serious illness and shifting healthcare terrains. With inspiration from exchange theory I address the dynamics between social relatedness, basic human vulnerability and care needs and practices. I show how solo living is a social endeavour; an individual and collective achievement that is continuously in progress and becomes very explicit when people face and negotiate care needs. The paper points towards and amplifies the shifting lines between the modern welfare state and fundamental human vulnerability that come to the fore when people become dependent while living independently
Paper short abstract:
The Icelandic government’s policy to left school primary healthcare largely inaccessible to students. Interviews with school nurses show ongoing issues faced with healthcare and the tactics used to battle increased pressures on the mainstream healthcare system as a result of the pandemic.
Paper long abstract:
One of the Sustainable Development Goals for health that aims to ensure equitable access to healthcare is primary healthcare. Schools serve as vital health institutions for adolescents, providing access to healthcare in their immediate surroundings in addition to serving as educational institutions. The Covid-19 pandemic brought unprecedented times of government public health interventions, often than not resulting in school closures, disruption of daily routines, intended to keep people safe and reduce the spread of the virus. Whilst multiple countries decided to close school operations, the Icelandic government’s primary aim was to keep educational institutions open, especially on the primary and secondary levels, which required imposed restrictions on services and activities. However, the need for healthcare staff at the forefront of the COVID-19 emergency response led to severe disruptions in primary health-related support students receive through the programme due to the nurses' absence during 2020 and 2021 as well as the additional pressures brought on by later variants.
The presentation is a part of a larger doctoral project examining the impact of the COVID-19 pandemic on adolescents in Iceland. Here, I will present themes from interviews conducted with school nurses in various parts of Iceland between November 2020 and June 2022. Major themes will be discussed, namely struggles with providing routine health care for students during governmental restrictions and the strategies used to provide healthcare support to minors during precarious times as the mainstream mental healthcare system becomes more pressured and waiting lists lengthen.
Paper short abstract:
I bring together the concepts of lay expertise and cultural health capital in my analysis of ethnographic observations with mothers of children with Congenital Zika Syndrome in Colombia, to demonstrate their agency and resilience in negotiating health care access on behalf of their children.
Paper long abstract:
Mothers are most commonly the primary caregivers for children with Congenital Zika Syndrome in Colombia. They navigate health systems on behalf of their children and frequently struggle to gain timely access to high quality routine appointments, investigative and diagnostic testing, and therapies for them. This work is highly gendered, and their low socio-economic status intersects with the complex disabilities of their child and for some, their status as migrants, to create a great deal of uncertainty and exclusion. With years of experience, they have become lay experts at navigating health systems and negotiating access to services. In the existing literature on health system navigation, the agency of patients and carers is neglected; their responses to barriers are rarely reported. Drawing on 10 months of ethnographic fieldwork, I will discuss the diverse strategies that these mothers use to navigate and negotiate health care access. Bringing together Madden’s (2015) conceptualisation of cultural health capital with the notion of ‘lay expertise’ enables me to highlight their agency and resilience. They work within systems by escalating their complaints to senior staff or higher offices, seeking referrals to alternative providers, or engaging in legal proceedings. They also go outside of official channels and find unconventional and creative routes to desired outcomes, using deception or stubbornness, deliberately modifying how they speak or act in order to be taken seriously, drawing on personal contacts, and calling in reinforcements. These strategies reflect the cultural health capital that these mothers have acquired since the births of their children.
Paper short abstract:
The following work aims to analyse different forms and expressions of popular and traditional medicine that arise in contexts of international displacement, especially to compensate for the absence of equitable healthcare. It is based on the health experiences of Latin American migrants in Spain.
Paper long abstract:
Managing and controlling international migration is undoubtedly one of the main concerns within the international agenda, especially in terms of civil and political rights. Regarding health, governmental response to large population flows —especially in the Global North— still represents great limitations, failing (accidentally or deliberately) to provide adequate, egalitarian, and affordable care to those people who do not qualify within the legal/normative schemes of citizenship.
Faced with this scenery of structural inequality and administrative abandonment, migrant populations resort to numerous self-managed practices, community assistance networks and informal structures (both local and transnational) to share/distribute medical goods and knowledge, hoping to solve or palliating their health problems. The following work aims to analyse different forms and expressions of popular medicine that arise in contexts of international displacement, especially to compensate for the absence of equitable healthcare. Based on cultural principles of cooperation and reciprocity, the importance of such initiatives is not only pragmatic in terms of their ability to resolve ailments but also represents a source of consolation and mutual support, re-establishing the feeling of social and civic belonging.
The material and reflections here presented derive from ethnographic research on the health/disease/care-neglect processes of Latin American people living in Spain, focusing particularly on the continuity of traditional healing practices and the health identities forged around the concepts of inheritance, memory, and resistance.
Paper short abstract:
This paper explores how people find ways to manage the uncertainty that can emerge from a diagnosis of cancer risk. Through the care provided by virtual support groups, a diagnosis that once provoked fear for many can come to generate hope for those who learn to trust the biomedical imaginary.
Paper long abstract:
Drawing on ethnographic fieldwork in the UK, this paper explores how people find ways to manage the liminality that emerges from a diagnosis of cancer risk. For many, a diagnosis of Barrett’s oesophagus, a risk state for oesophageal cancer, initially provokes fear and uncertainty. This fear manifests in their practices – some lose sleep, become acutely aware of their bodily sensations, or consumed by thoughts of a cancerous future. I explore how people manage this fear through informal care in the form of virtual support groups. Here, people learn to live with the uncertainty of a life lived ‘at risk’. While a diagnosis of risk often induces fear, with this support, it can be transformed into a reason for hope. ‘You’re one of the lucky ones’, members of the group explain to the newly diagnosed, highlighting that their diagnosis means their risk is now being reduced and ‘we're unlikely to get it and, in that rare case where someone does, it will be found soon enough to be removed.’ Through eighteen months of ethnographic fieldwork in support groups for ‘Barrett’s patients’, we see uncertain futures become increasingly certain through a belief in the promise of early detection and the biomedical imaginary. With this, risk diagnoses that once provoked fear can generate hope. The paper raises questions about what it means to provide ‘care’ in the context of increasingly risk-centred medicine, as well as who is responsible for providing care, particularly in the context of unprecedented pressures on healthcare systems globally.
Paper short abstract:
This paper reflects on the use of action-research as a tool to foster participation for health promotion, both in the process of generating knowledge on the local factors that affect health inequalities, and in engaging a diversity of voices in the discussion on the possible actions to address them.
Paper long abstract:
This paper aims to reflect on the use of action-research as a tool to create a participatory field in the context of health promotion. The reflection is based on an action-research project conducted from 2017 to 2022 in Bologna (Italy), aiming to explore the distribution of health inequalities in the city and support actions to tackle them. Combining phases of quantitative and qualitative research, the project unveiled relevant differences in health outcomes throughout the city.
Since the beginning of the qualitative phase coincided with the Covid-19 pandemic’s outbreak (Feb. 2020), the fieldwork had to be reconfigured. On one hand, the use of digital tools allowed the group to create and maintain links with local actors, on the other, it undermined the potential of collective action and reflection at the core of action-research approaches. Nevertheless, the data collected have been shared with key community actors living and/or working in the city areas that are most exposed to inequalities. In later stages, some of them have been involved in discussing which actions could be implemented to promote health and equity in their neighbourhoods.
Building participatory spaces of collective discussion on the local factors that affect health inequalities, and the possible actions to address them, proved to be a key potential of the action-research process. Managing power within such spaces, particularly to promote the engagement of the voices that are most marginalised (or silenced) and on issues that truly matter for their health, is among the greatest challenges that need to be faced.