Paper short abstract:

People with profound and multiple learning disabilities form a marginalised minority in the UK, whose lives’ value is often questioned due to their limited physical and cognitive capabilities. My research demonstrates the tensions in the de/construction of personhood perpetuating this phenomenon.

Paper long abstract:

My fieldwork at a special school among children with complex disabilities has explored the tensions surrounding the de/construction of personhood. The value of one’s life rests on being recognised as a person. The Covid-pandemic resulted in a marked increase of do-not-resuscitate (DNR) orders for individuals with learning disabilities.

Counter to the commonly accepted notion of personhood, which emphasises cognitive capacity, communication skills and independent agency, this paper favours a relational view of personhood. Personhood can be experienced as continuously re/constituted in interactions between people as well as between people and environment. This was evident during my fieldwork while experiencing laughter, tears, excitement, resistance, warmth, curiosity as well as boredom among the children and staff. These direct interactions stood in stark contrast to their parents’ accounts of having to document dys/functions of their children’s disabled bodies and minds with the purpose of fitting these into pre-conceived categories, used to validate specific amounts of service hours and financial support. Time and again they lamented the fact that they could not openly acknowledge the joyful aspects of life, so as not to disturb the prominent and expected image of suffering and tragedy associated with disability.

This structural vulnerability is upheld by the web-like bureaucratic systems of education, health and social care providers, leading to a fractured sense of belonging and identity for entire families. Paradoxically, parents have to purposefully break those ‘delicate plates’ that carry their children’s personhoods, in order to secure support to nourish and sustain this essential aspect of life.

Paper short abstract:

Autistic migrants encounter challenges navigating the UK’s migration and healthcare systems, facing cultural barriers and insufficient support. This research examines the intersection of autism and migration, highlighting overlooked experiences and proposing pathways for more inclusive systems.

Paper long abstract:

Imagine an autistic migrant navigating the UK’s healthcare and immigration systems. Arriving from a non-Western country in search of a better life and a sense of belonging, they encounter not only cultural and linguistic barriers but also the challenge of seeking an autism diagnosis in a system often unprepared to address their intersecting needs. The dual burden of being labelled as both a migrant and autistic creates a complex experience of multiple otherness, bringing moments of unexpected insight as well as disadvantages. These layered struggles highlight the unique experiences of autistic migrants, a group often overlooked in social sciences research.

With 280 million international migrants worldwide and a notable rise in adult autism diagnoses across the Western world, there is an urgent need to explore the intersection of these identities. Despite the extensive literature on migration and autism separately, little attention has been given to autistic migrants, particularly regarding how the categories of “migrant” and “autistic” are constructed and affect life experiences across communities, migration, and medical settings.

Rooted in medical anthropology, sociology, and empirical ethics, this research draws on decolonial feminist theorists María Lugones and Mariana Ortega. By embracing multilayered subjectivities, the paper interrogates the ethical, social, and political implications of categorisation and provides practical recommendations for more inclusive healthcare and migration systems. Ultimately, the research seeks to contribute to a nuanced understanding of marginalised populations' health and well-being in an era of globalisation and rising social intolerance, drawing inspiration from philosophies of the Global South.

Paper short abstract:

Access to health care is often conceptualized using functionalist or systemic perspectives. We propose adding a constructivist perspective (Candidacy), showing how access is produced in negotiations between multiple agents, integrating macro, meso, and micro levels.

Paper long abstract:

Access to healthcare is a driving mechanism of inequity in health. Inequitable access occurs when access varies according to personal and social attributes rather than the need for care. For many people with severe mental health issues, social and health problems are inextricably connected, as are the needs for care.

Previously, access to care was viewed as a functional attribute of health services, ensuring that services can be accessed or utilised by those requiring care. Today, much of health service literature conceptualize access from a systemic perspective, including structural features of the health care system (e.g., availability, affordability, etc.) and features of individuals (predisposing and enabling factors).

In this paper, we study how access is perceived and experienced in the case of integrated health and social care services targeting people with severe mental illness. Building on one year of interviews and observations of interactions between health care professionals and people with mental illness, we explore how access is an arena for negotiating eligibility. These negotiations draw on categorizations from the policy level (e.g., the definition of the target group) and institutional norms (e.g., professional understandings), and individual perceptions of eligibility. Analytically, we apply the concept of ‘Candidacy’, arguing that this conceptual lens can enhance the anthropological analysis of the social processes of constructing access to care. Candidacy adds to the understanding of access highlighting the interrelated processes at policy, institutional, and micro level, which determine who is eligible for care and when.

Paper short abstract:

Building on data from more than 25 years of research on female genital cutting, I will discuss Somali and Sudanese women's experiences with health care providers in Norway, regarding health conditions that may be caused by their genital cutting. I will also provide some provider perspectives.

Paper long abstract:

Among Somali and Sudanese women, the prevalence of the most severe forms of female genital cutting is common, i.e. a form by which specialized health care is often needed, including surgical procedures to facilitate menstruation, sexual intercourse, and childbirth. This practice of FGC, commonly referred to as pharaonic, is traditionally closely linked to ideas of identity, morality and womanhood. In Norway, as in other exile countries, they encounter societies and laws condemning the practice, and that tend to focus more on steps to abolish the practice, than on providing health care to girls and women suffering its consequences. Somali immigrants are in addition subjected to exposed to strong negative stereotypes, on this practice, as well as a host of other aspects of their life, such as lack of education and employment, religion, and gender roles in general.

In this paper I will present how Somali women in particular, experience and maneuver in their search for health care in such a setting, what they are missing, how they feel met and the care that they get, or don’t get. I will also present some of the challenges experienced by health care providers. I will also include some reflections on the researcher’s positionality, built on experiences from both personal data collection as an ethnic Norwegian researcher, and working with Somali and Sudanese research assistants.

The paper is based on several studies over a period of more than 25 years, mostly among Somali immigrants in Norway, but also some of Sudanese origin.

Paper short abstract:

This paper introduces “passages” to explore how spaces can permit otherwise restricted behaviours among marginalised individuals with severe mental illness and substance use in residential psychiatry in Denmark.

Paper long abstract:

This paper investigates “passages” to examine how certain spaces allow ways of life that are otherwise restricted. Drawing on ethnographic fieldwork in a Danish residential facility, I explore how actions typically considered out of order – like playing instruments at the doctor’s office - or criminal—like using illicit substances—in certain spaces are allowed to “pass” through the tacit tolerance of staff and police officers. I draw on feminist scholar Sara Ahmed (2007), who explains how spaces are oriented toward certain bodies, as seen when some bodies pass unnoticed while others are held back. We propose “passages” as fluctuating spaces where individuals and actions that usually do not pass unnoticed are suddenly allowed to pass.

Thus, this framework helps understand how healthcare spaces are oriented toward specific bodies, making it difficult for marginalized individuals to pass or be fully recognized. This includes cross-sectional issues within healthcare, when certain behaviour and marginalized bodies are prevented from passing through institutional healthcare unless conforming to its standards, yet simultaneously allowed to “pass” within residential care. We highlight how healthcare provision unfolds within a space of exception, questioning the boundaries of formal healthcare and the meaning of “passing” within these frameworks.

Paper short abstract:

This ethnographic study address the research gap/ neglect on how health services create adaptations to culturally and linguistically more diverse patient populations in Norway, investigated how interpreters, health professional and patients are communicating in a Cardiac Care Class.

Paper long abstract:

The Norwegian healthcare system emphasizes equity and universal access to healthcare services: Equity in health implies “equal access to available care for equal need, equal utilization for equal need, equal quality of care for all”. Cardiovascular diseases, including heart infarction, are common causes of death in Norway (23% of all deaths in 2022). There is robust evidence that participation in cardiac rehabilitation, with patient education and physical exercise as core components, significantly increases quality of life and reduces mortality and cardiovascular morbidity for heart infarction survivors. With globalization, Norway's population has grown more linguistically diverse. .

Methods: Making use of ethnographic/ participants observation in the Cardiac Care Class followed by interviews with healthcare professionals, patients, and interpreters in 2022–2023 within a Norwegian hospital in a region with a mixed population and regularly receives Limited Norwegian proficiency. The multidisciplinary team of five researchers/authors were not affiliated with the hospital

Providing interpreting in Cardiac Care Class required organizational, logistical, and pedagogical adaptations, including, engaging qualified interpreters, conducting pre-class meetings with the interpreters, and adjusting the course content and language. Making use of interpreter create dialogue and stimulate questions from patients, engagement and reveal the importance of discuss life style changes with peers and health professionals. In addition making use of individual interpretations and health professional supervision in group training sessions create a in depth focus om body pain, anxiety of moving the body. The information, reflections, training activity and the dialogue in class creates spaces for improving mastering the cardiac condition.

Paper short abstract:

This paper explores the notion of 'embodied memory', using ethnographic vignettes of COVID vaccination, to reflect on the challenges of working collaboratively with Gypsy, Traveller and Roma communities in England, in upholding their claims to state and citizenship ‘at the margins of the state’.

Paper long abstract:

Recently, the long history of political and legal persecution and marginalisation of people of Romani, Gypsy, Traveller and Roma heritages is increasingly being recognised within the broader literature on historical trauma and the Holocaust. Borrowing Fassin’s notion of ‘embodied memory’ (2008), this paper explores the potential links between historical trauma and the enduring, intergenerational physical and mental health inequities faced by children and adults of Gypsy, Traveller and Roma heritage, as compared to all other minorities in the UK.

An ethnographic study of COVID vaccination from North England is used to draw out the challenges of working collaboratively with a community organisation, documenting the claims of research participants to state, health and citizenship made ‘at the margins of the state’ within quotidian contexts (Das and Poole, 2004). We appreciate why the boundaries between health and disease, ill-health and wellbeing might be fragile. We analyse the impact of enduring stigma, racialisation and discrimination faced by families related to their culture, surnames and postcodes identifying them as living on a ‘(caravan) site’. Finally, the paper reflects on some of the challenges of finding solutions for addressing known health inequalities, especially when it comes to lack of trust in state and its bureaucratic methods of enumeration (census and NHS surveys) for identifying and classifying people by their ethnic and religious affiliation; reminding medical anthropologists, yet again, of the complex boundaries of 'community' that we must navigate in practice.

Paper short abstract:

The following contribution is the result of exploratory ethnographic research conducted in the Northern regions of Great Britain, delving into the health perceptions and lived events of care/neglect that result from the immigration process, cultural differences, and other contextual aspects.

Paper long abstract:

This presentation explores and analyses the health-seeking patterns of Latin American migrants in Britain, including types of healthcare practices exercised and preferred modes of resolving ailments. Multiple reports by various organisations warn about the high levels of inequality and vulnerabilities faced by the Latin American population in the UK, which have been exacerbated by the latest migration policies, the global economic recession, the COVID-19 pandemic and Brexit. In terms of health and well-being, a large proportion of this group struggles with access to healthcare provision, with overall poor outcomes in mental health and exclusion from social protection services.

Despite the inequalities faced, this population group has been widely ignored by both governmental welfare policies and scientific literature, with no official recognition as an ethnic minority and most of the health-related studies focusing solely on infectious disease burden and epidemiological statistics. Previous qualitative research has examined the conditions and needs of the Latin communities in the English capital, but there is still a need to further explore the experiences of those who are settled outside the Metropolitan area of London.

The following contribution is the result of exploratory ethnographic research conducted in the Northern regions of Great Britain, delving into the health perceptions and lived events of care/neglect that result from the immigration process, cultural differences, and other contextual aspects.