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Learning from my sister. Towards a queerer ethics of care?

Panelist: Fanny Ambjörnsson

My sister Nadja was born severely disabled. She was unable to make any conscious movements and was dependent on round-the-clock assistance. In some cases, she had trouble breathing on her own. Nor could she see anything, but she could hear well. She loved music and rhymes and enjoyed wild weather. Over the years, she developed a rare ability to form close relationships as well as receiving care. 

In a personal biography of Nadja, I used feminist ethics of care to describe her everyday life (Ambjörnsson 2021). Drawing on Eva Feder Kittay (2019), I discussed the practical dimensions of care and the interdependence between Nadja and her assistants as a prerequisite for her subjectivity and existence. But I also employed queer temporal theories, where a critical perspective on normative development makes room for lives lived sideways and beyond the expected lifeline (Halberstam 2005, Stockton 2009, Freeman 2010). Both of these theoretical strands - the feminist care perspective and queer theories of temporality - were thus needed to understand a life like Nadja's. In this paper I would like to delve further into what a meeting between these two, sometimes seemingly contradictory, theoretical approaches can yield, based on the example of Nadja. In particular, I want to explore what happens when the queer temporality in which the care recipient lives her life is brought together with the circular rhythm of care. 

“Mormodern har icke kunnat förmås att släppa henne” – Death at the Boarding School for Children with intellectual disabilities in Rickomberga, Uppsala, during the early twentieth century

Panelist: Rikard Friberg von Sydow

The title for this paper – “mormodern har icke kunnat förmås att släppa henne” can roughly be translated to “the grandmother has not been convinced to let her go” and is a quotation from a letter sent from the municipality of Elfkarleby to “Uppsala Läns Idiot-anstalt” who runned a boarding school for children with intellectual disabilities in Rickomberga in Uppsala. The municipality cared for a girl, ”Febe B.” who they wanted to send to the boarding school, but her grandmother would not let her go. For a long time the municipality had tried to persuade the grandmother and now she had finally given in. Febe B, were sent to Rickomberga in 1910 and died two years later of broncopneumonia in the care of the school. There were a number of children that died at the Boarding school for Children with intellectual disability in Rickomberga during the early twentieth century. In my paper I will try to describe these children through their “Death-world” – “Todeswelt”, a theory constructed with inspiration from the phenomenological concept of “Lifeworld”/”Lebenswelt”. Who were these children, who cared for them and who buried them – and what can we know about all of this today when only the archives can tell us their stories? 

If it Works, We Might Become Like Sisters: Moving Beyond Professional Care Relationships

Panelist: Ella Hillström

This paper explores the edge between friendship and care labor based on my experience working as a ‘personal assistant’ in Sweden for “Lisa”. Within the personal assistant model, the person with disability is the employer. They set the salary and the working conditions. They also set the parameters of intimacy. Lisa was calling for a form of care that could go beyond employer-employee relationships toward a sister-like relationship. From that starting point, this essay investigates the formation of more-than relationships within institutionalized sites of care and considers its politically transformative potential, whilst at the same time navigating the violence and problematics of care in relation to disability justice (Murphy, 2015). Located within critical disability studies and anthropology, the essay uses auto-ethnographic accounts, choreography, and video to explore some of the themes. 

Patient practices of care in the migration clinic

Panelist: Jonathan Krämer

In this paper I will discuss practices of care and support among prospective labor migrants undergoing mandatory medical exams in Indonesia. The process of examination at what I call the migration clinic is commonly centered on gender-separated groups of prospective migrants, who jointly move through the various steps involved, from registration and several waiting periods to laboratory, radiological, and physical examinations. Throughout this process conversations among group members, humor, directing gestures and other forms of interaction play an important role both in structuring migrants’ move through the clinic and in alleviating their stress and insecurities. At the same time, the clinic’s waiting areas provide a space of encounter where migrants from different groups mingle, sharing advice and experiences. Thus, such practices emerge as a form of mutual care and support among migrants at a moment that proves decisive for the subsequent migration process. I will situate these practices within the larger context of the contemporary Asian migration regime in which the migration clinic forms a central node, where the regulation of migrant bodies and mobilities is realized, and in relation to the status of biomedical healthcare and diagnostic practices in rural Indonesia. 

Reframing the International Crisis of Trust in Healthcare: Risk and Mistrust in primary care in Italy in the aftermath of the COVID-19 pandemic

Panelist: Mirko Pasquini

Trust in healthcare authorities in many parts of the world is in serious crisis. Reasons for this crisis range from the skyrocketing costs of healthcare; a growing reliance on expensive medical technology; and the pervasiveness of for-profit healthcare. By incorporating mistrust as a productive element, the paper problematizes the debate on the international crisis of trust in the healthcare sector, that sees mistrust as a lack of, or an opposite of trust. It does so by exploring how dynamics of mistrust both impede care and facilitate it in general medical practice in Italy in the aftermath of COVID-19. Patients’ mistrust toward General Practitioners (GPs) is increasingly the object of public debate in Italy, as general practice has recently been the center of intense media scrutiny, as a result of COVID-19. GPs have been accused by multiple parties of having failed their gatekeeping role during the first and second wave of the COVID-19, with disastrous repercussion for patients’ health and hospital overcrowding rates. At the center of the Italian Recovery plan with European founds – the most ambitious plan of reforms in Italy since the Marshall plan after the second world war – GPs seem to feel increasingly disregarded by state authorities, by their patients and by their peers working in hospital facilities. Unsurprisingly, the pandemic also established an unprecedented record of litigation cases and violence against GPs. In this tense climate, mistrust in daily care interactions is becoming more the rule than the exception. 

Trauma-therapy for refugees: a part of the integration dispositive?

Panelist: Mayssa Rekhis

Based on an ethnography of a trauma-therapy center for refugees in Sweden, the paper focuses on the (im)possibilities of suffering and healing in forced exile. The imperative of integration, central in the administration of migrants and refugees in Europe nowadays, has infused improbable spaces such as clinics and psychotherapy rooms, while supposed to be dedicated exclusively to care and healing. It is not only influencing the practices but also changing what the “therapeutic” means.  

The definition of healing seems to transform into integration for the racialized populations in exile, and the therapy becomes a path accompanying them in their transformation into “good integrated deserving refugees”.  I will explore how the meaning of psychological recovery is easily transformed into fulfilling the criteria of the etablering program (The Swedish integration program for newcomers), and how the violence of this program infiltrates the care, despite efforts to “resist” or mediate it.  

In these new contexts, patients and therapists alike find themselves navigating a reality where different forces, and forms of power and violence, become part of the exiles’ every day.  And therapeutic spaces will then try to keep a grassroots ethos of healing, while attempting to resist “a broken integration system” that also infuses their own walls and practices. 

Credibility Deficits and Objectification in Healthcare Encounters

Panelist: Elin Wallner

This working paper explores patients’ experiences of (not) being treated as credible knowledge subjects in encounters with healthcare professionals. The encounters regard reproductive, sexual and hormonal health (mainly pregnancy or birth related issues, endometriosis and/or vulvodynia). The material is collected through ethnographic in-depth interviews with patients who identify as women or nonbinary. Through a phenomenological perspective, and adding the moral philosophical concept of epistemic injustice (Fricker 2007) – and especially the sub concept epistemic objectification – I analyse how the patients experience to be met as healthcare objects rather than knowing subjects. The patients share experiences of being overlooked as bearers of relevant information in various ways, as they try to communicate their opinions, interpretations, or reports of bodily sensations. This, in regards of not being able to speak to begin with, being silenced in various ways, having their testimonies ignored or disregarded, or having their testimonies dismissed and questioned. I suggest that such experiences – and meaning-makings of such experiences – are influenced by normative and culturally dependent conceptions about credibility and competence as well as (e.g. gendered) structures of power and biases permeating care contexts.