AGENET @ EASA 2022

The 17th EASA Biennial Conference entitled Transformation, Hope and the Commons was organized as a hybrid event on 26-29 July, 2022 at the School of History, Anthropology, Philosophy and Politics at Queen’s University Belfast. In the AGENET Guide for the EASA 2022, circulated before the conference, we have highligted a set of panels and labs definitely of interest to the AGENET members. For those of you who could not attend the conference, here is a brief overview of some of these events.


LAB

LAB 12 Living with Dementia at the time of COVID-19 Pandemic: Exploring Creative Ethnographies in a Residential Structure for Elderly People. Lab organizers: Martina Laganà (Università del Piemonte Orientale), Gloria Frisone (Università degli Studi di Milano Bicocca) and Maria Virginia Moratti (Università degli Studi di Torino)

This workshop aimed to develop inclusive forms of participatory action-research that potentially integrate point of view  of people with Dementia. If cultural anthropology has traditionally highlighted the actors’ “emic” perspective through ethnographic fieldwork, to develop the real participation of individuals with dementia we need to experiment with other creative tools. 

From this basis, in our experimental laboratory participants was guided using drawing to reworking the life stories of patients with dementia. These stories was previously collected in a nursing home in Northern Italy, by the convenors Martina Laganà and Gloria Frisone, medical anthropologists and ethnographic researchers. In these phases the classic methodologic frame of ethnography had been already enriched with visual materials, such as photos, drawings, inspirational sketches and mood boards (1 for each character). Moreover, the third convenor Maria Virginia Moratti, anthropologist and illustrator, started to deepen the illustration of each character.

By Maria Virginia Moratti
By Maria Virginia Moratti
By Maria Virginia Moratti

Before the Lab, materials collected had been shared with lab participants (bio narratives, pictures, and rough illustrations, not the analog drawings). This step allowed the participants to express a previous choice about the story they want to work on. 

The lab itself was been structured into two practical exercises and a final discussion. First, the Analog Drawing: participants and convenors drew some key concepts (time, space, entanglements, isolation) that emerge from the ethnographies and discussed similarities and differences between their drawings. Second, the Analog Portrait: participants drew the portrait of a chosen elderly resident (after reading his/her life story); this portrait did not reproduce the person him/herself, but the participants’ insight, their “seeing into the person”.  You find examples of it below with comments from the participants:

“I’ve chosen an irregular frame with things escaping from the frame because they just escape from memory. I also include elements that repeat themselves, elements trying to contain those, but they are still interrupted […]So: repetitions, things get lost, interruptions and containment […] I have drawn repetitious forms across the page, that seem to interrupt other lines of thought and have no order at times, but are finding their place in different orders at others, but find their place in different orders at others […] I have tried to capture some of the contradictions of dementia: past and present, fragmentation and coherence can exist simultaneously”.

One participant’s analogue portrait of Ernestina

“It’s sort of the nursing home and you have him with his broad shoulders and his confusion. I’ve called it Traveling through Memories, Time, and Confusions. Here, you have sort of the dark issues, like the black hole he’s talking about, but also the bright light of doing heroin, you have sort of his ex-fiancee who killed herself, the military in and out the hospital, the barracks, the doors, hand then, here, sort of travelling around all of it all the time.”

One participant’s analogue portrait of Ernestina

She’s quite a straightforward person when referring to her own opinions, so I draw just a line like this, like a mouth, and she’s institutionalised. She realizes that nobody takes care of her because everybody’s on a mask and she has lost the one, her husband, the one that was taking care of her, and she misses the action of doing something for having her own life so I just draw something like a hand and she can’t have her own fingers, and this is a dream institutionalised as most of the dementia people are …”

One participant’s analogue portrait of Andrea

The final discussion would have involved translating each drawing into words, taking into account the four initial themes (time, space, interweaving, isolation). Unfortunately, time passed more quickly than expected. We then asked the participants to share their graphic proposals and written interpretations with the network of participants.

Finally, according to our preliminary intention to include people with dementia from the beginning to the end of the fieldwork, our real aim was to organise a social event to share tRaggruppaheir graphic novels with the elderly residents. The aim of this give-back is to involve the elderly in reconstructing their autobiographical stories into graphic novels, enabling them to express their feedback. We are waiting for permission to develop this last phase. For the time being, the rich reflections and promising contributions of the participants’ network allow us to draw some noteworthy conclusions, both methodologically and theoretically. 

In general, analogue drawings and portraits could facilitate the inclusion of research participants in the anthropological knowledge process, making them accessible to the reconstruction of ethnographic materials. More specifically, these permanent artefacts aim to make the ageist representation of dementia as a form of mental decline, passivity and loss of self different. Finally, similar work could also explore the possibility of subverting the subaltern conditions of the elderly and develop the hope of imagining people with dementia simply as human beings who can live a good life.


PANELS

Pandemic, care and ageing.Transformations and challenges in later life care in times of Covid. Panel organizers: Carlos Chirinos (Rovira i Virgili University), Ana Lucía Hernández Cordero (University of Zaragoza)

Social care, particularly of the elderly, has little influence in political and cultural spheres (Daly, 2020). The pandemic has merely made this structural problem visible, and aggravated the care crisis. In many societies, the care of the elderly still lies with families, especially women, around whom there is a whole range of resources and care agents such as day centres, home care services, and female foreign workers. This “mosaic of care” (Soronellas and Comas-d’Argemir, 2017), constructed on the basis of the family, means that this practice is understood as a collective, proximate effort in terms of space and belonging. The onset of the pandemic has disrupted this sense of daily care of the elderly in a common space. It has altered care strategies in the personal environment, and redefined participation and spaces.

At the EASA conference, we have been able to discuss this issue from different perspectives and national contexts (Latvia, Slovakia and Spain), paying attention to the diversity of agents and spaces related to the family, as well as the complexity that the pandemic has triggered both in the social perception of the elderly and in their relationships with their relatives and the state. We have counted on the participation of researchers with experience in the field of care for dependent persons: Maria Offenhenden, Montserrat Soronellas Masdeu, Yolanda Bodoque-Puerta and Julia Chrétien Kindelberger (Universitat Rovira i Virgili, Spain), Sona Gyarfas Lutherova and Lubica Volanska (Slovak Academy of Sciences, Slovakia), Anna Žabicka (University of Vienna, Switzerland).

Covid-19 has reinforced the household as a care space, conditioning and modifying families’ strategies of care provision. A re-familiarisation of care work has been identified, that is, the family as the main care provider, and a reorientation of public policies towards a more de-institutionalised system, which privileges the home as a care space.

Presentations have shown us that during the Covid-19 pandemic the elderly were identified as the most vulnerable social group. The overly unified and oversimplified image placed them between contradictory tendencies: condescending control on the one hand, and indifference to their needs and perspectives on the other. Simultaneously, there was the crisis of responsibility: the state abdicated duties of care for the dependent members of society, while being excessively intrusive and patronising towards the “vulnerable”. These contradictory trends left the elderly in a precarious position: left to their own devices and dependence on informal ties, and thus unable to make autonomous decisions.

At the same time, the panel reflected the challenges of covid-19 with regard to care and social connection and bonding. Many people used the pandemic as a means to channel and explain their frustrations, such as isolation, loneliness and lack of belonging, which existed before the pandemic and included broader socio-economic issues and ideas of what kindship should morally look like. This has impacted unresolved questions about imagined kinship relations and the role of the state in their re-creation.

A final reflection of this panel leads us to think about the social categories that impact on dependency care. Gender, like social class and nationality, are axes of inequality that explain the assignment of women to care tasks; sexual orientation, as a political regime, also helps in understanding the weight of the family, as an institution, in the social organisation of care. Therefore, analysing the specific responsibility of care that adult lesbians face within families because they live outside the hegemonic model contributes to the social debate.


PAPERS (from panels on more generic topics)

Elderly rights and the nursing homes’ crisis in Spain during the pandemic: claims for
justice and politicization of care
. Paper by Sílvia Bofill-Poch (University of Barcelona),
and Raúl Márquez (University of Barcelona), which was part of the panel Emotions and the power of care. Sensing, judging, or rejecting asymmetric encounters.

This presentation is part of a larger project called CUMADE (Care matters. Gender impact on caregivers of elderly and dependent people in times of Covid-19), a project on the impact of Covid-19 on social care in Spain (2020-21). It was funded by the Covid-19 FUND (Fondo Supera Covid) and was leaded by Dolors Comas-d’Argemir (URV), with the participation of ten Spanish universities. The results of the project have been recently published as a book.1 This project found continuity under the project called CAREMODEL (The Long-term Care Model in Transition: political, family and community strategies to face the consequences of the Covid-19 pandemic) leaded by Montserrat Soronellas and Yolanda Bodoque (URV) which analyzes the impact of pandemic on the long-term care system in Spain (2021-2024).
A central part of the project looks at the impact COVID has had on Care Homes for older people and their staff, including residents’ relatives. Fieldwork was conducted between July 2020 and March 2021, by virtual means. We interviewed managers, care-giving staff and support staff from for-profit and non-for-profit providers of all sizes. We also interviewed families of residents. For the purpose of this paper, we focus on relatives, their experience and perceptions, and particularly, on their claims for justice as a reaction to what they consider the inefficient and excluding measures taken by the authorities to respond to Covid-19 pandemic, affecting human rights of the care home residents. According to a literature on emotions, construction of the public sphere and political commitment (Jaspers, 1998, 2014; Freire, 2011) our paper deals with the emotions that shape claims and political engagement. By looking at the compelling dimension of affections, we sustain that families became actual agents for the politicization of care.
Spain is one of the countries with the highest Covid mortality and infection rates in the EU. According to official data (IMSERSO), as of March 2021, one year after the state of alarm was decreed in Spain, 30.000 people had died from Covid-19 or compatible symptoms in care homes (representing 42% of the total deaths). As Mary Daly points out in her critical examination of the Care Homes’ crisis in the UK and Europe, there are structural factors that explain these high mortality rates. There are also political and sociocultural factors related to the lack of recognition of social care. In the case of Spain, we could identify the historical public underfunding of the sector, staff shortage, job insecurity and the increasing privatization of services. A decade of health and social cutbacks has undermined the public health care system, deteriorating access, affordability and quality services. The effects of the dismantling of the public health care system haven been felt in the care of older people in residential homes in several ways. Many of the care home residents did not have adequate health assistance, were excluded from referrals to hospitals, and did not receive the assistance they needed in the care homes either. In addition, many care homes residents were virtually cut off from the outside world and their families for weeks. The truth is that the Health system collapsed and assistance to Care homes was left aside. Hospital access was restricted to those who came from nursing homes, and people who could have continued to live were left to die. As stated in our project, care homes were politically and epidemiologically ignored at the start of the pandemic.
The pandemic led to very complex situations to manage for all the staff working in care homes; it exposed residents to situations they had never experienced before and confronted their families with very difficult emotional situations. Families felt pain, but also rage and indignation. It is not only that many people died, it is the way how they died, in solitude, without proper medical assistance and not being transferred to hospitals. That acting as a critical event, as stated by Fabio Araújo (2007), pushing or compelling relatives to the political action.
In this context, families react by joining civil platforms and family groups (it is worth saying that most of them are daughters): a) they promote acts of protest in public sphere and resort to the media, to make visible what remained invisible, calling for political assumption of responsibilities and independent public inquiries. They demand moral reparation and restoration of dignity to the dead; b) they file (individual and collective) lawsuits against the government and the care homes managers, alleging omission of the duty of assistance; denial of aid and reckless homicide; and degrading treatment; c) they are absolutely convinced that human rights have been violated, leading to social exclusion; d) and finally, they present a broad agenda of political claims, urging the government to transform the residential model and the long-term care system.
Through protest and lawsuits, suffering becomes politicized (exhibited in the public arena) in order to be assumed as a social and political conflict. Self-identified under the political category of “relatives of care-home residents affected by Covid-19”, families assumed political engagement as a moral duty of reparation, primarily urging the government to morally repair families and restore the dignity of the dead. They call for the “value of their lives”, as opposed to what they consider undignified, discriminatory and exclusive treatment. This engage a duty of memory (deaths must be remembered, in order to reestablish the normal order and to take some lessons from the pandemic). So, dignity restoration and the duty of memory (kinship) appear as the moral foundation for the vindication of rights. These compelling feelings, which lead to political engagement, could be understood as a continuity of the moral duty of care, which remains after death.
The civil platforms in Spain demanding for changes in the residential model are not new. In fact, they emerged more than ten years ago as a result of cuts and austerity policies and their effects on public care-home services. We could say that the pandemic exacerbated and catalyzed a discontent that came from afar. It dramatically showed the effects of more than a decade of public disinvestment in the residential sector and managing privatization. In the context of the Covid crisis that strains the social and health care systems to the maximum, families present themselves as having political agency, being able to vindicate care rights for the elderly. Thus, they become agents of politicization of care, as:

  • they critically question residential and long-term care model in Spain,
  • they show the (excluding) effects of inefficient measures taken by the authorities to respond to Covid-19 pandemic,
  • they point out the causes that lead to what they consider undignified and discriminatory treatment of older people,
  • and finally they call for an institutional representation and their real participation in decision-making instances.


In short, they transform complaints about care homes into a vindication of rights and dignity, into a political and civic issue. In this process, affections are constitutive of the principles of justice that lead to political engagement.