[Excerpt from “Activist Sense and Urban Ecologies of Care“, published in Transversal Texts]
My first gateway into the complex ecology of Trieste is a specific programme that operates within the general healthcare system itself. I will move through it in dialogue with the voices and practices of those who run it, as my thoughts and reflections on the local integrated care program (and on the caring ecologies in general) rely on an ongoing collaboration with Margherita Bono, who works in the Micro Area Programmes and who in the last few years has led action research projects to redefine their functioning. This analysis discusses a distinctive element of the caring ecologies, that is the way things can happen differently when the institutional practices sit on the edge or threshold between the state and society rather than being projected from the state onto society.
I explore the threshold by drawing lines of flight. A flight from the logic of the state into a logic of caring, a flight from a closed institutional frame into an open urban system; a practice made of contradictory elements that tries to make sense not of the realities around it, but with them, as Isabell Lorey (2019) has proposed in her contribution to the project Entering Outside. An institution that goes outside, leaving its safe ground and getting lost (Newey, 2019) in the, sometimes nonsensical, reality outside the walls of the hospital or the consulting room. But also, a flight from ethnographical truth: I will use a series of narratives that fly away from facts to explore the space of imagination.
The Micro Area Programme is a set of interventions in several vulnerable urban spaces of Trieste in which healthcare programmes, social services and housing policies intersect to involve local social networks in designing public care policies for these sites. Each Micro Area cares for a population of about 2000 people, but it is also a space, a small apartment, normally on street level, where a range of activities take place – social and cultural collective practices, and services such as home visits, check-ups, public health sessions and so on. This space is open five or six days a week; the core working group of the Micro Area is three to six people who work different schedules, volunteers who take care of activities that are not directly mandated by the public institutions, plus a variable number of inhabitants who both participate in and organise activities.
One of the most interesting aspects of this programme is that the healthcare is not provided through protocols, rules and duties that see the citizen solely as the object to whom resources, attentions, benefits are given: as a recipient. Instead, the programme supports the citizens in exercising their rights, helping them to know and use state devices and resources to gain full liberty – the same dynamic and conflictive difficult freedom of urban life that Giannichedda described.
In this framework, the story of care constructs itself as a narrative, constitutes itself as a space. Perhaps it involves a woman who lives alone in a small council apartment, with a small dog. Every day she watches the sea from her balcony; she is going through a stressful period, losing her memory and her autonomy. She is old and her husband died some years ago; she came to the attention of the Micro Area coordinator (or community manager) because of the old ladies who pass on local rumours as they visit neighbours and shops. The idea being – with all the ambivalences it holds – to use gossip for the common good. Within this framework that falls somewhere between control and care, the ladies have found out that this resident is losing her memory and becoming more and more vulnerable.
So the community manager contacts her and begins imagining a series of resources that could be activated to respond to the situation, those that form part of the public institutional services of the welfare state and those that are part of the business and social network of the city. This requires the community manager to deal with a multitude of tiers and norms, authorisations and hierarchies, logics and values, to find her way through different agents, allies, tools within the state and the wider social configuration.
The old woman, let us call her Feste Puck (Shakespeare, Foucault, 2003, reminds us, uses some agents as points of entry to a critical perspective about reality), refuses to engage with the services the community manager proposes, and she is generally suspicious of all welfare workers. She claims she has seen her general practitioner stealing milk from her fridge; probably he does it quite often, since almost every day she has to come to the Micro Area to ask for milk and sugar.
Every day the story is the same: Feste comes around noon, when the social lunch is arranged; she asks for some milk and sugar and is invited to join in the lunch. She sits and tells the community manager about how they never allow her to visit her ex-husband in the clinic where he is cared for. The community manager then reminds her that he died almost five years before; maybe Feste should think about visiting her general practitioner and asking him to give her some permanent support. Feste starts to cry; she is aware of her fragility, but she is afraid of being hospitalised. Who will take care of her dog? Will she be able to come back home?
And her suspiciousness about the general practitioner stealing the milk suddenly makes sense. She is providing us with a situated analysis of the ecology in which she is immersed. The general practitioner is the gatekeeper, or the funnel, to a general system of care: he embodies all the ambivalence implied in “being taken care of”. Normally care also involves the risk of being constrained in your autonomy: move to a care house and lose your dog, lose your small apartment and the few social ties you have in the neighbourhood. Also, I think while Feste cries remembering her husband, you never know if you will be able to look at the sea in the morning, while drinking a cup of coffee, in the care home. At the end of the day, maybe it doesn’t matter so much if someone steals your sugar, now and then. It is still your home and your neighbourhood.
A vécu, lived experience, from the end of the world, to say it with Francesc Tosquelles (1986, cf. Foucault 2003), Feste Puck is well aware that institutions tend to disempower the citizen in relation to the organisation of care. To change this tendency, the language of the institution, “la langue de la tete,” Tosquelles calls it, has to displace itself and enter a dialogue with “the location of perception.” In this dialogue, “what counts is not the head but the feet: knowing where you put your feet. The feet are the great readers of the world” (Tosquelles, 2012). In this sense, the ecology of care is composed through the situated perceptions made by all the feet that have read the city, that produce it as a common oeuvre.
Henri Lefebvre counterposes this ecological approach of perception to the ideological ordering of politics: “Public policies subordinate reality to a strategic system of significations” that take away most of the population of the city’s ability to use public space, but nonetheless, collectively residents constitute the city as an ecology through reception and transmission – a composition of social life that is based on perception (1996). Aware of the antagonism between institutional abstraction and social practice, and in alignment with Feste’s seat-of-the-feet-critique, Federico Rotelli, District Medical Doctor, explains the logic of deinstitutionalisation in a pamphlet intended to defend the Trieste Healthcare System from possible reforms:
“When [chronic pathologies appear], the tendency in healthcare is that of institutionalising the person (in a care home, a retirement house or in a healthcare residence). This gives substantial form to the dichotomy illness-exclusion vs health-community. But maintaining the citizen at home, even if she is ill and disabled, allows for the support of her personal dignity and affective relationships, while keeping a cultural conception of disease and death as among the events that are a natural part of life.”
Although Feste Puck and Federico Rotelli have different backgrounds, they both aim to institute situated policies based on perception by looking at (and acting through) the effects that institutional practices have on the concrete life of society (Mitchell, 1999).
The Micro Area emerges as an ecology of proximity, to use Andrea Ghelfi’s term (2016). A proximity of the politics of care to the open ecology of the city, where the practice of caring is a co-creator of the urban fabric. In our imaginary journey, the concrete life around Feste is complex, and the community manager is facing a difficult situation: the resources she was going to activate cannot work in this context, given Feste’s worries, and she has to invent something different. She starts by inviting her to different activities in the Micro Area; once a space of commonality is built, the manager negotiates a series of visits with Feste, promising that she won’t be hospitalised unless it is strictly necessary, and guaranteeing Feste the final say. The negotiation is not about the formality of this freedom: constitutionally Feste always has the right to refuse a medical or healthcare option, but the community manager underscores this by reassuring her that she, as an institutionally recognised agent in the ecology of care, will support Feste in exercising her rights even when a doctor or care worker insists on doing something “for her own good.”
In this ecology of caring, the provision of care happens on the threshold, on the limit between the state and society, or between the worker and the citizen; it is a device that destitutes and institutes the norms of care. In a workshop, Monica Ghiretti, the coordinator of the Ponziana Micro Area, explains that this programme, “has no barriers that discriminate access, the service is there, the space is there to be inhabited.” In the Micro Area Programmes, the state’s boundaries are concretely contested through the trespassing of those thresholds that the state institutionally constitutes. Instead of going along with a system that pits the citizen – all alone – against the mighty resources of the state, they create, around and with the citizen, a collective ethos based on reciprocity, responsibility, and inclusiveness.
The community manager calls the social services of home support, a specific person who may be better able to find a solution; this contact connects her with the youngsters of the “solidarity service,” secondary school students who receive a small municipal grant to participate in local solidarity networks. They will meet with Feste to see how best to help; at the same time the network of local businesses can deliver her shopping, and the community manager talks with the people who attend the vegetable garden nearby: every week, they will bring Feste a box and check on her. The community manager also visits weekly, as do the youngsters of the solidarity service. The gossip team will also knock on her door now and then. Sometimes, a solution is achieved and the situation stabilises; other times, however, the drift of institutionalisation is stronger, and the effort to sustain the right to health within urban life fails.
The story of Feste Puck confronts this essay – this practice of knowledge production – with the first contradiction: that between fabulation and truth. If few critical scholars still aim to tell the truth, still fewer would feel comfortable when one of their interlocutors (or participants or informants, as some call them) tell them, as happened to me, “you are telling tales about Trieste.” The question arises: how much can we imagine when telling a story? What is the role of fabulation in constructing a concrete imagination of a social and political practice? I hope the fragments I present in this text can get us closer to responding to this question.
The imaginary story of Feste Puck could end in many ways; so many we could lose our minds in trying to imagine the possibilities: the effort to support her difficult freedom may be successful for a longer or a shorter time; she might end up needing a care home, or, instead a system will be organised to sustain her; or she will be hospitalised. In that case, the Micro Area will take care of her small dog Billy, (or Billy-Boo as those now caring for it will rename Feste’s friend). Who knows, perhaps Feste Puck will become Billy Boo, she will become her companion in order to escape the tendency of institutionalisation. Chissà?
What is important here is not which of these stories is the truth – any of them could be true – but rather that each carries pieces of contradictory and ambivalent truths of loss, pain, vulnerability. Feste Puck and Billy Boo allow us to play with our imagination: they tell us about true worlds that are not always real. And Paulo Freire’s (2018) definition of truth is useful here: “a true word is one that changes the world.” The truth therefore is pedagogic and conflictive practice against the institutional abstraction of life into protocols: truth does not describe the world as it is, but takes part in the world and participates in making the world anew. This perspective lets us escape from the double-bind that opposes the realistic inferno of the neoliberal world to the romantic utopia of something that has not nor ever will happen (cf. Echeverría, 2000). For example, with our feet on the site of the Micro Area, we can affirm that the social organisation of care through the state can do things differently, it can sustain a different life of the city. It can imagine an ecology of care.
The Micro Area is thus the threshold at which the process of incorporating a different logic into the dynamics of public services can begin; this occurs when provision of care is deinstitutionalized through the emancipation of all the people in all their different positions truly participating in the endeavour of care. This encounter between different actors and different knowledges is mediated by an effort of displacement, by the politics of translation, as I try to make clear later in this section.
Thinking of caring as an ecology allows us to acknowledge that “the reciprocity of care is rarely bilateral: the living web of care is not maintained by individuals giving and receiving back again. But by a collective disseminated force” (de la Bellacasa, 2017). In a similar sense to that proposed by Maria Puig de la Bellacasa, the processes opened in the Micro Area experiment blur the artificial limit between society and the state and contest the boundary that separates individuals and the social dimension of illness, the distress, or, more concisely, all that is contained in the word ‘problem’. When the logic of the threshold is enacted, the process of care stops being about one person and becomes an ecology of things, practices and affects, thus transforming the institutional limit into an open boundary.
To return to Isabel Lorey, the practice of caring with “is based on knowledge accumulation, on knowing the social situation of the people that need support and for that reason it is important to be aware of the tendencies of control and surveillance [and] build together a common modality that allows each person to again take control over their lives in the midst of the neighbourhood, in the midst of the (new) relationalities in the urban territory” (2019)
The Micro Area’s proximity to everyday life goes along with the insertion of a de-institutionalising practice within the interstices of the state. The same story we recounted above needs now to be inserted in the functioning of the state. Institutions and procedures come into play but they are translated out of their logic and into social life.
The community manager mediates with the Mental Healthcare Local Centre to arrange mechanisms of support for Feste; with the Healthcare District for home visits; with the Electricity Company and the Public Housing Trust to arrange and support bill payments and other bureaucratic problems. The assemblage of programmes, spaces and actors becomes an ecology through which the public worker and the citizen together advocate for rights. The public worker’s role is both to share knowledge to allow the citizen to access her full rights and to agitate the state to reconfigure the functioning of the institution around and along the citizen’s singular life.
The transformation of institutional practice into an open boundary, a threshold, is crucial in the Basaglian trajectory. The dismantling of the mental asylum in the 1970s created space for the urban affirmation of a system of mental healthcare that puts the institution (and its actors) always at risk, destroying the locks, the fences and the chains and establishing the 24/7 neighbourhood centres, the social cooperatives, as well as mechanisms of economic sustenance and of voluntary-based support.
The destruction of the asylum as a place, Franco Basaglia says (2005), is the limit to be inhabited in order to produce another space, together with all the agencies in the endeavour of care and in the city. It is not enough to formally abolish the fence; it must also be destroyed. The radical deinstitutionalisation of the Trieste Psychiatric Hospital was a practice of violence, an appropriation of the incident’s risk by those to whom the ability to act and take responsibility for their actions was denied, sectioned in the realm of the “force of things” (Gramsci, 1971).
But trespassing the asylum wall to build always-open institutional sites in the city was not only about destroying the psychiatric institution. It was about breaking apart the institutionalisation of life driven by healthcare as a system and medicine as a knowledge. Once the walls are breached, there is the problem of management: how can we make this freedom something durable and sustainable? Commenting on Frantz Fanon’s resignation letter from an Algerian mental healthcare department, Franco Basaglia affirms that in a time in which the political revolution is “for obvious reasons” not possible, “we are forced to manage an institution that we deny” (2005).
This ambivalent state remains for the community manager trying to design an ecology of care for Feste Puck, but because of the Basaglian institutional transformation, she is confronted with a plastic system rather than with a rigid one: a system that aims to destitute and institute itself every day, as transversal and transformative force of the instituent practice, in the term proposed by Gerald Raunig (2009).
This tension between destruction and invention is one of the elements that brings Irene R. Newey, a nurse and researcher from Madrid, to Trieste in an early December in the middle of the Bora and the Christmas markets. She is helping design community healthcare practices for the municipality of Madrid, and she is in Trieste because of the instituent practices continuously happening here. I am here as an accompanist and translator and as part of my not always effective effort to make my research useful to the spaces in which I have been involved for so long, proposing concepts but also opening bridges with other healthcare workers around Europe.
In this way, I discover translation itself as a practice of research, a method that allows me to listen to conversations I would not normally hear, to pose, in my role as Irene’s voice, questions I would never have imagined. Translation lets me disappear as a ventriloquist’s puppet into the narratives and conversations, lets me explore the realm of the imperceptible politics that happen below the surface of discourse.
“Listen to the stories,” Franco tells us in an informal conversation, “and try to grasp how each story is both shared,” when it crystallises memories in a narrative, “and extremely differentiated” since everybody looks at it from her own ground and position. Which story should we believe? I ask. “None of them,” Franco says. “We should make memory into a critique of the present, rather than a history about the past, and bring together these plural gazes in a common challenge to keep our present open and invent new modes of action. Even if we will keep failing,” he concludes.
Keeping this in mind, Irene and I get lost in the system and encounter different agents doing different work. Those in the Micro Area Programme explain how it is to see things from their position, close to urban life; the doctors and administrative staff at the Healthcare District, where the reinvention of the institution is systemic rather than artisanal, tell us their perspective; and so do those in the Mental Healthcare ER in the general hospital, where the inertia of traditional psychiatry is constantly attempting to close the open door, to re-institutionalize the practice of care in the name of exceptional situations.