Caring democracy

Each morning upon waking (in a house that is not my own, here in Rome where dear friends have taken me in) I have a moment of disorientation1. The pieces don’t fit together; the unfamiliar bed does not correspond to the latest government decree; the contradictions in the health system and the organization of contemporary capitalism don’t fit with my body, restless from the lack of liberty. Some novelty for those in the rest of the world, I think over my coffee.

We have renounced a lot of liberties, both collective and personal. The “what for” part is clear to me: this is about taking care of each other, a shared form of caring, accepting responsibility and constructing together the “capacity to respond” to what may come. But answering the “why?” part—the reasons—is harder. This too should be a collective exercise, made up of situated practices and analyses. My perspective is based in collective activist research within the health-care system (with projects like Entrarafuera2, Palinsesto Basalgiano3 and Pandemie Locali4).

As we seek to understand the reasons for the situation we are experiencing, I’d like to offer a reflection. When we talk about ‘health’ it is useful to distinguish between the homonyms “health” and “health-care”. Not so much for the purposes of defining a dichotomy between the two but in order to acknowledge the complexity with which these different orders of things get mixed together, and to comprehend health-care as a social and technical organization built of practices and forms of knowledge, an essential actor in the ecology of health itself, seen as an open process: open, complex, interdependent and alive with singular and social forms of care.

If we look at health-care alone, our attention centers immediately upon hospitals, those spaces that construct our bodies as passive objects upon which technical forms of knowledge must act, forms of knowledge which are exclusive (ie, “I know, you don’t”) and clearly objective. One need only read the debates between experts in virology, pulmonology and epidemiology these days to understand how useful their diverse perspectives can be when brought together to confront a complex situation (and how dangerous they can be when they make unsupported claims).

For this reason it is essential that—while we applaud the dedication and generosity of health-care workers—we also open a social and political conversation about how to reorganize the health-care system. The system is failing, as these days have demonstrated. And it is failing at a moment in which the organization of care takes place principally in bio-medical health-care facilities like hospitals, structures in which people are exposed to contagion, or homes for the elderly that concentrate the most physically and politically vulnerable populations— and the silenced populations such as those confined to migrant internment centers and prisons5.

The present model in Europe is heavily weighted towards ‘health-care’ rather than ‘health’, in terms of economic investment and—especially—cultural legitimacy. The contradictions this generates have made themselves violently apparent these days: in those places where there is not a strong primary care system (both social and medical), including general practitioners, social workers and local care centers that are familiar with the lives of the population (and which have the power and liberty to make decisions within their own structures!) not only do the secondary care systems — hospitals and intensive care units — get overloaded, but there will be critical resurgences in the coming months. In these places, the public health system will only discover the ailments when they become urgent, in the pandemic moment of emergency as Jasmine McGhie6 clearly explains.

Exemplars can been seen in the weakness of primary care systems in the most heavily affected regions in Europe, specifically Madrid and Milan, where those who have serious symptoms have no choice but to go to the hospital, and moreover the health-care system’s unfamiliarity with the territory it serves prevents it from acting in a proactive and coordinated way with other actors, complementing its tools with those of other local institutions and community networks. At the same time in both regions—as in so many other places—the virtuosity of health-care professionals is continuously under-valued by political structures.

To avoid the repeated collapse of the health-care systems, it is not enough to increase the number of intensive care units in the hospitals. We need to coordinate medical and social efforts so they can make use of the energy and situated knowledge present in each territory. It is necessary to “jump out”, as Franco Rotelli says. We must think about how to organize different forms of knowledge, infrastructures, cultures, resources and biographies (including ‘expert’ knowledge but also community and institutional experiences) in order to respond to the growing fragility of our society in its daily life.

Territorial decentralization and the distribution of knowledge and resources are the keys that can open the way to healing, affirming the need for a system of health capable of taking on the inequalities of life in a holistic manner. Inequalities shape the health of persons (the kind of home or work we have or do not have determine our risk of contagion), but they also determine our “right to health” (formally, in the sense of having the required papers, or materially, in the sense of being aware or our rights or not). The privatization of health is not limited to the commodification of the health-care system that deprives us of the right to access quality free universal services. Privatization also means the individualization of the responsibility for care. Breaking with this individualization is essential to constructing an alliance between society and its institutions.

So what must be done? First, systematize the different articulations of the welfare State such that the institutions might talk to each other, share information and diagnostics. It is especially important that this collaboration open up to social forms of knowledge, integrating these into the shared process of defining ways of living, taking into account the singularity of each territory.

At the same time, we must recognize the complexity and power of technical forms of knowledge and think about ways of democratizing these. When knowledge is synonymous with power the only possible result is a government that manages uncertainty (informed by science) and a population that obeys; just the opposite of the Zapatista slogan. But if we think about knowledge as a form of responsibility that confronts the unknown, risk becomes a shared territory we can get to know better by democratizing technical knowledge, if as a society we engage with the different layers — technical and experiential — that make up the dramatic situation we are experiencing.

The virus is not the bug itself: it inhabits our ways of living, our interdependencies. Living with it means rethinking the ways we live as a society. We need a different political imagination capable of creating synergies and bridging the gap between “experts” and “patients”, one capable of putting social actors and public actors in democratic relation to each other. This means confronting the business-driven forms that shape our world, whether through cooperatives or ethical businesses that are making an honest contribution to this moment. It also means confronting the immensely powerful corporations that are abusing their power in this critical moment. Lastly, constructing a different political imagination means putting our own ethics at risk within the present context, ethics that more than ever must be re-conceived to recognize that the conditions and possibilities of our actions are changing in profound ways.

The practices of ACT UP 7, the union of people with AIDS in the 80s and 90s, taught us important lessons: we are not objects, “we are not patients, we are not patient”. We want to know and to be the protagonists of our own recovery, because we are the information needed to fight the virus, we are the actors that can open an alternate path. ACT UP blazed that trail in the midst of a thousand hardships and mourning, and with all the complexities that accompany critical responsibility: when it comes to revealing the contradictions in the system but also when it comes to facing the dramatic reinvention of the world, of our world, that the present situation imposes upon us. We must imagine public policies and common practices that might fulfill this possibility, updating it to our times: the alliance between forms of knowledge, experiences and resources. If we do not, the neoliberal logic of production will immediately return to organize new and even more dangerous forms of exploitation. And we will go back to being mere transmitters of contagion, unconscious agents requiring control, the passive objects of public health policy.

Translated by Maggie Schmitt