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Alternative care and health histories: some case studies to help us imagine the future

29th May 2018

By Valeria Graziano, with the contribution of Zoe Romano and Maddalena Fragnito (WeMake). WeMake is the cluster lead for Health and Care of DSI4EU.

The movement for Digital Social Innovation (DSI) insists on the need for a long memory, so that things are not taken as “innovative” just because there is no awareness of what has happened before or elsewhere. As a result, sometimes DSI initiatives appear not as new sparkling gadgets, but as less flashy - but still effective - initiatives that intervene to repair those social care infrastructures neglected by big investors.

In this article we discuss three case studies from the recent past that have seen social justice movements autonomously organising their own medical care and assistance systems, in ways that often led them to clash with the managerial classes in state bureaucracies, private corporations and the philanthropic third sector. 

These stories of welfare from below and mutual self-organisation are often overlooked when talking about the future of health care. But we believe that they have a lot to offer to the DSI movement precisely because they articulate a different concept of care not as a free service, but as a process that weaves new social relationships, creating knowledge, skills and tools and rethinking the meaning of key ideas such as health and body, self-determination and trust, normality and competence.

This is an aspect that we particularly want to highlight also because the opportunities opened up by digital technologies in the health sector are reshaping it alongside other broad historical changes, such as the dismantling of public welfare and the coming automation — supported by artificial intelligence, robotics and strong economic interests — of medical and care practices that are dividing workers between new experts in highly automated processes and care who are being deskilled in carrying out tasks defined as “high touch”[1].

In this context, it seems useful to remember the histories of mutualism that were able to organize articulated and intersectional care systems explicitly in response to equally complex exploitation systems. In a recent article, the researcher Marie Moise[2] has made evident within this genealogy the particular role played by women in forming social policy proposals that freed them from the burden of reproductive work. Thus we discover that in France, as early as 1835 the feminist Flora Tristan published a treatise on the “Need to give good reception to foreign women”, and that in Italy the first general association of mutual aid and education of the workers was born in 1862. Instead, the examples that we consider below date back to the second half of the last century, as this was an emblematic period that has shaped many aspects of the present social order.

BLACK PANTHERS

 
Photograph by William P. Straeter, AP

In the ’60s and ’70s, the central part of the Panthers’ work for the rights of black people was the organization of mutual support programs such as the ‘Free Breakfast for School Children Program’, which came to serve a free breakfast for over 20,000 children living in conditions of malnutrition in sixty different black communities across the USA. Other projects included drug and alcohol detoxification services; accompaniment services for the elderly who needed to visit the doctor; health education programs and even an ambulance service. In the ’70s, the Panthers volunteers managed thirteen different clinics.

 

During this process they gained sufficient experience for being able to intervene authoritatively in the health policies and medical research debates of the time. In their clinics, they carried out a mass clinical screening that significantly contributed to the study of sickle cell anemia (a genetic disease that particularly affects people of African descent). In addition, the Panthers opposed pseudoscientific and racist-based medical testing programs, such as the “UCLA Center for the Study and Reduction of Violence,” which intended to perform brain operations to counteract aggressive behavior, and Tuskegee’s famous experiment, in Alabama, a clinical study that infected about 600 black men with the syphilis virus without their knowledge, under the pretense of offering medical care[3].

ACT UP

 
Picture take from http://benjaminheimshepard.blogspot.it/2013/10/aids-is-not-history-and-neither-is-act.html

ACT UP is perhaps the best known example of an international grassroots organization that has managed to impact legislation, research and standards of medical treatment for HIV/AIDS, starting from a self-organisation processes of those who were directly impacted by the virus. Founded in 1987 in New York within an association of LGBT activists, the first ACT UP initiatives focused on staging direct actions and protests with high media impact, such as die-ins where they staged mass deaths. Alongside the innovative way of capturing media attention with creativity, there are at least two other aspects that make ACT UP a very important example to help us think about care practices.

The first has to do with the way in which the organization managed to scale up in a very short amount of time, while staying committed to an open decision-making structure without leaders, where proposals and coordination were entrusted to an agile grouping of committees and assemblies able to decide democratically and autonomously. Another innovative trait of ACT UP was its commitment to self-education, which focused both on of scientific expertise and on understansing the rules and beurocracies of the health system. The organisation was able to modify the protocols that regulate experimental therapies, through their “Parallel Track” program that enlarged the number of participants in therapeutic trials on a voluntary basis, insisting that the patients must have full informed control over the design and implementation of the experiments.

ITALIAN FEMINIST SELF-MANAGED HEALTH CENTERS

At the beginning of the ’70s, the feminist movement placed the body at the center of a political reflection of broad import. In Italy, the movement loudly reclaimed the self-determination of women opening a public polemic against what they denounced as the ‘medicalisation’ of life, the naturalisation of sexuality and reproductive functions and the ‘pathologisation’ of ways of being and desires considered ‘deviant’. At this time, the first self-managed health centres were opened, often in occupied spaces.

 
Occupation of obstetrics department — pic by Tano D’amico

These centres were just one of the many practices that the feminist movement simultaneously developed during that period to address the lack of care and research focused on the female body. Self-managed health centres were accompanied by other initiatives such as the publication of informational pamphlets, self-help and consciousness raising practices, networks in support of abortion, and the symbolic occupations of hospitals and medical congresses to get the public services’ attention. As Silvia Federici explained, one of the limitation of these feminist health policies that ended up weakening the overall movement was the progressive separation between the struggles for the right to abortion and a more inclusive demand for ‘reproductive justice,’ capable of involving those women who were denied the possibility of reproduction for economic reasons, women whose children were taken away or who were subjected to forced sterilisations, for instance.

 

From the analysis of these and other experiences (among which we should mention, as a quick but important aside, the anti-psychiatry movement which revolutionised mental health care in Italy, France, Germany and England during the same years), it is possible to identify some salient features of self-organised care initiatives that have succeeded in scaling and impacting the behavior of both state apparatuses and private interests. 

Communication

They reshaped the dominant narratives framing bodies, pathologies and conditions of life, creatively challenging the messages disseminated by media and institutional actors, rejecting both the victimization of their constituencies, but also the idea that there is something wrong with having to rely on others for continued care.

Intervention

They refused to be treated by other organisations as a cheap replacement of care professionals, refusing to be given responsibilities without power. Volunteers and activists never ceased to press institutions to invest more and more effectively in excellent services accessible to all, contesting the idea (sometimes presented as inevitable) that health should be managed from the perspective of saving money and cutting back.

Community

They did not speak only to patients and their families, but they were able to involve different actors, insisting on conceiving health as a question that impacts everyone’s living conditions, in a perspective of extended civil solidarity.

Impact

They freed themselves from the idea that it is always necessary to please everyone or to minimise conflicts to impact social changes. To achieve their goals, bottom-up care initiatives developed strong strategies at times, exerting continual pressure on institutions by calling out unjust behaviors. These forms of activism revealed that scientific and medical communities are not necessarily the neutral entities they claim to be, but can be marked by prejudices and discriminatory ideologies. Women, homosexuals, disabled people, poor people, mentally ill people, foreigners and black people have often not been considered suitable subjects for participating in decisions taken about their bodies.

Diffused knowledge

They invested in continuous self-education and research activities, which enabled them to understand and intervene competently in official scientific debates and influence research. Another era of continuous training concerned the in-depth knowledge of the mechanisms and logistics that govern healthcare systems, including the role of large private interest groups in the management of public health.

Integrated approach

They problematised the idea that it is sufficient to deal with only one aspect of people’s conditions, or that is enough to identify a standard single or procedure that works for everyone to solve health problems, an approach that has often been followed by the pharmaceutical sector, interested in creating products with the widest possible market, and from state bureaucracies, due to entropic lack on investment in change.


Taken together, such distinctive traits highlight how deepening the knowledge of self-managed care experiences from the past is a valuable exercise for sketching the contours of the new inclusive, democratic and sustainable organizational practices made possible by open technologies, especially given the role of medical knowledge, historically, as a tool to discipline the weakest.

Fablabs, makerspaces and online communities are becoming reference points for responding to care and health issues. They do not merely produce solutions, but generate a complex ecosystem of collaborations, beyond the dualisms public / private or profit / nonprofit. In the next article, we will draw connections between the legacy of these examples and the current experiences that we are embedded in and that we are carrying out, trying to analyse how lowering the barriers for using digital technologies is changing the forms of organisation and dissemination of new practices of welfare.

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