Graziano
Pirate Care: How do we imagine the health care for the future we want?
2018
Pirate Care - How do we imagine the health care for the future we want?
Oct 5, 2018 · 19 min read
by Valeria Graziano
A recent trend to reimagine the systems of care for the future is based on many of the principles of self-organization. From the passive figure of the patient — an aptly named subject, patiently awaiting aid from medical staff and carers — researchers and policymakers are moving towards a model defined as people-powered health — where care is discussed as transforming from a top-down service to a network of coordinated actors.
At the same time, for large numbers of people, to self-organize around their own healthcare needs is not a matter of predilection, but increasingly one of necessity. In Greece, where the measures imposed by the Troika decimated public services, a growing number of grassroots clinics set up by the Solidarity Movement have been providing medical attention to those without a private insurance. In Italy, initiatives such as the Ambulatorio Medico Popolare in Milan offer free consultations to migrants and other vulnerable citizens.
The new characteristic in all of these cases is the fact that they frame what they do in clearly political terms, rejecting or sidestepping the more neutral ways in which the third sector and the NGOs have long presented care practices as apolitical, as ways to help out that should never ask questions bigger than the problems they set out to confront, and as standing beyond left and right (often for the sake of not alienating potential donors and funders).
Rather, the current trends towards self-organization in health care are very vocal and clear in their messages: the care system is in crisis, and we need to learn from what we know already. One thing we know is that the market or the financialization of assets cannot be the solution (do you remember when just a few years ago Occupy was buying back healthcare debts from financial speculators, thus saving thousands Americans from dire economic circumstances? Or that scene from Michael Moore’s Sicko, the documentary where a guy has to choose which finger to have amputated because he does not have enough cash for saving both?).
Another thing we also know is that we cannot simply hold on to past models of managing the public sector, as most national healthcare systems were built for the needs of the last century. Administrations have been struggling to adapt to the changing nature of health conditions (moving from a predominance of epidemic to chronic diseases) and the different needs of today’s populations. And finally, we most definitely know that to go back to even more conservative ideas that frame care as a private issue that should fall on the shoulders of family members (and most often, of female relatives) or hired servants (also gendered and racialised) is not the best we can come up with.
Among the many initiatives that are rethinking how we organize the provision of health and care in ways that are accessible, fair, and efficient, there are a number of actors — mostly small organizations — who are experimenting with the opportunities introduced by digital technologies. While many charities and NGOs remain largely ignorant of the opportunities offered by technology, these new actors are developing DIY devices, wearables, 3D-printed bespoke components, apps and smart objects to intervene in areas otherwise neglected by the bigger players in the care system. These practices are presenting a new mode of operating that I want to call ‘pirate care’.
Pirate Care
Piracy and Care are not always immediately relatable notions. The figure of the pirate in popular and media cultures is often associated with cunning intelligence and masculine modes of action, of people running servers which are allowing people to illegally download music or movie files. One of the very first organizations that articulated the stakes of sharing knowledge was actually named Piratbyrån. “When you pirate mp3s, you are downloading communism” was a popular motto at the time. And yet, bringing the idea of a pirate ethics into resonance with contemporary modes of care invites a different consideration for practices that propose a paradigm change and therefore inevitably position themselves in tricky positions vis-à-vis the law and the status quo. I have been noticing for a while now that another kind of contemporary pirate is coming to the fore in our messy society in the midst of many crises. This new kind of pirate could be best captured by another image: this time it is a woman, standing on the dock of a boat sailing through the Caribbean sea towards the Mexican Gulf, about to deliver abortion pills to other women for whom this option is illegal in their country.
Women on Waves, founded in 1999, engages in its abortion-on-boat missions every couple of years. They are mostly symbolic actions, as they are rather expensive operations, and yet they are potent means for stirring public debate and have often been met with hostility — even military fleets. So far, they have visited seven countries so far, including Mexico, Guatemala and, more recently, Ireland and Poland, where feminists movements have been mobilizing in huge numbers to reclaim reproductive rights.
According to official statistics, more than 47,000 women die every year from complications resulting from illegal, unsafe abortion procedures, a service used by over 21 million women who do not have another choice. As Leticia Zenevich, spokesperson of Women on Waves, told HuffPost: “The fact that women need to leave the state sovereignty to retain their own sovereignty ― it makes clear states are deliberately stopping women from accessing their human right to health.” Besides the boat campaigns, the organization also runs Women on Web, an online medical abortion service active since 2005. The service is active in 17 languages, and it is helping more than 100,000 women per year to get information and access abortion pills. More recently, Women on Waves also begun experimenting with the use of drones to deliver the pills in countries impacted by restrictive laws (such as Poland in 2015 and Northern Ireland in 2016).
Women on Waves are the perfect figure to begin to illustrate my idea of ‘pirate care’. By this term I want to bring attention to an emergent phenomenon in the contemporary world, where more and more often initiatives that want to bring support and care to the most vulnerable subjects in the most unstable situations, increasingly have to do so by operating in that grey zone that exists between the gaps left open by various rules, laws and technologies. Some thrive in this shadow area, carefully avoiding calling attention to themselves for fear of attracting ferocious polemics and the trolling that inevitably accompanies them. In other cases, care practices that were previously considered the norm have now been pushed towards illegality.
Consider for instance the situation highlighted by the Docs Not Cops campaign that started in the UK four years ago, when the government had just introduced its ‘hostile environment’ policy with the aim to make everyday life as hard as possible for migrants with an irregular status. Suddenly, medical staff in hospitals and other care facilities were supposed to carry out document checks before being allowed to offer any assistance. Their mobilization denounced the policy as an abuse of mandate on the part of the Home Office and a threat to public health, given that it effectively discouraged patients to seek help for fear of retaliations. Another sadly famous example of this trend of pushing many acts of care towards illegality would the straitjacketing and criminalization of migrant rescuing NGOs in the Mediterranean on the part of various European countries, a policy led by Italian government. Yet another example would be the increasing number of municipal decrees that make it a crime to offer food, money or shelter to the homeless in many cities in North America and Europe.
Hacker Ethics
This scenario reminds us of the tragic story of Antigone and the age-old question of what to do when the relationship between what the law says and one what feels it is just becomes fraught with tensions and contradictions. Here, the second meaning of ‘pirate care’ becomes apparent as it points to the way in which a number of initiatives have been responding to the current crisis by mobilizing tactics and ethics as first developed within the hacker movement.
As described by Steven Levy in Hackers, the general principles of a hacker ethic include sharing, openness, decentralization, free access to knowledge and tools, and an effort of contributing to society’s democratic wellbeing. To which we could add, following Richard Stallman, founder of the free software movement, that “bureaucracy should not be allowed to get in the way of doing anything useful.” While here Stallman was reflecting on the experience of the M.I.T. AI Lab in 1971, his critique of bureaucracy captures well a specific trait of the techno-political nexus that is also shaping the present moment: as more technologies come to mediate everyday interactions, they are also reshaping the very structure of the institutions and organizations we inhabit, so that our lives are increasingly formatted to meet the requirements of an unprecedented number of standardised procedures, compulsory protocols, and legal obligations.
According to anthropologists David Graeber, we are living in an era of “total bureaucratization”. But while contemporary populism often presents bureaucracy as a problem of the public sector, implicitly suggesting “the market” to be the solution, Graeber’s study highlights how historically all so-called “free markets” have actually been made possible through the strict enforcement of state regulations. Since the birth of the modern corporation in 19th century America, “bureaucratic techniques (performance reviews, focus groups, time allocation surveys …) developed in financial and corporate circles came to invade the rest of society — education, science, government — and eventually, to pervade almost every aspect of everyday life.”
The forceps and the speculum
And thus, in resonance with the tradition of hacker ethics, a number of ‘pirate care’ practices are intervening in reshaping what looking after our collective health will look like in the future. CADUS, for example, is a Berlin based NGO which has recently set up a Crisis Response Makerspace to build open and affordable medical equipment specifically designed to bring assistance in extreme crisis zones where not many other organizations would venture, such as Syria and Northern Iraq. After donating their first mobile hospital to the Kurdish Red Crescent last year, CADUS is now working to develop a second version, in a container this time, able to be deployed in conflict zones deprived of any infrastructure, and a civil airdrop system to deliver food and medical equipment as fast as possible. The fact that CADUS adopted the formula of the makerspace to invent open emergency solutions that no private company would be interested in developing is not a coincidence, but emerges from a precise vision of how healthcare innovations should be produced and disseminated, and not only for extreme situations.
“Open source is the only way for medicine” — says Marcus Baw of Open Health Hub — as “medical software now is medicine”. Baw has been involved in another example of ‘pirate care’ in the UK, founding a number of initiatives to promote the adoption of open standards, open source code, and open governance in Health IT. The NHS spends about £500 million each time it refreshes Windows licenses, and aside from avoiding the high costs, an open source GP clinical system would be the only way to address the pressing ethical issue facing contemporary medicine: as software and technology become more and more part of the practice of medicine itself, they need to be subject to peer-review and scrutiny to assess their clinical safety. Moreover, that if such solutions are found to be effective and safe lives, it is the duty of all healthcare practitioners to share their knowledge with the rest of humanity, as per the Hippocratic Oath. To illustrate what happens when medical innovations are kept secret, Baw shares the story of the Chamberlen family of obstetricians, who kept the invention of the obstetric forceps, a family trade secret for over 150 years, using the tool only to treat their elite clientele of royals and aristocracy. As a result, thousands of mothers and babies likely died in preventable circumstances.
It is perhaps significant that such a sad historical example of the consequences ofclosed medicine must come from the field of gynaecology, one of the most politically charged areas of medical specialization to this day. So much so that last year another collective of ‘pirate carers’ named GynePunk developed a biolab toolkit for emergency gynaecological care, to allow those excluded from the reproductive healthcare — undocumented migrants, trans and queer women, drug users and sex workers — to perform basic checks on their own bodily fluids. Their prototypes include a centrifuge, a microscope and an incubator that can be cheaply realised by repurposing components of everyday items such as DVD players and computer fans, or by digital fabrication. In 2015, GynePunk also developed a 3D-printable speculum and — who knows? — perhaps their next project might include a pair of forceps…
As the ‘pirate care’ approach keeps proliferating more and more, its tools and modes of organizing is keeping alive a horizon in which healthcare is not de facto reduced to a privilege.
PS. This article was written before the announcement of the launch of Mediterranea, which we believe to be another important example of pirate care. #piratecare #abbiamounanave
»Public Library. Rethinking the Infrastructures of
Knowledge Production«
Exhibition at Württembergischer Kunstverein Stuttgart, 2014
**The present-day social model of authorship is co-substantive with the
normative regime of copyright. Copyright’s avowed role is to triangulate a
balance between the rights of authors, cultural industries, and the public.
Its legal foundation is in the natural right of the author over the products
of intellectual labor. The recurrent claims of the death of the author,
disputing the primacy of the author over the work, have failed to do much to
displace the dominant understanding of the artwork as an extension of the
personality of the author.**
The structuralist criticism positing an impersonal structuring structure
within which the work operates; the hypertexual criticism dissolving
boundaries of work in the arborescent web of referentiality; or the remix
culture’s hypostatisation of the collective and re-appropriative nature of all
creativity – while changing the meaning we ascribe to the works of culture –
have all failed to leave an impact on how the production of works is
normativized and regulated.
And yet the nexus author–work–copyright has transformed in fundamental ways,
however in ways opposite to what these openings in our social epistemology
have suggested. The figure of the creator, with the attendant apotheosis of
individual creativity and originality, is nowadays more forcefully than ever
before being mobilized and animated by the efforts to expand the exclusive
realm of exploitation of the work under copyright. The forcefulness though
speaks of a deep-seated neurosis, intimating that the purported balance might
not be what it is claimed to be by the copyright advocates. Much is revealed
as we descend into the hidden abode of production.
## _Of Copyright and Authorship_
Copyright has principally an economic function: to unambiguously establish
individualized property in the products of intellectual labor. Once the legal
title is unambiguously assigned, there is a property holder with whose consent
the contracting, commodification, and marketing of the work can proceed. In
that aspect, copyright is not very different from the requirement of formal
freedom that is granted to the laborer to contract out their own labor power
as a commodity to capital, allowing then the capital to maximize the
productivity and appropriate the products of the worker’s labor – which is in
terms of Marx »dead labor.« In fact, the analogy between the contracting of
labor force and the contracting of intellectual work does not stop there. They
also share a common history.
The liberalism of rights and the commodification of labor have emerged from
the context of waning absolutism and incipient capitalism in Europe of the
seventeenth and the eighteenth century. Before the publishers and authors
could have their monopoly over the exploitation of their publications
instituted in the form of copyright, they had to obtain a privilege to print a
book from royal censors. First printing privileges granted to publishers, for
instance in early seventeenth century Great Britain, came with the burden
placed on publishers to facilitate censorship and control over the
dissemination of the growing body of printed matter in the aftermath of the
invention of movable type printing.
The evolution of regulatory mechanisms of contemporary copyright from the
context of absolutism and early capitalism receives its full relief if one
considers how peer review emerged as a self-censoring mechanism within the
Royal Academy and the Académie des sciences. [1] The internal peer review
process helped the academies maintain the privilege to print the works of
their members, which was given to them only under the condition that the works
they publish limit themselves to matters of science and make no political
statements that could otherwise sour the benevolence of the monarch. Once they
expanded to print in their almanacs, journals, and books the works of authors
outside of the academy ranks, they both expanded their scientific authority
and their regulating function to the entire nascent field of modern science.
The transition from the privilege tied to the publisher to the privilege tied
to the natural person of the author would unfold only later. In Great Britain
this occurred as the guild of printers, Stationers’ Company, failed to secure
the extension of its printing privilege and thus, in order to continue with
the business of printing books, decided to advocate a copyright for the
authors instead, which resulted in the passing of the Copyright Act of 1709,
also known as the Statute of Anne. Thus the author became the central figure
in the regulation of literary and scientific production. Not only did the
author now receive the exclusive rights to the work, the author was also made
– as Foucault has famously analyzed – the identifiable subject of scrutiny,
censorship, and political sanction by the absolutist state or the church.
And yet, although the romantic author now took center stage, copyright
regulation, the economic compensation for the work, would long remain no more
than an honorary one. Until well into the eighteenth century literary writing
and creativity in general were regarded as resulting from the divine
inspiration and not from the individual genius of the author. Money earned in
the growing business with books mostly stayed in the hands of the publishers,
while the author received an honorarium, a flat sum that served as a »token of
esteem.« [2] It was only with the increasingly vocal demand by the authors to
secure material and political independence from the patronage and authority
that they started to make claims for rightful remuneration.
## _Of Compensation and Exploitation
_
The moment of full-blown affirmation of romantic author-function marks a
historic moment of redistribution and establishment of compromise between the
right of publishers to economic exploitation of the works and the right of
authors to rightful compensation for their works. Economically this was made
possible by the expanding market for printed books in the eighteenth and the
nineteenth century, while politically this was catalyzed by the growing desire
for autonomy of scientific and literary production from the system of feudal
patronage and censorship in gradually liberalizing modern capitalist
societies. The autonomy of production was substantially coupled to the
production for the market. However, the irenic balance could not last
unobstructed. Once the production of culture and science was subsumed under
the exigencies of the market, it had to follow the laws of commodification and
competition that no commodity production can escape.
With the development of big corporation and monopoly capitalism, [3] the
purported balance between the author and the publisher, the innovator or
scientist and the company, the labor and the capital, the public circulation
and the pressures of monetization has become unhinged. While the legislative
expansions of protections, court decisions, and multilateral treaties are
legitimated on basis of the rights of creators, they have become the economic
basis for the monopolies dominating the commanding heights of the global
economy to protect their dominant position in the world market. The levels of
concentration in the industries with large portfolios of various forms of
intellectual property rights is staggering. The film industry is a US$88
billion industry dominated by six major studios. The recorded music industry
is an almost US$20 billion industry dominated by three major labels. The
publishing industry is a US$120 billion industry, where the leading ten earn
in revenues more than the next 40 largest publishing groups. Among patent
holding industries, the situation is a little more diversified, but big patent
portfolios in general dictate the dynamics of market power.
Academic publishing in particular draws a stark relief of the state of play.
It is a US$10 billion industry dominated by five publishers, financed up to
75% from the subscriptions of libraries. It is notorious for achieving extreme
year on year profit margins – in the case of Reed Elsevier regularly well over
20%, with Taylor & Francis, Springer, and Wiley-Blackwell only just lagging
behind. [4] Given that the work of contributing authors is not paid, but
financed by their institutions (provided they are employed at an institution)
and that the publications nowadays come mostly in the form of electronic
articles licensed under subscription for temporary use to libraries and no
longer sold as printed copies, the public interest could be served at a much
lower cost by leaving commercial closed-access publishers out of the equation.
However, given the entrenched position of these publishers and their control
over the moral economy of reputation in academia, the public disservice that
they do cannot be addressed within the historic ambit of copyright. It
requires politicization.
## _Of Law and Politics_
When we look back on the history of copyright, before there was legality there
was legitimacy. In the context of an almost completely naturalized and
harmonized global regulation of copyright the political question of legitimacy
seems to be no longer on the table. An illegal copy is an object of exchange
that unsettles the existing economies of cultural production. And yet,
copyright nowadays marks a production model that serves the power of
appropriation from the author and market power of the publishers much more
than the labor of cultural producers. Hence the illegal copy is again an
object begging the question as to what do we do at a rare juncture when a
historic opening presents itself to reorganize how a good, such as knowledge
and culture, is produced and distributed in a society. We are at such a
juncture, a juncture where the regime regulating legality and illegality might
be opened to the questioning of its legitimacy or illegitimacy.
1. Jump Up For a more detailed account of this development, as well as for the history of printing privilege in Great Britain, see Mario Biagioli: »From Book Censorship to Academic Peer Review,« in: _Emergences:_ _Journal for the Study of Media & Composite Cultures _12, no. 1 [2002], pp. 11–45.
2. Jump Up The transition of authorship from honorific to professional is traced back in Martha Woodmansee: _The Author, Art, and the Market: Rereading the History of Aesthetics_. New York 1996.
3. Jump Up When referencing monopoly markets, we do not imply purely monopolistic markets, where one company is the only enterprise selling a product, but rather markets where a small number of companies hold most of the market. In monopolistic competition, oligopolies profit from not competing on prices. Rather »all the main players are large enough to survive a price war, and all it would do is shrink the size of the industry revenue pie that the firms are fighting over. Indeed, the price in an oligopolistic industry will tend to gravitate toward what it would be in a pure monopoly, so the contenders are fighting for slices of the largest possible revenue pie.« Robert W. McChesney: _Digital Disconnect: How Capitalism Is Turning the Internet Against Democracy_. New York 2013, pp. 37f. The immediate effect of monopolistic competition in culture is that the consumption is shaped to conform to the needs of the large enterprise, i.e. to accommodate the economies of scale, narrowing the range of styles, expressions, and artists published and promoted in the public.
4. Jump Up Vincent Larivière, Stefanie Haustein, and Philippe Mongeon: »The Oligopoly of Academic Publishers in the Digital Era,« in: _PLoS ONE_ 10, no. 6 [June 2015]: e0127502, doi:10.1371/journal.pone.0127502.
Tomislav Medak is a philosopher with interests in contemporary political
philosophy, media theory and aesthetics. He is coordinating the theory program
and publishing activities of the Multimedia Institute/MAMA (Zagreb/Croatia),
and works in parallel with the Zagreb-based theatre collective BADco.