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
Hamerman
Pirate Libraries and the Fight for Open Information
2015
| | SEPTEMBER 11TH, 2015 | A BI-WEEKLY WEBPAPER | ISSUE 61
|
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PIRATE LIBRARIES and the fight for open information
/ by _Sarah Hamerman_ |
In a digital era that destabilizes traditional notions of intellectual
property, cultural producers must rethink information access.
Over the last several years, a number of _pirate libraries_ have done just
that. Collaboratively run digital libraries such as
[_Aaaaaarg_](http://aaaaarg.fail/),
_[Monoskop](http://www.monoskop.org/Monoskop)_ , _[Public
Library](https://www.memoryoftheworld.org/)_ , and
_[UbuWeb_](http://www.ubuweb.tv/) have emerged, offering access to humanities
texts and audiovisual resources that are technically ‘pirated’ and often hard
to find elsewhere.
Though these sites differ somewhat in content, architecture, and ideological
bent, all of them disavow intellectual copyright law to varying degrees,
offering up pirated books and media with the aim of advancing information
access.
“Information wants to be free,” has served as a catchphrase in recent internet
activism, calling for information democracy, led by media, library and
information advocates.
As online information access is increasingly embedded within the networks of
capital, the digital text-sharing underground actualizes the Internet’s
potential to build a true information commons.
With such projects, the archive becomes a record of collective power, not
corporate or state power; the digital book becomes unlocked, linkable, and
shareable.
Still, these sites comprise but a small subset of the networks of peer-to-peer
file sharing. Many legal battles waged over the explosion of audiovisual file
sharing through p2p services such as Napster, BitTorrent and MediaFire. At its
peak, Napster boasted over 80 million users; the p2p music-sharing service was
shut down after a high-profile lawsuit by the RIAA in 2001.
The US Department of Justice brought charges against open access activist
_[Aaron Swartz](http://www.fvckthemedia.com/issue51/editorial)_ in 2011 for
his large-scale unauthorized downloading of files from the JStor Academic
database. Swartz, who sadly committed suicide before his trial, was an
organizer for Demand Progress, a campaign against the Stop Online Piracy Act,
which was defeated in 2012. Swartz’s actions and the fight around SOPA
represent a benchmark in the struggle for open-access and anti-copyright
practices surrounding the digital book.
Aaaaaarg, Monoskop, UbuWeb and Public Library are representative cases of the
pirate library because of their explicit engagement with archival form, their
embrace of ideas of the _[digital commons](https://en.wikipedia.org/wiki/Digital_Commons)_ within current left-leaning thought, and their like-minded focus on critical theory and the arts.
All of these projects lend themselves to be considered _as libraries_ ,
retooled for open digital networks.
_Aaaaaarg.org_ , started by Los Angeles based artist Sean Dockray, hosts
full-text pdfs of over 50,000 books and articles. The library is connected to a an
alternative education project called the Public School, which serves as a
platform for self-organizing lectures, workshops and projects in cities across
the globe. _Aaaaaarg_ ’s catalog is viewable by the public, but
upload/download privileges are restricted through an invite system, thus
circumventing copyright law.
The site is divided into a “Library,” in which users can search for texts by
author; “Collections,” or user-generated grouping of texts designed for
reading groups or research interests; and “Discussions,” a message board where
participants can request texts and volunteer for working groups. Most
recently, _Aaaaaarg_ has introduced a “compiler” tool that allows readers to
select excerpts from longer texts and assemble them into new PDFs, and a
reading tool that allows readers to save reference points and insert comments
into texts. Though the library is easily searchable, it doesn’t maintain
high-quality _[metadata](https://en.wikipedia.org/wiki/Metadata)_. Dockray and
other organizers intend to preserve a certain subjective and informal quality,
focusing more on discussion and collaboration than correct preservation and
classification practice.
_Aaaaaarg_ has been threatened with takedowns a few times, but has survived by
creating mirrored sites and reconstituted itself by varying the number of A’s
in the URL. Its shifts in location, organization, and capabilities reflect
both the decentralized, ad-hoc nature of its maintenance and the organizers’
attempts to elude copyright regulations. Text-sharing sites such as _Aaaaaarg_
have also been referred to as _[shadow
libraries_](http://supercommunity.e-flux.com/texts/sharing-instinct/),
reflecting their quasi-covert status and their efforts to evade shutdown.
Monoskop.org, a project founded by media artist _[Dušan
Barok](http://monoskop.org/Du%C5%A1an_Barok)_ , is a wiki for collaborative
studies of art, media and the humanities that was born in 2004 out of Barok’s
study of media art and related cultural practices. Its significant holdings -
about 3,000 full-length texts and many more excerpts, links and citations -
include avant-garde and modernist magazines, writings on sound art, scanned
illustrations, and media theory texts.
As a wiki, any user can edit any article or upload content, and see their
changes reflected immediately. Monoskop is comprised of two sister sites: the
Monoskop wiki and Monoskop Log, the accompanying text repository. Monoskop Log
is structured as a Wordpress site with links hosted on third-party sites, much
like the rare-music download blogs that became popular in the mid-2000s.
Though this architecture is relatively unstable, links are fixed on-demand and
site mirroring and redundancy balance out some of the instability.
Monoskop makes clear that it is offering content under the fair-use doctrine
and that this content is for personal and scholarly use, not commercial use.
Barok notes that though there have been a small number of takedowns, people
generally appreciate unrestricted access to the types of materials in Monoskop
log, whether they are authors or publishers.
_Public Library_ , a somewhat newer pirate library founded by Croatian
Internet activist and researcher Marcell Mars and his collaborators, currently
offers a collection of about 6,300 texts. The project frames itself through a
utopian philosophy of building a truly universal library, radically extending
enlightenment-era conceptions of democracy. Through democratizing the _tools
of librarianship_ – book scanning, classification systems, cataloging,
information – it promises a broader, de-institutionalized public library.
In __[Public Library: An
Essay](https://www.memoryoftheworld.org/blog/2014/10/27/public-library-an-essay/#sdendnote19sym)__ , Public Library’s organizers frame p2p libraries as
“fragile knowledge infrastructures built and maintained by brave librarians
practicing civil disobedience which the world of researchers in the humanities
rely on.” This civil disobedience is a politically motivated refutation of
intellectual property law and the orientation of information networks toward
venture capital and advertising. While the pirate libraries fulfill this
dissident function as a kind of experimental provocation, their content is
audience-specific rather than universal.
_[UbuWeb](http://www.ubuweb.com/resources/index.html)_ , founded in 1996 by
conceptual artist/ writer Kenneth Goldsmith, is the largest online archive of
avant-garde art resources. Its holdings include sound, video and text-based
works dating from the historical avant-garde era to today. While many of the
sites in the “pirate library” continuum source their content through
community-based or peer-to-peer models, UbuWeb focuses on making available out
of print, obscure or difficult to access artistic media, stating that
uploading such historical artifacts doesn’t detract from the physical value of
the work; rather, it enhances it. The website’s philosophy blends the utopian
ideals of avant-garde concrete poetry with the ideals of the digital gift
economy, and it has specifically refused to accept corporate or foundation
funding or adopt a more market-oriented business model.
**Pirate Libraries vs. “The Sharing Economy”**
In pirate libraries, information users become archive builders by uploading
often-copyrighted content to shared networks.
Within the so-called “ _[sharing
economy](https://en.wikipedia.org/wiki/Sharing_economy)_ ,” users essentially
lease e-book content from information corporations such as Amazon, which
markets both the Kindle as platform. This centralization of intellectual
property has dire impacts on the openness of the digital book as a
collaborative knowledge-sharing device.
In contrast, the pirate library actualizes a gift economy based on qualitative
and communal rather than monetized exchange. As Mackenzie Wark writes in _A
Hacker Manifesto_ (2004), “The gift is marginal, but nevertheless plays a
vital role in cementing reciprocal and communal relations among people who
otherwise can only confront each other as buyers and sellers of commodities.”
From theorizing new media art to building solidarity against repressive
regimes, such communal information networks can crucially articulate shared
bodies of political and aesthetic desire and meaning. According to author
Matthew Stadler, literature is by nature communal. “Literature is not owned,”
he writes. “It is, by definition, a space of mutually negotiated meanings that
never closes or concludes, a space that thrives on — indeed requires — open
access and sharing.”
In a roundtable discussion published in _New Formations_ , _Aaaaaarg_ founder
Sean Dockray remarks that the site “actively explored and exploited the
affordances of asynchronous, networked communication,” functioning upon the
logic of the hack. Dockray continues: “But all of this is rather commonplace
for what’s called ‘piracy,’ isn’t it?” Pirate librarianship can be thought of
as a practice of civil disobedience within the stringent information
environment of today.
These projects promise both the realization and destruction of the public
library. They promote information democracy while calling the _professional_
institution of the Library into question, allowing amateurs to upload,
catalog, lend and maintain collections. In _Public Library: An Essay_ , Public
Library’s organizers _[write](https://www.memoryoftheworld.org/blog/2014/10/27
/public-library-an-essay/)_ : “With the emergence of the internet…
librarianship has been given an opportunity… to include thousands of amateur
librarians who will, together with the experts, build a distributed peer-to-peer network to care for the catalog of available knowledge.”
Public Library frames amateur librarianship as a free, collaboratively
maintained and democratic activity, drawing upon the language of the French
Revolution and extending it for the 21st century. While these practices are
democratic in form, they are not necessarily democratic in the populist sense;
rather, they focus on bringing high theoretical discourses to people outside
the academy. Accordingly, they attract a modest but engaged audience of
critics, artists, designers, activists, and scholars.
The activities of Aaaaaarg and Public Library may fall closer to ‘ _[peer
preservation](http://computationalculture.net/article/book-piracy-as-peer-preservation)_ ’
than ‘peer production,’ as the desires to share information
widely and to preserve these collections against shutdown often come into
conflict. In a _[recent piece](http://supercommunity.e-flux.com/texts/sharing-instinct/)_ for e-flux coauthored with Lawrence Liang, Dockray accordingly
laments “the unfortunate fact that digital shadow libraries have to operate
somewhat below the radar: it introduces a precariousness that doesn’t allow
imagination to really expand, as it becomes stuck on techniques of evasion,
distribution, and redundancy.”
UbuWeb and Monoskop, which digitize rare, out-of-print art texts and media
rather than in-print titles, can be said to fulfill the aims of preservation
and access. UbuWeb and Monoskop are openly used and discussed as classroom
resources and in online arts journalism more frequently than the more
aggressively anti-copyright sources; more on-the-record and mainstream
visibility likely -- but doesn’t necessarily -- equate to wider usage.
**From Alternative Space to Alternative Media**
Aaaaaarg _[locates itself as a
‘scaffolding’](http://chtodelat.org/b9-texts-2/vilensky/materialities-of-independent-publishing-a-conversation-with-aaaaarg-chto-delat-i-cite-mute-and-neural/)_ between institutions, a platform that unfolds between institutional
gaps and fills them in, rather than directly opposing them. Over ten years
after it was founded, it continues to provide a community for “niche”
varieties of political critique.
Drawing upon different strains of ‘alternative networking,’ the digital
text-sharing underground gives a voice to those quieted by the mechanisms of
institutional archives, publishing, and galleries. On the one hand, pirate
libraries extend the logic of alternative art spaces/artist-run spaces that
challenge the “white cube” and the art market; instead, they showcase ways of
making that are often ephemeral, performative, and anti-commercial.
Lawrence Liang refers to projects such as Aaaaaarg as “ _[ludic
libraries](http://supercommunity.e-flux.com/texts/sharing-instinct/)_ ,” as
they encourage a sense of intellectual play that deviates from well-
established norms of utility, seriousness, purpose, and property.
Just as alternative, community-oriented art spaces promote “fringe” art forms,
the pirate libraries build upon open digital architectures to promote “fringe”
scholarship, art, technological and archival practices. Though the comparison
between physical architecture and virtual architecture is a metaphor here, the
impact upon creative communities runs parallel.
At the same time, the digital text-sharing underground builds upon Robert W.
McChesney’s calls in _Digital Disconnect_ for a democratic media system that
promotes the expansion of public, student and community journalism. A truly
heterogeneous media system, for McChesney, would promote a multiplicity of
opinions, supplementing for-profit mass media with a substantial and varied
portion of nonprofit and independent media.
In order to create a political system – and a media system – that reflects
multiple interests, rather than the supposedly neutral status quo, we must
support truly free, not-for-profit alternatives to corporate journalism and
“clickbait” media designed to lure traffic for advertisers. We must support
creative platforms that encourage blending high-academic language with pop-
culture; quantitative analysis with art-making; appropriation with
authenticity: the pirate libraries serve just these purposes.
Pirate libraries help bring about what Gary Hall calls the “unbound book” as
text-form; as he writes, we can perceive such a digital book “as liquid and
living, open to being continually updated and collaboratively written, edited,
annotated, critiqued, updated, shared, supplemented, revised, re-ordered,
reiterated and reimagined.” These projects allow us to re-imagine both
archival practices and the digital book for social networks based on the gift.
Aaaaaarg, Monoskop, UbuWeb, and Public Library build a record of critical and
artistic discourse that is held in common, user-responsive and networkable.
Amateur librarians sustain these projects through technological ‘hacks’ that
innovate upon present archival tools and push digital preservation practices
forward.
Pirate libraries critique the ivory tower’s monopoly over the digital book.
They posit a space where alternative communities can flourish.
Between the cracks of the new information capital, the digital text-sharing
underground fosters the coming-into-being of another kind of information
society, one in which the historical record is the democratically-shared basis
for new forms of knowledge.
From this we should take away the understanding that _piracy is normal_ and
the public domain it builds is abundant. While these practices will continue
just beneath the official surface of the information economy, it is high time
for us to demand that our legal structures catch up.