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
Custodians
In solidarity with Library Genesis and Sci-Hub
2015
# In solidarity with [Library Genesis](http://libgen.io) and [Sci-Hub](http
://sci-hub.io)
In Antoine de Saint Exupéry's tale the Little Prince meets a businessman who
accumulates stars with the sole purpose of being able to buy more stars. The
Little Prince is perplexed. He owns only a flower, which he waters every day.
Three volcanoes, which he cleans every week. "It is of some use to my
volcanoes, and it is of some use to my flower, that I own them," he says, "but
you are of no use to the stars that you own".
There are many businessmen who own knowledge today. Consider Elsevier, the
largest scholarly publisher, whose 37% profit margin1 stands in sharp contrast
to the rising fees, expanding student loan debt and poverty-level wages for
adjunct faculty. Elsevier owns some of the largest databases of academic
material, which are licensed at prices so scandalously high that even Harvard,
the richest university of the global north, has complained that it cannot
afford them any longer. Robert Darnton, the past director of Harvard Library,
says "We faculty do the research, write the papers, referee papers by other
researchers, serve on editorial boards, all of it for free … and then we buy
back the results of our labour at outrageous prices."2 For all the work
supported by public money benefiting scholarly publishers, particularly the
peer review that grounds their legitimacy, journal articles are priced such
that they prohibit access to science to many academics - and all non-academics
- across the world, and render it a token of privilege.3
Elsevier has recently filed a copyright infringement suit in New York against
Science Hub and Library Genesis claiming millions of dollars in damages.4 This
has come as a big blow, not just to the administrators of the websites but
also to thousands of researchers around the world for whom these sites are the
only viable source of academic materials. The social media, mailing lists and
IRC channels have been filled with their distress messages, desperately
seeking articles and publications.
Even as the New York District Court was delivering its injunction, news came
of the entire editorial board of highly-esteemed journal Lingua handing in
their collective resignation, citing as their reason the refusal by Elsevier
to go open access and give up on the high fees it charges to authors and their
academic institutions. As we write these lines, a petition is doing the rounds
demanding that Taylor & Francis doesn't shut down Ashgate5, a formerly
independent humanities publisher that it acquired earlier in 2015. It is
threatened to go the way of other small publishers that are being rolled over
by the growing monopoly and concentration in the publishing market. These are
just some of the signs that the system is broken. It devalues us, authors,
editors and readers alike. It parasites on our labor, it thwarts our service
to the public, it denies us access6.
We have the means and methods to make knowledge accessible to everyone, with
no economic barrier to access and at a much lower cost to society. But closed
access’s monopoly over academic publishing, its spectacular profits and its
central role in the allocation of academic prestige trump the public interest.
Commercial publishers effectively impede open access, criminalize us,
prosecute our heroes and heroines, and destroy our libraries, again and again.
Before Science Hub and Library Genesis there was Library.nu or Gigapedia;
before Gigapedia there was textz.com; before textz.com there was little; and
before there was little there was nothing. That's what they want: to reduce
most of us back to nothing. And they have the full support of the courts and
law to do exactly that.7
In Elsevier's case against Sci-Hub and Library Genesis, the judge said:
"simply making copyrighted content available for free via a foreign website,
disserves the public interest"8. Alexandra Elbakyan's original plea put the
stakes much higher: "If Elsevier manages to shut down our projects or force
them into the darknet, that will demonstrate an important idea: that the
public does not have the right to knowledge."
We demonstrate daily, and on a massive scale, that the system is broken. We
share our writing secretly behind the backs of our publishers, circumvent
paywalls to access articles and publications, digitize and upload books to
libraries. This is the other side of 37% profit margins: our knowledge commons
grows in the fault lines of a broken system. We are all custodians of
knowledge, custodians of the same infrastructures that we depend on for
producing knowledge, custodians of our fertile but fragile commons. To be a
custodian is, de facto, to download, to share, to read, to write, to review,
to edit, to digitize, to archive, to maintain libraries, to make them
accessible. It is to be of use to, not to make property of, our knowledge
commons.
More than seven years ago Aaron Swartz, who spared no risk in standing up for
what we here urge you to stand up for too, wrote: "We need to take
information, wherever it is stored, make our copies and share them with the
world. We need to take stuff that's out of copyright and add it to the
archive. We need to buy secret databases and put them on the Web. We need to
download scientific journals and upload them to file sharing networks. We need
to fight for Guerilla Open Access. With enough of us, around the world, we'll
not just send a strong message opposing the privatization of knowledge — we'll
make it a thing of the past. Will you join us?"9
We find ourselves at a decisive moment. This is the time to recognize that the
very existence of our massive knowledge commons is an act of collective civil
disobedience. It is the time to emerge from hiding and put our names behind
this act of resistance. You may feel isolated, but there are many of us. The
anger, desperation and fear of losing our library infrastructures, voiced
across the internet, tell us that. This is the time for us custodians, being
dogs, humans or cyborgs, with our names, nicknames and pseudonyms, to raise
our voices.
Share this letter - read it in public - leave it in the printer. Share your
writing - digitize a book - upload your files. Don't let our knowledge be
crushed. Care for the libraries - care for the metadata - care for the backup.
Water the flowers - clean the volcanoes.
30 November 2015
Dusan Barok, Josephine Berry, Bodo Balazs, Sean Dockray, Kenneth Goldsmith,
Anthony Iles, Lawrence Liang, Sebastian Luetgert, Pauline van Mourik Broekman,
Marcell Mars, spideralex, Tomislav Medak, Dubravka Sekulic, Femke Snelting...
* * *
1. Lariviere, Vincent, Stefanie Haustein, and Philippe Mongeon. “[The Oligopoly of Academic Publishers in the Digital Era.](http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0127502)” PLoS ONE 10, no. 6 (June 10, 2015): e0127502. doi:10.1371/journal.pone.0127502.,
“[The Obscene Profits of Commercial Scholarly
Publishers.](http://svpow.com/2012/01/13/the-obscene-profits-of-commercial-
scholarly-publishers/)” svpow.com. Accessed November 30, 2015. ↩
2. Sample, Ian. “[Harvard University Says It Can’t Afford Journal Publishers’ Prices.](http://www.theguardian.com/science/2012/apr/24/harvard-university-journal-publishers-prices)” The Guardian, April 24, 2012, sec. Science. theguardian.com. ↩
3. “[Academic Paywalls Mean Publish and Perish - Al Jazeera English.](http://www.aljazeera.com/indepth/opinion/2012/10/20121017558785551.html)” Accessed November 30, 2015. aljazeera.com. ↩
4. “[Sci-Hub Tears Down Academia’s ‘Illegal’ Copyright Paywalls.](https://torrentfreak.com/sci-hub-tears-down-academias-illegal-copyright-paywalls-150627/)” TorrentFreak. Accessed November 30, 2015. torrentfreak.com. ↩
5. “[Save Ashgate Publishing.](https://www.change.org/p/save-ashgate-publishing)” Change.org. Accessed November 30, 2015. change.org. ↩
6. “[The Cost of Knowledge.](http://thecostofknowledge.com/)” Accessed November 30, 2015. thecostofknowledge.com. ↩
7. In fact, with the TPP and TTIP being rushed through the legislative process, no domain registrar, ISP provider, host or human rights organization will be able to prevent copyright industries and courts from criminalizing and shutting down websites "expeditiously". ↩
8. “[Court Orders Shutdown of Libgen, Bookfi and Sci-Hub.](https://torrentfreak.com/court-orders-shutdown-of-libgen-bookfi-and-sci-hub-151102/)” TorrentFreak. Accessed November 30, 2015. torrentfreak.com. ↩
9. “[Guerilla Open Access Manifesto.](https://archive.org/stream/GuerillaOpenAccessManifesto/Goamjuly2008_djvu.txt)” Internet Archive. Accessed November 30, 2015. archive.org. ↩
Traditional libraries are increasingly putting their holdings online, if not
in competition with Google Books then in partnership, in order to keep pace
with the mass digitization of content. Yet it isn't only the big institutional
actors that are driving this process forward: small-scale, independent
initiatives based on open source principles offer interesting approaches to
re-defining the role and meaning of the library, writes Alessandro Ludovico.
A deep conflict is brewing silently in libraries around the globe. Traditional
librarians - skilled, efficient and acknowledged - are being threatened by
bosses, themselves trying to cope with substantial funding cuts, with the word
"digital", touted as a panacea for saving space and money. At the same time,
in other (less traditional) places, there is a massive digitization of books
underway aimed at establishing virtual libraries much bigger than any
conventional one. These phenomena are questioning the library as point of
reference and as public repository of knowledge. Not only is its bulky
physicality being questioned, but the core idea that, after the advent of
truly ubiquitous networks, we still need a central place to store, preserve,
index, lend and share knowledge.
Tablet-PC on hardcover book. Photo: Anton Kudelin. Source: Shutterstock
It is important not to forget that traditional libraries (public and private)
still guarantee the preservation of and access to a huge number of digitally-
unavailable texts, and that a book's material condition sometimes tells part
of the story, not to mention the experience of reading it in a library. Still,
it is evident that we are facing the biggest digitization ever attempted, in a
process comparable to what Napster meant for music in the early 2000s. But
this time there are many more "institutional" efforts running simultaneously,
so that we are constantly hearing announcements that new historical material
has been made accessible online by libraries and institutions of all sizes.
The biggest digitizers are Google Books (private) and Internet Archive (non-
profit). The former is officially aiming to create a privately owned,
"universal library", which in April 2013 claimed to contain 30 millions
digitized books.1 The latter is an effort to make a comparably huge public
library by using Creative Commons licenses and getting rid of Digital Rights
Management chains, and currently claims to hold almost 5 millions digitized
books.
These monumental efforts are struggling with one specific element: the time it
takes to create digital content by converting it from another medium. This
process, of course, creates accidents. Krissy Wilson's blog/artwork _The Art
of Google Books_2 explores daily the non-digital elements (accidental or not)
emerging in scanned pages, which can be purely material - such as scribbled
notes, parts of the scanning person's hand, dried flowers - or typographical
or linguistic, or deleted or missing parts, all of them precisely annotated.
This small selection of illustrations of how physicality causes technology to
fail may be self-reflective, but it shows a particular aspect of a larger
development. In fact, industrial scanning is only one side of the coin. The
other is the private and personal digitization and sharing of books.
On the basis of brilliant open source tools like the DIY Bookscanner,3 there
are various technical and conceptual efforts to building specialist digital
libraries. _Monoskop_4 is exemplary: its creator Dusan Barok has transformed
his impressive personal collection of media (about contemporary art, culture
and politics, with a special focus on eastern Europe) into a common resource,
freely downloadable and regularly updated. It is a remarkably inspired
selection that can be shared regardless of possible copyright restrictions.
_Monoskop_ is an extreme and excellent example of a personal digital library
made public. But any small or big collection can be easily shared. Calibre5 is
an open source software that enables one to efficiently manage a personal
library and to create temporary or stable autonomous zones in which entire
libraries can be shared among a few friends or entire communities.
Marcell Mars,6 a hacktivist and programmer, has worked intensively around this
subject. Together with Tomislav Medak and Vuk Cosic, he organized the HAIP
2012 festival in Ljubljana, where software developers worked collectively on a
complex interface for searching and downloading from major independent online
e-book collections, turning them into a sort of temporary commons. Mars'
observation that, "when everyone is a librarian, the library is everywhere,"
explains the infinite and recursive de-centralization of personal digital
collections and the role of the digital in granting much wider access to
published content.
This access, however, emphasizes the intrinsic fragility of the digital - its
complete dependence on electricity and networks, on the integrity of storage
media and on updated hard and software. Among the few artists to have
conceptually explored this fragility as it affects books is David Guez, whose
work _Humanpédia_7 can be defined as an extravagant type of "time-based art".
The work is clearly inspired by Ray Bradbury's _Fahrenheit 451_ , in which a
small secret community conspires against a total ban on books by memorizing
entire tomes, preserving and orally transmitting their contents. Guez applies
this strategy to Wikipedia, calling for people to memorize a Wikipedia
article, thereby implying that our brains can store information more reliably
than computers.
So what, in the end, will be the role of old-fashioned libraries?
Paradoxically enough, they could become the best place to learn how to
digitize books or how to print out and bind digitized books that have gone out
of print. But they must still be protected as a common good, where cultural
objects can be retrieved and enjoyed anytime in the future. A timely work in
this respect is La Société Anonyme's _The SKOR Codex_.8 The group (including
Dusan Barok, Danny van der Kleij, Aymeric Mansoux and Marloes de Valk) has
printed a book whose content (text, pictures and sounds) is binary encoded,
with enclosed visual instructions about how to decode it. A copy will be
indefinitely preserved at the Bibliothèque nationale de France by signed
agreement. This work is a time capsule, enclosing information meant to be
understood in the future. At any rate, we can rest assured that it will be
there (with its digital content), ready to be taken from the shelf, for many
years to come.