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
Goldsmith
If We Had To Ask for Permission We Wouldnt Exist: An Open Letter to the Frameworks Community
2010
To the Frameworks Community,
I have been reading your thread on UbuWeb's hacking on the list with great
interest. It seems that with a few exceptions, the list is generally positive
(with reservations) about Ubu, something that makes me happy. Ubu is a friend,
not a foe.
A few things: first of all, Ubu doesn't touch money. We don't make a cent. We
don't accept grants or donations. Nor do we -- or shall we ever -- sell
anything on the site. No one makes a salary here and the work is all done
voluntarily (more love hours than can ever be repaid). Our bandwidth and
server space is donated by universities.
We know that UbuWeb is not very good. In terms of films, the selection is
random and the quality is often poor. The accompanying text to the films can
be crummy, mostly poached from whatever is available around the net. So are
the films: they are mostly grabbed from private closed file-sharing
communities and made available for the public, hence the often lousy quality
of the films. It could be done much better.
Yet, in terms of how we've gone about building the archive, if we had to ask
for permission, we wouldn't exist. Because we have no money, we don't ask
permission. Asking permission always involves paperwork and negotiations,
lawyers, and bank accounts. Yuk. But by doing things the wrong way, we've been
able to pretty much overnight build an archive that's made publically
accessible for free of charge to anyone. And that in turn has attracted a
great number of film and video makers to want to contribute their works to the
archive legitimately. The fastest growing part of Ubu's film section is by
younger and living artists who want to be a part of Ubu. But if you want your
works off Ubu, we never question it and remove it immediately; it's your work
after all. We will try to convince you otherwise, but we will never leave
anything there that an artist or copyright holder wants removed.
Ubu presents orphaned and out-of-print works. Sometimes we had inadvertently
host works that are in print and commercially available for a reasonable
price. While this is strictly against our policy, it happens. (With an army of
interns and students and myself the only one in charge, it's sometimes hard to
keep the whole thing together.) Then someone tells us that we're doing it and
we take it down immediately and apologize. Ouch. The last thing Ubu wants to
do is to harm those who are trying to legitimately sell works. For this
reason, we don't host, for example, any films by Brakhage: they're in print
and affordable for anyone who wants them on DVD or through Netflix. Fantastic.
[The "wall of shame" was a stupid, juvenile move and we removed a few years
ago it when we heard from Joel Bachar that it was hurtful to the community.]
Some of the list members suggested that we work with distributors. That's
exactly what's starting to happen. Last winter, Ubu had a meeting with EAI and
VDB to explore ways that we could move forward together. We need each other.
EAI sent a list of artists who were uncomfortable with their films being
represented on Ubu. We responded by removing them. But others, such as Leslie
Thornton and Peggy Ahwesh insisted that their oeuvres be on Ubu as well as on
EAI. [You can see Leslie Thorton's Ubu page
here](http://ubu.com/film/thornton.html) (all permissioned).
Likewise, a younger generation is starting to see that works must take a
variety of forms and distributive methods, which happen at the same time
without cancelling each other out. The young, prominent video artist Ryan
Trecartin has all his work on Ubu, hi-res copies are distributed by EAI, The
Elizabeth Dee Gallery represent his work (and sells his videos there), while
showing in museums around the world. Clearly Ryan's career hasn't been hurt by
this approach. [You can see his Ryan Trecartin's Ubu page
here](http://ubu.com/film/trecartin.html) (all permissioned).
Older filmmakers and their estates have taken a variety of approaches.
[Michael Snow](http://ubu.com/film/snow.html) contacted Ubu to say that he was
pleased to have some of his films on Ubu, while he felt that others should be
removed. Of course we accommodated him. Having two permissioned films from
Michael Snow beats hosting ten without his blessing. We considered it a
victory. In another case, the children of [Stan
VanDerBeek](http://ubu.com/film/vanderbeek.html) contacted Ubu requesting that
we host their father's films. Re:Voir was upset by this, saying that we were
robbing his children of their royalties when they in fact had given the films
to us. We put a link to purchase DVDs from Re:Voir, regardless. We think
Re:Voir serves a crucial function: Many people prefer their beautiful physical
objects and hi-res DVDs to our pile of pixels. The point is that there is much
(understandable) suspicion and miscommunication. And I'll be the first to
admit that, on a community level, I've remained aloof and distant, and the
cause of much of that alienation. For this, I apologize.
In terms of sales and rentals ("Ubu is bad for business"), you'd know better
than me. But when [Peter Gidal](http://ubu.com/film/gidal.html) approached Ubu
and requested that his films be included in our archive, we were thrilled to
host a number of them. I met Peter in NYC a few months ago and asked him what
the effect of having his films on Ubu had been. He said, in terms of sales and
rentals, it was exactly the same, but in terms of interest, he felt there was
a big uptick from students and scholars by virtue of being able to see and
study that which was unavailable before. Ubu is used mostly by students and in
the classroom. Sadly, as many of you have noted, academic budgets don't
generally provide for adequate rental or projection money. I know this
firsthand: my wife, the video artist [Cheryl
Donegan](http://ubu.com/film/donegan.html) \-- who teaches video at two
prominent East Coast institutions -- is given approximately $200 per semester
(if that) for rentals. Good luck.
This summer, Ubu did a [show at the Walter Reade
Theater](http://www.filmlinc.com/wrt/onsale/fcssummer/ubuweb.html) at Lincoln
Center in NYC. I insisted that we show AVIs and MP4s from the site on their
giant screen. They looked horrible. But that was the point. I wanted to prove
the value of high-resolution DVDs and real film prints. I wanted to validate
the existence of distributors who make these types of copies available. Ubu's
crummy files are a substitute, a thumbnail for the real thing: sitting in a
dark from with like-minded, warm bodies watching an enormous projection in a
room with a great sound system. Cinema, as you know too well, is a social
experience; Ubu pales by comparison. It will never be a substitute. But sadly,
for many -- unable to live near the urban centers where such fare is shown,
trapped by economics, geography, career, circumstance, health, family, etc. --
Ubu is the only lifeline to this kind of work. As such, we believe that we do
more good in the world than harm.
An ideal situation happened when UbuWeb was asked to participate in a
[show](http://www.cca.qc.ca/en/intermission) at the CCA in Montreal. The CCA
insisted on showing hi-res films, which they rented from distributors of
materials that Ubu hosts. We were thrilled. By having these materials
available to be seen on Ubu, it led to rental fees for the artists and income
for the distributors. It was a win-win situation. This Ubu working at its
best.
Finally, I don't really think it's good for me to join the list. I'm not well-
enough versed in your world to keep up with the high level of conversation
going on there. Nor do I wish to get into a pissing match. However, I can be
contacted [here](http://ubu.com/contact) and am happy to respond.
It think that, in the end, Ubu is a provocation to your community to go ahead
and do it right, do it better, to render Ubu obsolete. Why should there only
be one UbuWeb? You have the tools, the resources, the artwork and the
knowledge base to do it so much better than I'm doing it. I fell into this as
Ubu has grown organically (we do it because we can) and am clearly not the
best person to be representing experimental cinema. Ubu would love you to step
in and help make it better. Or, better yet, put us out of business by doing it
correctly, the way it should have been done in the first place.