I first spoke to the patient in the last week of that August. That evening the
sun was tender in drawing its shadows across the lines of his face. The eyes
gazed softly into a close middle distance, as if composing a line upon a
translucent page hung in the middle of the air, the hands tapping out a stanza
or two of music on legs covered by the brown folds of a towelling dressing
gown. He had the air of someone who had seen something of great amazement but
yet lacked the means to put it into language. As I got to know the patient
over the next few weeks I learned that this was not for the want of effort.
In his youth he had dabbled with the world-speak language Volapük, one
designed to do away with the incompatibility of tongues, to establish a
standard in which scientific intercourse might be conducted with maximum
efficiency and with minimal friction in movement between minds, laboratories
and publications. Latin biological names, the magnificent table of elements,
metric units of measurement, the nomenclature of celestial objects from clouds
to planets, anatomical parts and medical conditions all had their own systems
of naming beyond any specific tongue. This was an attempt to bring reason into
speech and record, but there were other means to do so when reality resisted
these early measures.
The dabbling, he reflected, had become a little more than that. He had
subscribed to journals in the language, he wrote letters to colleagues and
received them in return. A few words of world-speak remained readily on his
tongue, words that he spat out regularly into the yellow-wallpapered lounge of
the sanatorium with a disgust that was lugubriously palpable.
According to my records, and in piecing together the notes of previous
doctors, there was something else however, something more profound that the
language only hinted at. Just as the postal system did not require the
adoption of any language in particular but had its formats that integrated
them into addressee, address line, postal town and country, something that
organised the span of the earth, so there was a sense of the patient as having
sustained an encounter with a fundamental form of organisation that mapped out
his soul. More thrilling than the question of language indeed was that of the
system of organisation upon which linguistic symbols are inscribed. I present
for the reader’s contemplation some statements typical of those he seemed to
mull over.
“The index card system spoke to my soul. Suffice it to say that in its use I
enjoyed the highest form of spiritual pleasure, and organisational efficiency,
a profound flowering of intellect in which every thought moved between its
enunciation, evidence, reference and articulation in a mellifluous flow of
ideation and the gratification of curiosity.” This sense of the soul as a
roving enquiry moving across eras, across forms of knowledge and through the
serried landscapes of the vast planet and cosmos was returned to over and
over, a sense that an inexplicable force was within him yet always escaping
his touch.
“At every reference stood another reference, each more interesting than the
last. Each the apex of a pyramid of further reading, pregnant with the threat
of digression, each a thin high wire which, if not observed might lead the
author into the fall of error, a finding already found against and written
up.” He mentions too, a number of times, the way the furniture seemed to
assist his thoughts - the ease of reference implied by the way in which the
desk aligned with the text resting upon the pages of the off-print, journal,
newspaper, blueprint or book above which further drawers of cards stood ready
in their cabinet. All were integrated into the system. And yet, amidst these
frenetic recollections there was a note of mourning in his contemplative
moods, “The superposition of all planes of enquiry and of thought in one
system repels those for whom such harmonious speed is suspicious.” This
thought was delivered with a stare that was not exactly one of accusation, but
that lingered with the impression that there was a further statement to follow
it, and another, queued up ready to follow.
As I gained the trust of the patient, there was a sense in which he estimated
me as something of a junior collaborator, a clerk to his natural role as
manager. A lucky, if slightly doubtful, young man whom he might mentor into
efficiency and a state of full access to information. For his world, there was
not the corruption and tiredness of the old methods. Ideas moved faster in his
mind than they might now across the world. To possess a register of thoughts
covering a period of some years is to have an asset, the value of which is
almost incalculable. That it can answer any question respecting any thought
about which one has had an enquiry is but the smallest of its merits. More
important is the fact that it continually calls attention to matters requiring
such attention.
Much of his discourse was about the optimum means of arrangement of the
system, there was an art to laying out the cards. As the patient further
explained, to meet the objection that loose cards may easily be mislaid, cards
may be tabbed with numbers from one to ten. When arranged in the drawer, these
tabs proceed from left to right across the drawer and the absence of a single
card can thus easily be detected. The cards are further arranged between
coloured guide cards. As an alternative to tabbed cards, signal flags may be
used. Here, metal clips may be attached to the top end of the card and that
stand out like guides. For use of the system in relation to dates of the
month, the card is printed with the numbers 1 to 31 at the top. The metal clip
is placed as a signal to indicate the card is to receive attention on the
specified day. Within a large organisation a further card can be drawn up to
assign responsibility for processing that date’s cards. There were numerous
means of working the cards, special techniques for integrating them into any
type of research or organisation, means by which indexes operating on indexes
could open mines of information and expand the knowledge and capabilities of
mankind.
As he pressed me further, I began to experiment with such methods myself by
withdrawing data from the sanatorium’s records and transferring it to cards in
the night. The advantages of the system are overwhelming. Cards, cut to the
right mathematical degree of accuracy, arrayed readily in drawers, set in
cabinets of standard sizes that may be added to at ease, may be apportioned
out amongst any number of enquirers, all of whom may work on them
independently and simultaneously. The bound book, by contrast, may only be
used by one person at a time and that must stay upon a shelf itself referred
to by an index card system. I began to set up a structure of rows of mirrors
on chains and pulleys and a set of levered and hinged mechanical arms to allow
me to open the drawers and to privately consult my files from any location
within the sanatorium. The clarity of the image is however so far too much
effaced by the diffusion of light across the system.
It must further be borne in mind that a system thus capable of indefinite
expansion obviates the necessity for hampering a researcher with furniture or
appliances of a larger size than are immediately required. The continuous and
orderly sequence of the cards may be extended further into the domain of
furniture and to the conduct of business and daily life. Reasoning, reference
and the order of ideas emerging as they embrace and articulate a chaotic world
and then communicate amongst themselves turning the world in turn into
something resembling the process of thought in an endless process of
consulting, rephrasing, adding and sorting.
For the patient, ideas flowed like a force of life, oblivious to any unnatural
limitation. Thought became, with the proper use of the system, part of the
stream of life itself. Thought moved through the cards not simply at the
superficial level of the movement of fingers and the mechanical sliding and
bunching of cards, but at the most profound depths of the movement between
reality and our ideas of it. The organisational grace to be found in
arrangement, classification and indexing still stirred the remnants of his
nervous system until the last day.
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