_A talk given on the second day of the conference_ [Off the
Press](http://digitalpublishingtoolkit.org/22-23-may-2014/program/) _held at
WORM, Rotterdam, on May 23, 2014. Also available
in[PDF](/images/2/28/Barok_2014_Communing_Texts.pdf "Barok 2014 Communing
Texts.pdf")._
I am going to talk about publishing in the humanities, including scanning
culture, and its unrealised potentials online. For this I will treat the
internet not only as a platform for storage and distribution but also as a
medium with its own specific means for reading and writing, and consider the
relevance of plain text and its various rendering formats, such as HTML, XML,
markdown, wikitext and TeX.
One of the main reasons why books today are downloaded and bookmarked but
hardly read is the fact that they may contain something relevant but they
begin at the beginning and end at the end; or at least we are used to treat
them in this way. E-book readers and browsers are equipped with fulltext
search functionality but the search for "how does the internet change the way
we read" doesn't yield anything interesting but the diversion of attention.
Whilst there are dozens of books written on this issue. When being insistent,
one easily ends up with a folder with dozens of other books, stucked with how
to read them. There is a plethora of books online, yet there are indeed mostly
machines reading them.
It is surely tempting to celebrate or to despise the age of artificial
intelligence, flat ontology and narrowing down the differences between humans
and machines, and to write books as if only for machines or return to the
analogue, but we may as well look back and reconsider the beauty of simple
linear reading of the age of print, not for nostalgia but for what we can
learn from it.
This perspective implies treating texts in their context, and particularly in
the way they commute, how they are brought in relations with one another, into
a community, by the mere act of writing, through a technique that have
developed over time into what we have came to call _referencing_. While in the
early days referring to texts was practised simply as verbal description of a
referred writing, over millenia it evolved into a technique with standardised
practices and styles, and accordingly: it gained _precision_. This precision
is however nothing machinic, since referring to particular passages in other
texts instead of texts as wholes is an act of comradeship because it spares
the reader time when locating the passage. It also makes apparent that it is
through contexts that the web of printed books has been woven. But even though
referencing in its precision has been meant to be very concrete, particularly
the advent of the web made apparent that it is instead _virtual_. And for the
reader, laborous to follow. The web has shown and taught us that a reference
from one document to another can be plastic. To follow a reference from a
printed book the reader has to stand up, walk down the street to a library,
pick up the referred volume, flip through its pages until the referred one is
found and then follow the text until the passage most probably implied in the
text is identified, while on the web the reader, _ideally_ , merely moves her
finger a few milimeters. To click or tap; the difference between the long way
and the short way is obviously the hyperlink. Of course, in the absence of the
short way, even scholars are used to follow the reference the long way only as
an exception: there was established an unwritten rule to write for readers who
are familiar with literature in the respective field (what in turn reproduces
disciplinarity of the reader and writer), while in the case of unfamiliarity
with referred passage the reader inducts its content by interpreting its
interpretation of the writer. The beauty of reading across references was
never fully realised. But now our question is, can we be so certain that this
practice is still necessary today?
The web silently brought about a way to _implement_ the plasticity of this
pointing although it has not been realised as the legacy of referencing as we
know it from print. Today, when linking a text and having a particular passage
in mind, and even describing it in detail, the majority of links physically
point merely to the beginning of the text. Hyperlinks are linking documents as
wholes by default and the use of anchors in texts has been hardly thought of
as a _requirement_ to enable precise linking.
If we look at popular online journalism and its use of hyperlinks within the
text body we may claim that rarely someone can afford to read all those linked
articles, not even talking about hundreds of pages long reports and the like
and if something is wrong, it would get corrected via comments anyway. On the
internet, the writer is meant to be in more immediate feedback with the
reader. But not always readers are keen to comment and not always they are
allowed to. We may be easily driven to forget that quoting half of the
sentence is never quoting a full sentence, and if there ought to be the entire
quote, its source text in its whole length would need to be quoted. Think of
the quote _information wants to be free_ , which is rarely quoted with its
wider context taken into account. Even factoids, numbers, can be carbon-quoted
but if taken out of the context their meaning can be shaped significantly. The
reason for aversion to follow a reference may well be that we are usually
pointed to begin reading another text from its beginning.
While this is exactly where the practices of linking as on the web and
referencing as in scholarly work may benefit from one another. The question is
_how_ to bring them closer together.
An approach I am going to propose requires a conceptual leap to something we
have not been taught.
For centuries, the primary format of the text has been the page, a vessel, a
medium, a frame containing text embedded between straight, less or more
explicit, horizontal and vertical borders. Even before the material of the
page such as papyrus and paper appeared, the text was already contained in
lines and columns, a structure which we have learnt to perceive as a grid. The
idea of the grid allows us to view text as being structured in lines and
pages, that are in turn in hand if something is to be referred to. Pages are
counted as the distance from the beginning of the book, and lines as the
distance from the beginning of the page. It is not surprising because it is in
accord with inherent quality of its material medium -- a sheet of paper has a
shape which in turn shapes a body of a text. This tradition goes as far as to
the Ancient times and the bookroll in which we indeed find textual grids.
[](/File:Papyrus_of_Plato_Phaedrus.jpg)
A crucial difference between print and digital is that text files such as HTML
documents nor markdown documents nor database-driven texts did inherit this
quality. Their containers are simply not structured into pages, precisely
because of the nature of their materiality as media. Files are written on
memory drives in scattered chunks, beginning at point A and ending at point B
of a drive, continuing from C until D, and so on. Where does each of these
chunks start is ultimately independent from what it contains.
Forensic archaeologists would confirm that when a portion of a text survives,
in the case of ASCII documents it is not a page here and page there, or the
first half of the book, but textual blocks from completely arbitrary places of
the document.
This may sound unrelated to how we, humans, structure our writing in HTML
documents, emails, Office documents, even computer code, but it is a reminder
that we structure them for habitual (interfaces are rectangular) and cultural
(human-readability) reasons rather then for a technical necessity that would
stem from material properties of the medium. This distinction is apparent for
example in HTML, XML, wikitext and TeX documents with their content being both
stored on the physical drive and treated when rendered for reading interfaces
as single flow of text, and the same goes for other texts when treated with
automatic line-break setting turned off. Because line-breaks and spaces and
everything else is merely a number corresponding to a symbol in character set.
So how to address a section in this kind of document? An option offers itself
-- how computers do, or rather how we made them do it -- as a position of the
beginning of the section in the array, in one long line. It would mean to
treat the text document not in its grid-like format but as line, which merely
adapts to properties of its display when rendered. As it is nicely implied in
the animated logo of this event and as we know it from EPUBs for example.
In the case of 'reference-linking' we can refer to a passage by including the
information about its beginning and length determined by the character
position within the text (in analogy to _pp._ operator used for printed
publications) as well as the text version information (in printed texts served
by edition and date of publication). So what is common in printed text as the
page information is here replaced by the character position range and version.
Such a reference-link is more precise while addressing particular section of a
particular version of a document regardless of how it is rendered on an
interface.
It is a relatively simple idea and its implementation does not be seem to be
very hard, although I wonder why it has not been implemented already. I
discussed it with several people yesterday to find out there were indeed
already attempts in this direction. Adam Hyde pointed me to a proposal for
_fuzzy anchors_ presented on the blog of the Hypothes.is initiative last year,
which in order to overcome the need for versioning employs diff algorithms to
locate the referred section, although it is too complicated to be explained in
this setting.[1] Aaaarg has recently implemented in its PDF reader an option
to generate URLs for a particular point in the scanned document which itself
is a great improvement although it treats texts as images, thus being specific
to a particular scan of a book, and generated links are not public URLs.
Using the character position in references requires an agreement on how to
count. There are at least two options. One is to include all source code in
positioning, which means measuring the distance from the anchor such as the
beginning of the text, the beginning of the chapter, or the beginning of the
paragraph. The second option is to make a distinction between operators and
operands, and count only in operands. Here there are further options where to
make the line between them. We can consider as operands only characters with
phonetic properties -- letters, numbers and symbols, stripping the text from
operators that are there to shape sonic and visual rendering of the text such
as whitespaces, commas, periods, HTML and markdown and other tags so that we
are left with the body of the text to count in. This would mean to render
operators unreferrable and count as in _scriptio continua_.
_Scriptio continua_ is a very old example of the linear onedimensional
treatment of the text. Let's look again at the bookroll with Plato's writing.
Even though it is 'designed' into grids on a closer look it reveals the lack
of any other structural elements -- there are no spaces, commas, periods or
line-breaks, the text is merely one flow, one long line.
_Phaedrus_ was written in the fourth century BC (this copy comes from the
second century AD). Word and paragraph separators were reintroduced much
later, between the second and sixth century AD when rolls were gradually
transcribed into codices that were bound as pages and numbered (a dramatic
change in publishing comparable to digital changes today).[2]
'Reference-linking' has not been prominent in discussions about sharing books
online and I only came to realise its significance during my preparations for
this event. There is a tremendous amount of very old, recent and new texts
online but we haven't done much in opening them up to contextual reading. In
this there are publishers of all 'grounds' together.
We are equipped to treat the internet not only as repository and library but
to take into account its potentials of reading that have been hiding in front
of our very eyes. To expand the notion of hyperlink by taking into account
techniques of referencing and to expand the notion of referencing by realising
its plasticity which has always been imagined as if it is there. To mesh texts
with public URLs to enable entaglement of referencing and hyperlinks. Here,
open access gains its further relevance and importance.
Dušan Barok
_Written May 21-23, 2014, in Vienna and Rotterdam. Revised May 28, 2014._
Notes
1. ↑ Proposals for paragraph-based hyperlinking can be traced back to the work of Douglas Engelbart, and today there is a number of related ideas, some of which were implemented on a small scale: fuzzy anchoring, 1(http://hypothes.is/blog/fuzzy-anchoring/); purple numbers, 2(http://project.cim3.net/wiki/PMWX_White_Paper_2008); robust anchors, 3(http://github.com/hypothesis/h/wiki/robust-anchors); _Emphasis_ , 4(http://open.blogs.nytimes.com/2011/01/11/emphasis-update-and-source); and others 5(http://en.wikipedia.org/wiki/Fragment_identifier#Proposals). The dependence on structural elements such as paragraphs is one of their shortcoming making them not suitable for texts with longer paragraphs (e.g. Adorno's _Aesthetic Theory_ ), visual poetry or computer code; another is the requirement to store anchors along the text.
2. ↑ Works which happened not to be of interest at the time ceased to be copied and mostly disappeared. On the book roll and its gradual replacement by the codex see William A. Johnson, "The Ancient Book", in _The Oxford Handbook of Papyrology_ , ed. Roger S. Bagnall, Oxford, 2009, pp 256-281, 6(http://google.com/books?id=6GRcLuc124oC&pg=PA256).
Addendum (June 9)
Arie Altena wrote a [report from the
panel](http://digitalpublishingtoolkit.org/2014/05/off-the-press-report-day-
ii/) published on the website of Digital Publishing Toolkit initiative,
followed by another [summary of the
talk](http://digitalpublishingtoolkit.org/2014/05/dusan-barok-digital-imprint-
the-motion-of-publishing/) by Irina Enache.
The online repository Aaaaarg [has
introduced](http://twitter.com/aaaarg/status/474717492808413184) the
reference-link function in its document viewer, see [an
example](http://aaaaarg.fail/ref/60090008362c07ed5a312cda7d26ecb8#0.102).
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