emergent communities and open source cure
TRANSCRIPT
EMERGENTCOMMUNITIES
and Open Humanity
@Remediating the SocialSalvatore Iaconesi & Oriana Persico [ Art is Open Source ]
EMERGENT CREATIVE COMMUNITIESand the ways in which they interact with territories, networks, technologies, cities
We’ve worked onthis in the past ...
researched what can be accomplished by creating a fake institution which acts as an open source meta-brand with the
RomaEuropa Fake Factory
www.romaeuropa.org
observed how can open Augmented Reality and ubiquitous technologies be used as tools for movements and collectives, creating new ways of publishing information anywhere and enacting location based actions and performances easily and accessibly for everyone
http://bit.ly/RGKILS
http://bit.ly/PBaFOz
http://bit.ly/PBaxP0
explored how we could create a widespread p2p people activation by inventing an augmented reality drug usable for the reinvention of reality
http://bit.ly/UgZMnH
analyzed how to transform high school students of the city of Pompei in Italy into designers of their digital city, creating business models, participation practices, peer to peer environments for creativity and governance
http://bit.ly/YDUiTG
engaged a whole territory in the south of Italy to create an augmented reality movie using open source technologies, to explore how it is possible to create tools and practices through which digital technologies and networks can be used by people to coordinate, participate, and create together, inventing new economies and practiceshttp://bit.ly/RedYtu
http://bit.ly/n9ZJ10
understood how to capture real-time information from social networks and use it to create open tools usable by people to understand what happens in their city, what are people's emotions, ideas and thoughts about the environment, city governance, energy, lifestyle, and the possibility to organize themselves in p2p ways, creating businesses, art, politics in novel ways
http://bit.ly/RRVFYY http://bit.ly/JuIXOk
and then...
Digital Manual
understand the relationships and processes through which creative communities emerge around digital publishing tools
of many kinds
http://bit.ly/RRWu4f
our point of view:
it is not really interesting, for
us, to create communities
It is really interesting, instead, to recognize communities in how they emerge, and to understand how to design and develop tools to support them, to enable them to assemble, to
recombine, to collaborate, to create business models, communication models, ways to interact with organizations
and institutions
To enable expression of multiple points of view,
organized in networks which can spread out along territories, topics,
visions on the future, ethics, cultures, also in temporary ways.
We don't reallyappreciate the idea of
"creating"a community
as we feel it is a processwhich has already been
industrialized
there is much buzz about the
"third industrial revolution"
maybe we should questionourselves if the term
"industry"is really fitting to describe
the possibilities which are opening upin these complex times
powerful innovation sitswhere it is possible to create
open methodologies, infrastructures, tools and
education...
and use them to perform, to practice, to act in the creation of
liberated zones where things can really happen
a possibilistic environment
we will talk about thisfrom a peculiar point of view
and a very personal, networkedstory, which is happening to
us, right now
this september I have been diagnosed with a brain cancer
I was not really satisfied about the way in whichhospitals were handling my situation
as soon as I was declared officially "diseased" it was almost as if i disappeared, replaced by my clinical
data, protocols and procedures
I was, by all effects, industrialized: i was not a human being anymore,
I became a "patient"
In different cultures the words
"disease" and "cure"can mean many different things, relating to the body, to society,
to relationships and the environment
I felt that medicine was onlyassessing very few parts of this,interpreting my body in terms
of its componentsand leaving out all the rest,
in an over-simplificationwhich really left me unsatisfied
especially thinking about cancer
which is a very peculiar disease,
having to do with the ways in whichwe eat, with the environment we live in,
and with our lifestyle
So I decided to leave the hospital
I gave the hospital administration 35euros
and grabbed my medical records in digital format...
...with the idea that they could be published on the web to share
them with as many people as possible, interweaving sciences, design, arts,
traditions and spirituality, aiming at the creation of a "cure" which could confront with all the spheres which
describe a human being
As soon as I arrived home I had a sad surprise
The clinical data was distributed usinga format which is, technically, open
But it constitutes a very interesting parallel
with the ways in which medicine handled my disease
The language which the doctor usesto tell you that “you have cancer”
is technically open,but it's not really accessible:
it uses words which you don't understandand it is not really made for you
In a way,a doctor is not really talking to you
when he/she explains your condition
he is talking about you, using language which is intended for his colleagues, and not even enabling you to understand all the different options which are available to you, ranging from diets,
homeopathy, traditional medicine and, yes, surgery, chemiotherapy etcetera
Once a doctor replied to me
“you don't think that i will really explain to you how the surgery technically works! You need to have your head opened
up and cancer removed! That's all you need to know!”
of course i want to know everything!
and as clearly as possible!
The data format used in the digital clinical records was just like that.
It was technically open, but it was not intended for me to do anything with it.
It included a "reader" software(which only worked on Windows computers, by the way)
but you could not do anything at allwith the data and images included in it
You could only send it to another professional doctorand have him or her look at it
No traditional medicine.No homeopathy.
No arts.No printing.
No exporting.No sharing online.
My own data was not made for me
it was made for bureaucraticand administrative tasks
Open Bureaucratic Data
Again, it was about me, but it was not me
It did not answer the common questionswhich someone who is diagnosed cancer
has every minute of his life:
does my life stop?can i work?
can i be creative?can i make love?
can i find out other information?
I hacked the data formatand converted it to a set of ones
which are easier to use:
PNGs and JPGs for images, XML for data etcetera
And i created a website: My Open Source Cure
www.artisopensource.net/cure
“Grab the information about my disease,if you want, and give me a CURE:
create a video, an artwork, a map,a text, a poem, a game,
or try to find a solution for my health problem.
Artists, designers, hackers, scientists, doctors,photographers, videomakers, musicians, writers.
Anyone can give me a CURE.”
In a way, I was asking everyoneto take part in my disease.
Beyond medicine, beyond science, beyond protocols,beyond administration and bureaucracy
This is what happened
an incredible network formed almost immediately,
combining the contributions of thousands of
doctors, scientists, researchers, artists, designers, musicians,videomakers, ex-patients, friends and relatives
of people who had died from cancer
more than 30 videosdozens of music tracks
hundreds of poems and narratives3 performances
dozens of visual designsa projection mapping on a building
an electronic music concert
Patrick Lichty even produceda 3D model of my tumor,and put it on Thingiverse,so that you can print it out in 3D:
you can have my cancer, too if you want.
More than 90 doctors and researcherscontacted me, offering information and support.
Multiple of their ex-patients contacted me as well,telling me about their attitude,
the effectiveness of their cures for them,the quality of the hospitals they operated in.
BBC, CNN, Folhio de S. Paulo, New Scientist, Repubblica, the Wall Street Journal, Wired and many more news,
television and online operators worldwide gave coverage of what
happened
I received around
200kadvices about how to cure myself,
ranging from hi-tech medicine, to surgery,to diet suggestions, to magic, to esotheric remedies.
Many of them had the remarkable characteristic of describingthe same healing processes using different languages.
It was really a lot of informationthere was no way in which i could have
processed it by myself
The emergent network, again, was the solution:
hundreds of people helped me out to process the info, tagging it, comparing it, and pointing out the
most remarkable bits of it, even arriving at the level of independently contacting the doctors, sciamans and
scientists proposing the remedies and techniques, to know more details.
And then the conversations started:
experts, people, patientsstarted discussing autonomously.
As of now, my "cure" is composed bythe harmonious contributions of
a neuro surgeon,an oncologist,
a holistic oncologist,a traditional chinese doctor,
a neuro-radiologist,an expert on macrobiotics and nutrition
a sciaman
all talking and discussing their techniques together,understanding how to combine them harmoniously.
This is something that rarely, if never, happens.
And it is remarkable,as it manages to confront with
the human being in its wholeness:
as a body, as part of a society,as a bearer of emotions, feelings and expectations.
a team has formed, inspired by what is happening.
we are working on a set of tools to go beyond medicine,
talking to the people who have inventedOpen Medicine up to now,
and to the ones which are discussing about eHealth,
and to the ones who feel that a “revolution” in this domain could go way beyond all of this
transforming disease, medicine, curesinto an open environment
in which human beings are ableto relate, to communicate, to inform,to be creative, to confront critically,
to experience, to support.
it is all very different from the ideas ofopen data, open government, open everything
that is being discussed worldwide today.
it is not about some people inventing something,
it is about everyone having the toolsto do what they need to,
as this need emerges, in open, shareable, efforts
it is not about industrializing data,or spectacularizing information,or business-modeling crowds,
which is what happens most of the timewhen we speak about open data,
open communities, smart cities etcetera
it is about anthropologizing digital technologies and networks,
enabling innovation to emerge autonomously and conversationally,
and re-thinking the idea of governments and organizations
as producers and maintainers of tools and infrastructures
which neutrally supportthe expression of multiple voices,
their interconnection and their collaboration.
Everything will be fine
And an incredible thing is taking place:
people are actually taking into serious considerationa novel way of doing things
on a delicate subject such as human health.
an Open Source Cure
for you and for me :)
Salvatore IaconesiOriana Persico www.artisopensource.net