emergent communities and open source cure

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