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EMERGENT
COMMUNITIES
    and Open Humanity


              @Remediating the Social
  Salvatore Iaconesi & Oriana Persico [ Art is Open Source ]
EMERGENT CREATIVE COMMUNITIES
and the ways in which they interact with territories, networks, technologies, cities
We’ve worked on
this 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 practices
http://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
http://bit.ly/RRVFYY   http://bit.ly/JuIXOk
                                              novel ways
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 really
appreciate the idea of

"creating"
    a community
as we feel it is a process
 which has already been

industrialized
there is much buzz about the
"third industrial
  revolution"
maybe we should question
       ourselves if the term

      "industry"
     is really fitting to describe
the possibilities which are opening up
       in these complex times
powerful innovation sits
where 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 this
 from a peculiar point of view

and a very personal, networked
  story, 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 which
      hospitals 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 only
 assessing very few parts of this,
  interpreting my body in terms
          of its components
and leaving out all the rest,
   in an over-simplification
 which really left me unsatisfied
especially thinking about cancer

   which is a very peculiar disease,

 having to do with the ways in which
we 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 using
     a 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 uses
to tell you that “you have cancer”
           is technically open,
    but it's not really accessible:

it uses words which you don't understand
     and 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 all
with the data and images included in it
You could only send it
to another professional doctor
 and 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 bureaucratic
        and administrative tasks
Open Bureaucratic Data
Again, it was about me, but it was not me
It did not answer the common questions
      which 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 format
        and 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 everyone
  to take part in my disease.
   Beyond medicine, beyond science, beyond protocols,
        beyond administration and bureaucracy
This is what happened
Emergent Communities and Open Source Cure
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
Emergent Communities and Open Source Cure
more than 30 videos
      dozens of music tracks
hundreds of poems and narratives
          3 performances
     dozens of visual designs
a projection mapping on a building
   an electronic music concert
Patrick Lichty even produced
a 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 researchers
contacted 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


               200k
advices 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 describing
   the same healing processes using different languages.
It was really a lot of information
there 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, patients
started discussing autonomously.
As of now, my "cure" is composed by
             the 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 invented
               Open 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, cures
      into an open environment

    in which human beings are able
to relate, to communicate, to inform,
to be creative, to confront critically,
      to experience, to support.
it is all very different from the ideas of
open 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 tools
              to 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 time
          when 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 support
  the 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 consideration
            a novel way of doing things
    on a delicate subject such as human health.
an   Open Source Cure

          for you and for me :)
Salvatore Iaconesi
Oriana Persico       www.artisopensource.net

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Emergent Communities and Open Source Cure

  • 1. EMERGENT COMMUNITIES and Open Humanity @Remediating the Social Salvatore Iaconesi & Oriana Persico [ Art is Open Source ]
  • 2. EMERGENT CREATIVE COMMUNITIES and the ways in which they interact with territories, networks, technologies, cities
  • 3. We’ve worked on this in the past ...
  • 4. 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
  • 5. 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
  • 6. 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
  • 7. 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
  • 8. 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 practices http://bit.ly/RedYtu http://bit.ly/n9ZJ10
  • 9. 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 http://bit.ly/RRVFYY http://bit.ly/JuIXOk novel ways
  • 10. 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
  • 11. our point of view: it is not really interesting, for us, to create communities
  • 12. 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
  • 13. 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.
  • 14. We don't really appreciate the idea of "creating" a community
  • 15. as we feel it is a process which has already been industrialized
  • 16. there is much buzz about the "third industrial revolution"
  • 17. maybe we should question ourselves if the term "industry" is really fitting to describe the possibilities which are opening up in these complex times
  • 18. powerful innovation sits where it is possible to create open methodologies, infrastructures, tools and education...
  • 19. and use them to perform, to practice, to act in the creation of liberated zones where things can really happen
  • 21. we will talk about this from a peculiar point of view and a very personal, networked story, which is happening to us, right now
  • 22. this september I have been diagnosed with a brain cancer
  • 23. I was not really satisfied about the way in which hospitals were handling my situation
  • 24. as soon as I was declared officially "diseased" it was almost as if i disappeared, replaced by my clinical data, protocols and procedures
  • 25. I was, by all effects, industrialized: i was not a human being anymore, I became a "patient"
  • 26. In different cultures the words "disease" and "cure" can mean many different things, relating to the body, to society, to relationships and the environment
  • 27. I felt that medicine was only assessing very few parts of this, interpreting my body in terms of its components and leaving out all the rest, in an over-simplification which really left me unsatisfied
  • 28. especially thinking about cancer which is a very peculiar disease, having to do with the ways in which we eat, with the environment we live in, and with our lifestyle
  • 29. So I decided to leave the hospital
  • 30. I gave the hospital administration 35euros and grabbed my medical records in digital format...
  • 31. ...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
  • 32. As soon as I arrived home I had a sad surprise
  • 33. The clinical data was distributed using a format which is, technically, open But it constitutes a very interesting parallel with the ways in which medicine handled my disease
  • 34. The language which the doctor uses to tell you that “you have cancer” is technically open, but it's not really accessible: it uses words which you don't understand and it is not really made for you
  • 35. 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
  • 36. 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!
  • 37. 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.
  • 38. It included a "reader" software (which only worked on Windows computers, by the way) but you could not do anything at all with the data and images included in it
  • 39. You could only send it to another professional doctor and have him or her look at it
  • 40. No traditional medicine. No homeopathy. No arts. No printing. No exporting. No sharing online.
  • 41. My own data was not made for me it was made for bureaucratic and administrative tasks
  • 43. Again, it was about me, but it was not me
  • 44. It did not answer the common questions which 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?
  • 45. I hacked the data format and converted it to a set of ones which are easier to use: PNGs and JPGs for images, XML for data etcetera
  • 46. And i created a website: My Open Source Cure www.artisopensource.net/cure
  • 47. “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.”
  • 48. In a way, I was asking everyone to take part in my disease. Beyond medicine, beyond science, beyond protocols, beyond administration and bureaucracy
  • 49. This is what happened
  • 51. 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
  • 53. more than 30 videos dozens of music tracks hundreds of poems and narratives 3 performances dozens of visual designs a projection mapping on a building an electronic music concert
  • 54. Patrick Lichty even produced a 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.
  • 55. More than 90 doctors and researchers contacted me, offering information and support.
  • 56. 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.
  • 57. 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
  • 58. I received around 200k advices about how to cure myself, ranging from hi-tech medicine, to surgery, to diet suggestions, to magic, to esotheric remedies.
  • 59. Many of them had the remarkable characteristic of describing the same healing processes using different languages.
  • 60. It was really a lot of information there was no way in which i could have processed it by myself
  • 61. 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.
  • 62. And then the conversations started: experts, people, patients started discussing autonomously.
  • 63. As of now, my "cure" is composed by the 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.
  • 64. 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.
  • 65. a team has formed, inspired by what is happening.
  • 66. we are working on a set of tools to go beyond medicine, talking to the people who have invented Open 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
  • 67. transforming disease, medicine, cures into an open environment in which human beings are able to relate, to communicate, to inform, to be creative, to confront critically, to experience, to support.
  • 68. it is all very different from the ideas of open data, open government, open everything that is being discussed worldwide today.
  • 69. it is not about some people inventing something, it is about everyone having the tools to do what they need to, as this need emerges, in open, shareable, efforts
  • 70. it is not about industrializing data, or spectacularizing information, or business-modeling crowds, which is what happens most of the time when we speak about open data, open communities, smart cities etcetera
  • 71. 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 support the expression of multiple voices, their interconnection and their collaboration.
  • 73. And an incredible thing is taking place: people are actually taking into serious consideration a novel way of doing things on a delicate subject such as human health.
  • 74. an Open Source Cure for you and for me :)
  • 75. Salvatore Iaconesi Oriana Persico www.artisopensource.net

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