[NetBehaviour] La Cura: possibilities?

Sun Jun 5 17:09:42 CEST 2016

Thanks Salvatore for your interesting long answer to my question. I think I
understand better how you articulate La Cura with your personal experience,
and how these two intertwine.

Reading you on commiseration made me remember how difficult it was to react
to it and how I often ended up reassuring the people around me. It was
probably their only way of reacting (for most people I was far away) and I
imagine that your La Cura, the way you  "staged" it, and reached out, gave
people a possibility to act and to become part of it. It served also as a
tool to cope with for all who wanted to be concerned.

Good luck with the follow ups, with the workshops, festival and
summerschools.

Best
Annie

ps do you have to sign up to git hub to have access to the sources?

On Fri, Jun 3, 2016 at 7:34 PM, xDxD.vs.xDxD <xdxd.vs.xdxd at gmail.com> wrote:

> Oh, Annie,
>
> thank you so much for this, as it creates the opportunity to discuss
> something very important.
>
> There were many feelings at the time: fear of dying, helplessness, hope,
> anger (in multiple ways). But one prevailed.
>
> It all seemed like a paradox. A violent, continuous paradox in which me,
> Salvatore, disappeared and was replaced by an administrative, bureaucratic,
> data-driven entity which is the patient.
>
> This fact had implications on everything else.
>
> Everything changed. Language, images, conversations, relations,
> self-representation, self-determination, and the violence (again) in which
> everyone and everything started to continuously try to force me back into
> the "patient" immediately, as soon as I tried to wiggle free from it.
>
> I remember many times in which I could not even make a joke, or say
> something that was not cancer related. My mother started crying, people
> started looking at me as if "yes, yes, ok... but we really should be
> talking about your cancer... how did the MRI go?"
>
> one day in the hospital I stopped a nurse and I asked if I could have an
> image of my cancer. because i really wanted to look at it and talk with it.
> I had this feeling that if I could talk with it something would change. And
> I wanted to confront with looking at it. When you are overpowered, you
> lower your eyes. I wanted to raise my eyes to it, and treat it as a peer.
>
> Well, while I was in the hospital it was not possible to obtain an image
> of my cancer.
>
> A number of different types of problems got in the way.
>
> Privacy. Even if it was my head and my cancer, there were undetermined
> privacy issues. Seemingly no one had ever asked for an image of their
> cancer before. Do you have to sign a form?
>
> Financial. Ok, when you leave you can have your medical records. But what
> about while you're in here? Do you have to pay something?
>
> Legal. We can't release an image without writing something on it, some
> form of diagnosis. But we're still in the process of understanding: we have
> not done a biopsy, an histologic exam, nothing, because we have to open
> your head up first to do them. What if we give you an image of "your
> cancer" and, then, it turns out that it is not "a cancer", and you sue us?
> (this came under many variations)
>
> etc..
>
> The fact was that that image was not for me.
>
> Meaning that it was not for "human being" salvatore iaconesi, with all of
> his fears, desires, expectations, anger, hope, imagination.
>
> That image was for "patient X", the administrative, bureaucratic entity.
>
> It was a violent experience: i could not have an image of my head with my
> cancer in it. An image which I saw multiple times on the doctor's screen.
> Which he had, right in front of me, but which I could not have for me, for
> my intimacy, on my own.
>
> That broke something.
>
> The next day I left the hospital, against doctor's orders.
>
> And, having left, having "resigned from being a patient" I was able to get
> my image.
>
> But "patient X" followed me home.
>
> When I arrived home, I stuck the CD with my medical records in my
> computer. And I saw that they came in DICOM format.
>
> Now: the DICOM format is, technically, an open format. It is documented,
> there is source code, formal descriptions, open source software for it.
>
> But it has a peculiarity: it is a format for professionals. It is for
> doctors, radiologists, researchers, technicians.
>
> It is not for "human beings", it talks about patients and it is for
> professionals.
>
> Again, the image was not for me.
>
> I am lucky, because I am technologically literate. But take my dad: if it
> was him, he couldn't have accessed it, printed it, looked at it.
>
> Patient X.
>
> I understood: this was all a metaphor. Data as metaphor of life. And the
> access to data as access to our possibility to self-represent,
> self-determine, self-declare, and also to relate, and cooperate, and work
> together.
>
> So I pulled out the files for my images, I printed them (I could have
> them, at last!) and I put them online.
>
> When I did, I asked a simple question: "how can you cure me?"
>
> Inclusive. Multiple. Human.
>
> I don't want to write the whole book again here :)  (although it would be
> good for translation purposes :) ), but I want to say just one more thing:
>
> This action changed everything.
>
> The fear, anger, anxiety stayed there: they were not gone.
>
> But after that I was not alone anymore.
>
> People changed: they assumed they had a role in my cure, and they did.
>
> Just one example for all:
>
> I live in Rome, in a neighbourhood which is called Monteverde, and which
> is above Trastevere, if you know Rome, on the hill. It is a lovely place:
> not rich, but it feels like a village embedded in and surrounded by the
> city. Everyone knows each other. There is a lot of neighbourhood life. If
> we leave for more that 3-4 days we have to tell to the people at the bar,
> to the grocer, to neighbours, to a whole lot of people, because if they
> don't see us for 3-4 days and they don't know where we're at they will kick
> down the door to our apartment to see if everything's all right :)
>
> In this place there is a market, which is called Piazza San Giovanni di
> Dio.
>
> It is a really beautiful market. It's a bit run-down, but it's full of
> farmers who come from the countryside which surrounds Rome. They have their
> own products, with an enormous variety. There is also a lady which picks
> spontaneous things which grow in the woods, and she seems like a brown
> witch, and she always comes up with incredible things to eat.
>
> Well, when they learned of the beginning of La Cura, everything changed
> for the whole neighbourhood. For example in the market. All (all!) of the
> farmers had a meeting, basically saying "ok, salvatore is sick, and he
> asked what we can do." And what did they know how to do? Farming! They went
> online, to doctors, to nutritionists. They informed themselves, alone and
> in groups. They found out what's "good for cancer", what's bad. They found
> out what they could change to make better products. A couple of them, in
> that occasion, teamed up and started a transformation process for their
> farm, and they started farming differently, to produce organic food instead
> of pesticide-infected one.
>
> And this was only in my neighbourhood.
>
> The same happened with my students. What can my students do to "cure me"?
> Lots of things! From helping out, to taking turns at doing things, to
> inventing new models for teaching (at home, on their own, via skype, in the
> public square)...
>
> And doctors! Oh, doctors.... It seemed as if they were waiting for this to
> happen. (well, lots of them, not all) They changed and they told. They
> complained about "normality", of the ways in which things seem "normal"
> because they take place every day and because they are the "procedure", or
> "protocol", and instead they are not. They can be challenged.
>
> And many more.
>
> And, all the while, while all of this was going on, people were actually
> curing themselves, as well. They were liberating themselves. They were
> doing things which they thought were right. They "discovered" that they had
> a role. They were cured. The cure was multi-directional.
>
> All of this did not touch a single inch of my fear, and anger, and anxiety.
>
> Nonetheless it changed everything.
>
> It transformed the disease into a performance, into a ballet with
> thousands of people.
>
> As all performances: it allowed the consensual, "normal", reality to stop
> for a bit, to be replaced with another one, a different reality in which
> this was possible.
>
> And as every time this happens, "reality" grows a little bit, it becomes a
> little wider, broader, so that you have gained some mental space, and a
> wider perception of what is possible.
>
>
> To end: the book ends with a chapter which is called "Happy ending, 6
> months at the time"
>
> The fear is still there, every 6 months, precise as a swiss watch.
>
> But it doesn't stop this thing from being in the world.
>
> A ritual of hacking. Opening up a system, to understand how it works.
> Transform it, so that it works differently. Disclose the knowledge, so that
> people, if they wish, can do something with it. Repeat. A transgression.
>
> I hope I answered your question :)  (and sorry for the lenght!)
>
> ciao!
> s
>
>
>
> On Thu, Jun 2, 2016 at 1:07 PM, Annie Abrahams <bram.org at gmail.com> wrote:
>
>> Dear Salvatore,
>>
>> La Cura is a great project with great results. I hope I'll be able to
>> read the book (in English or French or Dutch) one day.
>>
>> This email triggers a lot of thoughts in me, a lot. And I have questions.
>> They are probably answered in the book, or on the website, that I tried to
>> go through. I don't speak, nor read Italian, so all I got was a notion of,
>> so far.
>>
>> Let me tell you first, that 18 month's ago I had a part of one of my
>> lungs removed because I had a lung cancer. My cancer is gone, no radition
>> etc, I was very lucky.
>> About one year ago, when I was still recovering (there were a lot of
>> complications) I had to do three performances for turbulence
>> http://turbulence.org/commissions/besides/ . It was impossible to follow
>> the initial plans we made with Martina Ruhsam and so we decided to work
>> with where we were and did a conversation on "death and illness" (there is
>> a video of it on the webpage).
>>
>> That was June last year. Some people who watched it expressed the wish to
>> talk with us, to become part of this discussion. In between September 2015
>> and March 2016 we had around 4 private online conversations. We is six
>> women (we didn't choose that on purpose) - three who lost a very dear
>> person, three who had been confronted with dead personnaly. Because we lost
>> the technology (waterwheel stopped - Ivan Chabannaud died) we stopped. It
>> ended. No idea where it could have led us. But we had some very strong
>> moments, some very intense feelings shared, we have been very lucky with
>> this. It served 6 people in getting through something very intimate
>> together, something we couldn't even share with the people we loved.
>> Personnally I think it was good it stopped, I was somehow "over" it and
>> wanted something else.
>> Your mail brought something back.
>>
>> You must also have confronted with thoughts about the end of your live,
>> about the possibility of dying. I can't find anything about in La Cura.
>> What I can see of La Cura is all very positive. Was it like that for you?
>> Or didn't you want anger, fear etc. be a part of the project?
>>
>> I have been very angry about the medical system and I still am. Every
>> time when I have to go back for control examinations, I feel I lose myself,
>> I become a medical dataset, a small element in the hospital machine. Every
>> time I feel awfull to be treated as an object, as a sickness, as several
>> sicknesses (there is absolutely no coordination unless you try to that
>> yourself). It took me one year to get over that anger and to start to also
>> be grateful for my recovery for the chance I had.
>>
>> Your project is about the cure. What I miss is death and sickness being a
>> part of it. Maybe, maybe we could start a collection of online sources who
>> try explicitely to touch on that part ?
>>
>> All the best
>> Annie Abrahams
>>
>> On Tue, May 31, 2016 at 7:43 PM, xDxD.vs.xDxD <xdxd.vs.xdxd at gmail.com>
>> wrote:
>>
>>> Dear Friends,
>>>
>>> sorry for cross-posting.
>>>
>>> some time has passed since, in 2012, we launched the "La Cura" project
>>> when I was diagnosed with a brain cancer. The action turned out to become
>>> an emergent, worldwide participatory performance aimed at redefining the
>>> word "cure", bringing it out of hospitals, administrations, bureaucracies
>>> and the ingenuities of e-health approaches, and bringing it back into
>>> society.
>>>
>>>
>>>
>>> Thousands participated (also many of you all, for which I thank you).
>>>
>>> We were all able to draw upon the rich culture of biopolitics,
>>> antipsychiatry, feminism and gender studies to collectively build an active
>>> reflection to confront with the separation, encoding, privatisation, access
>>> and inequalities of current medical approaches, putting in place new models
>>> and patterns in which health is a commons built upon an high-quality
>>> relational environment which is inclusive, accessible, caring, cooperative.
>>>
>>> Dozens of publications have been produced, and thousands of artworks,
>>> texts, poems, images, videos, artistic performances, articles on major news
>>> headlines, and more, establishing a wide, active, trans-disciplinary action
>>> which connected arts, design, sciences, humanities and the everyday life of
>>> thousands of people in the search and enactment of new ways in which to
>>> "cure" by considering people's health something which we all can actively
>>> participate to, using everything from advanced technologies, knowledge,
>>> relations, presence and hugs ;)
>>>
>>> All of this has enormous implications on the economies and power-schemes
>>> of health. In the age of data, quantified self and of hyperconnectivity,
>>> this is also a metaphor for processes which can happen elsewhere in
>>> society, to confront with complex issues such as education, energy,
>>> finance, labour, and more.
>>>
>>> To continue the process, we have transformed "La Cura" into a book:
>>>
>>> http://www.artisopensource.net/items/la-cura-the-book/
>>>
>>> The book, for now, is only in Italian, and we're trying to get it
>>> translated in other languages, as well (and please do propose if you want
>>> to collaborate to the translation: it would be a great help)
>>>
>>> In the objective of the participative performance, the book also has a
>>> strong online presence built through the fact that we're collaboratively
>>> designing the ways in which this type of action could be replicated in many
>>> other forms and in relation to multiple other domains.
>>>
>>> We're working with schools, universities, student groups, rural
>>> communities, citizen groups, activists, children, elderly and, well, many
>>> other types of people. In Italy, for now, but we are starting the process
>>> of momentum building so that all of these efforts can lead to
>>> international, interconnected results which we can all work with to provoke
>>> impact and change.
>>>
>>> Here are just three of the many initiatives which are already going on:
>>>
>>> http://www.artisopensource.net/2016/05/09/the-encounter-of-two-books-in-trieste-from-mental-asylums-to-la-cura/
>>>
>>> http://www.artisopensource.net/2016/04/23/la-cura-erbe-indisciplinate-the-report-from-the-workshop-at-ruralhub/
>>>
>>> http://www.artisopensource.net/2016/05/04/la-cura-and-the-festival-of-creativity-in-ariccia-to-study-the-biopolitics-of-interfaces/
>>>
>>>
>>> We've started from education. In the knowledge ("Conoscienza") section
>>> of the website (http://www.la-cura.it) we are assembling the materials
>>> for the education program which is being contributed by all participants to
>>> the action. We currently have materials on interface politics; biopolitics;
>>> food; energy; data; privacy; autobiography; self-representation; building
>>> collaborative knowledge-bases; handling large-scale emergent p2p
>>> communication processes; fighting cancer while maintaining autonomy,
>>> dignity and self-determination; social networks strategy for activists;
>>> filter bubbles; the evolution of medicine; information overload and health;
>>> open data and medicine; open science; the implications of algorithmic
>>> patients. And some more.
>>>
>>> All the materials and knowledge are currently hosted on GitHub (you can
>>> go to the links from the website), as we're setting up alternatives which
>>> can be more independent, sharable, replicable, and free.
>>>
>>> Why am I telling you all of this?
>>>
>>> For a number of reasons. The first of which is a call for participation.
>>>
>>> First: there are many of you on the list who do things which would be of
>>> fundamental importance for the process.
>>>
>>> We ask you all: if all of this resonanates whith what you do and care
>>> about, please get in touch! We will find a way to do things together.
>>>
>>> Second: let's figure out how to create momentum internationally. We are
>>> working on translations (of the book, of the knowledge base, of the
>>> workshops materials, of the software tools... ), and on getting people,
>>> organisations, schools, universities, institutions, governments involved,
>>> in Europe and in the rest of the world. There are no fixed models for this:
>>> we get in touch and create something meaningful together, then we make it
>>> happen and release the knowledge so that if it is useful of helpful for
>>> other people they can repurpose, reuse, expand, change it as they please,
>>> as long as they share the knowledge and tools in these accessible ways.
>>>
>>> If you are interested in creating any of the workshops, in creating one,
>>> in creating some other kind of action: please, get in touch!
>>>
>>> Third: a festival in Bologna.
>>>
>>> An incredible thing is happening: a 3 day festival is forming
>>> practically autonomously in Bologna on La Cura, and it will take place on
>>> July 8-10.
>>>
>>> When we decided to do a little participatory reading marathon of the La
>>> Cura book in Bologna and we got in touch with the city administration and
>>> with some of the local organisations to make it happen, momentum started
>>> building up autonomously, so much that everything has grown into a
>>> full-blown festival lasting 3 full days and which is gathering
>>> contributions in ways which are completely emergent.
>>>
>>> This is truly a thing of beauty for us, as we don't have any control on
>>> it, and we're just welcoming people in to make sure that their proposals
>>> fit into the objectives and values of La Cura. A city based committee has
>>> formed for this process, and this as well is an open collaboration, so that
>>> anyone is welcome there, too.
>>>
>>> So, if you want to join in to that, as well, please do and get in touch.
>>>
>>> And, Fourth: a summer school.
>>>
>>> We have reached an agreement with Milan's Design Triennale and with the
>>> "Condividi la Conoscenza" event to host an artistic production which will
>>> reflect upon the idea of a "new sensibility": the possibility to imagine a
>>> new sense, along Gregory Bateson's idea of art as that process which
>>> creates the aesthetics, the sense of beauty, for what "interconnects", for
>>> "difference". We will create the artwork collaboratively in a summer school
>>> in Florence, with the collaboration of ISIA Design, the design university
>>> where we teach, and the result will be exhibited in downtown Milan at the
>>> Triennale's locations.
>>>
>>> More info about this will follow soon, but if you're interested already
>>> feel free to get in touch.
>>>
>>> That's a lot of things: sorry for the long message.
>>>
>>> I hope this finds your interest and that you will consider participating
>>> in any form you can.
>>>
>>> All the best to you all!
>>> Salvatore
>>>
>>>
>>> --
>>> *[**MUTATION**]* *Art is Open Source *-  http://www.artisopensource.net
>>> *[**CITIES**]* *Human Ecosystems Ltd* - http://human-ecosystems.com
>>> *[**NEAR FUTURE DESIGN**]* *Nefula Ltd* - http://www.nefula.com
>>> *[**RIGHTS**]* *Ubiquitous Commons *- http://www.ubiquitouscommons.org
>>> ---
>>> Professor of Near Future and Transmedia Design at ISIA Design Florence:
>>> http://www.isiadesign.fi.it/
>>>
>>> _______________________________________________
>>> NetBehaviour mailing list
>>> NetBehaviour at netbehaviour.org
>>> http://www.netbehaviour.org/mailman/listinfo/netbehaviour
>>>
>>
>>
>>
>> --
>> On exile, resettlement, language, performance ... and even internet:
>> *Displaced - A conversation with Soyung Lee* (by Annie Abrahams)
>> https://aabrahams.wordpress.com/2016/05/03/displaced-a-conversation/
>>
>> I don’t know where this is going
>> <https://aabrahams.wordpress.com/2016/05/30/iterations/> 7/06-23/06
>> Résidence *Itérations*, Constant Brussels.
>> <https://aabrahams.wordpress.com/2016/05/03/displaced-a-conversation/>
>>
>> _______________________________________________
>> NetBehaviour mailing list
>> NetBehaviour at netbehaviour.org
>> http://www.netbehaviour.org/mailman/listinfo/netbehaviour
>>
>
>
>
> --
> *[**MUTATION**]* *Art is Open Source *-  http://www.artisopensource.net
> *[**CITIES**]* *Human Ecosystems Ltd* - http://human-ecosystems.com
> *[**NEAR FUTURE DESIGN**]* *Nefula Ltd* - http://www.nefula.com
> *[**RIGHTS**]* *Ubiquitous Commons *- http://www.ubiquitouscommons.org
> ---
> Professor of Near Future and Transmedia Design at ISIA Design Florence:
> http://www.isiadesign.fi.it/
>
> _______________________________________________
> NetBehaviour mailing list
> NetBehaviour at netbehaviour.org
> http://www.netbehaviour.org/mailman/listinfo/netbehaviour
>

-- 
On exile, resettlement, language, performance ... and even internet:
*Displaced - A conversation with Soyung Lee* (by Annie Abrahams)
https://aabrahams.wordpress.com/2016/05/03/displaced-a-conversation/

I don’t know where this is going
<https://aabrahams.wordpress.com/2016/05/30/iterations/> 7/06-23/06
Résidence *Itérations*, Constant Brussels.
<https://aabrahams.wordpress.com/2016/05/03/displaced-a-conversation/>
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