i barely know what to say, my experience of cancer was so horrific in so many ways. my doctor would not give me the results of my biopsy (i lived in a small rural place) so i had to get my hospital records from the hospital and sat in my car in the rain to see the word carcinoma. (breast cancer.) the following day my partner whose mother died of breast cancer just turned on me, he could not cope with it at all. my ex-husband came to care for me and i moved back home with him. that was a disaster of a different sort and i am in the process of packing to leave again. it's almost two years now and it has felt like a great violation, an interruption, intrusion that has brought me to my knees.
i'm not too fond of doctors or administrators or any kind of bureaucracy. i am tired of offices; i am tired of filling out forms and applying for things, for help, etc. i didn't do chemo or radiation and had to deal with the fallout from that and i had one woman insist i don't do surgery either which i did do. i have lost friends and gained friends. i don't want anyone to tell me what to do. i don't want to be in a relationship. i just want to get back to doing my art and not be in fear all the time. having had chronic illnesses for 30 years which are not understood or curable, cancer is the illness where people actually cared about me and worried about me and gave me money. i experienced it as a surreal nightmare which i am still trying to get out of. i have seen the ugliest part of humans and the kindest part of humans. i don't get to be healthy now. i still struggle daily with chronic illness. people with my illnesses: chronic fatigue syndrome/fibromyalgia/multiple chemical sensitivity often say they would rather have cancer because you get better or you die. (although with radiation and chemo you can have lifelong effects or other health problems) there is a spot on my spine that is too small to biopsy so i look for symptoms of bone cancer and so far i seem to be okay. i am moving far far away where the biggest trees are and the ocean is magnificent. i feel shattered and exhausted and terrified so i want the beauty of nature and peace and quiet. don't look at me, don't touch me, don't tell me what to do. i have been separated from my books and artwork and writing and i want it all with me in one place, alone. i did a form of dance therapy, authentic movement, by skype for the first time. i recorded the sessions and i datamoshed the footage and made video art from it. i just want to get back to it. i want to closed my eyes and move. i want to feel like i have all the time in the world. i want to be under the tallest trees in the world. http://digitalaardvarks.blogspot.comhttp://www.youtube.com/user/digitalaardvarks http://www.facebook.com/donnakuhnarthttps://www.flickr.com/photos/donnakuhnhttp://picassogirl.tumblr.comhttps://twitter.com/digitalaardvarkhttps://plus.google.com/+digitalaardvarkshttps://www.linkedin.com/in/donnakuhnhttp://www.saatchionline.com/donnakuhnhttp://pinterest.com/sarcasthttps://soundcloud.com/donna-kuhn/tracks From: "netbehaviour-requ...@netbehaviour.org" <netbehaviour-requ...@netbehaviour.org> To: netbehaviour@netbehaviour.org Sent: Saturday, June 4, 2016 4:00 AM Subject: NetBehaviour Digest, Vol 2745, Issue 1 Send NetBehaviour mailing list submissions to netbehaviour@netbehaviour.org To subscribe or unsubscribe via the World Wide Web, visit http://www.netbehaviour.org/mailman/listinfo/netbehaviour or, via email, send a message with subject or body 'help' to netbehaviour-requ...@netbehaviour.org You can reach the person managing the list at netbehaviour-ow...@netbehaviour.org When replying, please edit your Subject line so it is more specific than "Re: Contents of NetBehaviour digest..." Today's Topics: 1. Re: La Cura: Possibilities? (xDxD.vs.xDxD) 2. Re: La Cura: possibilities? (xDxD.vs.xDxD) 3. La Cura: possibilities? (Edward Picot) 4. Re: La Cura: possibilities? (xDxD.vs.xDxD) 5. Re: La Cura: possibilities? (xDxD.vs.xDxD) 6. Review of Gerald Raunig's latest book 'Dividuum?. (furtherfield) ---------------------------------------------------------------------- Message: 1 Date: Fri, 3 Jun 2016 18:20:28 +0200 From: "xDxD.vs.xDxD" <xdxd.vs.x...@gmail.com> To: NetBehaviour for networked distributed creativity <netbehaviour@netbehaviour.org> Subject: Re: [NetBehaviour] La Cura: Possibilities? Message-ID: <CAJ=DDhqvT8vChFSmMeFWPbc+s_jvqLx4ZYa--WdBq=6ahx8...@mail.gmail.com> Content-Type: text/plain; charset="utf-8" Dear Edward: thank you! and, for me, it all also resonates with the fact that it is very naive to imagine that you fall sick alone. When you become sick of a complex thing as cancer your friends and relatives become diseased, too, because their lives change, they are shattered. And so do your students, because you can't teach to them. And so do your colleagues, because you can't work with them. And so does your employer, because you don't go to work. And so does your grocer, because you don't buy your groceries in his store anymore. And so do all the citizens, because you are relying on the national health service (if there is one), which they support with taxes. When you become diseased everyone does, in manifestations of the disease which are physical, psychological, financial, economic, practical, environmental, administrative, bureaucratic, cultural, etc In the same way, it is very naive to even imagine that you can be "cured" alone, or that you are the only one which needs to be cured, or that the act of "curing" goes only one way, or that it makes sense to "cure" a few crazy cells and leave everything else as it is. And these and other considerations drive the main differences between the words "therapy" and "cure", the latter meaning "to take care of". The "cure" needs to be natively trans-disciplinary and transgressive: it has to recognise borders in order to move them. This also resonates with all the issues which relate to the domain of complexity, like economy, poverty, pollution, education, energy, labour and many others, obviously including health. This is why the festival in Bologna in July for La Cura has the tagline: "complex, connected, indisciplined" Thanks! Salvatore On Tue, May 31, 2016 at 8:58 PM, Edward Picot <edw...@edwardpicot.com> wrote: > Salvatore - > > This is really inspiring and fascinating. > > The fact that being diagnosed with a serious illness is a dehumanising > thing, and that people begin to see you in terms of what you've got rather > than who you are, is a familiar observation in medicine. But I think you've > broken new ground in identifying the way that your illness effectively > belongs to a bunch of experts rather than yourself - you're the one that's > 'got' it, yet you don't seem to own it - and this appropriation is > reinforced by the way it's translated into a different language - the > technical language of medicine, which is unfamiliar and disorienting to > 'ordinary' people - and then reinforced again, in modern medicine, by the > way that your data is wrapped up in proprietorial software, so that you > can't get hold of it and do your own thing with it unless you happen to > have quite a lot of technical knowhow. > > Then on top of this, the different schools or philosophies of medicine - > 'evidence-based' Western medicine, Homeopathic medicine, Chinese medicine, > etc. - generally tend to be mutually exclusive, which means that normally > the patient, once he or she is committed to one particular school, is > effectively cut off from access to any of the other schools. So what you've > done, in taking back possession of your own data, throwing it open to a > much wider community and using that as a means of developing a completely > personalised health plan incorporating elements from lots of different > traditions, is a very rare and experimental thing. > > Good for you! > > - Edward > _______________________________________________ > NetBehaviour mailing list > NetBehaviour@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/ -------------- next part -------------- An HTML attachment was scrubbed... URL: <http://www.netbehaviour.org/pipermail/netbehaviour/attachments/20160603/768fa292/attachment-0001.html> ------------------------------ Message: 2 Date: Fri, 3 Jun 2016 19:34:19 +0200 From: "xDxD.vs.xDxD" <xdxd.vs.x...@gmail.com> To: NetBehaviour for networked distributed creativity <netbehaviour@netbehaviour.org> Subject: Re: [NetBehaviour] La Cura: possibilities? Message-ID: <CAJ=ddhoxdjrlocromkpuprixmpcmnso--jv9dyan75o2ozi...@mail.gmail.com> Content-Type: text/plain; charset="utf-8" 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....@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.x...@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@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 > R?sidence *It?rations*, Constant Brussels. > <https://aabrahams.wordpress.com/2016/05/03/displaced-a-conversation/> > > _______________________________________________ > NetBehaviour mailing list > NetBehaviour@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/ -------------- next part -------------- An HTML attachment was scrubbed... URL: <http://www.netbehaviour.org/pipermail/netbehaviour/attachments/20160603/b6165cb7/attachment-0001.html> ------------------------------ Message: 3 Date: Fri, 3 Jun 2016 20:01:30 +0100 From: Edward Picot <edw...@edwardpicot.com> To: netbehaviour <netbehaviour@netbehaviour.org> Subject: [NetBehaviour] La Cura: possibilities? Message-ID: <5751d40a.40...@edwardpicot.com> Content-Type: text/plain; charset=utf-8; format=flowed Salvatore - Thank you for your answer to me - but thank you even more for your answer to Annie, which is just fantastic! I wanted to ask you about commiseration, though. Somewhere - I'm not sure if it's on one of your websites or in one of your TED talks - you mentioned about all these people getting in touch with you, but none of them commiserating; and from the tone, I gathered that you see this lack of commiseration as a positive thing. Can you explain a bit more? Do you feel that commiseration forces you into the role of helpless patient - 'Patient X' as you put it - and stops both you and other people from doing anything creative and positive about your illness? - Edward ------------------------------ Message: 4 Date: Fri, 3 Jun 2016 21:39:21 +0200 From: "xDxD.vs.xDxD" <xdxd.vs.x...@gmail.com> To: NetBehaviour for networked distributed creativity <netbehaviour@netbehaviour.org> Subject: Re: [NetBehaviour] La Cura: possibilities? Message-ID: <CAJ=DDhqaPmkFnhm7Kfg3rCi0k8mxCzZ3=2DpUMd=wzmibvo...@mail.gmail.com> Content-Type: text/plain; charset="utf-8" Hi Michael, of course there are different sensibilities and health care systems. And I'm really happy that everything was allright. I already gave some hints of what I meant in the previous message, answering Annie: I guess you can find some indications of my point there I will take your message as a chance to quickly make a few other things more explicit (also given the fact that the website for la cura is in italian and, thus, not comprehensible to everyone) as good as it may be (and I'm sincerely, fully happy that it was good for you) we're always talking about a system which is really closed on itself, and which has little to say about "interconnection" and "complexity", as it does not really manage to go beyond the "doctor/patient" relationship. This is true in general, and it is particularly true for complex diseases such as cancer. The social/cultural issues which i described in the previous message are also matched by ones which are really technical, meaning figuring out what "curing" really means, or could mean. Cancer potentially has to do with everything we do: how we eat, consume, produce energy, move, work, learn and entertain ourselves. So the concept of "curing" could turn out to be a really interesting thing. Instead it isn't. For the "cure" to which I allude to, the "hospital" is not sufficient at all, as efficient, caring and effective as it may be. "cure" would require the engagement of all society. And this is valid not only for cancer, and for other health issues, but also for other complex issues of the planet, of course. But for the sake of clarity let's stick to medicine. Medicine separates. In many ways. Foucault, just to take one, described 4 separations: by classification (healthy/sick, able/disabled, disease X/disease free... and if you look at this from the point of view of things such as the quantified self, in which these determinations could come automatically, or by varying some threshold values according to who knows which logics, according to parameters that are financial, economic, procedural, to create more "health customers", this turns out to be a really powerful type of separation) in the body (the lung doctor, the liver doctor etc... and they usually don't speak with each other that much) in society (the hospital is a clear example, with all of the separations, in time, space and psychology, which it features; but separation-trough-medicine are all over the place) and in one's perception (I could even have the strange idea of actually believing in the fact that I am the "patient", my medical data, extracted from the rest of society, becoming my disease; that is true also for the others) >From this consideration, on top of other things which were mentioned in the previous message and the other ones which constitute the general frame for La Cura, reflections can and do emerge. first of all the need to escape the logic of the "emergency", of the "crisis", and to fully confront with society, the environment and technology to face these complex issues. This does not only require transdisciplinarity, but also the possibility to transgress and the formation of new aesthetics, new sensibilities. To say it like Bateson: the sensibility which is needed to see the beauty of that which interconnects. thanks! Salvatore On Thu, Jun 2, 2016 at 6:21 PM, Michael Gurstein <gurst...@gmail.com> wrote: > I was diagnosed with aggressive Prostate Cancer about 7 months ago. Since > then I?ve had a variety of interventions (there were complications) and > treatments with another one about to start. > > > > My own experience of the medical system is rather different from what is > being described. I found the physicians and the other staff to be > extremely efficient (and hopefully effective)? with reasonable levels of > capacity for communication (it is very individual and the joke in the > clinics is that the self-selection for speciality is in part based on those > who like to cut and those who like to talk L > > > > The overall process was one which I didn?t find particularly alienating? > there was adequate communication and an almost overwhelming amount of > information provided through pamphlets, books, seminars and direct > communication with the professionals where there were reasonable > opportunities for feedback . There are organized support groups for > patients and their families and I?ve had access to a dietician and an > exercise kinestheologist. And all of this was covered by our Medicare so > the only direct cost to me so far has been for parking and some of the > pharmaceuticals. Also, based on my experience with the US health care > system the absence of overhead paperwork for me and the health > professionals overall made my life (and the management of tension levels) > and I?m presuming their lives infinitely easier and less stressful. > > > > Time is given to discuss/analyse alternative therapies (of course not > encouraged but not dismissed out of hand) and overall I haven?t so far had > any problems in maintaining a sense of personhood except when at one point > I required an acute intervention where I was only too happy to lie back and > let others exercise their competences. > > > > All this to say as a strong endorsement of our Canadian single payer > medical system and to suggest that the experience (and one?s necessary > reaction to this) might be highly localized and nationally specific. > > > > M > > > > *From:* netbehaviour-boun...@netbehaviour.org [mailto: > netbehaviour-boun...@netbehaviour.org] *On Behalf Of *Annie Abrahams > *Sent:* June 2, 2016 4:07 AM > *To:* NetBehaviour for networked distributed creativity < > netbehaviour@netbehaviour.org> > *Subject:* Re: [NetBehaviour] La Cura: possibilities? > > > > 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.x...@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@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 > R?sidence *It?rations*, Constant Brussels. > > _______________________________________________ > NetBehaviour mailing list > NetBehaviour@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/ -------------- next part -------------- An HTML attachment was scrubbed... URL: <http://www.netbehaviour.org/pipermail/netbehaviour/attachments/20160603/ef987f0b/attachment-0001.html> ------------------------------ Message: 5 Date: Fri, 3 Jun 2016 22:11:13 +0200 From: "xDxD.vs.xDxD" <xdxd.vs.x...@gmail.com> To: NetBehaviour for networked distributed creativity <netbehaviour@netbehaviour.org> Subject: Re: [NetBehaviour] La Cura: possibilities? Message-ID: <CAJ=ddhovt6jl+d7jwqgwqh7tx0u5amee1dctj96uaox3mjf...@mail.gmail.com> Content-Type: text/plain; charset="utf-8" commiseration comes from latin CUM=with MISERARI=misery,compassion which means "to cry for someone else's misery" which is a concept and gesture which may have multiple meanings and, most of all, intentions, and which different people may interpret in different ways. so I will only speak about me, and not try to make a general statement of any kind as much as I understand and feel grateful for the fact that someone shares my difficult moment, I also try to discourage it I try to be delicate about it. Because, as I said, I am also truly grateful about this type of behaviour. My family originates from the deep south of Italy, from Calabria, the tip of Italy's boot. Calabria has greek origins (there are places in which Grecanico, a language which is practically ancient Greek, is still spoken). As such, the "tragedy", and its feeling and expressive style, is strong. The lament, the crying out loud, the desperate scream are things I know and also learned to appreciate, as they are participation, ritual, catharsis, instrument and way to shock (even physically) to overcome and to achieve different states of consciousness. It can become an instrument, a quasi-trance like state which induces reflection and the possibility to reset, with time, the context, bringing up "what's next" in energetic ways. What I discourage is downward spirals and the concept of "acceptability". "acceptability". Many times we show "commiseration" because we don't know anything better to do, and also because we feel that this is the "acceptable" thing to do. This can be a lack of imagination (about what is "possible") or of engagement, and sometimes even of sense of participation. "i'm sorry" Stop. And then there are the downward spirals. "Commiseration as an instrument" is not a given. Just as saying the rosary used to be something that people did to achieve a state of meditative trance and now it is something you do to "consume". (oh, well, I don't want to generalise... it is just to give an idea). For similar reasons, "commiseration" consumes. And consume is another interesting word, again from latin CUM=with SUMMA=end, perfection CUM=with SUMERE=to take, to take away, to finish which points in the direction of achieving a state of end, of "perfection", of "finished". which, of course, as we know for example from "consumism", cannot exist, if not in our death. That's a potential downward spiral pointed towards constant unsatisfaction and need to increase the speed with which you consume. Resulting that it consumes you. This is why I personally discourage commiseration, because it consumes both the one which is commiserated and the one which commiserates. and, of course, it's just me s On Fri, Jun 3, 2016 at 9:01 PM, Edward Picot <edw...@edwardpicot.com> wrote: > Salvatore - > > Thank you for your answer to me - but thank you even more for your answer > to Annie, which is just fantastic! > > I wanted to ask you about commiseration, though. Somewhere - I'm not sure > if it's on one of your websites or in one of your TED talks - you mentioned > about all these people getting in touch with you, but none of them > commiserating; and from the tone, I gathered that you see this lack of > commiseration as a positive thing. Can you explain a bit more? Do you feel > that commiseration forces you into the role of helpless patient - 'Patient > X' as you put it - and stops both you and other people from doing anything > creative and positive about your illness? > > - Edward > _______________________________________________ > NetBehaviour mailing list > NetBehaviour@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/ -------------- next part -------------- An HTML attachment was scrubbed... URL: <http://www.netbehaviour.org/pipermail/netbehaviour/attachments/20160603/b413edae/attachment-0001.html> ------------------------------ Message: 6 Date: Sat, 4 Jun 2016 11:18:05 +0100 From: furtherfield <furtherfiel...@gmail.com> To: NetBehaviour for networked distributed creativity <netbehaviour@netbehaviour.org> Subject: [NetBehaviour] Review of Gerald Raunig's latest book 'Dividuum?. Message-ID: <caovnvurxwr-zkc7kvz_vg_byaanmpxqx7nwyrydvdv-zlws...@mail.gmail.com> Content-Type: text/plain; charset="utf-8" Mathias Fuchs reviews Gerald Raunig's latest book 'Dividuum' @furtherfield - http://bit.ly/1UBrl7g Gerald Raunig's latest book examines the concept and the genealogy of ?dividuum?. Locating its roots in Epicurean and Platonic philosophy and referring to its controversial dispute in medieval philosophy, Raunig argues that the term has gained a new relevance in the era of machinic capitalism. Today, it is the formerly individual subject, the user, that turns into a dividuum as she is constantly asking for data and providing data. The old concept of dividuum, therefere, comes to describe what is to replace the individual when the latter breaks down. -------------- next part -------------- An HTML attachment was scrubbed... URL: <http://www.netbehaviour.org/pipermail/netbehaviour/attachments/20160604/1fab0849/attachment-0001.html> ------------------------------ _______________________________________________ NetBehaviour mailing list NetBehaviour@netbehaviour.org http://www.netbehaviour.org/mailman/listinfo/netbehaviour End of NetBehaviour Digest, Vol 2745, Issue 1 *********************************************
_______________________________________________ NetBehaviour mailing list NetBehaviour@netbehaviour.org http://www.netbehaviour.org/mailman/listinfo/netbehaviour
