[NetBehaviour] La Cura: possibilities?

Thu Jun 2 18:21:06 CEST 2016

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 :(

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-bounces at netbehaviour.org [mailto:netbehaviour-bounces at netbehaviour.org] On Behalf Of Annie Abrahams
Sent: June 2, 2016 4:07 AM
To: NetBehaviour for networked distributed creativity <netbehaviour at 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.xdxd at gmail.com <mailto: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/> http://www.artisopensource.net

[CITIES] Human Ecosystems Ltd -  <http://human-ecosystems.com/> http://human-ecosystems.com

[NEAR FUTURE DESIGN] Nefula Ltd -  <http://www.nefula.com/> http://www.nefula.com

[RIGHTS] Ubiquitous Commons -  <http://www.ubiquitouscommons.org/> http://www.ubiquitouscommons.org

---

Professor of Near Future and Transmedia Design at ISIA Design Florence:  <http://www.isiadesign.fi.it/> http://www.isiadesign.fi.it/

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-- 

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. 

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