[NetBehaviour] La Cura: possibilities?

Fri Jun 3 21:39:21 CEST 2016

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 <gurstein at 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-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>
> 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/
>
>
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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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>

-- 
*[**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/
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