In September 2012, Italian tactical media artist Salvatore Iaconesi got the diagnosis. He had a glioma (glial cell brain cancer) of approximately 2x3 cm on the surface of his right hemisphere. Upon asking to see all the data relating to his condition, he found that all of the documents, MRI scans, and so on were in obscure not readily used formats. This meant that if one wanted to view the data, you needed specific or corporate software.
What he did then was remarkable. Iaconesi then hacked the formats of the documents and converted them into open-source ones that anyone could read could read with FLOSS (Free Libre Open Source) software. He then created the site, La Cura, where he presented his records as an “open source cure”. People around the world could access his records and then add their recommendations and findings about his condition, cancer, and so on. I begin this interview with Salvatore on September 15, 2012, and the La Cura website already has a rapidly expanding database of information at http://www.artisopensource.net/cure/.
Patrick Lichty: Salvatore, thank you for having this conversation. I remember that it was only a year and a half ago when we were shop-giving copies of the REFF tactical media book from your project, Fake Press in Rome. So, it was a shock when I learned of the glioma the day you launched the site. Could you talk a little about what is on the La Cura site?
Salvatore Iaconesi: Hi Patrick! Yes I do remember, too. And that is also a great explanation on what can be found at La Cura site: it is like one of our "fakes", except that it is not a fake.
La Cura is about an alternative reality which I want to materialize on this planet, now. In this alternative reality, when someone has a serious disease, life does not end. One can be social, creative, and friendly. Work, art, design, fun and entertainment are possible for diseased people in this alternative reality, just as it is possible to reach out to find cures in any philosophy, time, strategy, culture or way one wishes. And consider that even technologies in this alternative reality are designed to enable and facilitate all this, actively promoting the freedom and autonomy of people.But, sadly, life is not like this alternative reality.
I wanted it to be my alternative reality, so I just did everything it took to bring that reality into the world. It's like when you make an Augmented Reality application: you do a series of things to "materialize" some other things into ordinary reality. And then you have them, right there. So, La Cura is my personal Augmented Reality, in which, if I want to, I have all the tools and information I need to find a "cure" for my disease in one of multiple ways and strategies, which are medical, cultural, technological, emotional, artistic, political etc.
To achieve this, I have had to go through a series of obstacles:
The first is connected to language and information, as the first thing you notice at the hospital is that they are not really talking to you. Medical language is difficult and complex, and they rarely take action to make things more understandable to you. One of the testimonies I received in La Cura was that of a lady who has found herself in front of a doctor shouting at her: "You really think that I will explain to you why your thyroid has to be removed? It has to be removed! That's it!"
This is really not "open", in any sense. And, in more than one way, it is an explicit evidence of the approach which medicine has towards patients: they cease to be "humans" and become sets of parameters on a medical record subject to certain protocols and standards. When you are in the hospital, it's often as if you're not there. The only thing that matters is your data: blood pressure, heartbeat, magnetic resonance etc.
And the way in which information reflects this if handled in this context. Data formats may be, technically "open", meaning that they are described somewhere but they're really an explicit reflection that when you're sick you "step out of society". That data is usable and accessible only to "professionals" and to those people who have tools and skills to handle them.
Salvatore Iaconesi's scrollwheel - you can use your mouse
to navigate the graph. Info is added to it each day.
I, as someone with considerable expertise with computers, have had some difficulties in opening them. Imagine someone else with less skill! Most people would not have been able to benefit from all the types of "cure" which I am currently accessing from a variety of sources and modalities. They would not have access to a "cure" that doesn't end at a list of medicines and dosages, but spreads out into society.
To do that, I have had to hack into the information and convert it into really "open" data, using multiple formats that could be used by many kinds of people to do multiple things. In the format that the data was originally in, even if it was "technically open", that data would have been seen only by "professional doctors" and, instead of being a "human being", I would only have been a "patient", or worse yet, a "case".
PL: What do you want people to do with the information?
SI: Whatever they wish! Obviously! What is important in this case is that we must agree on what the "information" is... What I am publishing is my autonomous will to disclose my state of disease, including all data and medical information. I have my own purposes for this, but it does not necessarily mean that this purpose must/should be shared by others.
My personal purpose for this disclosure is to autonomously shape my own human condition. I have a disease but I am not a "diseased person". I am a person. And, as such, I wish to create my personal "cure", which has to do with my life, not with my disease. For what people know, I might even consider cancer as not being a "disease" at all! I might, for example, consider it an expression of the "cure", such as if I adhered to Hamer's theories. Which I don't, or, at least, not in the sense that "I believe" in Hamer's theories; I take them into consideration, but I don't believe in them, just as I don't believe in chemotherapy, in Aloe Vera, in Caisse Formula, in surgery, in shamanism, in healers, oncology or in any of these things. I take all of them into serious consideration, just as I seriously consider certain philosophies that say that we are made of energy, energy creates matter, and cancer is "matter" and so on. Therefore, cancer must be created by energy in some form. And so it could possibly be that I created cancer myself in a way or another.
So in this sense, I think it is very important to be able to easily look at the images of my cancer and to say "hello" to them. It is important to turn them upside down, to edit them with GIMP, to make mosaics out of them, to speak to them, asking "hello?" What are you doing in there? Did I do something to cause you? Can I change something to make you/myself feel better?"
Both scientific and traditional evidence shows that art, positive emotions, laughter, reduced stress, and a good social life have great practical benefits to the human body, I want to seriously consider that part of my cure could be formed by receiving an image of my brain with a smiley face drawn across it over the tumor, or a picture of a friend of mine, or a video of a projection mapping done with Processing in which the images of my cancer cover a whole facade of a building.
And since I don't want to believe, but I want to take all of these things into serious consideration, I cannot focus only on the "medical" approach (and the related information, and its formats). I need to access all of my information in multiple ways, and I wish that everyone could do the same (as, from my point of view, it's part of my Cure). And, even if "technically open", the format in which my medical records have been disclosed is not enough, because it is "open for professionals" and so the only thing I could do with it would be "show it to professionals", missing out on all the other wonderful parts of the "cure" which are available in the world.
This for me, is an interesting starting point to think about what things such as "OpenData" could mean. This is far beyond the idea that some government can some data according to ways in which some "professionals" could grab it and, do something like make a visualization or an App out of them. Who knows? In this sense, instead, we would not be talking about "technology", we would be talking about "humanity".
In the end, this is exactly what I'd like people to do with the "information". I want the world to take the fact that I decided to disclose the fact that I have a disease and that I want to actively search for a cure for from all of these perspectives. In the meantime, I want to reconsider what it means to be "diseased" in current times and what new conceptions of the word "cure", "medicine" associated with my condition could mean.
Iaconesi's video on Youtube "My Open Source Cure". Click above image to watch video.
PL: What has happened since you launched the La Cura site?
SI: Lots of things. People are contributing and participating in multiple ways. There are testimonies, art, poetry, suggestions, videos, performances. Many doctors have called in to propose their methodologies and technologies. I have had very interesting and profound discussions with people who are prepared to deal with very complex things every day of their lives. I’ve communicated with doctors who are perfectly open to the possibility of such a paradigm change for the word "cure". Artists, designers, activists, are giving me wonderful parts of "cure". Many "patients", "ex-patients", "relatives" and "friends" of "diseased people" are sharing their experiences, are opening discussions, are sharing the information I found on possible medical cures. And so many people want to talk to someone in new and different ways, becoming again, simply, humans. Journalists from all kinds of media have started to ask for interviews, texts and videos. We stopped that after a while, as we don’t wish to turn this into merely a "spectacle". We only keep on working on this with journalists which we know we can trust and which we know will not transform what we say to produce their news.
PL: For your information, I had an MRI in 2009 here in the States, due to my doctors’ concerns of something similar (nothing was found), but when I asked for the data, I got a CD full of JPEG images. Were you surprised when you found out your records were in particular formats?
SI: They were not really in a proprietary format. Let's call them "exotic formats for professionals". And yes, I would have expected something which I could have shared easily (such as your JPEG images, and maybe some meta-data in some easy to use format such as XML, or even a spreadsheet). But this was a sort of paradox: an "open" format which is really hard to open and to use for something else other than putting the CD in an envelope and (snail)mailing to the next doctor.
PL: What do you think the line is between privacy and data oppression? Would that be when the patient is denied access to their rights to access the information and distribute it as they wish?
SI: We should all know this by now. Privacy is not a problem unless the "system" is made by lousy people. We have tools to protect ourselves and to promote ourselves, and these tools are dangerous only when who runs them is a lousy person. Privacy protection arises through education (understanding what is privacy and when/where/how/why would I want to protect it) and through the acquisition of decent ethics from the people and organizations which run the entire infrastructure through which all our digital data goes through. And obviously, and most importantly, our ethics is created by helping each other out in a P2P way, teaching each other what we know, what we discover and how we decided to handle it when we found out.
There is no single line between privacy and data oppression. Not one which everyone would agree on. We have the tools for each one of us to tune this line to our own wishes, according to what we want to do, what are our desires, what are our objectives etc. We "just" need more places (physical, digital, virtual, institutional, occasional...) in which to discuss and share our points of view, as every time this happens, many things are learned on all sides.
PL: Do you consider your site a form of radical tactical media intervention?
SI: I can now say "I have a radical tactical media intervention in my head". Cancer is the new Black. The Cancer is the Message. And we could go on. I don't know. I guess I could call it that. I also guess I could call it a performance. I guess I could call it life. I guess I could call it hacking or whatever. I will just call it La Cura.
PL: What has been the most inspirational information, art, or otherwise that has resulted from the launching of the La Cura site?
SI: The most enlightening thing that happened is the experience of talking about the same exact thing using dozens of different languages. I have spoken with neurosurgeons, shamans, nutritionists, pranotherapists, doctors, activists, macrobiotics, hippies, cyberpunks, punks, friends, relatives. Most of the time, I received incredibly good advice. When you look at that advice from different points of view, you start to understand that you are really talking about the same thing, but in different languages.
For example, two of the most important things which you deal with when you talk about cancer are the idea of creating alkaline environments in your body (because cancer cells cannot stand them) and the facts that anti-oxidants are a great tool in support of any type of therapy (because of the molecular reactions which are at the base of cancer).
Well, speaking of just these two, it occurred to me that multiple theories deal exactly with these two concepts. I have had an esoteric master describe my cancer as an invisible living being, and he suggested to drive it away using sulfur and Rosa Rubiginosa oil, in ways which turn them into two incredible anti-oxidants and creators of alkaline environments as well as powerful stimulants of the immune system. I have also spoken with nutritionists and macrobiotics communities and learned about their instructions on choosing food, cooking and eating, many of which are directed exactly to that: anti-oxidants and creating alkaline environments, but through food.
And when an oncologist explained us his therapy, that's exactly what it was about: powerful anti-oxidants and alkaline environments. And on, and on and on. Aloe Vera, Caisse formula, fungus theory, chemiotherapy, Di Bella method, potassium ascorbate, ketogenic diets, etc: all highlight cancer cells in some way; create an environment around them which is as alkaline as possible; anti-oxidate them; activate the immune system as powerfully as possible so that the highlighted weakened, cancer cells can be more easily "convinced" at mutating back to a decent form or to commit suicide with the help of the immune system. Realizing this is an enlightening experience: it spans across thousands of years and also helps you make some choices (things stand out when they speak about different things!).
Everything else that is going on in La Cura is wonderful, but having realized this fact is just incredible and fascinating. You start imagining about all the other things we discuss about in our daily lives using multiple languages (energy, politics, emotions...) and start to wonder what would happen if you turned on this shared, P2P modality in those cases as well.
PL: How do you hope that others will benefit from the conversation that you are starting through La Cura?
SI: I don't "hope" anything. I did this because I felt I needed to. When one talks about "revolution" dialogues start arriving at the point when one says, "Let's burn everything down!" "Let's destroy everything!" and so on.
We know we can't do it. We can't "destroy everything". It's not possible. What we can do is to create a reality as if everything already happened - as if the "revolution" already happened, as if the world had been burned down already, and rebuilt, just the way you like it. We can live life like this. It is a bit more than "seeing things". But you do Augmented Reality, Patrick. You know what I mean. It's a bit more than "writing", it's about creating worlds.
PL: As of this interview, what is the prognosis of your condition?
SI: Depends on what perspective you look at it from. From the medical point of view I have a low-grade glioma at intensity which is still undecided, between 1 and 2 (we will have to wait an histologic exam to know for sure). From the human point of view: I am fine! I have no apparent symptoms. I just need to be careful because if I find myself in stressful situations I could react by having an epileptic shock. So it is not advised that I drive or things like that. It's the perfect excuse! :)
PL: Don’t you think it’s funny that the abbreviation for your name is "si"?
SI: Sì! Obviously :)