At this point, Salvatore Iaconesi does not need any introduction. With the launch of its latest web project My open source cure, he broke any balance in the relationship between net culture and mainstream media. Sure, talking about this as a “project” leaves a bit confused, mostly because the causes and motivations are among the most tragic: the story is familiar to many, Salvatore Iaconesi has recently been diagnosed with a brain cancer.
Unable to share his clinical materials with the Net, has simply “cracked” and uploaded them online on the website http://www.artisopensource.net/cure/, make them public and available to an international community of artists, hackers…and doctors. The hope is to find, somewhere in the world, a cure for his condition. The reaction of online media was immediate and widespread: from “La Republica” to “Corriere della Sera”, blogs, and any kind of opinion, in Italy and abroad (like “Scope”, the medical blog by Stanford School of Medicine – http://scopeblog.stanford.edu/2012/09/10/ted-fellow-uses-crowdsource-approach-to-treat-his-brain-cancer/): talking about social networking, personal branding and web 2.0. Internet answers when hidden to the heart, more than the head.
This interview comes from a sincere desire to help Salvatore Iaconesi, a long-time friend. I thought about a way in which a platform like Digicult could be any use in such a circumstance: well, what better than an interview? After all, the mainstream media have covered the news in their own special superficial way, by reporting comments from a variety of media personalities (whose contribution turned out to be quite banale), or by re-proposing the viral video Iaconesi had uploaded on the project website (another very clever strategy by Salvatore Iaconesi, long-time net artist and activist, used to fit between the net meshes). To date, mainstream meida have already forgotten his case.
The purpose of the interview is to have a “dialogue” with Salvatore. We want to better understand how this idea has originated and what emotional, moral and social issues is currently hitting. My Open Source Cure is definitely one of the most brilliant online projects in recent years, sitting between open sharing, social comunication and netart: it is effective in its simple communication, dramatic in its motivations and goals. I asked Bertram Niessen to help me with this interview: after all, who better than him in the Network could dissect this issues? And thanks also to Roberta Buiani for her fast translations and reviews. Good reading and good luck Salvo.
Marco Mancuso & Bertram Niessen: First of all, tell us how you acquired your medical records and when you came out with such courageous idea.
Salvatore Iaconesi: It was very simple. Images the scene: they diagnose you with quite a serious disease. You come out with no alternatives: you are told that you have “this” and you have to do “that”. Period. I really admire and trust those really great people I encountered while I was at the hospital. I believe that being exposed to other opinions, philosophies and cultures is fundamental.
We have changed as human beings: we have access to modes and means to dialogue with each other, to obtain information, to deal with experiences, practices and points of view of other individuals. From this we can draw other types of experiences and conscience that transform the way that we perceive reality, life, the space that surrounds us, and the events that affect us. It was a natural desire for me to open my personal experience and my health conditions to others, in order to turn it into a dialogue with those who were willing and could contribute in many ways. I asked to be discharged from the hospital to start this process. I asked for my medical record in digital format with a single purpose: to make it distributable and sharable in as many ways as possible.
When I got home I opened the CDs they gave me at the hospital and I had an unpleasant surprise. The CDs contained files in a format similar to DICOM. DICOM is, technically, a standard: it is used to store different types of images resulting from analysis and clinical investigations, mixed with meta-data that are used for various purposes (for example to use the images to reconstruct a three-dimensional model).
It must be said, however, that the technical definition in this case coincides with the “philosophical” definition of medicine: it is an “open” format as long as it is opened by a medical specialist with a certain instrument or specific software. Besides, the file was not even properly DICOM, at least as far as I could tell, while I was trying to open it using a software designed just to read that format. The only thing I could do with those CDs (not to mention the paperwork that accompanied them) was to put them in an envelope and send them by registered mail to one or more doctors, who were in fact the only ones who could open them. This made prevented me from doing what I thought was necessary.
Thus, I had to fiddle between different software, plugins, software libraries, and other tools to open the file, extract the information, and save it in more popular formats: images and meta-data represented in simple formats such as XML. This has completely changed the scenario: translated in these formats, anyone could have now opened the files and information using their own computer, from their own PC or tablet, either to provide medical advice or to take part in another kind of “treatment”, a human, social, artistic and creative one. Now: I have been able to do it, but not everybody would be equally capable. This, to me, is a fundamental problem, which characterizes much of our contemporary life.
Marco Mancuso: I find the operation you are performing extremely consistent with your artistic career. Personally, this is one thing that strikes me very much. You have always been engaged with the dynamics concerning open culture and sharing. Even during such a delicate time like this you have not ceased to support these ideas. It seems to me that the attempt here is to try to contact multiple networks from a single switch: your community of friends and professional contacts to function as a flywheel; the mainstream media for a wide visibility; and finally the doctors / scientists to reach a possible cure. Honestly, do you think that the network has this capability?
Salvatore Iaconesi: This is a very complex discourse. In every space there are different possibilities, sometimes existing in the same place all together. For me, this and other actions are an opportunity to emphasize that a major transformation has already occurred in human beings; it is chance to suggest that maybe it’s time to try and figure out how to rip the benefit of it.
On the “Net” there are many souls, different, even chaotic. Talking about “Cure”, I received very pragmatic and well-informed advices, from a Western medicine to other traditional perspectives, along with many other things. It is not possible to give a single reading, but all these may be perceived as a network of thought: ideas, guidelines, assumptions, suggestions, expressions meet, recombine and form something new, something that is beyond us individuals. It is possible to navigate all this information, yet not get “single and universal answers.” If you interpret it from a scientific angle, this approach might seem potentially dangerous.
But it is not, because somewhere within it you can find a solution. It is a solution because it generates dialogue, it elides false security, promoting critical and comparative approaches, and, above all, solidarity and human dignity. We often tend to delegate the responsibility for our choices to “others”: if a doctor wearing a white coat tells us “you have cancer and you have to do chemotherapy,” usually we feel in a condition of pressure that does not allow us to face the authoritarian figure standing in front of us.
Having a network and some openness offers a completely different approach, in which there is, in fact, less authority. It ‘s a model that allows you personally confront the authority with responsibility, choosing “who to believe.” It is not a simple move. But it is a crucial move. In order to “choose whom to believe” on the Net, you need to rely on a system of relationships, a system of people surrounding you, with whom to establish real relationships, not simply bureaucratic or administrative connections.
In all respects, you must participate actively in the “cure”, since you are practically obliged to inquire, to study, to understand whom to see, whom to trust, by whom to be surrounded, by whom to be comforted, and so on. It ‘a shattering approach, which makes mystification and authority very difficult. If learned and used “culturally”, as a practice of living together, this approach really becomes a starting point for a transformation, according to which everyone is “master of himself”, dispose of her own information and decides whom to trust: to a local authority of his choice, or to the liberty to activate, compare, study a variety of opinions. You can be accompanied in this journey by many fellow travelers who may have different roles, ranging from the more technical roles to those dedicated to your physical, spiritual, sensual and intellectual wealth.
Since “Cure” started, I have more certainties, accompanied by many possible alternatives waiting to be evaluated (in terms of before / during / after a situation like mine), and many wonderful energies, represented by the possibility for people to express themselves and accompany me, in the simplest and most naïve ways, and in more complex ways. All this was enabled by the ability to own my records, so I can use them as I please and I can transmit them online, and I can do what I feel is right for me. We are light years away from the concept of “care” usually presented to us: these consist of unintelligible definitions, incomprehensible care, people who, at a given time has to swallow pills, sign releases, undergo surgery without knowing why, and then crosses her fingers not knowing what will happen later on, maybe without receiving any of the psychological or social support usually needed in such circumstances.
Marco Mancuso: The idea of leaving the visual materials related to your medical record to the artists conveys an important idea of sharing of the vision of your body and yourself. I am wondering if the message you wanted to transmit with “Cure” only focuses on the medical perspective or is also made to receive an emotional and aesthetic support, something that keeps you connected to your world, your way of life, a means to exorcise a moment of trouble ….
Salvatore Iaconesi: Yes, absolutely. And it also has to do with what I was mentioning before. “Care” is a complex word that has become increasingly simplified as a result of the many different ways in which the world we live in has developed, becoming the representation of a thing that is only one part of its meaning. Art has many meanings. First, its goal is to touch, to express and expose sensitive elements of the world around us, including the ways in which we perceive our bodies and our relationships. Here we are talking about this, to become performers ourselves, in this playful way, yet responsibly, a behavior that is typical of the Net.
Marco Mancuso & Bertram Niessen: What you are doing has a number of ethical implications. Your data are, as you define them yourself, “very personal”. Perhaps they are the most personal data existing. This choice will probably become a big issue among the communities that deal with digital rights, with a chanceof further polarization between the proponents of “total opening” and those who say that the web 2.0 does not care enough about privacy. Have you already imagined a possible evolution of this discourse? What do you expect?
Salvatore Iaconesi: This is another very complex matter. And we’re working on it. It is one of the first thoughts emerged from “Cure”. Several people have offered their contribution, their performance, they offered to write software, to design models and processes that play with the possibility of transforming information practices related to our body. In another context, we could speak of biopolitics. In this case different types of actions are taking place: some are very spontaneous, some emerge from a political awareness of a certain direction, other come from the simple idea that “it feels right”, that it makes sense, that “I wish it were so. “
Issues concerning privacy and “the big brother” are very present in all these reasoning. The main trigger though is claiming the possibility to choose, freely, in every sense of the word.
Bertram Niessen: The communication campaign you have launched was entirely focused on the “Open Source Cure.” Your discourse revolved around the fact that now your medical records are freely available in an open format and can be downloaded from your website Art Is Open Source. A complementary aspect of this discourse is not named, but it might be called the “Crowdsourcing Care”: a choice to collect in a shared form all the gestures of care, understood in the broadest sense that your target communities utilize in several ways. What do you expect from this approach?
Salvatore Iaconesi: Actually, I do not expect anything. This discourse goes beyond usefulness. In the sense that what moves the entire discourse is a sort of sense of reappropriation of a living space, as this space is enabled by technologies. In fact, if I have to say, it would be easier to count and do a selection, choosing the doctor, who statistically has been the most successful in treating this health problem, and let him take care of it. This would mean accepting terms such as “tolerable damage”, “calculated risk”, “mild side effects” and things like that. These words come from an “authoritative” source. Period. Okay.
But since I have chosen to deal with it in this way, I must first learn to choose, filter, group, compare. And to ask too, to relate, to select people, to learn how to read and to study, and where you can not get any answer yourself, how to ask, to choose whom to consult, to compare the responses, to choose when to stop and when to go forward. It’s all very complicated.
But it is also what seems to me a possible direction, because in the end, it is the one that opens the most interesting scenarios resulting from our transformation. So far as I can see, in this scenario I am one with my data, and regarding this whole apparatus, I am the one who can decide what to put in the public and what to keep private, what to do, how to use it and so on. If, in the midst of all this “thing”, my body-with- data has extensions able to connect with a whole new set of bodies-with-data free to choose what to do, something different may happen.
That’s more or less what’s going on with “Cure”: people join because they find all sort of affinities, even very temporary, but very strong. And they take this “thing” very seriously. They do so in every possible way, by looking for solutions, and by getting involved and engaging in the care holistically, expressing emotions, presence, support.
The discussions, in particular, are very animated too. Just today I “discovered” some additional things about the digital formats I had to deal with (by the way, the one that I used above to explain certain details), including interesting and heartfelt discussions, software libraries, tools and techniques. In the same way, there have been people who have agreed / disagreed in a very animated manner on the terms of the cure, on alternative strategies, and completely different solutions. These were of the utmost importance: They help an individual “get out of himself”, they teach not to think with fear, to take into account multiple perspectives.
Bertram Niessen: My Open Source Cure communication is dry, almost brutal. You get straight to the point without circumventing it. Many have already pointed out that this choice may bring a certain tendency to voyeurism or a perverse sensationalism (through the language of those mainstream media that you have always criticized). This brings some serious risks that your messages is misunderstood or not fully understood in its complexity…how did you frame this issue?
Salvatore Iaconesi: The problem is actually very simple: the spectacle. Luckily, we can benefit from an entire culture and experiences existing out there. There are people, groups, artists, a variety of communicators who have already dealt with this “spectacle”, and have drawn some conclusions, strategies and hypotheses. The basic idea is that the “spectacle” is unbeatable. It is a mechanism that by its own nature swallows everything. You can’t “use it”. What you can do though is turn it into a performance, geared towards the creation of an “environment.” You can move within it. It is a “strange” environment, mobile, mutating, like the Web. But it is still an environment. You can, from within it, move around, curate it, take care of relationships, information and contents and ultimately cure yourself.