Medical Humanities at grassroots level?

A few days ago, Italian engineer and artist Salvatore Iaconesi uploaded his medical charts and scans on a webpage under the title “The Cure.  A brain cancer.  Some very personal Open Data.  An opportunity.” He is looking for a cure, which could or could not come from health professionals:  “Grab the information about my disease, if you want,” he writes “and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem. Artists, designers, hackers, scientists, doctors, photographers, videomakers, musicians, writers. Anyone can give me a CURE.” This invitation resonates with the ethos of Art is Open Source, the network of artists that Iaconesi leads: they are “pushing forward the possibilities to reinvent our reality, to promote a more positive, aware, active and collaborative planet.”

As I was reading this, Arthur Frank’s words came to my mind: “Seriously ill people are wounded not just in body but in voice. They need to become storytellers in order to recover the voices that illness and its treatment often take away” (1995, XII). In the description of his website, Iaconesi highlights how anyone can help him recover his voice, anyone can help him cope with, if not recover from, his illness. This goes far beyond the hope to find different treatment options: in order to make sense of his illness experience, Iaconesi calls for a comprehensive, multifaceted, creative collaboration at (virtual) community level. Or, as I’d like to think of it, he calls for medical humanities in action.

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