“This was my cancer,” TED Fellow Salvatore Iaconesi begins his TEDGlobal talk, showing a slide of brain scans taken last summer, when he was diagnosed with brain cancer at age 39.
Since the moment Iaconesi heard the word “cancer” come out of his doctors’ mouth, he noticed something — that the way people related to him turned on a dime.
“When you have something as serious as cancer, your life disappears and you are replaced by a disease,” he says. “Doctors start speaking a language which you don’t understand and which is not really meant for you to understand. Your friends and family start saying, ‘What did the doctors say?’ before they even say hello. You become a disease on legs.”
Iaconesi — an artist and open-source engineer — felt an intense desire to get his medical records and brain scans, to be able to “see what was growing inside of him.” The records were not only hard to obtain, but when he finally received them, they were in a code only meant for other medical professionals.
“I started to understand that this industrial process which we call medicine was not really about me. It was a reduced version of me with all the human complexity taken out of it.”
So Iaconesi decided to use his technical know-how, hack these files, and open them up for anyone to see on the website La Cura. He asked anyone in the world to send him a cure, be it medical or otherwise.
“I asked all the people in the world to join me in my disease and help me in any way they could,” he said, “and together rediscover our complexity as human beings.”
Iaconesi made a data visualization of the 500,000 responses he received from the website. He shows it on the TED stage, and notes that the network of cures — multiplying exponentially every week thanks to press attention — reminded him of the cancer he knew was growing inside of him. He received art, music, suggestions for medical treatments, thoughts on lifestyle changes, traditional cures. One artist even printed a 3D sculpture of his tumor. Teams formed as neuroscientists discussed with each other medical options and artists collaborated on pieces related to Iaconesi’s cancer.
“The solutions came from all over planet, spanning thousands of years of human history and traditions,” says Iaconesi.
In the end, Iaconesi had a successful surgery to remove the cancer. “I’m fine, really,” he says. Meanwhile, he implemented many of the non-medical cures submitted to him, and credits these with healing him as well. The experience gave him a new appreciation of human complexity, and of the need for open access.
“[My cures] were created by people’s desire to be a part of a society whose well-being depends on the well-being of all of its members,” says Iaconesi. “I will only stress a single point: Who cares about all of the openness if it’s not matched by radical anthropological and cultural change?”