“There are young people who go to the surgeon to look like their selfies”

-What is the first known representation of the disease?

-I begin the conference with a cave painting from Chad dating between 4,000 and 7,500 BC. Four women are seen together with a person lying down and it can be interpreted that it is someone who is sick or dying.

-The new academic approaches attribute the key to human evolution more to care than to competition.

-That is the part that interests me the most: care and illness as part of the essence of the human being.

-How has the representation of the disease evolved?

-Depends on the time and context. In times when religion was very important, missionaries and saints are seen caring for lepers. Then comes the illustration and the hospitals appear. With romanticism some diseases are idealized and fragile ladies abound who need someone to save them. And with scientific advances, the protagonism belongs to doctors.

-It is always the look of another on the patient.

-Yes, until the end of the 19th century when the great change took place, which I attribute to self-representation. With postmodernity begins a search for one’s own identity and from the 70’s many artists begin to make autobiographical work with family photos and home cinema.

-That is precisely the subject of your doctoral thesis.

-And my conclusion is that the starting point of that search is a mourning, either due to a death, due to an emigration process or due to an illness. In part I did this thesis because my grandmother had Alzheimer’s and we take care of her at home. But she stopped showing her in her photo albums and I no longer remembered her, only the symptoms of her illness. When you lose your memory you lose yourself and that was my starting point.

–With digital photography, mobile phones and social networks, self-representation becomes a widespread phenomenon.

-Now we carry a camera with us 24 hours a day and we take pictures of everything. People who were isolated at home because the disease did not allow them to go out on the street begin to meet and identify with people like them through images, which is an international language that awakens empathy. They are lives that are cemented through photos.

-For example?

-With breast cancer there has been a revolution through images. Jo Spence, who photographed her body after her breast was amputated, started a revolution of the female body and today millions of anonymous women share experiences and knowledge about cancer.

-There are iconic photos like that of the dying AIDS patient that Benetton turned into an advertisement.

-David Kirby was an activist and the family allowed this photo to be taken of him. But she was not made by a professional photographer, but by a girl studying journalism who was volunteering at a center for AIDS patients. For me that changes everything.

-Why?

-Because the point of view changes. It ceases to be an outside perspective (be it religious, medical, or journalistic) and becomes an inside look. The self begins to be valued. In social networks, it is the patients themselves who are photographed.

What is the consequence of this change of look?

-When the point of view was medical or journalistic, it was interesting to take out the worst cases because there was a scientific and denunciatory intention. The vision of the disease from within does not result in something monstrous, but more everyday. It is a more tolerant, democratic and attached to reality representation.

-Should self-representation have limits?

-In general it is a good thing, but things get complicated when you are 13 years old and suffer from depression or an eating disorder. You start sharing images, people pay attention to you and the more gory they are, the more ‘likes’ you get. Is that good for a sick person? For me the limit is morbidity.

-We adore youth, health and beauty.

-We began to have a problem not only with the representation of the disease, but with the representation in general. There are young people who go to the surgeon to look like their selfies.

-In the toughest phase of the pandemic there was a visual blackout.

-They left society blind to what was happening. It was not necessary to see dead or dying patients, but we cannot be talking about thousands of dead daily and that the images are of people applauding on the balconies or doctors picking up pizzas. What do we keep with the text or the photos?

-What was behind the ban on entering ucis and funeral homes to tell what was happening?

-I believe that there was not a premeditated plan but that in the communication cabinets there was fear. There are very serious issues there that have to do with the right to information and freedom of expression. There was an infantilization of the public and information professionals. They did not believe us capable of assuming certain images.