During the summer of 2017 Stefano Scagliarini contacted NoisyVision to request assistance for his thesis at Politecnico di Milano. We answered immediately, convinced of the contribution an external and artistic point of view could give to Usher Syndrome awareness.
The thesis has been awarded cum laude and the project will have a follow up.
The story reported here is set in Milan, the one of Dario Sorgato in Berlin, the one of Alessandro Mennella in Genova.
Three stories, three people, three cities for a common denominator: Usher Syndrome. Telling and photographing it can become art and poetry, as Luigina tells us.
A voiceover out of my visual field greets me, must be Stefano Scagliarini, the graduate student in Communication Design at the Politecnico di Milano that I am waiting for at the exit of the Moscova metro station.
Stefano Scagliarini contacted NoisyVision to involve some members in his thesis project.
I look quickly around, in front, right and left and again in front, right and left, and yet I do not see it.
After a few seconds of breathlessness, finally my gaze intercepts the face of a guy who is looking at me smiling. Amazed and intrigued, but kind.
It’s the first time we meet: a sort of blind date on a sunny July afternoon.
I told him I was going to wear a blue and white striped dress, but I had not given him any special instructions for use, like for example to position himself in front of me when he would arrive, and not to the side.
But, if you think about it, what better way to immerse himself in my world for someone who is writing a thesis entitled Blind Images. Photographers without sight?
(Thesis abstract here)
We sit in the shade under the gazebo of a bar and Stefano illustrates his thesis project, which can be summarized with three keywords: photography, blindness and synaesthesia.
Always passionate about photography and graduated from the Bauer CFP , he carried out an in-depth theoretical research on the themes of sight and oculocentrism, blindness and low vision and synaesthetic planning. He wants, through his thesis, to contribute to change the dominant sensory hierarchy in our society and to propose an approach, both in perception and in communication, which goes beyond sight and involves several senses simultaneously. It intends to achieve this goal through photography, the means that most of all is par excellence linked to the sense of sight, and the contribution and experience of blind and / or partially sighted people. People used to “see” and expressing themselves with other senses, rather than with sight. Inspired by the first example of photography made as a denunciation and expression of an inner state of mind, the Self portrait as a drowned man by Hippolyte Bayard (1840), Stefano would like to support his thesis with a series of self-portraits studied and staged to express a precise characteristic of people with visual disabilities who, with his guidance and support, will realize the photographic representation of themselves.
So the self-portrait as a means of self-knowledge and as an autotherapy. Photography as an expression of a specific message, but also as an instrument and a bridge to create human relationships, sharing of knowledge and mutual involvement – of subject and designer – in achieving a common project goal. The senses as an integral and significant part of the whole process, in the three phases of conception, realization and fruition. In fact, the design will come from the senses of the people portrayed and will be expressed through the personal perceptual path of each subject; the use of the photographs will then be accessible to everyone, visually impaired and non visually impaired, through the association and translation of sensorial stimuli.
From the theory we slip to practice: Stefano asks me what I would like to express about my visual condition and invites me to start from a song. The connection is immediate. I start talking about London Grammar’s Wasting my young years. The song speaks of a finished love story and for me describes the inability to overcome an obstacle, to really get close to someone or to realize their own dream out of fear. Not acting because of this feeling is tantamount to renouncing to live, in a broad sense, and means to remain motionless, losing the years and the best moments. Almost without realizing it, I find myself talking about the moment of my diagnosis when I was 25 years old. I remember it as if it was yesterday: the practitioner, who had just made me the OCT, leaves the room and turns to my mother, without even looking at me: “I can tell you that the result of the test shows a suspicion of retinitis pigmentosa, to be verified with an ophthalmological examination”.
… I know what I want to tell through my self-portrait!
I want to express the immobilizing fear I felt after discovering that I have a degenerative, untreatable pathology which is gradually leading me to lose my sight.
Stefano and I greet each other after two hours of conversation, both convinced and enthusiastic about working together.
We had then an exchange of e-mails in which we discussed how to develop from an iconographic and iconological point of view the theme I identified and the places of Milan that we would travel to create the video interview and reportage, which would introduce my self-portrait in the thesis .
September comes, I meet Stefano and his girlfriend Clorinda in Piazza Sant’Alessandro, a corner of Milan that I love very much, and, walking, I talk about myself.
Stefano is a discreet and faithful interpreter of my personality. He guides me and takes photos of me in an itinerary of hidden places rich in history, which reflect my passion for art.
Usually I do not like being photographed, yet there is not a moment in which I feel embarrassed. Precious is the contribution of Clorinda, who on tiptoe meets every need. Most of the photos of the report and the self-portrait are taken in the park of Villa Belgiojoso in via Palestro, in Milan. I make a real journey, of activation of sensory perception, of discovery and interaction with the various elements, such as trees, leaves, roots and statues; a journey that makes possible to tell without words my story as visually impaired.
The self-portrait is the perfect conclusion. The sculptural group I sette savi by Fausto Melotti (1981), located behind the Padiglione di Arte Contemporanea (PAC) that overlooks Villa Belgiojoso. The original work, built in 1936, included twelve white Carrara marble statues, which however were partially destroyed. The author, having to reconstruct the work, decided to make seven similar ones, but each one different from the others. Despite their almost geometric shape, seen together the sculptures seem real people, each immersed in their thoughts, with their eyes turned upwards and never meeting the trajectory of companions’ gaze. The almost sacred, totemic aspect of the seven statues creates a rigorous rhythm that well communicates with the environment and the surrounding atmosphere. Discussing it with Stefano, I decide to cover my face with a cloth and to wrap my body with a sheet, both white. As if I was the eighth element of the group, I place myself among the statues.
I could not find a better way to represent the physical immobility of the moment that started my history as visually impaired, the revelation of retinitis pigmentosa and the discovery of an uncertain and unpredictable future. The body in the height of my youth becomes heavy and cold like the marble of the statues that surround me, but they do not observe me. The white cloth on my face, which recalls Magritte’s paintings, creates on the face folds, paths of light and shadow without letting my identity leak out. This is to underline the idea of emotional immobility and the total annihilation of my hopes and dreams.
An annulment which, fortunately, proved to be temporary. Thanks to the support of my family and friends and exceptional people who I met on my path, thanks to the retinitis pigmentosa. Here I can not fail to mention Dario and Alessandro, my fellow adventurers Usher, who participated like me in Stefano’s thesis project, each telling his story.
Often the limits imposed on us by our fears and prejudices are far more disabling than physical ones. Of course, living with an hearing and visual limit is often complicated, but it is not enough reason to renounce living with enthusiasm and following one’s passions.
Thank you Stefano for finding us and for giving us the opportunity to express our vision beyond sight.
The other photos of the reportage
Note: All the pictures are protected by copyright and cannot be used or distributed without explicit consent by Stefano Scagliarini