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Enclose an idea in a photograph, give it a sense that escapes the most, grasping in the details the only hope of redemption for a becoming for which you have no control. A timeless becoming, devoid of truces, which takes away the breath and the strength but that in the process of transformation transforms the imperfect into a single time, the only one that is given to us to live. Rare, extraordinary lives in the ordinary. Lives crushed deeply by rare syndromes, orphan diseases in name. Lives that seem impossible to live, which is impossible to even approach, lives overflowing with suffering, often silenced, hidden. Lives that deserve to be told. Photographing delicate situations, thus showing the whole world the fragility that the disease is an expression of, the real challenge. A seemingly difficult terrain, full of pitfalls to which to approach slowly, carefully tip-toing the way in and holding one’s shoes in the other, in the name of the intimate respect that is due to pain. A challenge to which we want to give a face, to which we want to give a concreteness that will go beyond words and that through a collection of intimate images will become ink and become memory. And it is in the memory of the days that we will find the answer to a question that seems impossible to answer: the sense of life that if approached to the disease a sense does not seem to have, because trampled, crushed, humiliated, subjugated by pain. The redemption of the vanquished, who does not ask for anything else other than to live, and who thanks to photography will acquire the right to have a place in the world that seems to have been denied. Stories that, united by the common thread of diversity, will show the uniqueness of each experience, the intimate peculiarity that makes them so rare and unique in the eyes of science and the world. Finding a communicative and cognitive path that, through photography, reveals the experience of each protagonist, which is linked to family life and includes the network of doctors, researchers and scientists- and becomes fundamentally necessary and indispensable. (text by Eleonora Caputo).
The drama of this universe but also the pride and the pursuit of life through the most complex individual, family and associative stories with the aim of defeating the isolation of patients and sharing their experiences, networking, and finally leaving the invisibility. The authenticity of a photographic story is the result of a daily sharing that the photographer Luca Catalano Gonzaga creates with the protagonist of the story. The narrative thread is always the result of a relationship that develops over time, with discretion, constancy and empathy. Each report produced by Luca Catalano Gonzaga follows the ethical and deontological criteria of Witness Image: respect for the person and the goal of promoting a culture of solidarity and rights.
It is our goal to make it a stand-alone project, creating a dedicated website, within the portal of Witness Image Association, which collects all the photographic narrative projects. The work carried out could become a witness and vehicle of great impact and at the same time valuable documentation for the use of doctors and scientific forces that often struggle to find a clear answer. A project that aims to ensure better assistance and greater listening, without neglecting the psychological implications and the huge economic impact to which the patients and their families are subjected. Hence, the proposal to design ad-hoc routes to embrace entire areas of scope and action, such as hospitals, schools, psychological counseling and occupational therapies. Needs and necessities that will necessarily have to be considered without ever neglecting the individual history of the individual patient. To guarantee this, the commitment to carry out further photographic reports of patients suffering from rare and ultra rare diseases in the coming years.
Targets:
Traveling exhibition within the main Hospitals that treat rare diseases (in Italy and abroad).
Involvement of the Istituto Superiore della Sanità and other organizations in line with the theme of the project, through exhibitions / photographic projections.
Projections at conferences in Italy and Abroad on the topic of rare diseases.
Publication on opinion magazines and participation in major national and international photojournalism and photography festivals to raise public awareness.
Creation of a photographic book to be distributed during conferences and traveling exhibitions.
Involvement of Pharmaceutical Companies.
