Just presented with Cesvi Naples the book “My ears speak” published a few months ago by the young Neapolitan Alessandro Coppolaa special boy suffering from Usher syndrome 2, a rare disease that led to deafness and will lead to blindness.
Breaking down models of perfection, accepting one’s diversity, clearing the topic of rare diseases, transforming pain into constructive energy and opportunities for communication or sharing and affirming one’s uniqueness against all forms of discrimination and classism: this is the goal of the young author with this autobiographical story.
“La Casa del Sorriso” by Cesvi in San Pietro a Patierno was born last year in collaboration with the “Il Grillo Parlante Onlus” cooperative and deals with marginality and vulnerability for children and families. «The presentation of the book is part of a process of events that address social issues such as disability, marginalization, discrimination and diversity – thus Renata MolinoCesvi project manager in Naples – Alessandro’s story makes us reflect on the search for one’s identity and respect for otherness.”
They took part in the meeting Valeria Anatrellapresident of the Il Grillo Parlante Onlus Cooperative, Stefano Pizialigeneral director of Cesvi, e Luca TrapaneseCouncilor for Social Policies of the Municipality of Naples, who underlined the dialogue on diversity to give those who do not know these realities the opportunity to understand them: «We often don’t know how to deal with disability, we find ourselves unprepared, especially when it comes to invisible diversities as in the case of Alessandro. Let’s start from our imperfections and make them become superpowers.”
Alexander in the book he recounts his childhood lived in a joyful atmosphere, surrounded by the love of his family. Then comes the bolt from the blue: the little one doesn’t seem to turn around when the teacher calls him. From here the investigations, the diagnosis and the sentence begin: «Medium-severe bilateral sensorineural hearing loss on the right and profound on the left».
Alone 4 years the battle against deafness begins, then the second diagnosis in 2019: a rare degenerative visual genetic disease, which will lead to blindness. All this makes him live more intensely, he enjoys every moment and finds beauty in the little things. But in book there is much more: a message to his generation, a criticism of those models of perfection that social media offers us and which often do not represent us, making people and young people feel not up to par.
Everyone has something unique and special that needs to be told, he comments Alexander. And he also talks about the gratuitous malice of those who bullied him for his disability which forces him to go around in a sweatshirt and hood even in August, the pain, the difficulties in dealing with the disease. But also beautiful moments: the memory of the teacher, a point of reference for him, because as he says she never made him feel like “the only disabled person at the banquet”, then his friends, his family, his mother: friend, manager and port safe place to take refuge, always. Despite the difficulties, no one is able to undermine his strength.
Alexander he is cheerful, extroverted, he takes life in bites, travels, goes to London And Barcelona, passes his high school exams brilliantly, is good at sports, dancing and is also a model of “inclusive” advertising campaigns to communicate to everyone the beauty of the imperfection that is in each of us. Furthermore, he carries out his personal mission with commitment: sharing his message in schools, juvenile prisons and sports clubs.
And he concludes: “I’m not angry with life, being angry would mean being angry with my parents who gave me life: instead it’s the greatest gift anyone can give you.”
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