The Aisla (Italian Amyotrophic Lateral Sclerosis Association) of Brescia and that of Bergamo, Capitals of Culture 2023, have sanctioned an alliance pact that overturns the paradigm of disability by relaunching the ‘My Voice’ campaign thanks to the collaboration with the dialect theater associations of the two provinces. On the symbolic bridge that connects Sarnico to Paratico, where one province ends and another begins – reads a release from the association – the two historical Aisla sections met forming a delegation of over 20 people, made up of sick , family members and volunteers to ratify the mutual aid pact aimed at joining forces to support the 300 families in the area who find themselves living with a disease as devastating as ALS.
“It is important to be here – said Luca Ruggeri, president of Aisla Brescia – It is splendid to find ourselves on this bridge which, for 200 years, has been a symbol for our communities. The bridge unites, strengthens, connects. It is the “image of worlds that seek and meet, which entrust their future to the beauty of an encounter. The bridge is like the rainbow, it passes over diversities and difficulties. Today we are witnesses of this and I am grateful to all the actors who they will want to join us with one of the most beautiful cultural traditions of our territory, our dialects, that ‘voice’ which is essential for us and which must remain alive”. The meeting was preceded by that of the dialect theater associations of the two provinces: the ‘Palco Giovani’ Association of Brescia and the ‘Ducato P.zza Pontida’ Cultural Association of Bergamo which, custodians of that treasure that every dialect brings with it, have married Aisla’s My Voice campaign.
For an ALS patient – recalls Aisla – the loss of the ability to speak with one’s own voice is one of the reasons for greater suffering. The tools of Augmentative Alternative Communication (CAA) available today, such as the ocular communicator, are essential to allow messages to be transferred, but the electronically synthesized vocal registers inside them give a metallic and impersonal tone of voice that often creates distance and discomfort. Today technology comes to the aid of people experiencing the disease with the possibility of keeping their voice by recording it or accessing a voice banking created thanks to all those who want to donate their own, such as the theater companies in Brescia and Bergamo.
The initiative – underlines Aisla – demonstrates once again how culture can be a generative element of plurality and contamination. Just as the Bergamo Brescia Italian Capital of Culture 2023 project is a sign of hope, pride and relaunch, after the dramatic years of the pandemic, so the message of Aisla is to promote a new paradigm in which fragility becomes an asset to be respected and valued .
“With the pandemic – observes Anna di Landro, Aisla Bergamo contact person – we have all developed resilience, listening skills, solidarity and activated good practices in daily life. But it is not only the most fragile who need care: it is being human being who, approaching disability, is mirrored in the very fragility of life, deluding himself that he has no difficulty. It is the weakest who offer the opportunity for knowledge and to overcome stigma to all others, to teach a way of knowledge. Aisla is grateful to all those who, by offering their disability in the request for assistance, actually offer the opportunity for growth and the ability to produce thoughts and imagine solutions. It is fragility that becomes the object of life, that becomes a noun. With this sentiment I would like to dedicate this day to the warrior Massimo Finazzi who, at the age of only 56, was defeated by ALS”.
The volunteers of Aisla Bergamo have been active for 26 years, those of Brescia for 15. With the opportunity to open the Bergamo-Brescia 2023 journey, the day represented the first road towards a strategy of cohesion and social inclusion, with the opportunity to plan for the long term. In fact, 2023 – concludes the note – wants to become an opportunity for exchange and donation for the two leading provinces to discover museums, parks, glimpses of the city and scenic and artistic beauties.
