60 years have passed since a woman, left blind and deaf by meningitis that struck her at just seven years old, decided to transform difficulty into an opportunity, choosing to “be helpful” rather than “a burden”. It was 1964, when she, with the support of Don Dino Marabini and a group of volunteers, founded an organization to open up the condition of deafblind people to the world and ensure that society took notice of them. That woman was Sabina Santilli and her creation is the Lega del Filo d’Oro: to celebrate her sixtieth birthday, yesterday, March 27, a great ceremony was held in the Sala della Regina in the Chamber of Deputies, during which the «Manifesto of deafblind people» was presented.
The event
The event was inaugurated by the vice-president of the Chamber Giorgio Mulé, who wanted to begin with gratitude: «There is only one word to acknowledge the work, or rather the mission, that those who collaborate with the Lega del Filo d’Oro carry out on a daily basis : Thank you. And to thank volunteers, staff, therapists, family members and above all the living miracles that populate the Filo d’Oro, I am proud to host them at the Chamber of Deputies on the occasion of the 60th anniversary of its foundation.” «We do this with a concrete signal from the government – added Mulé -, because with the expansion of the rule on the recognition of the rights of deafblind people, just announced by the Minister for Disabilities Alessandra Locatelli, the executive has demonstrated the centrality of the issues linked to the activity of the Filo d’Oro”.
The government’s signal
The Government also offered its support to the initiative through the intervention of the Minister of Health Orazio Schillaci, who defined the League as «an invaluable resource in support of deafblind and multi-sensory impaired people who, thanks to assistance, rehabilitation and education, they can make progress towards greater independence.” «With the approval in the Council of Ministers of the measure on the recognition of deafblindness», added Schillaci, the «government has given a strong signal of attention and listening to the needs of deafblind people».
A “change of perspective”
Also the aforementioned Alessandra Locatelli, Minister for Disabilities – protagonist of the third episode of the podcast In all senses created by the Lega del Filo d’Oro together with Open – she intervened via video message. Remembering how the League has now become “a family that carries forward the requests of many deafblind people”, thus representing “a point of pride for our country”. «We need a change of perspective that puts social issues related to inclusion at the top of the agenda. By working together we will do more and better”, promised Locatelli. Undersecretary of Economy Lucia Albano also spoke with a video message, wishing the Foundation “a flourishing future full of important goals like today’s”. She finally added: “The government is with you and supports you.”
The right to happiness
During the event, the Deputy Minister for Social Policies Maria Teresa Bellucci also wanted to remind us that the League not only represents “an example of competence and dedication towards others”, but also “of interlocution with the institutions”. «It comes from the bottom, from people who share difficulties, with the hope of creating a better world together – she explained. There is a “made in Italy” of social solidarity, which is something to tell, which should make us proud. It is unlikely that instead of philanthropy there are mutual aid associations that start from the bottom, demonstrating that the little ones can do extraordinary things. That you can find comfort, help, and even happiness in others. We all have the right to aspire to happiness. And happiness comes through relationships and encounters with others.”
«The League helps over 1200 people»
The President of the League, Rossano Bartoli, began speaking after a video presentation of everything that the Foundation has managed to build over the years. Moving images that led him to speak visibly moved: «In these circumstances I always have an allergy», he played down to justify his teary eyes. But he soon composed himself to recall the important goals achieved: «In the last year the League has helped over 1200 people, from children of a few months to the elderly, employing over 700 employees. They are joined by volunteers, today around 600.”
The requests
But not everything is rosy: «The problem is that public funding is lower than the costs that the institution bears. The support of almost 500 thousand supporters is a strength, but further effort is needed. The League is motivated to do more but needs more support from public institutions. My hope is that the institutions will intervene to guarantee disabled people a happier life.” However, Bartoli wanted to thank the government because, on the eve of this celebratory day, «a very important bill was approved for all deafblind people, which recognizes deafblindness as a unique disability, without discrimination between people with the same conditions developed in age different.” An indisputable step forward, which however has not yet exhausted all the requests articulated in detail in the Manifesto of deafblind people.
The poster
The document presented today is divided into ten points: first of all, it calls for recognizing as deafblind all people who are simultaneously blind and deaf, regardless of the age at which they develop these disabilities. As Francesco Mercurio, president of the Committee of Deafblind People, recalled in his speech, the law of 24 June 2010, n. 107, which currently regulates the matter, has great limitations: «It excludes from the audience all those who lose their hearing after the age of 12», furthermore «in the current state of affairs even those who could have obtained recognition have not, in fact, obtained”.
More inclusion
The manifesto still calls for guaranteeing access to healthcare services outside the Region, and for promoting a greater presence of the figure of LIS and LIST interpreters, i.e. capable of communicating with sign language, within the public administration and in healthcare facilities. The document also calls for promoting the scholastic inclusion of deafblind children and young people and those with psychosensory disabilities in primary and secondary schools, as well as the autonomous mobility of deafblind people also through the adequate training of assistance personnel for communication with people with hearing and visual disabilities in the public transport system, in particular railways and airports.
The role of the caregiver
The final requests revolve around the full implementation of the law of 22 June 2016, n. 112, to respond to the needs of family members of people with serious disabilities, recognizing the role of the family caregiver. And again: the Foundation insists that the development of inclusive working policies, forms of housing And cohousing for the specific needs of deafblind people, accessibility to institutional (and non-institutional) websites, and access to sport and culture, through the elimination of physical, sensorial and cognitive barriers. There would be an eleventh, unofficial point, not made explicit in the document but reiterated on several occasions during today’s event, which is not a request but a wish, the motto that has always characterized the League’s work. And it reads like this: «Forward and good courage, without ever holding back».
