Mario Sperandini tells us forty years of commitment within ANFFAS, one of the major Italian associations of people with intellectual and relational disabilities >> VIDEO
Mario Sperandini speaks from Macerata, a beautiful city in central Italy. He has been dealing with rights and problems for a lifetime of people with intellectual disabilities. He is very busy, even with managerial positions, in an association that is well known in Italy in this field: ANFFAS (National Association of Families and People with intellectual disabilities and neuro-developmental disorders). Mario, can you briefly tell us something about yourself and how did you get involved in this field?
I am, as you said, Mario Sperandini, father of two children: Michela, the oldest, and Massimiliano, the second. I met ANFFAS with the birth of Michela (it was 1972). I met this association which was recently born in our city. ANFFAS was born in Rome in 1958 on the initiative of a mother, Ms. Menegotto, a German lady who had married an Italian aeronautical engineer. She was in Paris and had four children, the last of these born with a severe intellectual disability, Paolo. The family returned to Rome (because the husband had returned to work in Rome) and in Rome, in 1958, with respect to intellectual disability, they find the desert. For those who remember that period, intellectual disability relegated to institutions or sometimes to psychiatric hospitals. This was the cultural datum of the time. Maria Menegotto does not resign, how to say, to the oblivion of Paul and she contacts other mothers who in Rome live the same experience as hers. Women: here in ANFFAS women have a very important prerogative.
So, she brings these other women together and constitute the national association ANFFAS, which is recognized by a decree of the President of the Republic. Precisely because there was this feeling, this need, ANFFAS spreads really fast throughout the national territory. It spreads in the various territories depending on the opportunities, the possibilities, the commitment that the various family members have, but the initial prerogative of ANFFAS, of these women, was the safeguarding of the rights of people with disabilities, so that they were not “excluded”, “recluse” or “segregated in home cloister”, because this was, as it were, the trend of time. These women do not resign themselves:I repeat, the association is constituted by a decree of the President of the Republic and there is a patchy development in the national territory. Today ANFFAS as a whole has something like nearly 200 local associations. Each local association is autonomous from a managerial and asset point of view but bound and held together by the ideals that ANFFAS has always set itself that is, precisely, the safeguarding of rights. National ANFFAS entrusts to each local association the ANFFAS brand based on a code that we have given ourselves. This code must be respected.
In Macerata – and I take a leap into my city – ANFFAS was born in 1967, even here on the initiative of a group of family members that come together and ask the institutions for a space where to give meaning and meaning to our children. Then the Provincial Administration grants a former school; they work to put it back in order, in order, and the first activities begin. I met ANFFAS in 1973. Michela was born in April 1972. Shortly after, already from her birth, Michela highlights some difficulties not precisely diagnosed, because it was not a clear syndrome like Down’s. There was something else wrong, but no one could even understand what it was. ANFFAS Macerata, after her birth, in practice, in addition to these small occupational activities, availing perhaps willing family members, volunteers etc. you have the intuition to hire the first professional figures: a psycho motor therapist, a psychologist and another therapist. This fact gave ANFFAS Macerata, in those years, in the seventies, the opportunity to have a health accreditation: first with the Ministry of Health, then with the Regions. This fact allowed to start some rehabilitation activities.
We approach with Michela and my wife Giovanna to this association where there was a speech therapist who had been indicated to us for the first speech therapy treatments, and here, how to say, I am intercepted by some family members. I was (now retired, not retired because you never go belly up), I used to work in the Mental Health Department. Some family members asked me to be allowed in the “Board” of ANFFAS, and since that day, in some ways, I have been dealing with ANFFAS as a whole then I had the election as early as 1997 nationwide. So, this is my path of commitment, which starts from the presence of Michela, she who over time she had been diagnosed Prader-Willy syndrome.
You who have almost 50 years of commitment in this area could talk to us for hours about the social and cultural evolution you have seen, as you mentioned, and of which you too with your family and your collaborators you were also among the protagonists. If you had to summarize which ones are now the main issues on the table, the barriers that still hinder full inclusion, the actions that each should promote on its own territory, in short, the priorities, what do you tell us?
Look, in my opinion the priorities are like this: the UN document on the rights of persons with disabilities, because I would say this is, how to say, the “Magna Carta” that every administration but citizenship should also have, right? That of hospitality, that of inclusion because this involves growth also from a cultural point of view of the whole social body. Here then: the “nothing about us without us”, slogan that represents this “wanting to be”, this is what ANFFAS is working on, so that we do not forget or that there is no answer to that need only starting from a “accountancy” perspective (“if there are funds you can do it if there aren’t any”). If it is a right, it must be done: here, this is the prerogative, the element of commitment at this particular moment, also because it does not take body and foot the idea of “waste”. This is what ANFFAS is doing right now at national and local level, but everywhere there is a relationship between person, institutions, general relations.
It is very clear what you say. One last little question to conclude: it seems to me that in your experience and yours in Macerata, but also of other Sections, see how the commitment on disability issues, which seems a specific commitment for a small slice of the population, actually have a positive impact on the whole community, on the city, and also on a more general level produce more cohesive, livable and sustainable communities. Do you think this is true? In your experience, even in Macerata have you seen the city grow thanks to this commitment?
Look, there is no doubt in the sense that ANFFAS Macerata (at least this is my feeling, our feeling, which I have also tried to bring to the Board of Directors and in the relationship with collaborators) is precisely that of – how to say – ANFFAS is not someone’s counterpart: it is an association that he wants to show every day with his actions that disability can be of great value if the social body as a whole knows how to recognize this value. We have been committed over time to having relationships of a certain type with institutions: for example we have demanded in the City Council that a motion be made to take as a management paradigm, for example, the UN document on the rights of persons with disabilities. It was accepted, and therefore the Social Services, when they have to open a service or do something, the first interlocutor for them is ANFFAS, then sitting at the consultation table helps to determine what is best to do for this or for that, and we make ourselves available to act together with the institutions, therefore not “counterpart” but “part” to “heal” this social body.
Because it is also the goal of ANFFAS to carry this message, this “seed” that makes it grow a culture of hospitality. We have fought these battles in these years, this commitment, putting all the passion and effort that comes with it from also being parents, family members, sometimes making incredible mistakes, but it is like this: those who do not do not make mistakes. And then reconverting. But the line, the North, the direction is that of to have the community at heart, and not just the specifics of disability. This is the commitment that every day we try to put in our actions, in our being.
Thanks, Mario for your testimony.
Thanks, thanks to you and have a good day.