On March 28, 1958, the National Association of Families of Children with Intellectual Disabilities was founded (the name evolved over the decades, reaching its current form in 2005: National Association of Families of Persons with Intellectual and/or Relational Disabilities—ANFFAS) by a group of parents of children with intellectual disabilities, gathered around one mother: Maria Luisa Ubershag Menogotto. Working from a borrowed desk in a lawyer's office, in a building under renovation, these families began their work—the first national association of its kind in Italy, determined to overturn the stigma and blame that trapped them and their children. They fought hard simply to publish a letter in the weekly magazine Epoca, as Menogotto herself wrote: "the press had imposed a ban on addressing a problem so anguishing and so ignored." Politics was no different. For a child with intellectual disability, institutionalization was the default path.
A glance backward was fitting, but what mattered most was how ANFFAS chose to shape its conference: not by dwelling on the past, except for a video and some historical materials. National president Roberto Speziale emphasized that ANFFAS "has never stood still but has constantly evolved, aware of the need to keep pace with the times, always leading the fight for the rights of people with disabilities and their families." The association is committed to "building the future, refusing to settle for what exists today but constantly looking toward what can still be improved, innovated, and transformed—so that people with disabilities, their families, and the communities they live in can have a life of genuine Quality."
That commitment took shape across the second day of the conference: eight parallel workshops explored pressing issues, all focused concretely on the full quality of life for people with disabilities and their families. National and international experts, alongside representatives from ANFFAS's diverse and productive network, offered authoritative frameworks for each topic, grounded in real projects underway across Italy and Europe.
Crucially, people with disabilities themselves—self-advocates—spoke in nearly every workshop about their own work and initiatives. The range was striking: support strategies and assistive technology, cutting-edge diagnostic and therapeutic advances, evidence about aging with disability, the right to supported decision-making, fighting segregation, emerging research on autism spectrum disorder, developments in neuroscience. Above all, there was a clear understanding that each achievement, each barrier overcome, makes life more dignified not just for people with disabilities but for everyone.
The celebration that closed the day was organized entirely by people with disabilities. As Speziale noted, when you "provide proper support and real opportunity, you witness the miracles of artistic expression." Support and opportunity bear fruit. People with intellectual disabilities have changed profoundly, with new possibilities recognized in the UN Convention on the Rights of Persons with Disabilities—possibilities they now claim directly through the Italian Self-Advocates in Movement platform: "We all must work so that this is the last generation of people with disabilities to face discrimination and exclusion because of their disability."
ANFFAS has been one of the few associations that measurably transformed how society views intellectual disability. It contributed to drafting the laws that have reshaped disability rights in Italy over the past sixty years, sometimes pioneering new ground. Much remains: full inclusion in schools, genuine employment, truly independent living. But ANFFAS shows every sign of continuing the fight.
Cristina Tersigni, 2018