The tenth anniversary of the UN Convention on the Rights of Persons with Disabilities (adopted by the United Nations General Assembly on December 13, 2006) and the twenty-fifth anniversary of Italy's Law 104/92 (approved by Parliament on February 5, 1992) invite us to consider the progress people with disabilities have made in our country. These milestones might seem to matter only to specialists. In fact, they mark two crucial turning points in how people with disabilities have come to understand their own rights—and in how society has come to recognize them.
Not every law reshapes a culture. In the world of disability, though, it has happened more than once, and visibly. The recent success of the television drama "La classe degli asini" brought public attention to the journey that led to mandatory school inclusion across all schools of every level. School is where inclusion begins, and the choice made in the 1970s—a choice that remains pioneering even today—has shaped how we understand disability in Italy ever since. While Italy, unlike English-speaking countries, has not developed a robust disability studies movement, one can say that a comparable cultural shift was introduced by the presence of vast numbers of disabled students in Italian schools, in percentages unknown anywhere else in the world.
School inclusion, the framework law on disability (Law 104), laws on employment, and especially the ICF and the Convention have transformed, irreversibly and profoundly, how people with disabilities perceive themselves, their abilities, and their rights. The phrase "I Count Too"—chosen as the slogan for a campaign on employment launched by the Sant'Egidio Community—captures this new reality well. Italian disabled people have developed a new awareness of their own worth and role. Young people with disabilities are growing up in settings—schools, sports, community organizations—that are generally inclusive, where difference rarely provokes alarm. Without downplaying the serious difficulties that school inclusion has faced in recent years, one can say it has substantially succeeded. The UN itself acknowledged this recently, praising Italy for this achievement.
Today, the presence of people with disabilities is far more normal and accepted than it once was. The President of the Republic can praise a disabled athlete in his year-end address. Works by disabled artists, like those from Sant'Egidio's art studios, hang at the Venice Biennale and at MAXXI in Rome. No one blinks at dining in one of many restaurants where disabled waiters and cooks work. School integration and serious reflection on disability rights have borne mature fruit.
This process has changed how disabled people see themselves ("I Count Too!") and how society sees them. The most significant shift has occurred within families themselves. The old habit of hiding disabled family members—which has not entirely vanished—and the shame or guilt that accompanied the birth of a disabled child are giving way to different feelings. The flood of memoirs and semi-autobiographical books by parents of children with disabilities shows a different, less pessimistic approach. More telling still, the insistent focus on "After Us"—what happens when parents are gone—reveals that today's parents envision something better and different for their disabled children.
It is not uncommon to hear parents speak of the anguish they feel thinking about their child's future after they are no longer alive. This worry signals, first, a new reality: disabled people are living longer, often outliving their parents. But it also shows something remarkable: families now find unbearable what was once normal—the placement of a disabled child in an institution. This is a watershed moment. Institutionalization—still widespread and often the only solution offered—was once the inevitable fate of most disabled people. Abandonment was accepted practice. Today, that same prospect fills families with anguish and is often refused outright. This feeling prompted five separate legislative proposals, eventually merged into the "After Us" measure recently approved. Yesterday's norm is today's nightmare.
This, as noted, is another sign of the cultural shift surrounding disability that Italian legislative innovation has produced since the 1970s.
The problem is that the capacity to actually claim these rights has not grown at the same pace. A gap has opened between the consciousness disabled people now have of themselves and what society actually grants them. While awareness spreads that disabled people can work like anyone else, the machinery of employment centers breaks down and mandatory hiring requirements fail. Similarly, the right to choose where to live—guaranteed by Article 19 of the Convention—clashes with the scarcity of group homes in municipalities and their near-total absence in the South. The hard-won recognition of legal personhood, guaranteed by laws on supported decision-making, is undermined by the desperate condition of many civil courts.
Frustration and anguish: these words best describe how people with disabilities and their families live today. Frustration is what disabled people feel when they know their rights but cannot claim them. Anguish is what parents feel when social services offer no answers about the future. Both feelings are sharpened by the mismatch between rising expectations and stalled services, between growing self-awareness and blocked paths to rights. No one disputes anymore that "I Count Too." But when it comes to finding a job or living independently, almost every door closes.
This situation—cultural growth paired with stagnation in public responses—has sparked countless community organizations and creative, resourceful initiatives. "I Count Too," as noted, is the Sant'Egidio Community's slogan for building a network of solidarity-minded restaurants. Italy now has at least forty restaurants where intellectually disabled waiters and cooks work. These are innovative ventures born outside official employment services, but they directly answer the hunger for work—and thus dignity, recognition, individuality—that young disabled people express with increasing clarity and urgency. "I Count Too" attempts to connect them, yet each initiative remains autonomous, born spontaneously where the need was seen and the energy to start it could be found.
The same could be said of many innovative residential models created by community groups or simple networks of parents. What matters here is this: the new disability culture—of which Law 104 and the Convention are crucial moments—has struggled to transform itself into institutional responses. It has generated frustration and anguish. But it has also released an energy from below, and that grassroots ferment is the brightest prospect now facing Italians with disabilities.
Vittorio Scelzo, Sant'Egidio Community, 2016