Interview with Vincenzo Falabella, National President of FISH ETS (Italian Federation for the Rights of Persons with Disabilities and Families).
1 Welcome and inclusion
How would you describe the situation today regarding the welcome and inclusion of people with disabilities in Italy and, more broadly, in Europe?
Today I would describe the situation in one word: unevenness.
In Italy, as in many European countries, we have made important progress on rights, legislation and cultural awareness. But there is still far too wide a gap between what is formally recognized and what a person with a disability can actually experience in everyday life.
The central issue is not just how many services are available, but how accessible, consistent and good they are. In Italy, where a person lives still has far too much bearing on whether they can obtain adequate support. Some areas have well-organized services, integrated health and social care networks, and good examples of inclusion. In others, families must still make up for shortcomings in the system, coping with waiting lists, divided responsibilities and difficulties accessing personal assistance, rehabilitation, independent living or services close to home.
That has a very serious consequence: a right should not depend on your postcode.
Across Europe, too, there are very different models. Some countries have invested more in home-based support, personal assistance, independent housing and community services. Others remain heavily reliant on residential and institutional models.
The direction set out by the UN Convention on the Rights of Persons with Disabilities is nevertheless clear: gradually move beyond systems that separate people from their communities and build support that enables everyone to choose where, how and with whom they live.
When we talk about welcoming people, then, we need to be careful about what we mean. The aim cannot simply be to “admit” someone to a service. It must be to guarantee their full participation as a citizen: choice, participation in society and access to work, education, healthcare, culture, transport and community life.
In Italy, the reform introduced by Legislative Decree 62 of 2024, including the individual, personalized and participatory Progetto di Vita, or life plan, is an important step because it seeks to shift the focus. Rather than requiring people to adapt to the services available, services should be built around their needs, wishes and life goals.
The challenge, however, is implementation. We need funding, qualified staff, coordination between health and social care, strong local services and ways to monitor outcomes. Without these, even the best reforms risk remaining on paper.
There is also a cultural issue that I consider decisive. Inclusion is not achieved solely by adding new services. It happens when a person with a disability is recognized first and foremost as a person with rights, wishes, abilities and responsibilities, rather than a passive recipient of assistance.
That is why I believe the true measure of a system’s quality is not how many services it can fund, but how well it can guarantee people’s independence, freedom of choice and participation.
Italy and Europe are moving in the right direction, but we must recognize that there is still a long way to go. The crucial step is to turn rights recognized in law into rights people can actually exercise in everyday life.
2 Disability and the Sustainable Development Goals
What progress have we made on disability and inclusion under the Sustainable Development Goals? Do you consider them genuinely useful tools for assessing progress and identifying problems?
I would say disability is much more visible within the Sustainable Development Goals than it used to be, but it is still not sufficiently integrated into policies and, above all, into systems for measuring results.
The first thing we need to make clear is that disability does not belong to a single goal. It cannot be confined to Goal 3, on health and wellbeing.
It concerns tackling poverty, education, gender equality, decent work, reducing inequalities, accessible cities, mobility, digital innovation, social protection and communities’ ability to respond to emergencies and climate change.
The World Health Organization itself emphasizes that many targets under other SDGs are directly connected to health. We need to apply exactly that understanding of interdependence to disability as well.
From this point of view, however, we remain a long way from our destination. The United Nations Disability and Development Report shows that people with disabilities continue to be left behind in progress towards the SDGs. Significant gaps persist compared with the rest of the population, particularly in access to healthcare, economic security, technology and other key factors affecting quality of life.
A subsequent UN assessment found that progress for people with disabilities was insufficient on about 30 percent of the targets analysed. On a further 14 percent, the target had been missed, progress had stalled or there had been a reversal.
This tells us something very simple: it is not enough for the Goals to be inclusive on paper. We need to check whether the results actually reach people with disabilities.
Personally, I find the SDGs extremely useful, provided they do not become a mere reporting exercise. Their value lies in making us measure public policies against tangible, verifiable results.
How many people with disabilities really gain access to work? How many can choose where and with whom to live? How accessible is healthcare? How many students can participate fully in school life? How much do location, family income or gender still affect access to services?
To answer these questions, we especially need data disaggregated by disability. I have been making this point for a long time: what we do not measure risks becoming invisible.
If national statistics and SDG indicators cannot clearly show the situation of people with disabilities, overall indicators may appear positive while part of the population remains excluded.
That is why the UN Convention on the Rights of Persons with Disabilities and the 2030 Agenda must be read together. The Convention tells us which rights must be guaranteed; the SDGs can help us check whether those rights are actually becoming a reality.
There is a principle of the 2030 Agenda that I consider particularly important: “Leave no one behind.” But we must interpret it in its most ambitious form: reach first those who are currently furthest from being able to exercise their rights fully.
The United Nations continues to find that people with disabilities are among the groups facing systemic disadvantages on the path to the 2030 goals.
So yes, the Sustainable Development Goals are an important compass. But a compass is useful only if we are willing to look honestly at how far we still have to travel.
For me, the true measure of sustainability is not only economic or environmental. It is social, too. A society cannot call itself sustainable if it continues to produce exclusion, dependence and inequality for millions of people.
That is the challenge for the coming years: to treat disability as a consideration across the whole 2030 Agenda, and as a way of assessing the quality of every public policy, rather than as a separate chapter.
3 The needs of individuals and their support networks
What are the main needs today of people with disabilities and, in parallel, of their families and caregivers?
In my experience, the first mistake to avoid is assuming that the needs of a person with a disability can be reduced to healthcare and assistance alone.
A person is more than the sum of their clinical needs. They have physical needs, certainly, but also psychological, social, emotional, educational, employment, housing and broader needs in life.
They need to be able to choose, to be heard, to have meaningful relationships, to take part in community life, to study, work and get around, to experience love and intimacy, to develop a life plan and to decide where, how and with whom they live.
In other words, they need what everyone needs: dignity, freedom, belonging, prospects and the opportunity to direct their own life.
Of course, these rights require adequate support: personal assistance, accessibility, quality health and social care, assistive technology, educational support, employment opportunities, mobility and inclusive housing.
But the crucial point is that support must be built around the person, not the other way around.
That is precisely the thinking behind the individual, personalized and participatory Progetto di Vita, or life plan. We should start from the person’s actual life, wishes and goals, and the conditions needed to fulfil them, rather than from whatever the system already has available.
At the same time, we must look at the family and caregivers. Too often we have built a welfare system that implicitly assumes families can make up for everything public services fail to provide.
But families are not an inexhaustible resource.
Anyone who supports a person with a disability every day needs financial, psychological, social security and employment support. They need respite services, ways to balance care and work, clear information, reliable points of contact and the confidence that a public support network will step in when difficulties are greatest.
There is also a need that too often goes unrecognized: the family’s right to continue having a life of its own.
Being a parent, sibling, spouse or caregiver cannot mean giving up your identity, relationships, job or health.
That is why I believe a genuine disability policy must consider the person and their living circumstances together. But one principle must remain firm: the family should be supported, not made to stand in for the state; and the person with a disability must remain central to decisions affecting their life.
4 The role of the community
How can communities, social networks, volunteers and local areas help support people with disabilities and their families?
Communities can play an extraordinarily important role, especially when health and social care systems are under great pressure. But we must be clear on one principle: communities cannot take the place of rights that institutions are responsible for guaranteeing.
Volunteers, social networks, associations, neighbours, parishes, sports and cultural groups, and other local organizations can build relationships, counter loneliness, create opportunities for participation and make places more welcoming.
They can notice things institutions sometimes miss and identify isolation before it becomes an emergency.
This is an enormously valuable resource.
But it must be part of a system with strong public responsibility. We cannot imagine a welfare system in which a shortage of staff, personal assistance or home services is met simply by asking communities or volunteers to fill the gap.
Subsidiarity does not mean the state withdrawing. It means cooperation among institutions, third-sector organizations and citizens, with each meeting their own responsibilities.
I therefore believe a local area should be much more than a place where services are delivered. It should become a community that cares for relationships.
An inclusive school, an accessible workplace, a neighbourhood in which someone can move around independently, a welcoming sports club, a genuinely accessible cultural service: all these contribute to health, wellbeing and participation as much as many conventional services do.
There is another point I consider essential: the community’s role should not simply be to “help” people with disabilities. It should recognize them as active citizens who can contribute to collective life.
People with disabilities should not be regarded solely as recipients of other people’s solidarity. They should be able to serve as volunteers, public officials, workers, association leaders, athletes, professionals and active participants in social life.
That is the cultural shift we need: from a community that provides assistance to one that includes.
When that happens, the benefits extend beyond people with disabilities and their families. Everyone benefits, because a community that welcomes differences is stronger, more cohesive and more democratic.
5 Perceptions of change
From the perspective of people with disabilities, is there a tangible improvement today in inclusion, independence and quality of life?
In recent years, the way people with disabilities view their communities and services has certainly changed.
There is greater awareness of rights and increasing attention to independence, accessibility and participation. Positive initiatives have developed in many areas. But it would be wrong to say that change has been consistent or sufficient.
The central point is that people with disabilities today are not simply asking to be cared for. They want to be able to choose, participate, live independently, work, study, build relationships and decide where and with whom they live.
In other words, they are asking to exercise their full rights as citizens.
That is an important cultural change. But this greater awareness also makes the remaining gap between recognized rights and the responses available in practice more obvious.
Severe regional inequalities persist, as do difficulties accessing services and shortages in personal assistance, home-based support, independent housing, mobility and inclusion at work.
All too often, the quality of support still depends on where a person lives, how well their family can navigate the system or how much money they have.
That is unacceptable.
A right cannot depend on the luck of finding an efficient service or a more attentive administration. It must be accessible, reliable and enforceable everywhere.
I also think the way people judge services has changed. It is no longer enough for a service merely to exist: it must be good, personalized, flexible and genuinely able to improve a person’s life. It should support people, not take over their choices.
That is why the Progetto di Vita is such an important step: it shifts the focus from services to people, and from standardized needs to life goals.
For it to work, however, we need resources, skills, coordination among services and genuine participation by the person in decisions affecting their life.
In short, I believe we have made important cultural and legislative progress, but significant gaps remain in daily life.
The true measure of change is not how many laws we pass or services we launch. It is how free a person with a disability really is to choose their path in life.
That is where we still need to make the greatest leap.
6 Good practices and the role of storytelling
Which experiences do you consider especially significant and replicable? And how can storytelling help improve services and build a more inclusive community?
There are examples in Italy and abroad that show something very important: when services are built around people rather than the organizations delivering them, quality of life really does change.
I am thinking, for example, of independent living models, self-managed personal assistance, shared and supported housing, and local networks that connect social care, healthcare, work, schools and communities.
These practices matter because they have something in common: they give people with disabilities an active role in defining the support, priorities and choices affecting their lives.
The most effective good practices overcome fragmentation.
One good service is not enough if a person must then piece together healthcare, assistance, transport, work, family support and opportunities to participate on their own. Real innovation lies in creating coordinated, flexible and personalized pathways.
That is why I particularly value initiatives centred on individual life plans, support at home, moving away from institutional care, personal assistance, universal accessibility and the direct participation of people with disabilities in designing services.
These models can be replicated, but only if they are adapted rather than copied mechanically. Every local area is different, and a good practice becomes truly useful when it is tailored to its context, available resources and, above all, people’s real needs.
Alongside these practices is the question of storytelling, which I consider decisive.
How we talk about disability helps shape how society sees it.
For too long, stories have swung between pity and portraying people as heroes: on one side the vulnerable person to be pitied, on the other the “extraordinary” person expected to overcome every obstacle. Both are distorted portrayals.
People with disabilities should not be portrayed as symbols. They should be portrayed as people.
They have wishes, difficulties, relationships, jobs, loved ones, responsibilities, aspirations and contradictions, just like anyone else.
Good storytelling can improve services by making visible needs that statistics alone do not always capture. It can reveal problems, but also solutions that work.
It can give families and caregivers a voice, but above all it must ensure that people with disabilities tell their own stories directly.
That is a fundamental point: nothing about people with disabilities without people with disabilities.
Telling stories well also creates knowledge. People’s life stories can help institutions understand where services fail, where they succeed and where a change of approach is needed.
Storytelling, then, is more than a means of communication. It can become a tool for planning, evaluating and improving public policy.
There is a wider cultural dimension too. When a community genuinely knows the experiences of the people who live in it, it becomes more aware and less susceptible to stereotypes. A more aware community is also a more inclusive one.
That is why I believe good practice and good storytelling must go hand in hand. Practices show us that change is possible. Storytelling helps us understand, share and reproduce it.
Social sustainability also depends on our ability to build better services and, at the same time, a shared understanding in which disability is seen as part of human diversity, rather than an exception to be managed.
That is the most important cultural shift: to tell stories not only about needs, but also about the rights, abilities, choices and contributions that people with disabilities bring to their communities.
7 A final perspective
Is there an issue you consider particularly important for understanding future priorities and challenges in the field of disability?
Yes. I would add an issue that I consider decisive for understanding the challenges ahead: whether people can actually exercise their rights.
In recent years we have developed a very advanced legislative framework, both nationally and at European level. We have the UN Convention on the Rights of Persons with Disabilities, new reforms, tools such as the Progetto di Vita, and greater attention to accessibility, independent living and participation.
But the real problem today is turning these principles into rights people can exercise in everyday life.
A person with a disability should not have to master laws, procedures, appeals and administrative responsibilities to obtain what they are entitled to.
Nor should their rights depend on where they live, their family’s ability to navigate the system or their own financial means.
That is why the priority in the years ahead must be to narrow the gap between recognized rights and rights genuinely guaranteed in practice.
Another closely related issue is the direct participation of people with disabilities.
We must move beyond developing policies “for” people without developing them “with” them. The principle of “Nothing about us without us” must become standard practice in the planning, design and evaluation of services.
I also believe we will need to invest much more in data. Without up-to-date, disaggregated and comparable information, it is difficult to see where policies work, where inequalities are growing and which interventions genuinely improve quality of life.
Finally, there is a cultural challenge that remains fundamental: to stop treating disability as a separate area of public policy.
Disability concerns education, work, health, mobility, housing, digital services, culture, sport, social protection and community life.
Real transformation will come when every public policy is designed from the outset with people with disabilities in mind, instead of being adapted later to correct exclusions already created.
If I had to name one final priority, it would be this: move decisively from recognizing rights to implementing them in full.
Because the success of disability policies is measured not only by laws passed, funds allocated or services launched. It is measured by every person’s real ability to choose, participate, build relationships, live with dignity and imagine their future.