Thoughts with Vincenzo Falabella, National President of FISH ETS (Italian Federation for the Rights of Persons with Disabilities and Families), Vincenzo Soverino, Commander of the Order of Merit of the Italian Republic, National Board Member and Asti Representative of AISLA (Italian Amyotrophic Lateral Sclerosis Association), and Ubaldo Sagripanti, psychiatrist, writer, screenwriter and playwright.
How truly sustainable is a society if it is unable to support everyone?
The interviews collected – available in full at the links provided in the appendix – feature three professionals who, from different perspectives, engage with the subject of disability: Vincenzo Falabella, National President of FISH ETS (Italian Federation for the Rights of Persons with Disabilities and Families), Vincenzo Soverino, national board member and Asti representative of AISLA (Italian Amyotrophic Lateral Sclerosis Association), and Ubaldo Sagripanti, psychiatrist, writer, screenwriter and playwright (author, among other works, of the play Io vidi Moby Dick).
Three voices and three different experiences; valuable testimonies through which to reflect on the relationship between disability and sustainability, questioning the effective enforceability of rights, access to services, the role of families and communities, and the participation of persons with disabilities in collective life.
As Falabella stresses, the central issue today is not only the formal recognition of rights, but their concrete application in everyday life.
“A right cannot depend on your postal code,” Falabella points out, referring to the profound territorial differences in access to support, services, autonomy and individual life planning.
A gap between principles and reality that also emerges forcefully from Sagripanti’s words:
“We have wonderful laws. Laws that cover practically everything. But when we look at how these laws are implemented, we see that there is a gap.” In the field of psychiatric disability, he observes, shortages of staff, home care and appropriate facilities often end up shifting the burden onto families or private providers.
For Soverino, “disability is not a separate issue, but a cross-cutting lens through which to measure the real sustainability of a society.”
The challenge, therefore, is not simply to ‘accommodate’ the person with a disability within existing services, but to recognize them – and make them feel – as a full citizen: with the possibility of choice, social participation and access to work, education, healthcare, culture and mobility.
Even tools such as the Disability Card (the European Disability Card, designed to facilitate recognition of disability status and access to benefits, services and opportunities in participating countries), Soverino observes, show how decisive practical implementation is: a measure may formally exist and yet remain little known or inconsistently recognized.
Disability as a measure of social sustainability
The issue of disability is closely linked to the Sustainable Development Goals of the 2030 Agenda, and the principle Leave no one behind, “leave no one behind,” represents a fundamental perspective.
Health, education, decent work, reduced inequalities, digital innovation, urban accessibility and social protection are all goals in which disability has a place.
For Falabella, the challenge is to prevent the SDGs from becoming merely reporting tools. To what extent can persons with disabilities actually access employment? To what extent can they choose where and with whom to live? How accessible are healthcare, education and cultural services?
“What is not measured risks becoming invisible.”
Soverino also stresses that inadequate services can impoverish an entire family, forcing it to rely on private care or to reduce caregivers’ working hours, with women most often affected.
Sagripanti likewise considers indicators useful, but argues that we need to broaden what we measure. Alongside the direct costs of disability, there are tangible indirect costs – lost working hours, caregivers’ time, difficulties in getting around – and intangible costs linked to pain, suffering and quality of life. Investing in support, he argues, therefore means considering not only the immediate cost, but also the benefit generated for the individual, the family and the community over a horizon of years rather than just a few months.
From assistance to building an individual life plan
One of the central themes to emerge from the interviews concerns moving beyond an exclusively assistance-based view of disability.
“A person is not the sum of their clinical needs,” Falabella explains. Every individual has physical, relational, emotional, educational, professional and existential needs. The change required is therefore cultural even before it is organizational: moving from a model in which the person must adapt to the services available to one in which services are built around the person.
This is the logic behind the individual, personalized and participatory Life Project: starting from the person’s wishes and goals, while guaranteeing self-determination and the possibility of deciding “where, how and with whom to live.”
Soverino speaks of a shift from a logic of “care and protection” to one of “enablement and inclusion,” based on autonomy, accessibility, education, employment and social participation: “today we can see an evolution toward a bio-psycho-social approach, which looks at overall quality of life rather than only at the pathology.”
From this perspective, Health Budgets and multidimensional assessment can integrate healthcare, social, housing and employment support. The “After Us” framework should also be prepared before an emergency arises, through autonomy, co-housing, supported living and stable support networks.
Sagripanti introduces a complementary perspective: tools such as the ICF make it possible to observe capacities for self-management, self-care, relationships and productive activity, and to calibrate support accordingly. Even apparently limited interventions – an educator for a few hours, ongoing social support for the family – can produce tangible improvements and reduce a burden that today often falls almost entirely on caregivers.
The family, in fact, cannot be regarded as a substitute for the responsibilities of the public system. It must be supported and enabled to continue having a life of its own.
Falabella sums it up this way: “the family must be supported, not used as a substitute for the State.”
The community as a space for inclusion
Social sustainability also depends on the ability of communities to become genuinely inclusive places.
Local areas, associations, volunteering and citizens can create relationships and opportunities, but they cannot replace rights that must be guaranteed by institutions. “Subsidiarity does not mean the withdrawal of the State,” Falabella reminds us. The necessary shift is “from a community that assists to a community that includes.”
This also means recognizing persons with disabilities as active citizens and protagonists of collective life, not merely as recipients of assistance.
In this sense, Soverino speaks of a genuine “community welfare” model: neighborhood networks, volunteering, the Third Sector, and sports and cultural associations can identify isolation, build social connections and make the spaces of everyday life accessible, provided that this does not become an excuse for public disengagement.
From this perspective, co-housing and supported living can also foster autonomy and inclusion.
For Sagripanti, the issue is also educational. In small towns, proximity may still naturally encourage support networks; in large cities, by contrast, “we do not even know our neighbor’s name.” Hence the need for continuous education in relationships and difference: not an occasional initiative, but an integral part of civic education, starting at school.
New narratives to change the way we look at disability
Transformation also depends on the way we talk about disability.
For too long, the narrative has been divided between two extremes: on the one hand, fragility and the need for assistance; on the other, the “extraordinary” person expected to overcome every limit. “Persons with disabilities should not be portrayed as symbols. They should be portrayed as people,” Falabella says.
Stories, he adds, can also make visible needs and critical issues that statistics fail to capture.
Soverino also attributes a concrete role to storytelling: recounting experiences, needs and life journeys makes it possible to humanize services, challenge stereotypes and turn awareness into planning and design.
Sagripanti even emphasizes its therapeutic potential. During Covid, in a psychiatric community, he experimented with an approach based on participants telling one another their stories: people forced into even greater isolation did not deteriorate, but instead showed improvement as measured through clinical tools. “Worlds open up,” he summarizes. Storytelling thus becomes not only communication, but also knowledge, relationship and the possibility of change.
Theatre too, he observes, can have a particular power: unlike the screen, in vivo performance gives the story “flesh, blood, smell,” placing actors and audience within the same unity of time and space and making the experience of the other less abstract.
The future challenge: making rights genuinely enforceable
The main challenge for the future is to turn recognized rights into rights that can actually be exercised.
For Falabella, it is necessary to move definitively beyond policies designed “for” persons with disabilities without directly involving them: the principle “nothing about us without us” must become a concrete method for designing and evaluating policies.
Disability must also be considered across the board in the design of education, employment, healthcare, mobility, housing, digital services, culture and sport. Soverino also highlights digital accessibility and points to ALS as a telling example of how continuity of care, caregiver support, access to assistive devices and self-determination still depend far too much on the area in which a person lives.
But the deepest transformation remains cultural, and Sagripanti sums it up in a particularly effective phrase: we need a “culture of disability that should not be a ‘culture of disability,’ but simply ‘culture.’”
Oedipus, Leopardi, Toulouse-Lautrec, Stephen Hawking: disability is not a secondary detail of their biographies, he observes, but one of the experiences through which they looked at the world and showed others something they had not seen before.
The final metaphor is Leopardi’s hedge in L’Infinito: faced with a magnificent landscape, we often forget that the poet was not looking at the landscape, but precisely at what prevented him from seeing it. The hedge.
“Learning to read what lies before your eyes and, from there, understanding how one might reach the event horizon. Perhaps through disability as well.”
LINKS TO INTERVIEWS
Interview with V. Falabella: Interview with Vincenzo Falabella – MedicinaNarrativa.eu
Interview with U. Sagripanti: Interview with Vincenzo Soverino – MedicinaNarrativa.eu
Interview with V. Soverino: Interview with Ubaldo Sagripanti – MedicinaNarrativa.eu