The family, the caregiver, and collective responsibility in a society that aspires to be truly inclusive
Abstract: Speaking about disability from the perspective of social ethics means questioning not only the adequacy of laws and services, but also the model of civilization a community chooses to build. Situated at the intersection of lived experience and public reflection, this contribution identifies the family as the primary laboratory of inclusion and the family caregiver as a decisive yet still insufficiently recognized figure within contemporary welfare systems. Caring for a person with profound disability reveals the persistent gap between formally proclaimed rights and concretely guaranteed support, too often shifting onto the private sphere a burden that should be sustained through collective responsibility. From this perspective, the essay proposes an understanding of disability not as a marginal or sectoral issue, but as a test of the democratic quality of a society. This entails the need for a structural rethinking centred on self-determination, work, the removal of cultural barriers, and the recognition of the caregiver as a subject of social justice rather than of mere silent substitution.
Keywords: #disability #familycaregiver #inclusion #selfdetermination #lifeproject #socialjustice #family #accessibility #welfare #KatiusciaGirolametti #ethicasocietas #ethicasocietasjournal #scientificjournal #humanities #socialsciences #ethicasocietasupli
Katiuscia Girolametti is the national president of Rete Italiana Disabili (reteitalianadisabili.altervista.org), an association committed to the inclusion and support of persons with disabilities in the world of work through productive and professionally oriented pathways. The Network also promotes studies and research aimed at designing products for expanded usability, intended for people with temporary and permanent disabilities, in collaboration with specialized centres, and works to foster a new culture of equality in diversity through initiatives directed also at the world of education. Katiuscia Girolametti is also a caregiver mother and a writer.
Speaking about disability in a journal of social ethics today means more than simply pointing out legal delays or administrative failures. It means, first and foremost, asking what kind of society we want to build, and how a political community chooses to measure the quality of its democracy. The condition of people with disabilities, the recognition of their right to self-determination, and the concrete support given to the families who care for them are not niche issues. They are, rather, a real test of the moral and institutional strength of our social pact.
I write from a position shaped both by public responsibility and lived experience. On the one hand, I represent an institution and an associative network; on the other, I live every day with the complexity of care as the mother and caregiver of a boy with autism and tetraplegia, while my other two children grow up beside him and learn, through daily life, that fragility is not a deviation from normality but a structural part of the human condition. For this reason, mine is not an abstract reflection, but a voice rooted in the concrete reality of family life, in that constant balance between organizational strain, emotional exposure and the search for meaning that I have also tried to describe in my books, from No. 5 Is Neither a Perfume nor a Mambo to Normality Is Overrated.
The family as the first space of inclusion
In this context, the family becomes the first and most radical laboratory of inclusion. Living every day with disability teaches that inclusion is not a conference slogan or a language of good intentions, but a practice made up of looks, rhythms, adjustments, sacrifices and recognition. Anyone who grows up in a family marked by disability learns very early that vulnerability is not a flaw in the system, but one of the conditions through which the truth of social life becomes visible. Yet, as valuable as this awareness may be, it cannot rest entirely on the shoulders of families, as if the private sphere were expected to permanently make up for the shortcomings of the public one.
Being the caregiver of a person with a very severe disability means facing, every single day, a structural imbalance: the gap between the real burden of care and the inadequacy of support services. In many cases, what should be an enforceable social right is turned, in practice, into private hardship, individual resilience, and personal and family sacrifice. This is where the most important ethical and political issue emerges: when welfare withdraws or proves insufficient, it does not disappear. It quietly shifts into the homes, bodies and lives of those who provide care.
The caregiver as the invisible infrastructure of welfare
In our country, the figure of the family caregiver still occupies a paradoxical position. Caregivers are one of the material pillars of the support system, and yet they are still too often denied full recognition, adequate protection and structural forms of support. The caregiver is the invisible heart of welfare, but precisely that invisibility leaves them exposed to a form of systemic marginalization. When the caregiver collapses, it is not only the family balance that breaks down; the entire protective framework that the public system has, in effect, taken for granted begins to crack.
For this reason, supporting caregivers is not an act of generosity, nor a secondary reparative measure. It is a question of distributive justice, social equity and institutional rationality. A society that silently builds its balance on the private renunciation of those who care is not simply saving resources. It is shifting the cost of care onto people who are already under intense material, psychological and relational pressure.
Self-determination, work and cultural barriers
If a society wants to call itself truly inclusive, it must rest on at least three fundamental pillars. The first is self-determination. A person with a disability cannot be reduced to a passive recipient of assistance or an object of decisions made by others. What we call a life project must be something that can be built, supported and chosen, not merely endured. There is no dignity without real room to choose where to live, with whom to live, how to take part in the community, and what shape to give one’s own existence. This is where the difference becomes visible between a system centered on the person and one centered on mere management.
The second pillar is work, understood not only as economic activity but as a space of identity, social contribution and recognition. Too often, the system swings between passive forms of assistance and spaces of mere custodial care, incapable of valuing abilities, desires and possibilities. A just society should instead create the conditions in which everyone, according to their own ways and limits, can be recognized as a subject capable of bringing value to the community. In this sense, work is not only employment. It is belonging, dignity and citizenship.
The third pillar is the removal of cultural barriers, which are often the hardest to dismantle. Material barriers are visible; symbolic ones are far more pervasive. They appear in pity, infantilization, and in the heroic rhetoric that turns families into exceptional figures and, precisely by doing so, strips them of the normality of rights. We are not dealing with superheroes, nor with uplifting stories to be celebrated from time to time. We are dealing with citizens asking for secure living conditions, adequate support tools, and full recognition of their legal and social subjectivity.
Collective responsibility as a measure of civilization
Within this framework, responsibility can only be collective. To go on treating the social sphere as a cost to be cut is to fail to understand that every investment in accessibility, services, family support, inclusive schooling, pathways to autonomy and care support is not an unproductive item in the public budget. It is an investment in social cohesion, human capital and democratic quality. A society that excludes part of itself does not only harm those who are excluded. It impoverishes its own moral structure, narrows its horizon of meaning, and gives up part of its own potential.
From this point of view, disability is not an issue that concerns only some families or some services. It concerns the whole political community, because it forces us to decide whether fragility should be borne as a private burden or recognized as a constitutive dimension of social life. And it is precisely on this choice that the democratic maturity of a country is measured.
Conclusion
In this sense, we are standing at a crossroads. On one side is the logic of emergency: fragmented measures, one-off interventions, and the occasional management of suffering. On the other is the possibility of a gentle revolution: a cultural and institutional transformation that puts the person, the relationship of care, the right to happiness, democratic participation and full citizenship back at the center.
That is the choice before us today. And it concerns everyone: not only those who live disability directly, but the whole society that, through this test, decides—consciously or not—what kind of justice it believes in.
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