Can you describe the goals of these proposals and what they might accomplish?
The early-retirement law should recognize the right of a family member who shoulders a double burden—caring for a relative with severe disability while maintaining another job—to have that taxing work acknowledged in law. It's a legislative step, but one that addresses only a small portion of families engaged in care work.
What we're pushing for now, regarding family caregivers more broadly, is recognition of the commitment required of a family member to sustain the survival and quality of life of a relative with severe disability. Care work isn't limited to hands-on assistance. It encompasses the full range of actions needed to maintain a dignified existence for someone with disability: navigating institutions, ensuring continuity of medical and rehabilitative care, supporting communication, fostering relationships—the whole spectrum.
"Safeguard the emotional bonds of the person with disability in order to achieve the crucial goal of inclusion" (from a post on the blog "The Invisible Care"): what do you mean by "inclusion"?
To include someone is the opposite of casting them out. Severe disability carries an inherent risk of exclusion; rejection and relational difficulty are its shadow. The temptation to manage disability comprehensively—to isolate the person from their surroundings and place them in an organized, functional setting—actually destroys the uniqueness and individuality that make us human. And we become fully human, above all, through spontaneous emotional bonds.
What if those emotional bonds are lost?
Can a human being truly survive for long without any affective bond? Every person—and especially someone with the generalized fragility that severe disability brings—finds meaning in existence through the emotional connections they establish and sustain. Abroad, family caregivers aren't recognized solely as blood relatives. In Spain and England, for example, neighbors and friends can hold this role, precisely because it underscores the voluntary relationship that lies at the heart of care.
Might a family member feel forced to leave work that is otherwise fulfilling and rewarding?
This is crucial. A severe disability certification establishes a need for comprehensive, continuous care: 24 hours a day, 365 days a year. Unlike every other European state, Italy recognizes this need only when the family network no longer exists, has fractured, or has abandoned the person with disability. The only legally guaranteed response from the Italian state is institutionalization. Despite legislative proclamations and the nominal closure of institutions, the care and "integration" of people with disability falls entirely on families—burdened with a level of responsibility unknown in any other European country. Consider a few egregious examples: family cost-sharing for services that cover a fraction of actual need, or the recent court ruling that ties the pittance paid to those unable to work to the spouse's income. But the worst aberration in Italian disability law isn't even these. On one hand, families bear almost all the responsibility and the weight of ensuring quality of life for a citizen with disability. On the other, the Italian state acts as if families don't exist. They have no rights. So a relative's disability becomes a "fault" the family must atone for in total invisibility. This is where the demand for legal recognition of the family caregiver originates—a demand for those inalienable human rights to health, rest, relational life, and work that are guaranteed to everyone except family caregivers. Right now, leaving a job is the only way a family caregiver can keep their relative alive while avoiding institutionalization.
Won't families end up alone again in the care system for people with severe disability?
As I've explained, families are already alone in care responsibilities. The shortage of community services is simply the consequence of a legal system that makes families, not the state, responsible for citizens with disability. Territorial institutions can deny support based on budget constraints. Recognizing the inalienable right of family caregivers to health requires guaranteeing health insurance for care work—including adequate compensation if the caregiver becomes ill, so they can immediately hire a substitute. The family caregiver exists and is a person with rights. And it's only by respecting those rights that we can truly respect the rights of the person with disability.
Chiara Buonanno and Maria Simona Bellini, 2013
from "La Cura Invisibile"