A Possible Epistemology of the Pietralata Case
Article by Maria Giulia Marini, Health and Wellbeing Area, Scientific Director, Epidemiologist and Counselor, President of EUNAMES, the European Narrative Medicine Society, and Editor-in-Chief of the journal “Chronicles of Narrative Medicine“.
September 1: in Pietralata, a neighbourhood on the outskirts of Rome, part of Rome’s IV Municipality, two parents and their daughter with a severe disability were found dead in their home. According to the investigators’ hypothesis, the parents killed their daughter and then took their own lives. In the letters left by the couple, one message emerges: on their own, they could no longer cope. The family was known to the social and healthcare services and the child was receiving care, but over the years the parents had sought other therapeutic possibilities, travelling several times to Mexico and spending, according to press reports, approximately €300,000 on a treatment authorised by neither the FDA nor the EMA. The mother had also left her job to take care of her daughter.
I would like to approach this story with great discretion and sensitivity, as such a tragedy requires. It is impossible to enter the minds of these parents, and it is not my intention to construct a retrospective psychological diagnosis. We can, however, attempt an epistemology of this narrative: to search for some keys through which to read what happened, without claiming that any single one of them constitutes the truth.
The first one I see is the ghost of restitution, described by the Canadian sociologist Arthur Frank in this way: yesterday I was well and everything was proceeding normally; today I am in a condition of great suffering; I undergo every possible treatment in order to return to how I was before. Let us adapt the word restitution to the Pietralata case: if there can be no “healthy” child to return to because the child is born with a disability, there is instead the son or daughter imagined during pregnancy, the future that had already begun in the parents’ minds; and then a different child is born. Restitution can then become the desire to restore health to a child who, unfortunately, given current scientific knowledge, cannot have the same abilities as those who are defined as being “within the norm”. And this desire for normality, unfortunately unrealistic, can turn into an obsession, especially when people are left alone with their own thoughts, without psychological support or counselling services, and without their “neighbour”, the people around them.
This obsession becomes a possession. If I am possessed by the restitution mindset, everything that does not lead to healing is completely insufficient. The best available care, rehabilitation, improvements in abilities and quality of life are not enough. Day and night, the ghost of another possibility remains: perhaps, somewhere, someone will be able to turn my daughter into the child I had imagined. It is precisely within this vulnerability that treatments presented with extraordinary expectations, or perceived as miraculous, can find a place. We do not know what promises were made to the family, but approximately €300,000 spent in the search for a therapeutic possibility is an enormous sum, particularly when spent on the basis of almost non-existent scientific evidence.
And therefore evidence-based medicine must sometimes say: we can care, rehabilitate, accompany, improve, but we cannot promise restitution. We must therefore move from the concept of curing to that of caring for the entire family unit. If we consider health as an equilibrium among the physical, psychological, social and existential dimensions, Pietralata was possessed by the physical dimension; in the other dimensions, there was no space left for health to breathe.
Moreover, there is one detail reported in the news: the mother apparently could not have had other children. This element makes the possible distance between the only child imagined and the real child even more evident. Perhaps restitution can become a coercive thought: if my daughter cannot become the child I had hoped for, what future remains? It is precisely here that others should enter the story—not to take hope away or impose resignation, but to prevent a single narrative, that of normality at all costs, from occupying the entire space of what is possible.
There are also other stories of disability: some parents of children with disabilities, including very severe disabilities, have succeeded over time in transforming restitution into what Frank calls quest narratives. Not because they have necessarily considered disability a gift, nor because they are better or stronger people. I also know a family who adopted a child with a disability because he had been left alone in an orphanage and nobody wanted him. I asked myself many questions: there are also people who, through faith, deliberately choose to enter such situations. In this case, the spiritual/existential dimension is remarkable. Every day for this family is a day of quest, of searching. Faith helps, just as the surrounding community helps, together with the awareness that this disability is real.
The transition from restitution to quest cannot happen alone. It is made possible by competent services, professionals capable of listening, psychological support, other families, associations, schools, friends, but above all the community. The quest mindset is also the result of a community capable of helping a family transform its own story, maintaining the best possible care while at the same time building a life that can be lived even when the hoped-for cure does not arrive.
In this story, I see an overwhelming loneliness and, in the final moment, a symbiotic dimension between the two spouses: a symbiosis leading to massacre—the dog was also killed—in the final act, in the letters written together, in the plan to die together. A shared suicidal desire: it is no longer I who decide about my own life; together, we have only one way out: death.
It is precisely the perception of only one way out that makes the word self-determination problematic when applied to the parents. An adult can exercise self-determination even in relation to their own death, but conscious self-determination presupposes a mental space in which recognisable alternatives exist and in which it is still possible to choose among them. Here, the boundary between self-determination and compulsion is extremely thin, because the disillusionment of normality pursued like a dream is an open trauma: the wound is too raw. It is no longer possible to choose among different possibilities; instead, one becomes progressively convinced that only one possibility exists. And one becomes possessed by another path: death.
It is here that I introduce Sustainability, not as a bureaucratic list of United Nations goals, but in its most concrete meaning: making a life possible over time. We can call this a non-existent Welfare State, that commitment to caring “from the cradle to the grave” as it was originally conceived. In this family, the reality that broke into their lives became unsustainable: the work of caring, the economic burden, the sacrifice of a professional life, the search for a cure, the symbiotic isolation. When we reach the point of thinking that the only possible future is to have no future at all, we are facing the most radical failure of sustainability.
Let us now look at the Sustainable Development Goals (SDGs). Zero Poverty: disability should not expose a family to impoverishment, still less through the pursuit of a cure that is currently impossible. It concerns SDG 3 – Good Health and Well-being: it is not enough to ensure care for the person with a disability; we must also provide long-term care for those who take care of that person every day—the caregiver, whether female or male.
It also concerns SDG 5 – Gender Equality. It is the mother who leaves her job to devote herself to caring for her daughter. But there is perhaps another, deeper level: the female body continues to be culturally invested with the expectation of giving birth to a healthy child; this cultural ghost exists. Gender equity is betrayed when women are simultaneously assigned the symbolic burden of generation and the concrete burden of care, as though they should be responsible both for the child who is born and for their ability to sustain that child’s care indefinitely.
It concerns SDG 8 – Decent Work and Economic Growth, because becoming a caregiver should not necessarily mean losing one’s job, income and professional identity. It concerns SDG 10 – Reduced Inequalities, because disability should not progressively restrict the possibilities available to the person and their family.
It deeply concerns SDG 11 – Sustainable Cities and Communities. Pietralata is a neighbourhood on the outskirts of Rome, part of Rome’s IV Municipality. A sustainable city is not only a city that is green, accessible and well connected. It is a city in which a vulnerable family does not become invisible; a community capable of maintaining relationships, providing respite and reaching those who progressively withdraw. Some questions arise regarding this family microcosm: what network of relationships existed? How many friends had drifted away? How many self-help groups were available for parents of children with disabilities? And how were those who knew these people able to communicate and interact with them?
Finally, it concerns SDG 16 – Peace, Justice and Strong Institutions. A strong institution is not merely one that can demonstrate that it has correctly provided a service. It is one capable of following the evolution of people’s needs and noticing when a family that has formally been taken into care is becoming existentially alone. And it concerns SDG 17 – Partnerships for the Goals, because healthcare, social services, schools, associations, the third sector and the community cannot simply be a collection of separate interventions. A network exists only when someone continues to hold its nodes together.
I therefore see a chain of Unsustainability: the goals mentioned above have failed completely, far from the utopia of the United Nations 2030 Agenda.
These lines and words of mine are intended as nuances, thoughts, not judgements. In this tragic story, we must simply suspend judgement and give ourselves time to imagine the situation and reflect, so that people carrying such heavy burdens may receive help, suggestions, ideas and concrete actions that can make the weight of the boulder lighter, offering possible ways out other than death as a shared destiny.
