Indi Gregory (Photo: Facebook)

Innocent pain and the presumption of an omnipotent state

Little Indi Gregory died on Sunday night. Her story puts everyone in front of the first evidence in our life: “we do not make ourselves.”The contribution of Giuliana Ruggieri, member of the National Bioethics Committee.
Giuliana Ruggieri

In recent years, every time I have come across the dramatic stories such as that of Indi, Charlie Gard, Alfie Evans, Archie Battersbee, and who knows how many others with stories we do not know about, I am reminded of a Communion and Liberation flyer from 2008: 'The Eluana case, charity or violence?': “What kind of society calls life ‘hell’ and death a ‘liberation’? Where can our reason gone crazy originate from, a reason that can turn upside down good and evil and, so, to give things their real name? [...] In the long history of medicine the most fruitful progress occurred exactly with the beginning of assistance to the “incurable” in the Christian age. They used to be excluded from the community of “healthy” people. They used to be left dying outside the city walls or eliminated. Whoever may have taken care of them would have put their own life to risk. This is why those who began to take care of incurable people did so for a reason that was more powerful than life itself. It was a passion for the destiny of the other man, for its infinite value because it was the image of God creator.”

Or as Elio Sgreccia writes: “Incurability, can never be confused with intractability: for example, a person affected by an illness which is, considering today’s state and advancement of medicine, incurable, ironically or in more scientific terms paradoxically, the subject who has more than any other one, the right to ask and even demand and get help, assistance and treatment for such illness, and be provided with a proper and continuous attention and dedication; it is a fundamental axis in a therapy’s ethics, which has as main recipients, precisely those people who are in a state of vulnerability, and/or of members of a minority, and/or of a greater weakness [...]. The human face of medicine is shown precisely in the clinical practice of ‘taking care of somebody’ of the suffering person’s life and of a patient. The right to become continuously the object, or even better to become the subject of attention and caring by relatives and other people, is based on the dignity of a human person or a human being, which even if the subject is a neonate, an ill and suffering person, never ceases to possess or have it.” (Elio Sgreccia, The lesson of little Charlie Gard, in Medicina e Morale, 3/2017, pp. 285-289).

Is it therapeutic obstinacy? In reality, we do not fully know little Indi's clinical condition, she did not have a tracheostomy, she had breathing and feeding aids, she seemed responsive by squeezing the hands with those around her. Bioethical judgement “must start from knowledge of the child's exact clinical situation, the treatment undertaken, the prognosis, and is made at the patient's bedside. Therapeutic obstinacy occurs when disproportionate treatment is given to an imminent and inevitable death. But Indi is not a terminal patient, not even the British doctors have defined her as such, she is a child with an incurable disease” (Matilde Leonardi, 'Why is freedom of choice denied to parents?', Avvenire 10 November 2023).

Many people – philosophers, journalists, bioethicists ¬– from the newspapers, from the radio, from the heights of their professional experience, therefore far from the 'patient’s bed, base their judgement on therapeutic obstinacy in reality on the 'quality of life', 'lives not worth living', a sort of 'tanatological obstinacy'... silencing any glimmer of hope for the parents.

Moreover, as that flyer goes on to say, these stories confront us with “the first evidence that emerges in our life: we do not make ourselves. We are made, we are wanted by Another. We are saved from out nothingness by Someone who loves us and has told us: “Even the hair on your head is counted.” To reject this evidence is, sooner or later, to reject reality. Even when this reality has the face of the people we love.

We are not the masters of our lives, of our children, or of any of these little ones.

This is why – once again – Indi's story confronts us with the failure of the logic of self-determination, which actually becomes 'heterodetermination': the will of the parents is replaced by a secular state, which in the form of a judgement, orients itself as if it were a “moralizer”, arrogating the power to decide on death and life. Moreover, self-determination seems to apply only to death... but never to life. Thus, the parents of these children are not allowed 'freedom of treatment', the ability to have another opinion, a second opinion, not even by a paediatric hospital of excellence.

Read also - Indi Gregory and the courage of hope

Therefore, coming to recognize Who gives us the presence of these creatures "is not something ‘spiritual’ just added on for those who have faith," the leaflet continued: It is a need for all those who, having been given a reason, seek for a meaning. Failing to recognize this, makes it impossible to embrace them and live the sacrifice to stay on their side; in fact it provides the possibility to kill them, and to mistake this gesture for love. Christianity originates exactly from a passion for man. God became man to meet the need of all men, believers and non-believers, to understand the meaning of life and death. Christ had pity on our nothingness, and gave His own life to affirm the infinite value of each of us, in whatever condition.”

But miracles do happen and thanks to the testimony of a volunteer who visited Indi every day and the lawyers who defended and supported them, the little girl received Baptism. The Eternal enters mysteriously into innocent pain and the hell of human limitations.


*Member of the National Bioethics Committee and President of the Bioethics Observatory of Siena