The challenge of childhood disability in the COVID-19 emergency


Dear director, I know that I will go off topic with this letter of mine, but basically they compared this emergency to a war and what I am about to tell you is one of the effects of this "conflict", however an effect capable of influencing all three domains of conflict, physical, cognitive and above all moral.

I want to tell about the disability and in particular the disability of children, with all the relative implications it has on a family and I want to tell this as a father, as a husband and why not! Also as a Soldier.

Normally the menage family in the presence of disabled people, especially if it is children, is extremely complex, with a pandemic it all reaches the limit of sustainability, however, aware of what intensive care and long-term care in hospital is, as soon as the public authorities have announced the health emergency, with my wife we ​​decided to shut ourselves in the house, eliminating social contacts and taking all necessary precautions so that we were not involved in the infection.

After the first days of bewilderment, however, we understood that the challenge of the moment, yet another of our lives, would have been to structure, in a domestic environment, the routine necessary for our children to lose as little as possible in terms of skills, competences, sociability, but above all health.

We soon found ourselves filling the role of teachers, psychotherapists, pediatricians, playmates, without obviously derogating from our primary role as parents and in this condition it was immediately clear that the workload would be immense, having to simultaneously commit the day of three children, fulfilling the needs of disability for two of them, without neglecting the care in the context of primary needs: food, but without being able to take the children to the supermarket, since there was and there is no one to leave them; a clean house without being able to detach from them during cleaning activities; parental serenity, undermined by the constant fear that repeated absences from work could generate, sooner or later, problems with which it would be necessary to reckon with in terms of professional relationships, balances in the working environment, even opportunities.

Those just listed are obviously some of the circumstances that led us to ask for support, or perhaps more trivially for help, however we are a family with disabled children and we know what bureaucracy is with its meanness, we are aware that to see recognized a right it could take, as has already happened to us, years of lawsuits, or that you could find yourself in the hospital, three days before an important surgery, with an administrative employee who says to you: "Either you make the transfer immediately or you are out . " And other atrocities of this kind.

Aware of these realities, we decided to raise the bar of our requests, believing, naively, that the ruling class made up of politicians, intellectuals and journalists could, listen to us, solve solutions, support us.

Contrary to expectations, over the weeks we have collected, for the most part lacking responses, some declaration of impotence and very little solidarity, moreover exclusively in terms of listening.

This situation initially offended us, since we became even more aware of the fact that disabled people and in particular children with disabilities generate the most total indifference, not only in the so-called everyday life, but also and above all during an emergency such as what all of us are experiencing in these months.

When you hear about the frailty of disabled people, the common feeling normally focuses on architectural barriers or economic difficulties, in reality these are, in order of importance, perhaps the least of the problems, children with handicap and consequently their families are regularly marginalized, that is, placed at the limits of society, obviously I do not blame those who have this approach towards us, disability is frightening and almost for a sense of superstition we tend to keep it away, the big trouble of this period is that social isolation, combined with that imposed by law, has meant that even those who were in charge of supporting subjects in difficulty found themselves with their hands tied or sometimes preferred to turn away with the excuse of deficient guidelines, of stringent public health rules and of other obstacles, real or presumed, which would have been necessary to overcome without hesitation.

The total block seems to be behind us now, but nothing has changed in terms of indifference, lack of confrontation and absence in solving problems and nobody dreams of offering even a time horizon that is able to provide our children and us families a hope.

Risking to appear suggestive, I would like to underline how, although our most educated and "enlightened" ruling class loves to fill its empty rhetoric with concepts such as freedom, rights and happiness, then nothing is actually put into action for this to happen, although there is to be certain that these are the founding values ​​of our world, values ​​that can make us face any tragedy, any pandemic and above all values ​​to which everyone, regardless of their state of health, should have the opportunity to strive to achieve happiness, understood as the ultimate goal of the social community, that is, allowing everyone, within the limits of their human abilities, to realize the good, understood as - living well - that is, being happy (Aristotle).

Whenever I go into these reflections someone pretends pragmatically in a pragmatic way what we families in need need, well, we need an organic, consenting, orderly, legally protected social universe, in a nutshell, as I said, happy , so that even the most fragile subjects and their families can have a peaceful, harmonious and balanced life, a wish that, moreover, should be valid for everyone, precisely so that we do not just survive miserably, but live in dignity, like each be smart deserves.

I understand that I may have entered too deeply, but deep is the disappointment, the distrust, the sadness, so much that it has now turned into consternation, since we realized that, especially in this period, we have tried to stimulate a movement of conscience towards someone that this consciousness has proven not to have it.

We will continue to fight for the health, dignity and happiness of our children, with the sad and proud awareness of having to rely exclusively on our own strength, without abandoning the hope that somewhere in this wretched nation there will be still some good people.

Andrea Pastore