Article by Roberto Calderone, holder of a Master’s degree in History and Forms of Visual Arts, Performing Arts, and New Media.
Member of the ISTUD team.
There are children who grow up along paths profoundly different from those we are accustomed to considering ‘normal’. Children with very severe cognitive or neurodevelopmental disabilities, sometimes associated with autism, who may experience profound difficulties in communication, relationships, autonomy and understanding the world around them.
Some will never speak, or will speak very little; some will require constant assistance. Some may experience crises, self-injurious behaviours or reactions that appear incomprehensible in response to sounds, environments, changes and stimuli that others barely notice.
Around them, meanwhile, the world carries on.
Other children learn to speak, play together, argue, make friends and absorb, almost without realizing it, the rules of social life. Then they become adolescents, and eventually adults.
And so the impression may arise that some of these children live in a kind of parallel world.
Not a world that is less real, nor a world that is less worthy. Simply a world that does not entirely coincide with ours, while still being part of the same system.
And it is precisely here that the word ‘inclusion’, so often used with a certain ease, becomes much more complex.
What does it really mean to include someone?
Does it mean teaching them to behave enough like us to be able to enter our world, or does it also mean learning, ourselves, to recognize theirs?
Perhaps the deepest form of inclusion begins precisely when we stop expecting the person who is different to always be the one crossing the bridge; sometimes, we need to cross at least part of it ourselves – especially when that difference poses no threat.
Compared with a few years ago, something has changed in our society. Probably still not enough, but the direction is reassuring.
For generations, psychological and cognitive difference was often confined within brutal labels. There was “the madman”, “the idiot”, the “weird one” to be avoided, mocked or simply hidden away.
Today, a child may grow up alongside a classmate who communicates differently, who needs a support teacher, who follows a different path and who sometimes reacts in ways that are difficult to understand. This does not mean that prejudice has disappeared, but that, at least in part, we have begun to build a new way of engaging with difference and vulnerability.
Vulnerability: this word, too, deserves attention. Vulnerability is not an insult, because there are conditions that objectively make a person more vulnerable, more dependent on others, more exposed to isolation, suffering and misunderstanding.
To deny this does not mean respecting that person; it means refusing to see what is in front of us.
At the same time, vulnerability does not determine a person’s worth, and this may be one of the most important lessons a child can learn from growing up alongside a classmate who is different: understanding that someone may need far more help than they do while possessing exactly the same dignity.
We are not all the same, and we never have been: we are equal in rights and dignity precisely because we are different in our circumstances, abilities and possibilities.
Teaching people to understand vulnerability means teaching something that, sooner or later, may concern us all, because vulnerability, when it is not present from birth, still has a habit of appearing over the course of a lifetime, and any one of us may eventually find ourselves in a position of need.
Any discussion of severe cognitive disability, however, risks becoming hollow if families are forgotten.
It is easy to fall into simplistic arguments when one has never had to care for someone twenty-four hours a day; when one has never known sleepless nights, crises, the fear that one’s child may hurt themselves. The difficulty of understanding where they are in pain.
The need to organize every day around their needs. Giving up work. Isolation, therapies, medical appointments, bureaucracy.
And above all, the question that accompanies many parents throughout their lives: what will happen to my child when I am no longer here?
Love does not erase exhaustion, and exhaustion does not erase love.
Parents can love their child deeply and, at the same time, wonder why this had to happen to them.
They can be tired, become angry, wish – even for only a moment – for a different life.
Doubt is human: even in the Christian narrative, Christ on the cross asks God why He has forsaken him. One does not need to be a believer to understand the power of that sentence, spoken by the one who, more than anyone, should never have had reason to doubt.
The experience of pain does not necessarily erase faith, love or meaning.
Often, it puts them to the test.
And it is precisely through suffering that a deeper form of collective awareness can emerge.
When another person’s suffering ceases to be merely something from which we feel fortunate to be spared, and instead becomes part of the world we inhabit together, the way we look at vulnerability also changes. The other person is no longer perceived as an unfortunate abnormality, but as an inhabitant of a “World Beside”.
Not someone distant, who has nothing to do with us and does not touch our lives, but someone who lives close to us.
And in our relationship with this “World Beside”, a further reflection can emerge: it is worth observing that the modern Western approach to interpreting disability is not the only possible one.
In some cultures – for example, among Indigenous peoples of North America, particularly within Cree and Blackfoot traditions – physical and cognitive difference has also been interpreted through spiritual and communal categories, in some cases attributing to children with disabilities a particular closeness to the spiritual dimension. In certain traditions, disability is even described as a “gift”.
What one society primarily interprets as a lack, another may understand through the value of relationships, belonging to the community or the divine dimension.
Caring for someone from whom we do not necessarily stand to gain anything forces us to ask ourselves what gives value to a relationship and, at a deeper level, what gives value to a person.
There is therefore no need to refer to a particular Creed or God in order to recognize that certain experiences seem to call upon something that goes beyond mere material utility, belonging precisely to the “spiritual” dimension. A relationship with a profoundly vulnerable person may be one of these experiences. It may force us to measure the value of another person independently of their productivity, their autonomy, their ability to give us something in return or even their ability to communicate through the codes we understand.
This form of ‘spiritual’ evolution consists precisely in this: progressively expanding the boundaries of what we recognize as worthy of our attention.
Seen from this perspective, even the image used by some parents when they speak of their children as “angels” or “little Jesuses” takes on a more comprehensible meaning.
Not because suffering should be sanctified, or because a child should have to suffer in order for others to become better people, but because we can observe what happens to us when we truly come into contact with these individuals.
Their presence can profoundly change the way we inhabit the world. It can lead us to reconsider not only what gives value to a person, but also the value we assign to ‘normality’.
By definition, ‘normal’ means “conforming to the norm” and refers to what occurs most frequently. In everyday language, however, we constantly make a largely unconscious leap: from what is more common to what is ‘better’, while anything that deviates from it risks being regarded as a defect.
In a fast-paced world in which we often equate success and happiness with productivity and the ability to appear ‘perfect’, disability can seem like an obstacle to self-fulfilment.
These children will grow up, and some will continue throughout their lives to exist according to coordinates that we will understand only in part. And yet, in their gaze, in their breath, in their silence, in their tears, in their joy and in the beating of their hearts…
we encounter an otherness that, the closer we come to it, looks increasingly like a mirror.