“Everyone has distanced themselves!” “We’ve been left alone, … we hardly ever see even our relatives!” How often do we hear these phrases from parents of a child with a disability. It’s true: suffering divides us from others, it distances us in an almost natural way. The more affected we are, the more we tend to curl up, to tighten into ourselves, to close off and shut doors and windows, convinced that solitude is what we need to better bear a weight that crushes or overwhelms.
I myself know, from experience, that relatives, friends, siblings seem to flee from that burden of pain, which becomes even heavier precisely because of that impression of loneliness and abandonment.
Impression or reality? Is it us who distance ourselves or is it them who distance themselves? Is it us who keep our child at a distance because we’re afraid, because it seems only we can understand him, because we don’t want to bother others, because… because…
Is it them who are afraid, who feel uncomfortable, who don’t know what to do, who… who… And once this void is created, why blame others?
Isn’t it better to recognize with simplicity and objectivity that this void that hurts us so much is a serious and heavy consequence but, I dare say, a normal condition of any pain?
One is always alone when it comes to “accepting” or “welcoming” an evil that harshly knocks at our door. But in the case of a child with a disability, don’t we often end up distancing him from others whom we actually want close, involved, supportive? The process of marginalization or socialization seems to me to begin precisely with how parents face the event. And while it’s normal to be stunned, petrified, and alone at first, this must be overcome with courage and determination.
Others will come forward only if we first take the right steps to keep the door of our home and our heart open. It’s not an easy thing, especially at the beginning, but, as the articles in this issue tell us, it’s just as easy to start opening the door to realize that grandparents, uncles, aunts, siblings, friends are maybe there waiting for our signal to come forward.
Suffering alone serves no one, it’s a sterile attitude. The “becoming neighbor,” of which so much is spoken, requires that on both sides there is a willingness to communicate, to carry together what seems an unbearable weight and which can, precisely because it’s shared, transform into at least a lighter burden.
Isn’t this perhaps the most important lesson that the Light of Bethlehem proposes to us every year?
by Mariangela Bertolini, 1986
