Why this title? Because it is the subject we want to explore in the pages that follow: through the experiences, conversations, and exchanges that shape each family's life, we come to understand how differently the challenges present themselves—depending on the family's circumstances, their emotional and financial situation, and so much else. But let us be honest: age matters too. A child finds their place in a family in an entirely different way than an adult does, and far more so when that child is handicapped. When a child is profoundly handicapped, the practical realities, the worries, the future itself—all of it takes on a wholly different shape.
But who exactly are we talking about when we say: profoundly handicapped?
We mean all those small children who are completely dependent for their physical care: eating, washing, staying clean, moving from place to place—and who show little or no signs of awareness or communication. These children, already so deeply struck by their condition, often face additional difficulties beyond intellectual disability. Many see and hear poorly, or not at all. Paralysis of varying severity may affect them.
To speak of these children, who require so much care, we have asked their parents to share their stories. On these pages you will find simple testimonies from their daily lives, their suffering and, at times, their joys.
But we do not wish to hold up any of these lives as a model for others to follow. There are no one-size-fits-all solutions, and there should not be. Each family, each person, each season of life is unique, and comparisons help no one—least of all here.
It is admirable when a severely disabled child finds acceptance in his family just as he is. It is equally vital that there exist places of care for severely handicapped children.
Because there are exhausted parents, families at their breaking point, those who cannot go on. To place a child in a home where he will be welcomed well is not abandonment.
But it is beyond question that whether in a residential center or at home, profoundly handicapped children present us with a challenge that goes far beyond the physical demands—though those demands must never be minimized—they pose a question to us: they force us to call into question nearly all the values our society holds dear: success, beauty, wealth, ease, and the rest; they demand that we often live against the current, that we live by other values.
What values, if not those of the Gospel? On these pages, you will read the testimony of friends who, through having lived moments and days alongside profoundly handicapped children, have earned the right to speak.
In the coming issues of "Insieme" this year, 1979, we will examine life with:
- Mildly handicapped children
- Profoundly handicapped adults
- Mildly handicapped adults
- Editorial Team, 1979