I was six years old when Anna Maria was born. The joy of having a sister to play with and grow up alongside soon gave way to the harsh awareness that her illness would not be temporary—it would shape her entire life.
Her struggles with development and communication quickly began to reshape our family's world.
At first, I simply understood that this sweet little sister, more fragile than other children, needed more care and attention. As I grew older, I gradually realized that much more could have been done to help her develop some independence, but the times were not right for children like her to receive proper rehabilitation support.
I can still see my mother moving from doctor to doctor, hoping for some breakthrough. It soon became clear that this child, who seemed to have so much potential, would have no access to adequate rehabilitation services.
While my mother slowly came to accept that Anna Maria would never recover, I felt my sense of responsibility toward her growing stronger.
At first it was simply keeping her safe from danger; then, as her psychological abilities developed and we began to communicate, however simply, the question of her future became bound up with my own.
The love I felt for her—increasingly tempered by responsibility—made it impossible to imagine breaking this bond. Even if her handicap meant our connection was elementary in nature, it kept deepening, becoming an exchange of values that grew more important with time.
...and I acquired a vision of life that was broader and deeper than that of my peers who faced no such challenge
...and I acquired a vision of life that was broader and deeper than that of my peers who faced no such challengeI saw that by giving her my attention, by thinking carefully about how to communicate better with her, my own character was growing and becoming richer, and I acquired a vision of life that was broader and deeper than that of my peers who faced no such challenge.
I came to understand that people who cannot live independently, whether physically or psychologically, carry something almost providential. Their very existence forces us out of our selfishness and back toward the human values of solidarity and innocence that might otherwise vanish in the relentless pursuit of a hollow self-interest.
Over the years, experience has only strengthened this conviction. Now, after my parents' death, my sense of responsibility toward Anna Maria has deepened further; my life is so thoroughly woven together with hers, and her trust in me is so complete—I am her last anchor—that my responsibility has transformed into something like an expanded form of motherhood. It extends now to all those who, like her, suffer and live a different kind of life.
This widening sense of responsibility led me, over the years, to work actively in organizations that bring together parents and family members of people with disabilities.
I must say that now, with my sister grown and orphaned, the situation regarding support services and rehabilitation structures has not improved much—especially here in Rome.
What is sorely missing are residential facilities: group homes and family-style houses in every neighborhood that would allow orphaned people with disabilities to stay in their own communities, keep their bonds with siblings and their surroundings, without placing an unbearable burden on their families.
To allow her to live in her own neighborhood, I have taken on what I still consider a temporary arrangement—since our parents died seven years ago. I have kept her in her home and organized her care, which is partly public (she attends a day center) but mostly private, at tremendous financial cost and an even greater cost in my own time and energy. I have my own family to care for, and my sister—a nun—has her own duties to her community as well.
- Paola Mazzocchi, 1990