I am Daniela's mother. She is seventeen now. She has seizures, severely limited vision, and many other problems, some grave and some less so.
Today Daniela is in her third year of vocational school in a special program for students with disabilities. I know she will never learn a trade that will support her, but the real goal is to give her as much foundation as possible for her future.
Daniela has been partially sighted since birth, with atrophy of her optic nerves—her left eye nearly useless, her right eye at 2/10 vision. A brain injury, microcephaly, left her spastic, with the entire left side of her body prone to involuntary movements.
We lived through some very hard years. And yet I count it a great fortune to have Daniela. She is the one who has taught me what a life full of joy and disappointment really means. She pushed me, drove me to fight for her rights and my own.
At first, I did not see Daniela as handicapped. She was simply a child who needed more attention. For her father, it was harder—perhaps for any man it is much more difficult to accept imperfection in his children. Over time, he and Daniela found common ground. They argue, they love each other, and for him it is no longer a great tragedy to have a daughter with a disability.
Daniela has a sister, Claudia, who is twelve. She accepts the difficulties Daniela sometimes creates with love, sometimes with anger. She is jealous of the time and attention Daniela requires, but over the years we have learned to strike a balance—to give enough to each daughter without shortchanging either one.
I mentioned that I never saw Daniela as handicapped, despite taking her to many doctors throughout her life, in Italy and abroad. I was fortunate to work in an office, which meant I had to schedule my days carefully around home, work, and therapies. That was actually a blessing, because I never had time to pity myself. Not that I didn't cry—I had some very dark moments. Dark moments came as Daniela grew and I realized that to others, she was not a normal child. When she was two, she had surgery on her left eye, which was very crossed and would have made her appearance seem strange to people's eyes. Then surgery on her tonsils, each time followed by terrible trauma and shock at being separated from her mother.
I am a native German speaker, so my husband and I decided Daniela would attend German schools. (Although in those years my husband kept himself rather distant from Daniela's existence, and I had to decide and do everything myself.)
In that time in South Tyrol, handicapped children were placed in special classrooms—something I found absolutely unthinkable.
Two years of preschool with major difficulties, then five years of elementary school: a nightmare. All because I refused to accept segregation in facilities that I believed could not foster real learning or growth for my daughter.
For years I fought with everything I had. I quarreled with principals, teachers, parents, psychologists—so many people who kept trying to convince me that Daniela was not capable of a "normal" life.
I cannot know the hell my daughter endured. I can only imagine. At eight, she began having seizures—petit mal, they called them. Sudden falls, repeated trips to the emergency room to close the cuts and gashes from her falls. Again, often I met with incomprehension, because my absolute commitment was to treat her as normal.
I never let Daniela be treated like a poor sick child. I never allowed myself to be dominated by doctors, therapists, psychologists. Even though it was difficult—I lacked the scientific training to match their language—I used the firmness and certainty of a mother to convince many people over these years that parents are the first ones responsible for planning their children's futures.
We do not yet live in paradise. The road will still be hard, even in the future.
As you can see, I did not keep this precious bag of experience to myself alone.We do not yet live in paradise. The road will still be hard, even in the future.
In Daniela's early years, I became deeply involved with AIAS, where I found so many parents who were uncertain like me, frightened, often at their wits' end. In the city of Bolzano it was easier for us to meet, discuss, and plan together.
But I began to notice that mothers from the valleys were completely isolated from all our activities.
Many of them were ashamed. They did not have the courage I had to speak up, to fight for their children's rights.
I started organizing meetings between parents so they could get to know each other and understand that they were not alone, not misunderstood. Through these simple gatherings, many mothers—and slowly, some fathers too—learned to feel stronger, to press forward with their demands and proposals, and to fight together for what mattered most: a normal life, a normal future for their children.
To make politicians, school officials, and other authorities accept and recognize these demands, we founded the Association of Parents of People with Disabilities eight years ago (now Association of Parents of People in Situations of Disability n.d.r.). Many friends, many people joined us over these years—people willing to stand with us, to unite their strength with ours, to fight better for the rights of our children and families.
I think of so many teachers, doctors, therapists, principals, aides, psychologists, educators—all those people who accepted the criticism, the opposition that came with this work of raising awareness, of normalizing.
Through our fighting, we obtained provincial laws addressing the needs of people with disabilities in their medical, educational, and social aspects. We have created, and continue to create, social centers spread across the territory. And what matters most: thanks to our children, we are creating a humane, understanding, and sensitive society around us.
We do not yet live in paradise. The road will still be hard, even in the future.
We parents—and I first of all—want our children to have every opportunity to realize themselves, to become as independent as possible, to be tomorrow not dependent on others' care and charity, but simply citizens with normal rights and responsibilities.
We need absolute access to vocational schools. We need the creation of suitable jobs—protected workshops, cooperatives, businesses. We need many group homes built according to the actual capacity and need of each person. I am confident that parents committed to the work will succeed in getting everything we need for a safer, calmer, more normal tomorrow.
To finish, I can tell you simply that my life as a mother has been and continues to be deeply enriched and strengthened by Daniela's presence.
by Gertrude Calenzani, 1986