3 December is the UN day for the Rights of People with Disabilities. Do we need days like this? Perhaps because they remind us about the dignity, respect, and the bringing out the value of difference, as well as about disabilities as part of human diversity. It is a moment when to say, as the UN Convention states, “that disability is a dynamic concept which is in evolution, the result of interaction between disability and attitudinal and environmental barriers, which prevent the full and effective participation in society on an equal basis with the others”. We tried to tell a simple, not striking story, the same way as sometimes it might be easier to accept diversity as part of life.
“When a child like this is born, one feels a knot inside, made of love, joy, but also sorrow, anger, helplessness, sense of inadequacy… Besides, you are surrounded by that world you would prefer to never face, you carry deaf rancor inside and keep asking all the time: Why has it happened to me?
Anna is a different kind of mum as well, because – it occurs to me while words and the memories are floating in the air – special kids cannot but come from special mums. Elijah was born at night. Anna and her husband had chosen to avoid prenatal testing because “it made no sense, we would have kept the baby in any case”. There were no reasons to suspect that anything could have gone wrong. Her pregnancy was absolutely regular, unlike the first one, with which she had had a lot of problems, and no clue foreshadowed that Elijah was not “normal”.
Yet Anna’s body gave up at a certain point in the delivery room. A sensation, the instinct of a mother. She knew, shortly before giving birth to her child, that Elijah was affected by the down syndrome. She even said it to her husband, who took it for nonsense.
“During the first night I did not even have tears. I felt guilty, I kept telling myself it was not true. In fact, doctors had a vague suspicion, they were not sure. Elijah did not have physical problems of any kind, the usual problems trisomic babies have. They had said samples were to be taken to check them on karyotype.. that it was not certain… but I was certain and I did not want to have this certainty. I spent the night alone at the hospital with that little creature, my son, attached to my breast. Another ‘positive clue’: trisomic children almost always fail to suckle. I was constantly texting his father… I wanted to be reassured he loved me even if I gave him such a son’. And the more I thought about it, the guiltier I felt. Towards my husband, towards my other perfect child whose intelligence was extraordinary, towards the grandparents I had disappointed.”
One of the books I enjoy reading the most to my 5-year-old son at night is titled “Antonino’s pan”. Antonino is a child who always drags a small pan behind himself, people do not understand the reason why. One day, this pan fell on his head and Antonino stopped being as everyone else… he must struggle much more and sometimes he would like to get rid of the small pan or hide in it. Then Antonino meets a special person who makes him understand what is the only way to be happy: pull out his head from the pan and use it to express all his qualities. While Anna is baring her soul to me, I think of Elijah and his small pan, his diversity.
Elijah is three year old now. The sentiment which – more than any other – has accompanied Anna all this time is fear. Fear that something could happen to her child, that she would not be good enough, and especially fear that other people would look the other way, embarrassed. Thousands of time she would have wanted to be invisible.
Her husband has a relationship of pure love with their son and it has helped her not to feel guilty anymore. Besides, he has great faith that sustains him. She thought she had faith as well… they had been married by Don Benzi, to whom they were – or are? – very affectionate. Those words he loved and kept repeating come back often to her mind: “the weakest members are also the most necessary ones”… she was so angry that Don Oreste, who had just died, left her this gift.
“Elijah is the love of my life. With him, nothing can be taken for granted, every small step he makes is a conquest… as having climbed the highest mountain. Yet, when people tell this is a gift, I get furious. He is a gift, as every other child… but not his illness, or better, his ‘genetic condition’. No, it is not. I cannot accept this thing. I dream of a world where Elijah could be considered what he is, with his limits and richness. Inside myself, I know that Don Oreste was right – what kind of society is the one that fails to keep pace with the weakest? Yet, it is a fatigue every day, and there is still much to be done… today, at best, you can expect mushy feelings or pietism… people with disabilities are people who have their burden, their identity and characteristics, but they are people in the first place”. As Antonino, they drag their small pan which, depending on whom they meet, can become means for beautiful things or a burden.