Interview with Carla Fermariello which appeared in the weekly magazine "Anna", 21st April 2003, nr. 42.

MY BROTHER WITH DOWN'S SYNDROME

Once hidden by the family. As if it was a shame. Today accepted and integrated. But the difficulties are many. Says a person who lives this special relationship. By Silvia Ferraris Carla sees the world in a different way. According to her, people are not divided into men and women; black or white, etcetera. The first distinction she has ever made is the one between "Down's Syndrome people" and "non-Down's Syndrome people". Carla realised that she is a "non-DS-person" when her large, dark eyes peered more attentively at those of her younger sister Giulia, a "Down's Syndrome person". It was the age of adolescence, the first passions and the first obsessions. Through the corridors of her school she heard someone whisper: "Look, she's the mongoloid's sister". Or else: "That's the Chinese girl's sister". Carla was 12, with her first spots, she did not like her hair, and in the morning she never knew what to wear. "I looked at myself in the mirror and said: 'there you are, ugly girl. And on top of it I have a DS-sister'". Today Carla is 27. Fortunately, those days are far away. "It wasn't easy. But today things have changed in schools. You don't hear sentences like: 'You're awarded the golden mongoloid' anymore".

Forty thousand in Italy
Our society has become more correct towards disabilities. Last year Lucio Dalla [an Italian singer, translator's note] was overwhelmed with protests for saying "mongoloid" live on TV. And he had to apologise. People often talk about people with DS. By now, they know almost everything about this condition named after Langdon Down, one of the doctors who studied it in the 1800s. They know it is related to one in one thousand newborn children, that it can be diagnosed via prenatal tests, that who is affected by the Syndrome, besides having a more or less serious mental deficiency, is also more likely to have infections and suffers from heart malfunctions. They know about the discomfort that children with Down's Syndrome have to live with from being aware of their condition. They know about their parents' suffering. On the contrary, nobody knows anything about the "non-DS-siblings". Who and how many are they? Do they suffer their normality? Sometimes they do. Because, explains Carla, "in a family with a child with DS the world turns around him or her". You hurry to take them to school, to the gym, the swimming pool, for a walk, to the paediatrician, to the specialist, to the panel doctor, to granny's, to piano lessons. Mum and dad only care about them, Dreams for their present, nightmares for their destiny.

We also exist
"Non-DS-siblings" are invisible in the family. Docile chauffeurs, careful babysitters, loving playmates. But when important decisions are to be taken they must remain in the sidelines. The grownups shut the door and they manage it on their own. As Carla reached the age of reason she got tired of staying behind the door. One day she sought other "non-DS-siblings" like her. Together they knocked at the door of the major Association in the sector, AIPD (Italian Association of People with Down's Syndrome), to say: "We also exist". "Our brothers' and sisters' future involves us more than any other. The average life of a person with DS is 60 years. Who's going to take care of them when mum and dad are gone?". Today the group of brothers and sisters has 50 members all over Italy. It gave itself the name 'Siblings', in the English fashion, and has a site (www.siblings.it). Via internet Carla and her new friends confide in each other with their problems. "When I am so tired I could cry endlessly, I think of Giulia and of all her daily battles. She is an example to me and sometimes I am sorry not to have more time to spend with her or not to feel like it. I think of all the times when she wakes up in the morning and she gets ready, I think of all the years it took to learn that, I think of all the times she wants to say something and stutters because she realises she is not as fast as the others. Will she ever be weary of speaking? I think of when she goes to piano lessons and returns with her exercise-book with all those scales to copy and learn; so much devotion in those repetitive daily exercises, so much determination. I think of all her daily efforts to be more autonomous".

A bond forever
If being "normal" is already difficult in a world where everything is related to images of beautiful, rich, winning men and women, being a DS-person can be awful. "And yet," says Carla, "Giulia wakes up every morning and faces the world, people, difficulties. Without her maybe I wouldn't have that constant example: a person who shows me with her character and enthusiasm how unimportant some things actually are". Then of course, like every other sister sometimes she is unbearable. Too much concentrated on herself. Far away. Stubborn. Selfish: "I call her and she doesn't answer, she does things that annoy me on purpose, she gets angry for nothing. But then I realise how ridiculous and anachronistic that desire is, because I am, in a way, a hurdle to her life at least as much as she was to mine. It's like being happily handcuffed together.". Carla dreams that sooner or later those cuffs will break. "I hope she can be happy, I hope she can feel like a real woman, even though she won't ever be able to live alone, make a trip with her boyfriend, get married, have children, do the job she would like to, play tennis (she would like that so much!)". The future is unknown, like that of many "young DS people" who are about to finish school. Giulia did not want to finish secondary school. She could not catch up with her classmates' pace: "They're too good for me". She preferred to continue in a different school, more suitable to her capabilities. A modern and equipped day-time institute where at the moment she does the things she likes: ceramics, theatre, cuisine, music, and photography. She spends the whole day in this institute, including lunch, then she returns home. What will she do when she is grown up? Carla breaks into laughter: "I don't even know what I will do!" by Silvia Ferraris

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