Interview with the Siblings Group published on the web site “Superabile”, portal of Inail (Italian Social Service Body of Assistance) on disability (www.superabile.it), 10-10-2003 (front page)

CLOSE SIBLINGS
People who have the experience of having a brother or a sister with Down’s Syndrome in common. They are called ‘Siblings’ and organise self-help groups in different Italian cities. It is not therapy, just words, experiences, feelings, expressed in freedom with the consciousness that who hears knows exactly what you mean.
by Alessia Ripani

A group of people met one afternoon at someone’s place with a bottle of wine and some appetisers. Some of them are students, some others already work but they have managed to find a bit of time to spend together and have a nice chat. They began to talk, listening to each other and commenting on each other’s subjects. They tell each other about their experiences, confronting their lives, their feelings. In this way they understand that talking makes them feel better. They are not alcoholic, if you are thinking about the wine. They are ‘Siblings’: brothers and sisters of people with Down’s Syndrome, meeting in a self-help group.
“The idea was born 7 years ago,” says Carla Fermariello, 27, one of the founders of the Italian Siblings Group and Counsellor of AIPD (Italian Association of Down’s Syndrome). “Thanks to Dr Anna Zambon, psychotherapist, expert on Down’s Syndrome subjects, who had her first experience of such a type of group in the USA where these realities are very popular. In fact, differently from Anglo-Saxon countries where the attention of relatives to disabled people involves every member of the family, in Italy parents are the only ones who organise and create associations to get into a good relationship with the disabled person and to protect all his/her interests. Brothers and sisters are almost invisible.”
It is not a group therapy, just words in freedom, feelings and emotions, to claim a “status”, the brother or sister one, usually not even considered. Siblings meet just like that, sometimes, in an informal meeting during which anybody can tell about his/her experience of being a brother or sister of a person with DS. How much this circumstance has influenced their lives, their professional decisions or even their loved ones. How much this will affect their lives when parents will no longer be there.
“At the beginning I was curious about the news,” says Giulio Iraci, 31, another one of the founders of the Siblings Group and member of the board of Fondazione italiana verso il futuro (Italian foundation towards the future, which operates in the “after us” subject). “Right after I got involved in helping other people to found self-aid groups in other Italian cities. The first Sibling Group was born in Rome […].”
“It is important,” continues Carla, student of Law, “to try and talk about your own role in the family and to accept the responsibility of having a disabled brother or sister, not letting it become a weight. Usually parents tend to protect the other brothers and sisters not to involve them in their brother’s or sister’s problems. They don’t understand that those problems are also their problems and that they affect inevitably every area of their lives, from friendships to loves. Having felt ashamed in front of schoolmates has been an experience easier to accept when you find out that it is normal, that we are not alone in having lived it.”
Siblings activity has risen sharply in the last two years, since the siblings started their own web site where lots of their experiences are published and where they have started a mailing list, the instrument with which siblings keep in touch and exchange their opinions, ideas and information. The mailing list was created more than two years ago and at the moment numbers about fifty subscriptions. During these years the siblings have sent to each other more than 3500 messages with any kind of purpose: from sharing difficult situations to confronting subjects linked to the world of disability, as well as simply keeping in touch and agreeing appointments.
“Thanks to the internet,” says Carla “we have been reached by lots of people that have exported our experience to their cities.”
“Furthermore,” adds Giulio “it has been a useful instrument to promote 12 October, the day dedicated to people with DS.”
The 12th of October, national day dedicated to people with DS, comes from an initiative promoted by the Siblings Group on February 2002 called “A juice of solidarity” in which in several Italian squares they have sold oranges. The proceeds of the sales have been given to the AIPD. “This year,” says Giulio “we will sell biological powdered soups.”

(10th October 2002)

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