Presentation at the conference hosted by the Canadian Disability Studies Association (CDSA): “Confluence and Coalition in Community”
May 29, 2004, University of Manitoba, Winnipeg, Canada.

by Giulio Iraci

Ladies and Gentlemen,
Good afternoon. My name is Giulio Iraci, I am the brother of a person with a disability, and specifically of a person with Down’s syndrome. The same goes for Luca Barone, who’s sitting here beside me: he is also the brother of a person with DS. Today we represent a group of Italian siblings of people with disabilities called The Italian Sibling Group. But before getting into details, please allow me to thank the organizers of this conference for offering our group the chance to be here today. I’d also like to thank Augusta Moletto, Riziero Zucchi and Enrico Barone for letting the Siblings Group join the Italian panel of this conference. It is in fact a very important attainment for our group. Thank you very much.
Our poster, which you are all kindly invited to give a quick look at, contains a short summary of what I am about to say.
The Italian Sibling Group was created in 1997 by six Italian siblings of people with DS and with the vital support of Dr. Anna Zambon Hobart. The aim, just like in current days, was to offer brothers and sisters of people with disabilities the chance to express themselves by sharing and comparing their personal experiences. I was one of those six siblings and I clearly remember the excitement of being in the same room with total strangers who, nevertheless, were similar to me in just one way: they were all siblings of people with DS. In that very first meeting we told each other such intimate things that none of us had even confided to his/her best friend, his/her parents and maybe neither to him/herself. We had just found out what a self-help group is: namely, a free and informal group of people sharing the same problem in which each participant has the opportunity to confront it and, possibly, sort it out. For the first time we told each other what it meant to have a brother or a sister with a disability, how much this situation has influenced our life, our choices (also professional), our personal relationships and how much it would affect our life when our parents would be no longer here.
During these last few years our group has expanded: the number of meetings and participants has considerably risen and, although the majority of us remains related to DS, siblings of people with other disabilities, such as schizophrenia and spastic tetraparesis, joined the group. Each of them, each of us, has understood the deep difference between our role, as brothers and sisters of people with disabilities, and that of our parents. To be a sibling is different from being a mother or a father. We are aware now of our different approach towards disability and of our unique bond of affection with our disabled brothers and sisters.
We are not an association, but a spontaneous group with no intermediation from parents, associations or from official bodies in general. Every sibling is welcome to join us whenever in need, without having to participate in all of our initiatives.
Two years ago we set up a mailing list to keep in touch with each other and to give each other information and advice. Creating a self-run and independent virtual space, in which all siblings can talk about themselves, either about disability or not, has been a decisive step for our expansion.
Last year we opened a web site (www.siblings.it) which I’d like to show to you and which I invite you to visit. Everything concerning our group is mentioned in the pages of the site. You will find our history, our activities, information, a bibliography, links to many Italian and international associations dealing with disabilities, and above all “our experience”. That’s where we keep some of our deepest testimonies selected among more than 5000 e-mails sent to our mailing list. One of them, “Dear diary”, was written by Luca and he is here today to read it to you right after my speech.
One of our deepest convictions is that we brothers and sisters of people with disabilities want and must be considered active partners in the global dynamics of disabilities taking into account that, at the end of the day, we will be living the longest with our brothers and sisters with disabilities. That’s what they call the “after us”, where “us” stands for “us parents”; that’s why we like to call it the “during us”.
I do not want you to think that the Siblings Group works in competition or, worse, in opposition to parents. Not at all. One of our main activities is joining meetings with parents of people with disabilities to listen to their stories and answer their questions, mostly about how to handle children without a disability. Our answer, in that case, is to always make them an integral part of the decisions concerning the life of their sibling with a disability and never try to protect them from things he will have to learn sooner or later. I have personally taken part in a few meetings and I can assure you it is a beautiful and enriching experience.
A few members of our group are, or have been, actively present in organisations dealing with disabilities. That is because we believe that where disabilities are concerned everyone has to contribute as much as they can; and when I say everyone I mean everyone: relatives, specialists, social operators, institutions, schools, and so on. That’s why another activity we are very proud of is the collaboration with the Italian Health Institute (ISS): some of the most important Italian specialists in several scientific and medical fields invited us siblings to give our contribution to write down the New Guidelines for People with Down’s Syndrome and their Families.
The expansion of our group came also from two interviews which appeared on two national magazines and, last but not least, from presentations at conferences.
Before giving Luca leave to speak, I’d like to say just one more thing. The philosophy of our group is very simple: firstly, to let siblings share and compare their experience, and secondly, to support families of people with disabilities.
We, and especially I, in general do not like slogans: yet a sibling once said the most representative and fundamental sentence to explain what siblings mean to accomplish: he said that “sharing one’s experience can be a way to feel better, and if we feel better, so will our brothers and sisters”.
Thank you.

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