About integration...

A dear friend and ABC member, in the introduction of a book edited by our Association, stated that when a cardiopathic child enters our families, we go in search of new balance.

How true this consideration is!!!

Our pursuit naturally joins us with all those who live such “handicap” situations and more and more gets out of the tamily circle as our children grow up. In the  pre-adolescent and adolescent age, the search clashes with that lack ot integration culture which pervades all social classes. All those who are out of standard and stand out of “normality”, are considered with suspicion, because they are unusual and trouble the common order, they have not the right balance and it is uneasy to foresee what they will do. It is difficult to accept their right to fully live because their way of life affects other people's life and bother them, they either ask for some care or even for a personal change, which is the most troublesome and the uneasiest thing.

Few remember that it is due to uncommon people almost all the scientific and artistic advancement of mankind. Many of those we now call geniuses, at first were considered abnormal, often mocked, underestimated, and in past years even tried and condemned.

Few remember that it is due to the assistance given to the disabled the most part of moral, sociailand clvil progress: in fact, recognizing them as individuals and helping them in their functional and relational needs, we have learnt te have truer and more human relationships.

Normality must not be used to set limits to integration; on the contrary it has to increase our attention tewards the weaker. On the other hand, an absolnte normalìty does not exist, if we observe that all people are born disabled: they cannot speak, walk, do not understand the situations and the messages of the others, they cannot have normal relationships, avoid dangers, they are not independent...

In fact all the growth of man is the continuous and gradual overcoming of his original disability.

In this process we are supported by physical, intellectual and affective development even if the functional handicaps which slow that development tend more or less to maintain the first limits The fact itselt would not be so important but the problem is the obstacle they cause in interpersonai relationships. That is to say that the only handicap is the relationai one, the inability to have relationships with oneself, the other people and reality, whereas up to now the main interest has been concentrated on functional causes. Of course this interest has to continue but inside the wider research ot relational difficuilties.

It is also clear that such difficulties can arise even in the presence of slight funcilonal lack or normal development so that we can affirm that the integration problem is a relational problem, always present in everybody's life.

Before realizing that, we have made several mistakes. For example we have believed that it was only the disabled's problem: we had to help them because we were immune from disability, practising the virtues of patience, solidarity, compassion, fully aware of our superiority. Lucky those who did not have any problems and unfortunate the few (luckily!) to whom it had happened!

The division between normality and abnormality was largely justified.

When they speak about integration at school, they see it as a problem concerning only students. Directors and teachers have nothing to do with it! So there is a big discrepancy when they say they want the integration among students and they do not realize it among themselves. Their assertion they are not able to cope with certain problems becomes the confession the institution is not up to the situation.

Somebody thinks that integration is a medical problem but it is a distortion and a banality. Teachers and students who do not live the princlples and the values of integration among themselves, will not really help anyone realize it. The presence of a pupil with some physical or learning difficulty is an exceptional possibility offered to everybody working at school to live and realize certain values such as klowledge and attention to the suffering and need ot the others, sympathy, acceptance, willingness to help, patience...

Certains parents of students without evident difficulties sometimes regard the disabled with suspicion and dislike their children to live with them. The same parents approve of this integration when they observe the naturai acceptance from the institution. However the defaults of institutions are not the only possibilities to operate: we must also eliminate the obstacles which block the realization of our hopes.

We must commit ourselves to get rid of the risk to be crashed by the contradiction of a society that established compulsory education and the right to work for all people and that does not respond to everybody’s needs.

Notes from some reports by Dr. G. Cottoni

Heart Disease Patients Charter of Rights
The past 4th July was a very important date in the calendar for all those Voluntary Associations supporting cardiovascular diseases. Through CO.NA.CUORE, a national co-ordinating organisation counting more than 30 associations (including Parma based A.B.C.), The Charter of Rights for Heart Disease Patients was presented to the various political fractions of the Italian Parliament and Senate in the Sala del Cenacolo room at the Chamber of Deputies in Rome. The chairman of CO.NA.CUORE, Giovanni Spinella, illustrated the main intentions, while support for the initiative was reiterated by the Chairman of the Finance Commission in the Senate, Luciano Guerzoni and by Piergiorgio Massidda, Vice-Chairman of the Social Affairs Commission at the Chamber of Deputies. The Charter of Rights for Heart Disease Patients summarises in 30 articles and instances, the requests of people affected by cardiovascular diseases and states the case for intensifying the battle against cardiovascular disease, the number one cause of death in Italy. For more detailed information on the articles link to: http://www.conacuore.it/main.htm

THE FAIRY OF A THOUSAND COLOURS
On Tuesday 12th December the book The Fairy of a Thousand Colours, a collection of fairy tales compiled by Giuseppe Braghiroli, a friend of our Association was presented at the Parma bookstore Fiaccadori. The volume, The Fairy of a Thousand Colours, was promoted by the bookstore Fiaccadori and by the Association The Child with Heart Disorders. Journalist Luigi Alfieri introduced the book to an enthusiastic audience of children and parents who warmly applauded a selection of the stories read by the author and by some of the children present. As stated in the preface, the book will be sent to Association members during the next period and a choice of the stories can be found at our web site www.abcparma.it. "Life is not a spectator sport and as parents we have to be ready, creative and full of resources. Whatever the difficulties, it is our duty to guarantee our children protection and love, so that they can cope with the world, equipped with the necessary know-how that will stay with them always. This central phrase, in the statute of the Association for Children with Heart Disease Disorders A.B.C., is the distillation of painful experience, sometimes overwhelming the ability of those parents whose aspiration it was to pool their learning to offer their children a quality of life equal to that of normal children. That was back in 1984, and we were a group of no more than 30 parents all asking the same questions: What kind of life will my child have? How can I cope alone with such a difficult task? Today A.B.C. has around 600 member families and works closely with the Parma University Paediatric Cardiology Centre. The Association has financed the donation of medical equipment worth more than a billion Italian Lira; it has organised seminars for parents and doctors concerning child heart disease as well as covering the related psychological and social aspects. It has published books on these topics and pamphlets for parents. It provides assistance for children from other towns who are hospitalised, or for those who need to go abroad for care. It has started an information programme both with the health service and with school bodies to make people aware of what life means for the sick child and to draw attention to environment-related problems. A few years ago A.B.C. started publishing a newsletter called ABC News and very often there is a fairy tale printed on the back page written and illustrated by Giuseppe Braghiroli, an advertising art director working in Parma with a striking talent for children's illustration and comic strips in general. This partnership between friends has, today, given birth to this book containing a selection of these tales together with other unpublished ones written especially for the volume by the author. This book has been published thanks to the longstanding relationship with our generous sponsor, the firm Greci of Ravadese, who financed the project with enthusiasm and real interest. Special thanks to Cecilia Greci for her simplicity and keenness who gave us the inspiration and strength to continue. This collection of fairy tales, born of the sentiments of friendship and solidarity, is an act of love towards our children and towards all those children who, whether reading or listening to these tales, will be taken on a fabulous journey to a land of castles, princes and fairies. The book is intended for those children who are hospitalised in children's wards, for children affected by other illnesses, supported by other associations, and children's care centres. Anywhere that there might be a mum or dad or any person willing to open up a magic world and begin a journey full of emotions that are often the key to thinking about, understanding and facing the real world, simply by using his voice. Life is not a spectator sport is not just a slogan but a declaration of commitment, an involving and overwhelming statement that comes from having experienced the joys and difficulties of real life. Let's love our children, always.

ASK FOR THE BOOK!
(Available only in Italian language)