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.
true this consideration is!!!
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
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.
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
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 normalěty 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...
fact all the growth of man is the continuous and gradual overcoming
of his original disability.
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.
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.
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!
division between normality and abnormality was largely justified.
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
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...
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.
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
from some reports by Dr. G. Cottoni
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:
FAIRY OF A THOUSAND COLOURS
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.
FOR THE BOOK!
(Available only in Italian language)