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Being
the brother or sister of a person with Down's Syndrome.
by
Carla Fermariello and Alessandro Gwis; published in “Sindrome
Down Notizie”, n.2-2002
For a non-Down brother or sister, the presence in the family
of a person with Down’s Syndrome (DS) causes a connection
to the syndrome which is very different to that of the parents.
This is due to several reasons. First of all, they have
evidently different roles; in fact, while the parental figure
requires responsibility and authority, the sibling’s
one is more "confidential"; secondly, to numerous
factors: biographical ones, concerning the full sharing
of childhood and development until adult life; cultural
ones, strictly liked to the political, social and scientific
achievements obtained over the years thanks to the commitment
of families and experts.
In 1996, a few siblings of persons with DS got together
for the first time to relate and compare their experiences
in an absolutely free and informal way, thanks to the sensibility
of Dr. Anna Zambon.
That very first meeting, held in a methodology technically
called "support group", was simply amazing because
it gave the participants the opportunity to tell what it
means to have a brother or sister with DS, and how and how
much it characterizes their lives.
The self-awareness of experiencing a different affective
tie and a “different” way of living their reality,
inside and outside the family, induced us to create a Siblings’
Group. It is important for us to remark that it is not a
so-called “official” association. The main feature
of the group is its informality, which means that members’
participation is absolutely spontaneous, and therefore not
mediated or proposed by their parents, or even organized
by AIPD (Italian Down’s Syndrome Association) (though
having contacts with AIPD and with “Fondazione Italiana
Verso il Futuro” the Group is independent from them).
If a brother or sister is willing to participate, they can
do it freely and in various ways: they can, for instance,
join a support group, or subscribe to our mailing list (a
sort of interactive forum which is used to keep in touch
and share information and advice with the group), or simply
contact us without any compulsory participation to our activities.
As it’s easily understandable, everything is aimed
at building a mutual network among those who feel like developing
and confronting such a fundamental aspect of their life
(disability) which does involve them, though not personally.
The chance to have an independent and self-managed space
where siblings can exclusively talk about themselves (with
or without reference to DS) has been for all of us a great
existential and emotional attainment.
Although the main activity of our group is the organization
of support groups (which are still successfully functioning),
recently we have started making our experience known to
those who are concerned with DS. That is exactly the reason
why, after a period of adjustment in Rome, we have started
contacting other AIPD Sections and exchanging ideas with
other Associations concerned with DS since the occasion
of a Milan Conference in March 2002.
These
last few years we have come to the conclusion that siblings
also need to be considered as taking an active part in the
global dimension of DS, because they are the persons who
will live the longest time with their disabled brother or
sister and because they do not see the adult life of a person
with DS as an “after us” but as the normal continuation
of a tie and a relationship which has characterized and
will keep on characterizing their life.
Publications
and reports
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