Siblings of differently abled persons: a subject which one

1
Blanca Nuñez – Luis Rodríguez
Siblings of differently abled persons:
A subject to be retaken
Translations by
Yanina Laila Santangelo
Jessica Belén Zorrilla
2
© 2004, Blanca Nuñez – Luis Rodríguez
Asociación AMAR
Cochabamba 3243, Buenos Aires (1252) – Argentina
Tel. / Fax: 4931-5227/ 7251
[email protected] – [email protected]
www. hogaramar.org.ar
General Coordinator: Gustavo Arcángelo
Design: Gustavo Arcángelo and Silvia Gabarrot
Correction: María Cristina Pruzzo
Photographs: AMAR Association and Silvia Gabarrot
Illustrations: Conrado Giusti
ISBN: 987-21447-0-2
Queda hecho el depósito que previene la ley 11.723
Impreso en Argentina. Printed in Argentina.
First published June, 2004.
Nuñez, Blanca
Los hermanos de personas con discapacidad: una asignatura pendiente/
Blanca Nuñez y Luis Rodriguez – 1ª ED. – Buenos Aires: Asociación AMAR:
Fundación Telefónica, 2004.
ISBN: 987-21447-0-2
1. Relaciones Interpersonales I. Rodríguez, Luis II. Título.
CDD 158.2
Todos los derechos reservados. Esta publicación no puede ser
reproducida, ni en todo ni en parte, ni registrada en, o transmitida por
un sistema de recuperación de información, en ninguna forma ni por
ningún medio, sea mecánico, fotoquímico, electrónico, magnético,
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escrito de los autores.
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Editorial
Since 2002, and drawn by the aim of promoting the activities of the organizations of the
third sector that encourage the same social purposes than “Telefónica Foundation”, we
began –together with “AMAR Association”- the project of helping siblings of differently
abled persons through reflection workshops.
Until then, siblings had been relegated before the attention of the differently abled persons
and, in second place, of the parents. But their ambivalent feelings towards their differently
abled sibling, their parents, the home environment and towards themselves, justified a
special care that favours familiar integration. This is the main purpose of our workshops.
Thus, a specialized psychologists’ team from “AMAR Association” –supported in local
organizations- arrived in different areas of the country in order to guide these meetings, in
which, until 2003, 490 siblings (between 6 and 60 years old), have attended. This year,
we are going to continue with these meetings in other cities of the country.
Due to the success of these meetings, we have published, together with AMAR
Association, “siblings of differently abled persons: a subject to be retaken”.
This book tries to give expression to the rich experiences of the workshops and tries to
move them closer to the general public (needed of its contents or, simply, interested in its
subject)
Siblings, who participate in the workshops, are the main characters of this book. They tell
their experiences (in and outside the home environment); they evaluate the workshops
and analyze the exchange of contributions. Many of them discovered that there have
always been other siblings with the same problem or experience; others found not only
information, but also relief and continence. Others encouraged their partners with their
own experiences and a wide range of people was integrated to their family.
Carmen Grillo
Director of Telefónica de Argentina Foundation.
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Acknowledgments
We want to express our gratitude to all siblings which have participated in the reflection
workshops and to all people with whom we had some kind of professional or informal
contact. They have contributed with the richness of their personal experiences, which
have been captured in this book.
We also want to thank all parents that trusted in us their more esteemed treasure: their
children.
We would like to gratefully acknowledge the support of Telefonica Foundation which,
since the beginning, believed that it is essential the role of the siblings in order to protect
the family quality life.
Thanks to their collaboration, we were abled to develop, compile, publish and finance this
book. Without their support, it wouldn’t have been possible.
We would like to acknowledge the valuable advices and contributions of Carmen Grillo,
Jorge Leiva, Mónica Lencina and Beatriz Pellizari. They were always in all the details.
Thanks to G.A.E. (Pergamino), A.P.A.DIS (San Luis), I.R.I.M. Nuestra Señora de la
Esperanza (Haedo), J.A.DIS (Morón), Un Camino Foundation (Gral. Pico, La Pampa),
Down is Up (San Isidro), APANDO (Mendoza), A.P.P.A.DI (Río Gallegos) and the
Direction of Inclusive Education from Ministry of Culture and Education (La Pampa) which
offered us their job, effort and compromise to generate a space for our workshops and
siblings.
Thanks to A.S.D.R.A. and A.E.D.I.N. They let us take pictures from Ramirez Vilches and
Olmedo families. They illustrate many pages of this book and thanks to all them who
opened us the doors of their houses.
We also want to thank Lucía Frangella, who gave us a private letter that written to her
disabled sister.
Thanks to the Directive Commission of AMAR Association that always supported and
believed in this project and in its mission.
Finally, we consider relevant to thank our colleagues and partners Silvia Lanciano and
Ana Paula Vitelli who have worked intensively in the workshops in all the cities we have
visited. They have also contributed to select and classify the material, to make dubbings
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of the meetings and they worked in the evaluation of each and every opinion poll. This
great job made us possible to examine in detail the secluded material. Furthermore, they
have both contributed with the elaboration of this book and have accompanied us in this
campaign.
Blanca Nuñez – Luis Rodríguez
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The Authors
Blanca Nuñez
Bachelor of Psychology. University of Buenos Aires.
She has directed her clinical work to the attention of differently abled children and
adolescents and to their familiar group with performance at the hospitals: Manuel Roca,
de Niños Ricardo Gutierrez, Italiano and Alemán.
She is member of the Executive Committee of Disabilities. Argentine Society of
Paediatrics.
“Family and Disability” Mastery Coordinator. Museo Social Argentino University.
Psychologist Support Programme for families with a disabled son Coordinator.
Department of Paediatrics. Aleman Hospital.
Institutions Adviser in charge of family and disability topics.
Author from many publications: the deaf child and his family, Troquel Editorial; The
differently abled child, his family and his teacher, Grupo Editor Multimedial (Geema);
small notebooks collection and videos about Family and Disability topics, Cendif Editorial.
Luis Rodriguez
Bachelor of Psychology. University of Buenos Aires.
Non-profit organizations Expert. University of San Andres, Torcuatto Di Tella and Cedes.
He has served as Therapist in the attention of differently abled children and adolescent
and their families. De Clinicas Hospital and Aleman Hospital.
General Coordinator of Support Groups for familiars of Down’s syndrome persons
(A.S.D.R.A.)
Presently, he is the Directive Executive from AMAR Association.
Author of different articles and works on this thematic, published in specialized
magazines.
Co-author of The Siblings. Small notebooks and videos collection about Family and
Disability topics, Cendif Editorial.
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Index
Prologue
9
The forgotten by everyone?
13
Our proposal: to understand them in order to promote their development
17
A world of clashing emotions
19
Difficulty in imposing restrictions to a differently abled son. What do siblings feel? 20
Anger, jealousy, rivalry and the sentiment of injustice are always present.
26
The pressure: the result of responsibility and exigency.
28
The sibling feels alone, isolated and neglected.
33
The concern for keeping mum and dad happy.
34
The child feels good when parents enjoy the life.
36
Doubts related to the love of parents.
37
Which are the reasons for guilt?
40
How many feelings awake when exposing the sibling to the outside?
43
Ignorance, doubts, fears and uncertainty for lack of information.
46
Concerns about the future.
50
Personal enrichment and learning provided by experience.
52
The Expression of emotions.
57
Siblings Support Group.
61
The voice of experience: proposals for parents in charge of “expert siblings”.
67
Some conclusions.
70
The letter of a Sister.
73
Some activities for children and adults.
75
For children.
75
For adults.
77
To share between adults and children.
77
Information of general interest.
79
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9
Prologue
The targeted readers of this book are parents and health and education professionals who
are interested in achieving a major emotional rapprochement with siblings of the
differently abled persons. We know that many of these adults are eager and worried about
approaching this child or young people and they don’t know how to do this. In this book,
we will try to offer some resorts in order to help them.
The main purpose of this book is that its addressees may discover –throughout the
reading – which are the feelings, necessities, interests, concerns and the different
vicissitudes that siblings of differently abled persons live through.
Many of the pages of this work may be of common reading between adults and siblings.
We hope you take out key points and that they will be useful for reflection, communication
and the fruitful exchange between them.
We hope that this work will constitute a contribution to build bridges between adults and
siblings in order to make the comprehension of human conducts and of their emotional
world easier, which stimulates the communication, so as to strengthen existing links and,
if possible, to create new forms of exchange.
The project of this book has been progressively generated throughout time in the exercise
of our practice as psychologists, interested in the problems of this type of families.
In this path, we have discovered that there are many forms to support these groups that
do not exhaust in preparing parents` meetings or workshops that revolve around the
problematic of the differently abled son. We also understood that it was necessary to
implement resources for assistance of the other child. The observations showed us that
he was sometimes unknown in his affective necessities; almost forgotten by adults who
go round him.
Therefore, we began to carry on workshops for siblings with different forms of operation,
with respect to techniques and time duration.
We also wanted to attract attention in the problematic of these siblings in the professional
field introducing the thematic in spaces of congresses, journeys, informal lectures and in
all scientific events, in which we were invited to participate in.
10
In 1998, with this same purpose (of making a general approximation to the thematic of
siblings and purpose of alerting the vital situation concerning the most ordinary feelings
they live through and their necessities), we published a small notebook and video, named
“Siblings”.
The main addresses of this book are familiars, teachers and professionals. Among them,
a rich material of circulation of the thematic was constituted and it was used as a decisive
resource of the reflection in parents and siblings workshops.
Our goal is to contribute with the well-being of these family members, who will probably
have the longest relationship with the differently abled person. This reason made us
compromise intensively with this job.
Nowadays, we are before this new realization: a book devoted to the sibling that goes
through childhood and youth. We wish this reading helps to understand him.
Why and what for should we understand him? To be able to obtain a major emotional
rapprochement with him, to accompany him and to help him in his growth, so that he
develops the maximum possibilities of himself and be satisfied with this.
All these respond to an ultimate purpose: to promote mental health in this extensive
population. And, in order to fulfil it, we mainly resorted to the testimony of many siblings,
who have participated in a Programme of Reflection Workshops for Siblings, in 20022003, the latter was carried on from AMAR Association in alliance with Telefónica de
Argentina Foundation in the cities of Buenos Aires, Morón, San Isidro, Pergamino
(Buenos Aires), San Luis (San Luis), Gral. Pico, Santa Rosa (La Pampa), Mendoza and
Río Gallegos (Santa Cruz). They cover a population of four hundred and ninety siblings
between six and sixty years old. In 2004, this programme continued with new
destinations.
Although the siblings were the main characters of this programme, it also allowed the
participation of parents and other familiars, professionals, teachers and the community in
general to have a conversation, to reflect and to carry out exchanges about this
problematic.
In these meetings, it was also favoured the participation of adult siblings, acting in quality
of experts.
11
All these activities provided us a valuable testimonial caudal, which forms part of this
book.
Our work is also enriched by the portions of the private worlds that other siblings (children
and adolescents) decided to share with us. They have integrated reflection workshops,
which we have coordinated in the previous phases of execution of the mentioned
programme and our work is also enriched by the multiple psychotherapeutic interventions
for siblings, who consulted us as clinical psychologists.
All these activities offered us a wide range of anecdotes, testimonies and life experiences,
which appear in the pages of this book. They allow us to write from the position of a
personal deep experience, instead of writing supported only by theory.
Thanks to this rich and wide range of contents, the reader may appropriate of these
experiences insofar he passes this shared path.
We know that this subject will not exhaust with these contributions. Each reflection will
surely open a space to continue in-depth study, but –at least- the path will be initiated.
We think that, when the reader finishes with the reading, he may count on more elements
to widen his vision of the brother. And –without any doubt- this will constitute a tool to help
him in his development, to fortify his links and to consolidate communication, fundamental
resources for the prevention of mental health.
The authors.
Buenos Aires, March 2005.
12
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The forgotten by everyone?
Since the moment of the familiar confrontation with the disability, siblings are brushed off
and sometimes they are passed over as a consequence of the demands of the differently
abled person´ attention.
The majority of the time, familiars consider –erroneously- that siblings have more
resources to face all the vicissitudes alone. But, maybe, they need more support than the
differently abled brother.
Professionals –in the field of rehabilitation- contribute to this oversight. They are trained
for the assistance of the differently abled person and they put them in the centre of the
familiar scene and, many times, burden parents with pressure and demands about “what
is right or not” in order to fulfil the special necessities of one of their sons, the differently
abled son.
Furthermore, siblings keep away from the visits to rehabilitation centres and, when they
are summoned, it is only in quality of helping the differently abled person from their role of
brother.
Siblings are offered few opportunities, to know what they think, what they feel, what they
are worried about, which their necessities are, which the obstacles they have to tackle are
and which the possibilities of their personal enrichment are.
On the contrary, parents have more opportunities. They receive help and support from
professionals, who assist the disabled child. It is frequent that they came across other
parents who are living through the same situation informally (waiting rooms) or in a formal
way (parents groups). So, they are able to exchange and share experiences, to support
each other and it is probably they may benefit with this situation.
The sibling has usually less opportunities to contact with professionals and to share
something with persons who are living through similar experiences. It provokes a situation
of isolation and helplessness.
To our surprise, we could gather testimonies from siblings, including adults, who
participated in our Reflection Workshops. They have declared/ stated that it was the first
time they had some kind of contact with other siblings and that it was a shocking situation
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while feeling “they are not the only who are living through this experience” and that “they
can share similar experiences with others”.
Beatriz, who is forty five years old, shares with us the following testimony:
“I wish I had had this space when I was 10 years old.”
The programmes of intervention for parents (reflection groups, information and orientation
programmes, training programmes, support programmes from parents to others, etcetera)
are, worldwide, more numerous than the ones devoted to siblings. During the eighties, it
was worldwide generated a major interest for understanding and accompanying siblings
with the implementation of different programmes for them.
15
16
Our proposal: to understand them in order to promote their development.
We have set ourselves a goal to comprehend siblings, especially those who are living
through childhood and puberty. Sometimes, they are neglected and “forgotten” by many
people. It is useful to note that the existing programmes in our environment have been
addressed to adolescent and adult siblings.
We want to understand them diving in their private worlds to know their experiences, to
know what they are concerned about, what are they afraid of, which their necessities and
interests are and which the vicissitudes -they confront in their quality of siblings- are.
This allows us to have a major emotional rapprochement and to accompany and help
them in order to make their development harmonized.
Anyway, in this book, we only refer to generalities.
Each sibling is unique and singular, and his answer to this situation is influenced by
multiple factors, which acted in complex interactions: the manner in which the family has
reply before to the situation they lived through, type and grade of the disability, sibling’s
age, the date of birth, the difference of age between siblings, the number of sons in the
family, etcetera.
17
18
A world of clashing emotions
The happiness, the strength to face challenges and the personal enrichment are mixed
with concerns, demands, blame, pain, shame, anger and jealousy.
The presence of opposed feelings is common in all siblings’ relationships. If we add a
disability to one of them, these ambivalent feelings seem to intensify.
It is beneficial that siblings of the differently abled persons have the ability to recognize
these emotions and feelings and be able to communicate and share them within the
family (with people who are in the same situation or just with others) so that they can face
this situation.
Usually, children find in adults lower tolerance to express themselves clearly, especially
concerning their negative feelings, such as hostility, embarrassment and jealousy.
It demands so much energy to maintain the façade of having feelings towards the sibling.
The child is left alone, refusing his feelings, overwhelmed with feelings of guilt, thinking
about the idea he is “a bad son”, “a bad sibling” and “a bad child”, because of his feelings.
We know that this pile of negative feelings, which does not find a way of direct expression,
can turn over him and they can state under the form of definite symptoms, such as
psychosomatic condition.
Siblings need permission neither to refuse these feelings, nor omitting them, but to
express, share, comprehend and handle them.
Difficulty in imposing restrictions to a differently abled son. What do siblings feel?
A family (we will name it as L) was in psychological treatment. This family was composed
by the mother, Susana (44 years old), the father, Juan (45 years old) and their three sons:
Karina (14 years old), Ezequiel (13 years old) and Nicolas (11 years old), who had a deep
deafness.
We will feature a fragment of one of the therapeutic interviews, from which we will be able
to dive into the dynamic of this familiar group. We will also be able to perceive the
parents` difficulty in the differently abled son’s limits and, therefore, the reactions of the
siblings.
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Juan: I admit that we have spoiled Nicolas, since he is a deaf child and the youngest in
the family. We did not know how to talk to him in order that he could understand us and it
was the reason why we have overlooked many things. He is a shrewd person and he pulls
our leg. With the other children, we were always stricter.
They are obedient, although they have little defects, because of the age.
Susana: since he was a baby, he has always been a child with a lot of exigencies. He
always went to school, to private lessons and to audiometry tests. At that time, we would
get into a bus eight times per day. He was always doing homework. I felt so sorry for him;
while other children were riding a bike, Nicolas had to stay memorizing his homework.
Once we were finished, I did not want to demand him nothing else, that’s why I could not
do anything against his whims.
Ezequiel: Nicolas is very impulsive. He is always screaming and crying in order to achieve
his purpose. He plays the fool. He is always disturbing me. When he is bored, he
provokes me. He teases me, he says to me “fool”, “fat”, “you always tell stupidities”. He
likes making fun of everybody. He is always searching for the defects of other people. In
the street, he is always pointing at fat persons or persons who have any defect.
And, if I tell him he is a deaf child, he gets annoyed and screams. My mother gets mad at
me and she does not say anything to him in order that he doesn’t lose his mind. He is
always everywhere, too. I am not able to invite friends to our home because he is always
in the middle.
Karina: when my friends come to my house, he is in the middle, too. He behaves like a
clown and he invades my bedroom. He doesn’t leave me alone. Everything is quiet
around here only when he is not here.
When I am watching TV or when one of my friends comes to my house to see a film, he
kicks up a fuss. He sits in front of the telly box, so we can’t watch TV or he just asks me
what is happening in the film all the time and I can’t see it.
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Ezequiel: he is very impulsive. The other day, we made a real fool of ourselves: he
fancied eating a pizza and there wasn’t. And he began to scream. I was so ashamed.
Karina: it seems he had privileges in our house. He says he is the “boss” and I think this is
true. He was allowed to be the leader and nobody tells anything to him. He never helps at
home, he is always playing the pc or he is watching TV. Since we were children, we have
had a lot of responsibilities. Our parents overprotect him and they make him useless. He
is capable of doing a lot of things.
Ezequiel: our parents hope that we understand and tolerate everything. They don’t pay
attention to us. My mother has always done the homework with him. When we want to talk
to her, Nico interrupts.
Karina: we have to be the perfect sons and they, rarely, tell us an encouragement word. It
seems that our obligation is to be mature, good pupils and persons who pay attention to
them.
Generally, the claims that Ezequiel and Karina show in this interview are heard by all the
youngest siblings (they are diminished in adult siblings). They are the expression of
uneasiness that they feel because of the place of “privilege” and power that the disabled
child occupies in the centre of the house (“he is the boss, the one who orders, Karina
assures). He is not obliged to any type of rules, he is exempted from responsibilities, and
he is overprotected.
Parents used to show some difficulties in the exercise of authority. They don’t impose
limits, they try to control him, but they failed to do it. Nevertheless, they fall more rules
over the son without the disability. They scold, limit, demand and reprimand the latter.
This is what Juan has said when assured: “… we have overlooked many things. He is a
shrewd person and he pulls our leg. With the other children, we were always stricter.”
Susana adds that, as a consequence of many pedagogical exigencies to teach Nicolás to
talk, “… when we finished, I did not want to demand him nothing else, that’s why I could
not do anything against his whims.”
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Habitually, parents hope that siblings hand over and “understand” things before the
different claims and whims of the disabled child.
They often say “Give the toy to him in order not to make him shout!”; “He doesn’t
understand, try to understand him”; “Let him watch the TV programme he wants in order
to avoid rows”; “It is not important if he tears a piece of paper of your notebook, you can
write it again”.
Some siblings are subjected to these paternal exigencies; others protest against these
injustices, like Karina and Ezequiel.
Many times, they alternate between one behaviour and other.
Groups of siblings use to be very appropriate fields for the expression of discomfort that
siblings feel before the absence of limits, and place of despotism that the disabled child
occupies in the heart of the family and before the absence of paternal authority.
First, the group listens to one member; he launches his protest about the situation he is
going through. This situation stimulates the others to express and tell their stories. In this
way, the expression of discomfort with the disabled child is nourished this becomes a
shared feeling.
For example, we will transcribe a fragment from one meeting (groups of siblings from ten
to fourteen years old) in the group called “The best of the best”; this name has received
the maximum vote between other proposed options like “the picketed”, “the battered”, “the
sacked”.
Lucía: How annoying! He hits me and I can’t hit him back because my parents scold me.
Sebastián: The same happens to me. He kicks up a fuss and we can’t scold him because
mum and dad get mad at us. We are always in fault, but it isn’t true.
Gastón: I’m fed up with him; he always pretends he is a victim. He has a lot of whims and
mum and dad say that he is right.
Macarena: They always get mad at me. My sister blames me and mum always believes
her.
22
Luciano: I don’t like that he touches my things. He goes to my bedroom and he kicks up a
fuss. They don’t ever scold with him. It seems he is the favourite son.
Daniela: My sister goes to my bedroom, too and she takes out my nail polishes. I don’t
like it when she touches my things.
Macarena: I hate when he disturbs me if I am studying. He knows I am untouchable, he
can’t touch me. If he does it, my mum punishes him and he doesn’t like it. Luckily, my
mother stands for me.
Coordinator: I think that more than one of them would like to be untouchable in order not
to be punched, beaten or plundered (in reference with the different proposed names to
call the group)
Diego: We can name the group “the picketed siblings”.
Coordinator: And why that name?
Diego: Because the picketers block the streets and break everything and my sister breaks
all my things. Our picketers’ siblings mistreat us.
Daniela: But we are so fortunate for being their siblings. You can learn from them, they
learn from us… it is a complement.
Diego: I don’t like he touches everything and that he picks up the phone.
(They begin to talk all together)
Daniela: But it is also necessary that parents scold them. They think they can hit or do
whatever they want. We have to teach them, they don’t know.
23
Coordinator: You mean parents have to impose limits in order to teach them to coexist
with the family.
Daniela: If he comes and hits you, you have to impose limits; he doesn’t have to hit you,
because he will do the same at school, he will hit his friends or he will behave badly
wherever he goes and we have to teach him. This is parents´ and siblings´ responsibility.
They are disabled persons, but it doesn’t mean we have to allow them to do whatever
they want.
Micaela, in our daddy’s bedroom, is taking out the clothing from the wardrobe. This is one
of her favourite games.
(Ezequiel, 9 years old)
24
Anger, jealousy, rivalry and the feeling of injustice are always present.
In these testimonies, siblings are asking for defence, care and protection. They demand a
more equitable and equal treatment.
They also want parents to impose limits. This is a constant claim of all the siblings, with
whom we were in touch (see the offering that “expert siblings” make to parents in order to
help their disabled son)
The abovementioned testimonies hint at the feelings of annoyance, jealousy and rivalry
because of the place of privilege that the disabled sibling occupies in respect of attention,
care, provision of material things and paternal protection.
The absence of anger and rules towards the disabled son increases the idea that they are
the “favourite ones”, like one of the siblings from “The Best of the Best” group assured.
Sometimes, the other sibling appears to be dominated by feelings of anger and injustice
because of the disabled siblings´ enjoyment of each and every situation of privilege and
because of his own situation: victims of blows, mistreats, usurpation of possessions, and
lack of protection of the parents.
Members of “The Best of the Best” group feel sacked by their own picketeer siblings.
In reference with the position they occupy, is it there a mask and masochistic attitude due
to the fact that they let his siblings punch them and sack them which puts them in a
position of passiveness? Would this attitude be due to an attempt to diminish guilt for
being healthy?
They express feelings of injustice due to the preferential treatment of their parents to the
disabled son by saying: “They always back him up”. “He makes a fuss and they don’t tell
anything to him”; “They always say all that happens is my fault”; “He goes to my bedroom,
takes out everything and they don’t scold him”, etcetera.
Some testimonies provided from children, (from 6 to 9 years old), participants of a group,
assure the rivalries and jealousies presented in this fraternal relationship.
Matías: My little brother is always asking for expensive things and they buy them. I ask for
cheap or expensive things and they never buy them to me. He always gets what he
wants.
25
Mariela: the same happens to me. My grandmother buys things for him, anything to me
ever.
Diego: A wealthy friend of my dad bought a pair of shoes to me, but a big high fidelity
equipment to him.
Javier: They bought a plane to me that crashes easily, and they bought to my little sister
the one that can be inflated and real works.
Giselle: I was playing with my computer. My little brother was playing with a broom. He
turned and kicked himself; he got a big bruise and my parents blamed me, but I was with
the pc. Mum doesn’t treat both equally.
Andrea: Once, I was playing to chase him. I had to catch and carry him. He turned
around, there was a door, and he ran into it. My parents said it was my fault. It is not
good!
The fragment from a group exchange of children from ten to fourteen years old contribute
with reflections equally aimed.
Macarena: When my brother is playing a game and I ask him “Can I play?” and he
answers “No”. So, I tell my mum, but she doesn’t say anything to him.
When I am playing and I say “No”, he goes and tells mum; then, she obliges me. It isn’t
fair! My mum makes differences between him and me. He is her favourite son.
Fabián: For example, the same happens to me when we are in the car. My sister sits
always in the front seat and I say: “Mum, can I go there?” and my mum says: “No, I don’t
want her to cry”.
26
The potential attitudes of unequal treatment between their sons can lead to a competition
between siblings and be font of feelings of jealousy, rivalry and injustice.
The hostile feelings towards their sibling increment the guilt that drives them to
demonstrate contrary attitudes, for instance, cordiality, excessive goodness or assistance.
If the sibling has the possibility of expressing and sharing these negative feelings featured
in the fraternal link, and common to all siblings` relationship, will help him not to feeling he
is a “bad guy”.
The pressure: the result of responsibility and exigency
All testimonies we have transcribed, show parental and overprotecting attitudes towards
the disabled person, who is exempted from the fulfilment of responsibilities, while the
other children are overloaded with exigencies. Siblings from “L Family” say: “He is not
obliged to do anything”. “He never does any housework, he is always playing with the pc
or watching TV and we have too many responsibilities since we were very young”.
The sibling is forced to assume responsibilities by putting him in the place of an adult
person since he is very young; he has to grow up abruptly and to resolve things by
himself, while other children are supported and accompanied by their parents.
Somebody falsified my birth certificate. I began and finished 1st year of elementary school
at the age of 5. It was so good because I graduated when I was too young, but that
situation led me to relate with persons older than me. Obviously, my parents didn’t do it
on purpose, but –unconsciously- they contributed to my premature growth.
(Graciela, 32 years old)
Since I was very young (I think I was 7 years old), I manage to travel by bus for going to
school alone. I also went to English classes alone and it was ten blocks far from home. I
always did my homework alone. Nobody at home checked on my notebooks. Once, I
signed my report card… mum had forgotten.
(Fabiana, 35 years old)
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The non-disabled child also assumes many responsibilities since a young age as care
and attention of his disabled sibling and he acts with a greater maturity. In these types of
families, it is common to hear things like “Go and see what he is doing”; “Help him”.
In the fragments below, you can find references to these familiar exigencies with respect
of the sibling care. These are extracted from a reflection moment of a group of children
from six to nine years.
Florencia: Why should I play with my brother if I don’t like it? They always interrupt me
when I am doing something to play with the ball with him.
Coordinator: Who interrupts you?
Florencia: My brother and mum. Agustín wants me to play with him and so does mum.
Sometimes, I don’t want to and I have to do it.
Matías: It also annoys me when I have to give up my homework to care for him.
The testimonies of other adolescent siblings, who have integrated a reflection group, also
show the overload of responsibilities which fall over their shoulders, many times as a
consequence of an explicit paternal delegation, other times assumed by own exigency.
Néstor: My mum always says to me that I am the only male child and that I have to take
care of my sisters, especially Marina (the deaf sister). I am always with her; mum says
that I am the only who best understand her when she talks and that I have to take care of
her when she goes somewhere, because sometimes people don’t understand her and
she feels bad.
Gastón: Whenever I go to the cinema, I have to bring him with me; if not, I can’t go to and,
once we are there, we don’t attain to arrive that he stands in front of an ice-cream parlour.
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Ricardo: I am worried that children put my brother aside; he is very kind and he has
feelings… Many times, children put him aside and I have to go and tell them he has also
to be in the group. I am really worried about it and I always keep an eye on him. It
happens at leisure times; he is at the same school that me and, at breaks, I watch him in
order not to leave him alone. Due to the fact that he finds it difficult to do fixed things,
children don’t want him to play with them.
Gastón: I have to go with him to my friends´ birthdays because they already know him.
Not many times can I go alone. I have to stay next to him and care for him. Sometimes, I
am worried when he is with one of my friends because he turns tedious and he begins to
disturb… sometimes he spits out and pulls their hair. Almost always I am tired.
Coordinator: It is tiring to be the protector of siblings!
Gastón: But the worst thing is that my parents say that I am never with my brother, that he
is always alone. The reason is that they are never with him and they can’t realize I am the
only one who spends all day with him.
Marcela: To take care of my sister doesn’t disturb me. But she annoys me when she
becomes fanciful. Parents may think I am not taking care of her correctly and they accuse
me.
Generally, parents consider the non-disabled child as a “mature”, “self-governing”, “adult”
(despite he is younger than the person with the disability) person, a person “capable of
understanding and reasoning” and “capable of caring for and protecting his sibling”. Many
times, it occurs in a premature and excessive way, in relation to the real wishes and
possibilities of this son. That is to say, the abilities of this son (in comparison to the
disability of the other one) seem to be overestimated and, therefore, he is over demanded
in the fulfilment of the many responsibilities.
On several occasions, the sibling himself is the one who demands himself an excess of
responsibilities for fulfilling in and out of the family.
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Over demanding, in respect of the care of the disabled child, is expressed in Lucia’s letter
(shown further on) when she assures:
So, I got in charge of her so-called suffering and I decided to protect her against “people
and this threatening world”.
At the very beginning, I pretended to be like her. When I was in front of the mirror and I
would make my eyes slanting to look like her. Thus, it would be easier to be next to her or,
even better, “inside her”. I absorbed her and walked before her step, covering each well
which may appear as a difficulty.
I adopted a defensive position, everybody was an enemy. Not only her enemies, but also
mine… I was her saviour. I felt she was unable to endure frustrations, to be happy with
her fate. I left many things aside in order to accompany her. This dependence was
growing and our relationship was restricted to an excessive care on behalf of us. Neither
of us could be herself. We would hinder that to each other. This situation took many
years.
The consequence of these excessive cares may be the image of a defenceless, helpless
and suffering sibling, in front of whom the other sibling has to appear as a “saviour”.
In other occasions, the guilt is the antecedent of assuming the weight of the many
responsibilities or of identifying with the disabled sibling in such a way that limits lose.
Furthermore, other reasons may be present behind exigency and renunciation.
Upon considering their own strength, adult siblings, who have participated in the
workshops, pointed out that -since childhood- they were very fighter, demanding,
persevering, over adapted, supportive, and always ready to take in charge of other’s
problems, etcetera.
The direct words of many of them are very eloquent:
Since childhood, I was delighted in doing things for others. It is possible I have overlooked
my own things.
(Antonio, 35 years old)
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At school, I am always helping everybody with the homeworks. I lend everybody my
things… I hear the problems of my friends, I advise them in order to make them feel
better. I, rarely, ask for help. They don’t know how I feel.
(Vanesa, 10 years old)
Siblings are needed of an adult person, who allows them to slow down the autoexigency and to help them to realize they have the right to look after themselves.
The difficult issue is to find a point of balance between the over-exigencies with an equal
fate with the disabled sibling and the renunciation to the own life or the restraining.
I am worried about my brother crosses the street just when a van is passing.
(Juan, 6 years old)
The sibling feels alone, isolated and neglected
In other circumstances, parents adopt a behaviour of overprotection towards the nondisabled son, being exempted of responsibilities and preoccupations about all the daily
activities which demand the disabled son’s attention.
Siblings are not offered explications about the situation of the problematic of their disabled
siblings. The thematic of the disability is established as a familiar secret.
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In this case, adults are the ones who are able to handle information and who are in
charge of all nursing responsibility. The non-disabled son feels uninformed, isolated and
confused. He is not involved in any issue, assuring that it is the best way to keep him out
of problems that come from the complicated familiar situation. This paternal attitude does
not favour the establishment of a fraternal link.
I didn’t understand which the real problem of my brother was. I thought he would get well
because he was always going to the doctor and other specialists. He had to carry out
many treatments, and I was never involved in. I was totally isolated.
(Sebastián, 57 años)
My mother always looked after my sister, Fátima; when my mum died, I realized I didn’t
know anything, even the names of the doctors and the medicine she took. It was a very
hard blow. Suddenly, I had to assume all this responsibility… my sister was an unknown
person for me.
(Beatriz, 41 años)
These stories are repeated over and over again. They show common situations about a
sibling who is kept out of all demands which fall on the family and are referred to the
disabled son’s attention.
The concern for keeping mum and dad happy.
Since very young, siblings recognize the familiar climate of concern, anguish or sadness.
They feel that parents are vulnerable and “not very happy”; therefore they assume
conducts in order to make happy mum and dad. They are exposed to carry the weight of
supporting the parents. They seem to be motivated for fulfilling the heroic mission of
compensating them, because of the hurt and pain they feel, by means of constant
achievement and satisfactions.
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So, they are introduced as mature, competent, responsible, brilliant, intelligent, good
pupils and glad children. In other words, we can call them “splendid children”. They do
everything by themselves, they don’t try to disturb their parents in order not to pass on
them their worries and difficulties, they don’t want to worry parents, under the idea they
have “too many complications with their disabled sibling”. They are proud of showing
attitudes of “no disturbing” and proud of making their families happy.
In answer to a topic we have established in the groups to reflection about the positive
aspects of themselves, children and adolescents say repeatedly: “I’m a good pupil”, “I am
studious”, “I behave myself at home”, “I help my parents”, “I take care of my brother”, “I
like my parents being happy”, etcetera.
This place of “a son who gives us satisfactions” has the motivation of the high level of
expectative that parents place their trust in him, searching for compensation of all that
things the disabled son can not offer to them.
I remembered that once I got a “10” in all subjects at school; it was so important for me! I
run very quickly in order to show my mum my report card; she was so happy because
Lucas had done an exercise well. She didn’t dare to see my bulletin.
(Martina, 29 years old)
Among the proposals that a group of children, from 6 to 9 years old, propose to their
parents, appears the following idea: “Don’t ask us we get a 10”.
A group of adult siblings advices parents: “Don’t hope the non-disabled son make those
things the disabled child can not offer to you, he can not compensate the dissatisfactions
the disabled son produces in you.
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34
The child feels good when parents enjoy the life
Adult siblings’ testimonies.
Magalí: I was always worried about my mum’s life. She has dedicated all her life to my
sister and she could enjoy neither her life, nor my life.
Estela: My mum has also relegated many things in order to stay with my sister.
Matul: The same happened to my mum.
Juana: I think that the worse thing that happened to us was the situation of no enjoying a
mum who enjoys her life.
Rafael: The same happened to my siblings and to me. We have never seen my mum
enjoying her life, except in those periods when my sister felt good. I think my sister was
the thermometer of my mum’s frame of mind.
When siblings remember the parents of their childhood, they assure they would have
needed of parents who enjoyed the life.
For children, it is a relief to know that parents find some font of happiness in their life that
doesn’t refer exclusively by whom they are or by what progenitors do. This is what
exempts them from strength of doing things in order to make them happy.
Besides, it is a font of constant worry the fact of seeing their parents unhappy, product of
the disability of their sibling. Many times they can not mitigate with this pain.
Generally, there is a reference of “an unhappy mother”, more than the figure of the father.
They remember a type of mum that has sacrificed herself, has renounced her life and has
sacrificed herself by her disabled son and has limited of searching for reasons of
enjoyment and own happiness.
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In a psychotherapeutic individual session, Analía tells an infantile memory that still
remains in her mind, although she is now forty years old:
One day, my mum, Martín, my disabled little brother and I were in Mar del Plata. I was
about eight years old and I remember that mum –looking at the sea- said: “In order to
finish with this suffering, I would jump into the water with your brother, with the condition
we die at the same time.”
Imagine how I felt. I was very young... she knew I was there, but she acted as if I wasn’t.
My presence didn’t give her any motivation for her life.
In all these statements about life experiences is an interrogate latent: Do or did I mean
anything to my parents? Is or was my presence a motive of happiness? Or, like Analía
assures, “My presence didn’t give her any motivation for her life”.
Doubts related to the love of parents
In the abovementioned stories, the constant doubt is if these siblings are really loved by
their parents or if there is only a place for the disabled son.
My parents don’t love me at all; they are always with my brother.
(Martina, 7 years old)
I got good marks and they don’t pay attention to me, but he does something well and they
immediately congratulate him.
(Sandra, 8 years old)
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Mum doesn’t check my folder. She is always doing the homework with my sister. She
loves her more than me.
(Favio, 8 years old)
Many times, siblings are accustomed to interpret that the especial attention and care that
the disabled child receives is consequence of a lack of affection towards them.
They have many doubts; they are conquered by the feelings of being not love.
In some occasions, the sibling can feel that he doesn’t achieve the required paternal love
due to the fact that he is “not good” and, therefore, worthy of it.
The following picture is a picture from a child of 9 years old. The instruction was to draw
his family. Note that he is not included, while Felipe (the disabled child) is putting in a
preferential place next to their mother.
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Among proposals brought forth by siblings between the ages of ten and fourteen years
old, appears the following: “Show us your love to us; perhaps you do love us, but you
should demonstrate it clearly”.
A group of adult siblings suggest –among others- the following: “Externalize your love for
him (referring to the non-disabled child); he needs it. Do not let him bring into an
emotionally disabled child”.
In connection with this search for signs of recognition and affection, comes up a claim to
share exclusive moments with them. This is usually taken as a proof of love: “If my
parents want to be with me is because they love me”.
Several adults –when remembering their childhood- quoted the following:
I remember that, in my childhood, I never had the chance to be alone with my parents,
say, share exclusive moments with them. There must always be someone at home to take
care of my brother; he cannot be left alone. Therefore I could never go out with my
parents because if my father stayed at home, I could go out only with my mother; And if
my mother stayed then I could go out with my father. Never both together. I have always
doubted whether my parents wanted to be with me or not. I thought they did not love me.
(Mirta, 56 years old)
I never had the chance to be alone with my mother, and I enjoyed it so much being with
her, talking to her about my problems, going out and being accompanied by her. But my
mother would always stay at home looking after my sister; my father, instead, never faced
the challenge to stay alone with my sister. I still doubt if my mother liked being with me or
not…At least, she never showed it to me.
(Susana, 37 years old)
The sibling needs that their relatives devote exclusive time to him, not leftovers.
He cries out to spend time solely with his relatives, and not always in the presence of his
special sibling as well.
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Why those guilty feelings?
The egocentric attitude of younger children may lead them to think that their siblings
problem –even when they do not know exactly which the problem is- is due to something
wrong they have done; for example, if they have hit him, or have had evil thoughts in
connection with him. They usually feel guilty -since a very young age- towards their
differently abled sibling, or towards their parents, whom they apprehend as sad and
worried.
When I was a little boy, I used to feel guilty for my brother’s disability. On the one hand, I
knew it was not my fault because my mother always repeated that to me; but, still, I felt he
could have been healthy if I had treated him differently.
(Gerardo, 51 years old)
As they grow up, this feeling of guilt comes up also when they realize they have skills that
his brother lacks. This guilt is for being the “healthy”. They ask themselves –overwhelmed
by guilt- “Why does he have to go to a special school?” Is he going to get better?”
Siblings feel the necessity to be reassured that this disability is not related at all with
anything they did or failed to do; still, this external reassurance, just like Gerardo feels,
may not relieve this guilt. .
The other day I went to a party. My friends picked me up at home. As we were leaving I
noticed how Carlitos was staring at us; and I felt pity for him, because, owing to his motor
dysfunction, he will never be able to go dancing.
(Brian, 16 years old)
The more goals you achieve, the more it is emphasized what the disabled sibling cannot
do; and guilt brought about by these achievements grows. Siblings usually sabotage their
own achievements to alleviate their guilt.
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Sometimes, family members themselves may minimize opportunities to their kid -with no
limitations- so that the disability of the other child does not come into spotlight and also to
dwarf differences; thus, as it seems, they blame him for his achievements.
Once we were consulted from a family with 6 year old boy twins; only one of them was
deaf. Parents preferred both children to enter first grade together, not allowing the healthy
child to enter when he was supposed to, so that his brother would have time to gain more
language and finally both could enter at the same time; thus, the deaf child would not
suffer to see that his brother is ahead. The healthy brother was burdened with guilty
feelings for having skills that his brother lacked. Other times, guilt comes over when they
feel they are not doing enough things for the brother and consequently suffer from this.
Sometimes when I watch TV or play with the play station, and not play with her, then she
feels lonely and bored.
(Mariana, 10 years old)
Adolescents and adults feel overwhelmed by guilt when facing situations of detachment
and setting apart from their family.
It is taken for granted that these feelings of anger and rivalry surfacing in this fraternal link
are accompanied by guilt. It seems as if the child would reproach to himself “how can I be
so bad with my disabled and limited brother!”
Sometimes I get mad with my brother and I punch him. The same thing my friends do with
their siblings (not disabled). But then I feel terrible…I think perhaps I am doing harm to
him and I am a bad brother…Although he fights back, he is stronger than me.
(Dario, 13 years old)
Parents usually contribute to these feelings of guilt by spoiling them or blaming them for
something they did or failed to do.
These are general, steady claims in testimonies of children from 10 to 14 years old.
In the end, I’m always blamed. It seems as if it were always my fault and it is not so.
(Sebastian)
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They always tell me: It’s your entire fault.
(Macarena)
It does not bother me to look after my sister, but it does bother me when she gets
wayward because my parents my think I’m doing something wrong and therefore blame
me.
(Marcela)
(Julián, 8 years old)
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How many feelings awake when exposing the sibling to the outside?
Group testimonies of children from 10 to 14 years old.
Mauro: When people look at him on the street I know they think he is ugly… I see their
faces as they pass by; they watch him carefully and stand staring… That hurts me
because I reckon they set him aside and discriminate him. Other times some kids call him
“drool boy” because saliva licks from his mouth involuntarily, so I have to face them and
ask: why have you said that to him??
Marcelo: It upsets me when kids call my sister “half-wit” and I have to buffet them.
Anita: My friends already know she’s special, so they don’t call her half-wit.
Christian: It happened to me once that my sister was called “retarded”; I didn’t like it, so I
hit those kids. They never called her like that again.
Diego: Sometimes some kids – older than her- hit her and take advantage of her problem.
Matias: I had a friend who, although I didn’t notice, would always take advantage of my
sister. Whenever she had a soft drink, he would take it away from her; the same if she
was eating sweets. Or he would make this rude gesture to her (goat sign), which makes
her cry because she hates it; so when I turn around he would make that gesture and my
sister cried –of course I didn’t notice-. One day, I was keeping an eye on him and caught
him doing that gesture, so I punched him and now we are no longer friends.
Sebastian: If our friends mock our brothers or sisters, then our parents should talk to kid’s
parents.
Children to 6 to 9 years old made up a group of siblings shared similar reflections.
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Ana Maria: I don’t like it when people look at him, or when they look at him and tell me
things about him every time we go out together.
Coordinator: Do you feel upset if people look at you?
Ana Maria: Yes. And also if they look at him.
Mauro: It annoys me when- at the neighborhood- they fight with him.
Diego: I get very sad… When go somewhere and people look at him and pull faces.
Sebastian: I don’t like it when people use the word “handicap” contemptuously.
Leandro: Let’s suppose you are with friends and you crack a joke but they don’t consider
it funny… Then they call you “dumb” or “retard”. Many kids use that term as an insult and I
don’t like it.
People, external to family, have different reactions: they stare curiously, ask, mock, they
may take advantage of the disabled defenselessness, and discriminate against him.
These reactions create a source of varied emotional responses on siblings.
Sibling’s responses to the outside world may be, among others: shame (when exposed to
the other’s prying eyes) and fear towards pity or mockery.
The child not only feels ashamed of his brother’s physical appearance, but also of his
behavior: tantrums, shouts, impulsive behavior and other disrespectful attitudes.
Many times the sibling thinks that everyone else may suppose he/she has a disability as
well, like Carina (11 years old) expresses:
The other day we went to a mall. Alejo threw a loud tantrum because my mother refused
to buy him a candy. Everyone was staring at us. I wanted to vanish, to disappear off the
face of the earth because I thought everyone may think I am just like him, or maybe they
thought: “Poor girl, how unfortunate she must be for having a brother like that”.
Shame may restrain the sibling when it comes to introducing his/her sibling to his/her
school mates.
In any case, he becomes the great defender of his brother whenever he grasps any signal
of mockery or discrimination. Therefore, he resorts to confrontations, scolding, insults and
even punches.
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(Jorge, 16 years old)
Ignorance, doubts, fears and uncertainty for lack of information
Generally, when we ask the children about their sibling’s disability they do not know what
to answer or they properly name the disability but cannot really explain it.
My sister (she has Down’s syndrome) has a heart murmur.
(Anita, 7 years old)
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I do not know exactly what he has; my mother told me, but I do not remember.
(Cecilia, 8 years old)
My brother is unable to walk, but I cannot name his illness.
(Rubén, 8 years old)
This lack of information is not only brought about by children, but also by teenagers.
There are many doubts and worries revolving around limitations, causes of limitations,
treatments and prognosis.
We came across children with information deficit, or who fail to understand explanations.
Mauro, 31 years old, tells us:
Now that I have grown up I realize that nobody ever explained to me carefully what my
brother’s problem was. When I was told he was a differently abled person I thought he
would recover. Only when I was a teenager did I understand the reason of my brother’s
disability by reading a Biology book at high school. It would have been great if someone
had explained to me what Down’s syndrome is, and many things would have been easier.
45
46
Family members, sometimes, may not provide information in an attempt to protect the
child.
Occasionally, they feel so overwhelmed with duties and obligations (demanded by the
disabled son) that they do not seem to find the time or energy needed to explain things or
clear up some doubts.
In other occasions, they are willing to provide information, but they just do not know how
to do it.
Other several times, they have talked to the child in some opportunity, but they have not
refreshed it. Several families handle this problem with the commandment –more o less
explicit- “we do not talk about that”. The disability is therefore set as a taboo that seems to
be just like a fantasy, meaning things we do not talk of, do not exist.
I observed that my parents always went out with my brother, from one doctor to another.
My house was a mess. I was always left alone with the maid. Everything had changed at
home and nobody would explain what was going on, neither did I ask. And time went by,
in silence.
(Mario, 37 years old)
The issue is shown by the lack of information which leaves children alone and
overwhelmed with personal interpretations set up by few elements seen or heard. They
may become individuals extremely controlled by a bunch of fears which do not mesh with
reality.
Younger children, as a consequence of the lack of information and of difficulties in
comprehension related to the egocentric thought –nowadays in force worldwide-, usually
make wrong interpretations on what his/her sibling has.
It is frequent to find, among these misinterpretations, the fact that children are afraid of
being infected by his/her sibling’s problem.
Children learn –from their every day experience- that they are exposed to several
diseases which may infect them; therefore, they draw up some conclusions: The disability
47
may be acquired by infection; as a consequence, they feel they are prone to get infected
and thus become deaf, blind, or have a motor disability, etc.
Lack of information, besides, leads children to fear his/ her death or to fantasize about a
magical recovery.
In view of this information deficit, many kids remain passive while others start seeking for
information so as to clarify and understand what is going on, like Gladys remembers:
My sister’s first psychotic behavior coincided with her menarche at the age of 12. I was
about 11 years old and I knew something was wrong because my mother was crying all
the time. I felt the need to understand what was wrong…I remember that I rummaged
through my mother’s papers until I found my sister’s clinic history record…That was the
first time I ever read the word “schizophrenia”.
Undoubtedly, children need to be informed on their sibling’s disability, the effects of this
latter and on their sibling’s future education.
A high percentage of parents attending workshops, answered that they have only
provided information to their children when they asked straightly.
Occasionally, siblings request information from adults performing unclear questions with
underlying messages. Therefore, we come across the issue of “how many times siblings
request information but adults fail to provide it” It is clear that we should be alert to answer
these evasive concerns.
The information kids handle will be useful not only to clarify their own concerns, but also
to answer questions by strangers, friends, schoolmates, etc.
It is beneficial for these sibling’s development to be accompanied by attentive and
understanding adults, who will eventually be available to offer proper answers when
required.
It is essential to measure the amount of information, adjust it to each stage and
progressively renew it and bring it up to date, noticing that, as the child grows, new doubts
and concerns arise.
Adults should be alert to masked requests (not performed straightly) of information by
children.
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Children are lost out by concealment or deceit with relation to what is going on. In order to
understand a particular situation and adjust to it, every child needs to know reality, that is
to say, he requires real and clear information.
Concerns about the future
Even though concerns about the future usually show up in adolescent and adult siblings,
we have registered that several young teens have worries about that stage of life without
their parents.
Foremost, I fear what may happen when my parents pass away. What shall we do then?
My mother has left her the best house, which is located in the city. The rest of us have two
other houses to divide among ourselves. My mother left her this house so that she can
live there with her husband; they have been dating for two years now. Her boyfriend has a
house too.
I am worried because no one looks after them; they are both deaf and if someone breaks
in they will not hear it.
Nowadays everything is fine because mom and dad are alive, but I do not know what
might happen later on.
I think, as a last resource, they may leave together with me…I can get a room for them or
build a house at the end of my yard so that they live there. I don’t know I am afraid of the
fact that they may be alone and neglected.
(Nestor, 14 years old, brother of a young, deaf, 17-years-old girl named Vanesa)
These concerns about the future increase when facing the fact that parents overprotect
the disabled child so much that he/she is raised beneath his/her possibilities and therefore
parents are not preparing him/her for the future. In the last interview of family L., Karina
told us:
“They overprotect him, and make him useless. He can do more”
The following testimony is also eloquent:
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My mother takes care of him as if he were a baby…How will I handle this when my mother
be no longer with us? Will I have to do everything for him?
(Luli, 13 years old)
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Personal enrichment and learning provided by experience
The following experiences bear witness to this enrichment kids feel when facing adverse
situations.
A group of children -between the ages of 8 and 9 years old- reflected on the following
manner, when asked about learning left by the experience of being siblings.
Rubén: Thanks to my brother, I have learnt to further understand different persons owing
to the arduousness of having a brother like mine. Consequently, I can now understand
many persons that have problems as well.
Coordinator: Ok. So, you have learnt to listen and understand. Now, what did you learn to
hear from people? What did you learn to understand?
Macarena: We have learnt to help them with their problems. Perhaps there is a kid having
problems with his/her disabled brother/ sister. We have learnt to help everyone who has
problems, advise them.
The following words –by several siblings- were collected from various sources and own
great testimonial value, which we will share with readers:
My brother has a problem in his feet and so he cannot walk; he needs a surgical
appliance. He taught me not to bother disabled people.
(Nicolas, 8 years old)
My brother is deaf; he taught me how to play with the Play Station.
(Sandra, 9 years old)
“I have learnt not to say “retard”.
(Dario, 9 years old)
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I used to mock children with disabilities until I put myself in their place and I realized that
they are individuals just like me. I no longer mock anybody.
(Sebastian, 14 years old)
My sister taught me to be patient; I have learnt to have patience with people in general.
(Mariela, 13 years old)
If it were not for my brother, I would probably be today a flashy guy, only interested in my
trouser or car’s make. He taught me values, other than material ones.
(Alejo, 14 years old)
My brother taught me, by exemplifying himself, to carry on in spite of problems. He lives
with it, he does not complain about it, he is brave and has strength…Besides, he is
always in a good mood.
Furthermore, I think our siblings –beyond vexing moments we may have- taught us to
love.
(Guadalupe, 15 years old)
My sister showed me how to pull myself upward –whatever may come- by my bootstraps.
It is hard for her to perform certain things, but she succeeds in doing others. For example,
It ain´t easy for her to talk, but she is a great swimmer, and she is also able to perform
many things she likes. She taught me that whenever you are unable to do one thing then
there are –for sure- other things you may be able to do. Therefore, everyone can do
things, and we should do our best. She taught me not to think on those things we cannot
do. I have also learnt to cherish all I have and what I can do; I can talk well and I can do
things she cannot. I have learnt, thanks to her, to respect myself.
(Magalí, 14 years old)
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Unarguably, a clash with a harsh situation in children’s life allows them to win out enriched
and fortified. Experience shows the ability that children have to transform frailty into
fortitude.
The fact of having a brother with such disability signified a strong clash with difficulties; it
was just as if I had prepared myself to live my life as an infantryman. I have hoarded so
much out of this experience instead of coming to a standstill.
(Hugo, 38 years old)
We experience every day this “amazement at meeting children overcoming adversity”,
says Cyrulnik. These life-stories account for “triumph”, adds the author.
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The expression of emotions
Parents endeavor to bury their feelings -in regard to the situation their family is going
through- and appear themselves strong and cheerful as if things were all right.
Habitually, the abled-bodied son apprehends this message of stealth and concealment of
emotions: “You should not be ashamed of him” “Why are you jealous of him? He needs
us, and you are the healthy one. ““He breaks your toys because he does not understand
that it is wrong, you should not get mad at him, try to be patient”
Nonetheless, this disclosure of different experiences is not a sign of weakness, or of being
bad parents or siblings.
The possibility to express themselves and share feelings within the family has a crucial
meaning with regards to its member’s health, and foremost, to the disabled child.
Sibling’s words contained herein allowed us to deepen our knowledge about their inner
world, which is conquered by profound ambivalent emotions (as in every sibling’s bond);
though, perhaps more intensified in this case.
There is love, also anger. There is jealousy and rivalry, and also profound feelings of care
and concern for this sibling, who is viewed as a very defenseless person.
There is shame in the face of the public eye, and fierce strength in the presence of any
sign of external discrimination.
The family carries the burden of many responsibilities; but, on the other hand, feels
gratitude for the wealth and knowledge –on human values- gained.
Usually, these siblings face situations not experienced by other kids: Mockeries,
monikers; they cope with people’s curiosity; they answer questions to schoolmates on the
matter; they shoulder the whole burden of having many responsibilities other kids do not
have.
This emotional world of special experiences needs to be exposed without dramatizing, nor
minimizing it. It needs to be shared –far better if within the family, because family
members go through similar situations every day.
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Every time the sibling feels these emotions and experiences deep inside -foremost those
negative emotions- he burdens himself, feels fear and also guilt. He may consider himself
“a bad brother”, “a bad son”; in short “a bad person”.
There again, hidden anger, sadness and shame accumulate, poison and unleash different
psychic and physical problems.
It would be so relieving if he could understand those feelings as ordinary!
It is essential that family members give him the chance to talk about these feelings,
express them, share them and, thus, handle the situation and face it.
Our parents have always given us their support so that we could talk about what we felt.
They have also shared with us their feelings of sadness and fear…However, now I realize
that they have not burdened or overwhelmed us; we need not be their psychologists –as I
have noticed that happens in other families. After talking with them, I felt relieved. (Esther,
32 years old)
These sibling groups offer the facility of sharing their experiences, feelings –common to all
of them-, and foremost, of knowing that they are not the only ones going through that.
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Siblings support group
Our experience –as coordinators of many workshops and siblings groups- allows us to
emphatically affirm that these spaces have the potential to:
*Meet other siblings of differently abled persons.
*Talk, share stories, anecdotes, life experiences, laughter, joy, sadness, challenges,
anger, shame, etc. They realize that they may build bridges with other siblings –feeling
the same way- and who are well aware of the pros and cons of having a disabled
brother/sister.
*Express and reflect on feelings connected with every family member.
*Legitimate feelings.
*Relieve siblings from the burden of “being the only one in the world dealing with this”
*Diminish the feeling of loneliness by becoming aware that other people go through the
same situations.
*Have access to information and valuable advice which further helps to relieve them, or
makes it easier to funnel various concerns.
Siblings attending these reflection workshops –upon the end of this experience- reviewed
this process. Children’s observations are detailed below:
Children between the ages of 6 to 9 years old.
“I’ve enjoyed it a lot. I have come here in the first place to find a solution to my brother’s
habit of throwing things away.”
“This experience has been very useful because now I will try to take care of my brother.”
“I was very keen on coming here.”
“We have heard much about how disabled kids usually behave.”
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Children between the ages of 10 to 14 years old.
“It was a cool idea to think carefully on this matter. I’ve enjoyed the jigsaw puzzle game
because I’ve realized that we have to seek for solutions, they won’t fall from the sky. I
have also enjoyed expressing my rage.”
“I am very satisfied with this experience; the group was great and we all have similar
thoughts”
“I liked it so much because I met kids like me”
“This has also helped me to meet kids like me; I have had the chance before to meet kids
like me, but not in this way…It is great to know this is not only happening to me, and it is
not that serious to have a disabled sibling.”
“The worthwhileness of this group lies in finding solutions to our problems. Perhaps other
kids –who have the same problems that me- already solved them…Thus, they can help
me. I also liked it because I have become aware that I am not the only one dealing with a
disabled brother.”
“There are things you cannot share with your parents because you feel ashamed…But, in
this group I have felt so comfortable. Perhaps due to the fact that I do not know the kids,
or maybe because I reckon they will not remember everything I’ve said.”
“This has been a useful experience because I have realized that I am not the only one
who has to cope with a wayward sister.”
“I am so amused by this group, mostly because we have gained confidence in one
another and shared our stories. We have released tension, we have realized everyone
has different problems and we have learnt from each other.”
“These workshops gave us the chance to talk”
“It does not happen every day to meet other siblings of differently-abled children.
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Adolescent and adult siblings
“I was feeling so down…And this group strengthened me insofar as I had the chance to
share my feelings, my anger, and my sadness. I usually do not talk to people about this,
but here I found people feeling the same way I do. I knew they would listen to me carefully
and without getting tired of my stories.”
“This has been an entirely great experience. I am very satisfied; I feel so good now
because I had the chance to get feelings off my chest. It is so relieving. And I met some
persons on which I can count on, right?”
“I don’t usually talk about my sister with friends, or anyone. In this group you can express
all you feel. When you leave you feel a sense of relief. You feel you have unburdened
yourself. Here you come across people going through the same situations as you. It is
much better talking to these people (who utterly understand you) than talking to your
psychologist, girlfriend, wife…”
“These groups allow you to narrate your stories. Listening to others and seeing how they
handle different situations helps you to learn from experience. Although not everybody
reacts alike to problems, and not everybody is concerned about the same issues, links are
built up between us. For this reason, I did not feel a “weirdo”; instead very comfortable.”
“I really liked this experience. I think we should continue doing this –maybe from another
point of view- inasmuch as we all take advantage from this. These groups provide relief
and support.”
We consider it necessary that these groups be supported by professionals, institutions,
parents, adult siblings or parents associations, inasmuch as these groups are so
beneficial.
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The voice of experience: proposals for parents in charge of “expert siblings”
The reader –having reached this point of the book- and who has dived trying to
understand feelings towards different challenges that the sibling faces throughout his
existence, may now be wondering how to help him in his development.
Our proposal –aimed at the readers of this book- is intended to understand the sibling and
accompany him throughout his growth in the best manner so that he can make the most
of himself.
Now, which are the tools to help him?
As we have done so far, we will quote sibling’s answers (main characters of this book).
On this occasion we will be guided with proposals and suggestions made by siblings from
15 to 60 years old –attending our reflection workshop programs- whom we refer to us
“expert siblings”.
These siblings were invited to cooperate in these parent and children workshops. They
personally read each piece of advice and talked about it, related their stories and
experiences in an attempt to prevent other parents from committing the same mistakes
their parents committed –maybe involuntarily, or out of ignorance.
Let them be the ones suggesting and advising other parents on how should younger
siblings be helped.
Buenos Aires, December, 2003.
Dear parents:
We are glad to assist parents and professionals so that they can help siblings in the best
way. The following list has been developed as a consequence of having a disabled
brother/sister and of our experience. A family is a team: we should all try to make our
biggest effort to bring good results.
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Siblings between the ages of 15 and 25 years old advise:
* Do not spoil your disabled child because later on he will get out of your hands.
*Teach your disabled child to be self dependant and self responsible so that he does not
become a burden to the rest of your sons in the future.
*Do not believe you are the only ones who can help your disabled child. Other people, not
family members, have also the ability to help. Do not pretend you are self sufficient
persons.
*Do not underestimate your disabled child.
*Your non-disabled children have the right to live their own life.
Siblings older than 25 years old advise:
*Do not expect from the healthy son what the disabled cannot do. He cannot make up for
the dissatisfaction brought about by the disabled son.
*Do not overprotect the disabled son, so that in the future he will not mean a burden to his
siblings.
*Do not place responsibilities in the healthy kid that he is not able to fulfill, or it is simply
not his job. Respect his age. He is not a father.
*Do not get support from him. Do not overestimate him: he is just a kid, not your friend,
not your equal, nor psychologist.
*Do not overprotect the non-disabled child. Do not keep him aside in relation with his
brother’s problem; let him play his part on the matter since early childhood.
*Get information about how to help –not only the disabled, but also the non-disabled child.
They both need attention.
*Learn to get resources to relax family issues. Do not focus your attention only in the
disabled child.
*Do not ever tell the healthy son: “sort it out yourself, you are the healthy child”. He needs
help as well.
*Offer him time quality when you are with him.
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*Love equally all your kids.
*Externalize your love towards the non-disabled child as well; do not let him turn into an
emotionally-disabled child.
*Do not hide your feelings; share them within your family. Do not censor your sons on
their negative feelings. Those also need to be discussed.
*Do not victimize yourselves.
*Do not allow your non-disabled child to feel guilt.
*Not all siblings accept easily the fact of having a disabled sibling, as you may desire.
*Help them overcome shame.
*Help siblings to build bridges among themselves.
*Do not burden them with your own anxiety about future.
*Draw up a plan for the future including him. Do not neglect him.
*Try to live your lives peacefully. Let your own personalities be unfolded. Be a woman, a
man, have a couple. Beyond your disabled child there is a life to live!
*Do not forget about them and do not forget about yourselves!
We hope these contributions be useful to you!
Expert siblings.
Some conclusions
As psychologists and coordinators of these reflection groups, we would like to point out –
from the list made by expert siblings- the following proposals:
*Create spaces for familiar and equals exchange.
*That adults be on the alert related to sibling’s concerns.
*Inform yourselves, grow, and learn to ask for help.
*Importance of time devoted to children.
*Draw up a plan for the future together.
*Preserve spaces of each member of the family to avoid the disabled son from taking up
all family energy.
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The letter of a sister
Buenos Aires, October 22nd, 1996
How did it all begin?
Joyfully! For welcoming at home a new sister. To my mind, the cutest in the world.
I was 6 years old and we were already 4 siblings at that time. When mom and dad told me
“she is different” I did not get the meaning.
Days went by, and I heard from a stranger, the word:”Down’s syndrome”. Although I did
not know much about it, I knew it was something serious. It was very shocking to learn
that in such a way and immediately I shut the door to the outside, exempting Inés.
Therefore, I got in charge of her and her potential suffering; I decided to protect her
against people and this threatening world. I feared so much that she may die, but my
parents explained to me this situation clearly: it would be harder for her to learn things;
she would be slower than the rest of the children.
At the beginning, I pretended I was like her: when I was in front of the mirror, I would
make my eyes slanting to look like her. Thus, it would be easier to be next to her, or even
better, inside of her. I absorbed and walked before her step, covering each well which
may appear as a difficulty.
I adopted a defensive position, everybody was an enemy: not only her enemies, but also
mine…I was her savior. I felt she was unable to endure frustrations, to be happy with her
fate. I left many things aside in order to accompany her. This dependence was growing
and our relationship was restricted to an excessive care on behalf on us. Neither of us
could be herself. We would hinder that from each other. This situation took many years.
Until I felt the need to really know who my sister was and also that she showed me her
actual needs.
Inés also wished and wishes differentiation from me, and be independent.
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As time went by we started to learn some things. Inés seeks for happiness –as the rest of
us. Inés is a very plain person; she does not question the complexity of life. She is so
humble and generous; always thinks about the rest and not herself.
And little by little we managed to keep each one’s distance; such distance links us and
enriches us.
Each of us is trying to live her own life.
Lucia.In the following blank space you may make a drawing or stick a picture of yourself (or with
your brother/parents, etc.) As this book is targeted at siblings, that is to say, it is mainly
yours; this next page is given to you.
(BLANK SPACE FOR DRAWING PURPOSES)
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Some activities for children and adults
We considered this book would have been incomplete if not including the following
suggestions of activities aimed at basic an objective: foster individual or group reflection in
view of the issue exposed all throughout this book.
Next you will find some orienting activities for kids, parents or both.
For adults
We suggest that –once these activities come to an end- you share what you have written
down with other members of family, other parents, and friends.
*What do you think about the title of this book?
*Do you find it difficult to impose restrictions towards your differently abled son? If your
answer is yes, reflect about how this situation affects the other siblings.
* Do you feel you treat equally all your sons, or you are more tolerant with the disabled
child? How does the healthy child feel?
*Analyze one concern your healthy child may have. Is there any link with the family
problem of the disabled child?
*How does the sibling behave towards his/her differently abled brother/sister?
(Overprotection-neglecting-aggression-shame-help-defense)
*Watch your child carefully and write down those feelings you consider are frequent on
him.
*How does he express those feelings: verbally-in his behavior towards you-towards his
brother/sister-towards other people-when he plays games-in his drawings, etc?
*Would you say your family spurs expression of emotions?
*If we turned to –specifically- the non-disabled brother/sister: would you say he/she has
the chance to express his/her feelings such as shame, anger, jealousy, guilt, and sadness
towards this issue of having a disabled brother/sister?
*Mention 3 needs of the healthy child you consider unfulfilled.
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*Have you talked to your non-disabled child on this matter of disability? What have you
told him? Have you talked to him/her once or several times? Has the kid asked questions
or made comments on this matter?
*Do you devote exclusive time to this child? If not, think (focusing on the fact that it is so
beneficial for the kid) how could you find those moments?
*Has this child had a chance to meet other children going through this problem as well?
*Has he ever attended any workshop or sibling group?
*From your position, how could you encourage and foster the creation of support groups
or other activities among siblings? Have you got information or researched about it?
*Point out –among proposals made by expert siblings- three you consider most relevant.
*Think about three new proposals to add, that you reckon will contribute beneficially to the
kid’s emotional growth.
We feature, in the last section, a list of movies in which it is exposed this issue of a family
dealing with a differently abled child, and specifically the fraternal relationship. We advise
you to watch them and reflect in view of what has provided to further understand the child.
For children
We suggest that an adult stimulates and accompanies the kid in order to perform the next
activities:
After they had finished, it would be wise to foster the child so that he shares thoughts,
what he has written down, or drawn together with other members of the family.
*Comment on three moments you recall feeling good with your brother/sister.
*Comment on three moments you recall feeling bad with your brother/sister.
*Yelling, it bothers me that….
In connection with my brother/sister…
In connection with my parents…
*You feel joyful when he/she…
*If somebody asks me on my brother/sister’s problem; Do I know what to answer? What
would I say?
*If I have any doubt concerning this issue. What must I do? Shall I ask my parents?
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*What have I learnt out of this experience of being sibling to a differently abled peson?
To share between adults and children
We suggest that these successive activities be performed in groups between adults and
children in order to favor reflections.
Read together with the child some of the testimonies featured in this book. Try to make
them work as a trigger so that the child can express and share his/her feelings and
experience. Set down if:
*The siblings feel at “one with one” of the testimonies.
*Comments on the reading: what does he/she say?
*Observe the pictures and drawings together. Try to make them work as a trigger so that
the child can express his/her feelings and experience. Set down if:
*The child identifies himself/herself with one particular drawing.
*He/she comments on that observation. What does he/she say?
Watch the family album together with the kid fostering his reflection.
Afterwards, talk to him so that you can get to know which family situations bother him and
what he considers should be done to get relief.
You may also read the book of short-stories by Marie Helene Delval (March, 1991) “Les
belles histories”. You may get it in A.S.D.R.A Association. We suggest that –upon
finishing the reading- stimulate the child’s deep thinking in view of the successive items:
*Which is Dudú`s problem?
*What does Lili feel about Dudú?
*What is that thing his brother does which gets her mad? What makes her happy? Does
she feel shame? What happens when she compares her brother to her friend’s siblings?
*Which is the attitude of the rest of Dudù´s siblings and his parents towards him?
What does Lili hope about Dudù´s treatment?
*Which are her reactions -and those of the rest of the family- against Dudu`s fatigue
manifestation? What do you think?
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*What do you think about the owl’s piece of advice?
Information of general interest
Films recommended to family members.
What’s eating Gilbert Grape.
Directed by: Lasse Hallstrom.
Gilbert Grape –main character- is a 24 year-old-young boy, trapped in a dying small town
of the US. He is a very routine guy. He has to look after his mother –a 500-pound-lady,
who has not left the house in 7 years and whose life is at risk due to her obesity; also his
brother, mentally challenged due to an illness, whose favorite hobby is reach highest
buildings in the town. Gilbert has two sisters as well, but they hardly help him. He takes
care of all since his father hanged himself years ago. Suddenly a young woman comes to
the town; she will change Gilbert’s micro world, in which his enormous heart had only
been devoted to his family till then. She brings hope and helps him understand there are
other different horizons to be discovered. This films portraits neglected human beings, but
strong enough as to face adversity, whose major salvation force lies in love.
My left foot.
Directed by: Jim Sheridan
This film is shot in Dublin, 1932, Christy Brown –the youngest of three sons- is born with
cerebral palsy. Although his father refuses to accept his son`s problem, Mrs. Brown
welcomes the child cheerfully within her numerous family.
Thanks to her mother `s faith and courage, Christy manages to demonstrate that –
although he is physically disabled- he is a warm, intelligent guy. Christy, by using his left
foot, is able to turn his words and images into great works of art and bestseller novels and
Poetry.
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This movie deeply features parent and disabled child bonding issue and also fraternal
bonds.
Majestically performed and internationally hailed, “My left foot” traces a touching and
optimistic real-life story; that of Christy Brown, whose passion and love for life won
through his tragic fate, which threatened to keep him aside forever.
The Eighth day
Directed by: Javo Van Dormael.
Harry is a yuppie, who has just divorced and Georges a young man with Down ´s
syndrome living in a health facility into which he has been assigned by his sister, after his
mother ´s death.
One day Georges escapes from the facility –mobilized by his certainty that his mother is
alive- to look for her; he only carries a suitcase. Harry comes across Georges and a
cathartic friendship begins.
In this movie, some touching scenes of this reencounter with his older married sister, are
featured.
Shower
Directed by: Z. Yang.
This is a Japanese movie that traces a story of reconciliation between a father and his
sons. The older child leaves home very young seeking for fortune to settle down in some
region of economic growth. Meanwhile, the father –keen on his old profession as owner of
a massage shop- remains in Beijing raising his youngest child -who is mentally
challenged. Driven by the thought that his father is now dead, the older son goes back to
Beijing; there he encounters his father again –who, finally dies- and his brother, with
whom will build bridges of deep affection.
Rain Man.
Directed by: Barry Levinson.
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Young Charles Rabbit, upon his father ´s death, finds out he has a brother whose
existence had been hidden from him. Raymond, has been institutionalized due to his
autism for many years. Charlie kidnaps his brother in an attempt to trick him out of the
money. They set out a cross-country trip of discovery which turns out to be an odyssey of
love and revelation and helps Charlie learn some valuable lessons of life.
This film pays close attention to the dynamic link between these siblings, one of the with a
disability. Academy Award for best picture, 1988.
The color of paradise
Directed by: Majidi Majad.
Summer holidays begin in Iraq, parents pick up their children from a boarding school for
blind. But young Mohammad remains alone, waiting for his father – a poor widow male
who works in coal mines. He eventually claims his child and returns to his village. In this
summer Mohammad begins a process of mature meditation on nature and life. His sad,
melancholic father is the absolute antithesis of the magical countryside, with fields full of
colorful flowers in which they live together with his grandmother and sisters.
The father would like to re-marry, but he reckons that having a blind child constitutes an
obstacle in his life.
The color of paradise is simply and masterly narrated; it features a vibrant photography
that captivates the beauty of the landscape, with which Mohammad feels a profound
connection (even though he is unable to see). Majidi expresses this union between this 8year-old-boy and the natural world surrounding him gently but in a strong way at the same
time. This Iraqi film also deals deeply with the link of the child with his sisters and
grandmother.
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Books
Jordi Sierra I Fraba, Caruncho, I: Mis hermanos y yo. Barcelona, Grupo Editor Fundació
Catalana Síndrome de Down y Grupo edebé. 2004.
Kew, S.: Los demás hermanos de la familia. Minusvalía y crisis familiar
Madrid, Inserso, 1978
Lobato, D.: Hermanos y hermanas de niños con necesidades especiales
Madrid, Inserso, 1992
Meyer, D.; Vadasy, P.: Sibshops. Worshops for siblings of children with Special Needs
Baltimore, London, Toronto, Sydney, Paul H. Brookes Publishing Co., 1994
Núñez, B.: El niño discapacitado, su familia y su docente
Buenos Aires, Grupo Editor Multimedial (Geema), 1998
Núñez, B.; Rodríguez, L.: Cuadernillo y video Nº 4: Los hermanos. Colección de
Cuadernillos y Videos sobre Temas de familia y discapacidad. Editorial Cendif, 1998
Powell, T.; Ogle, P.: El niño especial. El papel de sus hermanos en la educación
Colombia, Grupo Editorial Norma, 1991
Web Sites
www.thearc.org/siblingsupport
www.cshcn.org
www.seattlechildrens.org/departmt/sibsupp/
www.pasoapaso.com.ve
www.asociacionamar.org.ar
www.asdra.com.ar
www.aedin.org
www.fundacion.telefonica.com.ar
www.integrared.org.ar
www.cedd.net
www.mtas.es
www.discap.net
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The first edition of this book, limited to 5000 copies,
went out of print in June, 2004
in Artes Gráficas Buschi S.A., Ferré 2250,
Buenos Aires, Argentina.
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AMAR is a non-profit civil association, founded in 1974 by a group of
disabled persons´ parents worried about which the future of their sons
will be when they were not here. Its mission is to provide attention and
housing for disabled persons, support and guidance for disabled
persons´ families.
Telefónica de Argentina Foundation´s mission is to promote
improvements in the community’s quality life, mainly through the social
application in new technologies and communication, favouring the
equality of opportunities among persons.
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