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Chapter 13

From Global Concepts to Local Stories: Intellectual

Disability, Family and Resistance in Ecuador
Beatriz Miranda-Galarza

Abstract
The chapter examines local understandings of intellectual disability among Ecuadorian
families. It argues that a global imposition of concepts and definitions of disability have
blurred the local knowledge acquired in time and space by families. It also enquires
about the strategies that disabled families and their impaired members have developed
to negotiate, to accept, to reject or to confront global discourses that are present in such
a construction. Misinterpretations of family practices in the so-called countries of the
South have been globally disseminated creating the image of disabled families life as
linear and invariable. In this chapter, intellectual disability has been analysed as a local
construct that although it responds to professional, bureaucratic, moral and cultural
categories; a category of intimacy and mutuality could have been adopted by families to
resist a globalising process of professional domination. Consequently, more ethnographic research is needed in order to unveil the impact of global definitions on disabled
families and to rescue local knowledge and intimate experiences of intellectual
disability.

Keywords
globalization intellectual disability family Ecuador space time resistance

Introduction
For some, globalization is what we are bound to do if we wish to be
happy; for others globalization is the cause of our unhappiness.1

1 Z. Bauman, Globalization: The Human Consequences, Polity Press, Cambridge, 1998, p. 2.

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Defining globalization and its impact on the lives of the different species that
inhabit this planet is always a complex and conflictive task. Globalization
seems to be a well known or at least an identified concept by all. Defining it
and unveiling its roots and consequences appear less straightforward, as
Bauman poses. Nevertheless, it could be defined as
the intensification of worldwide social relations which link distant localities in such a way that local happenings are shaped by events occurring
many miles away and vice versa.2
In view of this, the idea that one could create links between theories of globalization and theories of disability would not sound that illogic but yet far more
problematic.
I grew up in Ambato, a small city located in the centre of Ecuador. When my
three brothers were born it was not imaginable for us, their family, to foresee
the impact of something that at home was simply understood as difference but
that in the public domains was considered as abnormality.3 As they grew up,
labels and diagnosis were put and removed on them by doctors and psychologists as if they were jars. The more connected with the international community
the professional seemed to be the more tragic and complicated the diagnosis
sounded. As years passed by I moved to the capital of the country to continue
with my studies. It was only at that moment that the concept of globalization
began making sense in relation to my brothers. I figured out the connection
between a globalized concept of disability implemented by organizations such
as the World Health Organization (WHO) or the World Bank (WB) and their
varied medical jargon spread in the field of rehabilitation and disability even
in small cities and in remote countries. Fortunately, I also became aware of the
inconstant, manipulative and exclusionary role that those definitions played

2 A. Giddens, The Consequences of Modernity, Polity Press, Cambridge, 1991, p. 64.

3 Three of my brothers were born with multiple disabilities ought to the conjunction of different
problems. Their medical records register a number of diagnosis, labels and terms such retarded, idiot, feebleminded and so on. These terms have been arbitrarily imposed and very
often have reflected contradiction and disagreement between professionals. The power of
professional language used by doctors, psychologists, social workers and therapists towards
my brothers has diminished their integrity as individuals and decided on whether they can
have access to public services or not. My mothers narratives, for instance, are plenty of countless times when doctors and professionals have given to her children the most diverse diagnosis. Similar stories can be found in the work of Jani Klotz, Susan Green, Gail Landsman,
John Ferguson and other disability researchers.

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in lives of people and that although we were placed in a globalized world there
were still local understandings of disability resisting but needed to be unveiled.
This chapter is an invitation to reflect on the relevance of those understandings that are commonly neglected by professionals due to the globalized usage
of concepts and definitions. Ecuador is taken as a case study and the analysis
of the narratives of twenty-four families from different ethnic groups will help
to build a body of explanation.
According to Bauman a determinant characteristic of globalization is
increasing compression of time and space, which defeats any battle of localities to remain untouched4. As effect, to know where something has really
started and how many changes it has provoked and where is a sort of labyrinth
in a globalized world. In the words of Appadurai this is a world of flows and
local experiences are inevitably invaded by the turmoil caused by a more and
more accelerated mobilization and circulation of information, knowledge and
species.5 However, despite the acceleration of research and the production of
knowledge, Appadurai warns us about what he calls the growing disjuncture
between the globalization of knowledge and the knowledge of globalization.6
This means, that a gap might have been created between a global process
thought as liberating and democratizing knowledge and the real possibility of
recognition and representation of every local community as producers of
knowledge with their own pace and own characteristics. To put it simple, not
everybody is recognized and legitimized as producer of knowledge and yet
there is a globalizing process of knowledge production. Appadurai baptizes
this phenomenon as an apartheid of knowledge, and remarks
[] the first form of this apartheid is the growing divorce between these
debates and those that characterise vernacular discourses about the
global, worldwide, that are typically concerned with how to plausibly
protect cultural autonomy and economic survival in some local, national,
or regional sphere in the era of reform and openness. The second form
of apartheid is that the poor and their advocates find themselves as far
from the anxieties of their own national discourses about globalization
as they do from the intricacies of the debates in global fora and policy
discourses surrounding trade, labor, environment, disease, and warfare.7
4 Bauman, op. cit., p. 2.
5 A. Appadurai, Grassroots, Globalization and the Research Imagination, Public Culture, vol 12,
number 1, Winter 2000, pp. 119.
6 Ibid., p. 4.
7 Ibid.

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Whether Appadurai has thought of disability when building this argument or

not, he represented the struggle of local and international movements of disabled people in understanding and making a globalized world to understand
local disability experiences. Those struggles have an impact at every level of
life including government and public policies. The importance, however, of
analysing such apartheid of knowledge in here responds to the need to challenge imposed terminology that has contributed to the invisibility and
exclusion of people labelled as intellectually disabled and through that, prevented their individuality/locality from being known.8 In this way, this chapter
bases its conceptual framework on critical, social, and cultural understandings
of disability. Whereas intellectual disability is understood within such context,
along with the gendered and racialized body it is important to situate intellectual disability within global but also local time and space.9 The concept of
globalization, as Giddens claims, has reappeared as a fundamental sociological
problem.10 Locating intellectual disability within that framework makes it possible to relocate issues of institutional forms and authority through the labels
that have been imposed onto the individuals.
Western scholars that have focused on the concept of disability have
intended directly or indirectly to disclose the confinement of disability and,
particularly intellectual disability, from the concept of globalization. Sub
scribing to the social model of disability in its different variations, scholars
such as Goodley, Rapley, Klotz, Radford, Gleason, Goode, Hughes and others,
have emphasised the fact that globalization and its search for the homogeneity
of reason, language, and behaviour has classified, segregated and, excluded
everything or everyone that breaks the parameters of normality. Paradoxical as
it sounds, the globalizing process of knowledge that preaches for diversity has
stimulated the opposite. As Giddens heralds, globalization thus is a complex
set of processes, not a single one. And these operate in a contradictory or oppositional fashion.11 For instance, the discussion about global transformations
especially regarding education, health, communication takes place at the
international arena, however, the experience and the struggle of people with
8

9
10
11

In this research I have used the term intellectually disabled in accordance to the social
model of disability that defines disability as being imposed instead of being natural. More
information can be found in M. Oliver, The Politics of Disablement, Macmillan Education,
London, 1990.
H. Meekosha, Body Battles: Blind Spots in Feminist Theory, in, The Disability Reader:
Social Science Perspectives, T. Shakespeare (ed), Cassell, London, 1998.
A. Giddens, Runaway World: How Globalisation is Reshaping Our Lives, Profile Books, London, 2002.
Ibid., p. 13.

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intellectual disability is still local and even engaged in the domestic domain
and usually neglected. Regarding this point, Ruddick raises questions that are
relevant in the intellectual disability field.12 Looking at how globalization has
spelled the universalization of concepts and global projects for children and
youth, the author explores the gap between the irrational implementation of
projects in local and regional areas contrasted to the lack of material, human
and knowledge resources to make that possible. The sort of complacency on
new ways of global normalization has helped to perpetuate a view of local
experiences as linear and never changing which might, apparently, in order to
change, need a global input. Ruddick thus asks, how do particular concepts
may do anything analytically to inform our understanding on process of
globalization?13 Such question takes us first of all to explore the local and
domestic aspects, I might say, of concepts such disability.
2

Globalization, Locality and Intellectual Disability: Introducing the

Case of Ecuador
Today, something we do will touch your life.14

A global view on disability, as Davidson argues should start by stating some

global facts.15 According to the WHO over a billion people live with some type
of impairment in the world; 8% of persons with disabilities live in low income
countries; and, 23 percent of the global population has been diagnosed with
intellectual disability. Defining intellectual disability, however, is as complex as
trying to understand globalization. Radford for instance, sustains that the
modern concept of intellectual disability has been made under the authority,
management, classification, and obsession for terminology.16 Globalization
has become a normalising culture. Klotz supports this assertion by adding
that the concept of intellectual disability is constrained by the enlightened
rationality, which has been institutionalised under practices of moral and
12
13
14
15
16

S. Ruddick, The Politics of Aging: Globalization and the Restructuring of Youth and
Childhood, Antipode, Volume 35, Number 2, 2003, pp. 334362.
Ibid., p. 335.
M. Davidson, The Work of Disability in an Age of Globalization. In The disability studies
reader, L. Davis (ed), Routledge, New York, 2006, p. 117.
Ibid.
J.P. Radford, Intellectual Disability and the Heritage of Modernity in, Disability is Not
Measles: New Research Paradigms in Disability, M.H. Rioux (Ed), LInstitut Roeher, Toronto,
1994, pp. 927.

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knowledge control.17 Globalization has continued with the work that modernity started, to create the illusion that reason, intelligence, and knowledge
define individual behaviour. Yet, knowledge plays an important part in the
configuration of globalization, nowadays it is a key element that shapes the
new role of the individual as a productive entity within the market. Under
these considerations, knowledge, reason, intelligence, language, and behaviour are used as channels to segregate those who are considered retarded
from those who are not.18 Intrinsically connected to this affirmation is an official definition of intellectual disability that globally permeates any educational,
medical and psychological study on people labelled as intellectually disabled.
The American Association on Intellectual and Developmental Disabilities
AAMR (AAIDD since 2001) has an important influence within the field of intellectual disability around the world since 1876. The organisation has promoted
the implementation of terminology like mental retardation which is indistinctly used with the one of intellectual disability but that nevertheless reflects
a medical account. The AAIDD, defines intellectual disability as
a disability characterised by significant limitations both in intellectual
functioning and in adaptive behaviour as expressed in conceptual, social,
and practical adaptive skills. This disability originates before age 18.19
Challenging this epistemological framework is the work of Gleason, Goode
and Klotz that allows surpassing the institutional and political globalized
management of intellectual disability and opens the possibility to look at it
within the category of intimacy.20 Through involving themselves in the daily
life of disabled people and their families the conclusions of the authors arrive
17

18

19

20

J. Klotz, Sociocultural Study of Intellectual Disability: Moving Beyond Labelling and

Social Constructionist Perspectives, British Journal of Learning Disabilities, Volume 32,
Number 2, 2004, pp. 93104.
J. Klotz, Denying intimacy: the role of reason and institutional order in the lives of people
with an intellectual disability. PhD thesis (unpublished). The University of Sydney, 2006,
viewed on 30 June 2014 <http://ses.library.usyd.edu.au/handle/2123/513>.
American Association on Intellectual and Developmental Disabilities. Definition of Intellectual Disability. 2000, viewed on 30 June 2014 <http://www.aaidd.org/content_100.
cfm?navID=21>.
J.J. Gleason, Special Education in Context: An Ethnographic Study of Persons with Developmental Disabilities, Cambridge University Press, Cambridge, 1989, p. 154; D. Goode, On
Understanding without Words: Communication Between Deaf-blind Child and Her Parents, Human Studies, Volume 13, 1990, pp. 137; J. Klotz, The Culture Concept: Anthropology, Disability Studies and Intellectual Disability, Paper presented at Disability at the

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at a more internal and local level, at the interaction of people with the world
and their capacity to build mutuality. Their main inquiries are addressed to
question the postulate that our interaction with the world is universal and
effective solely through intellectual and rational abilities as they have been
conceptualised up to now.
Goode, interested in the life of children who were born with the rubella
syndrome and their families during the 1960s in the USA developed a profound
testimony of how people who are diagnosed with severe impairments are normally misunderstood, ignored and subjected to fit into the social box.21 His
study explores the way that intellectually disabled people are forced to abandon their own language if they want to be rewarded with social integration.
Nevertheless, the main contribution of Goodes study is the intimate approach
developed to research disabled families in order to be more assertive about
their needs and their knowledge. On the one hand, there is a complaint in his
work about how poorly we understand people labelled as intellectually disabled and how much more we have to learn about them and from them.22 On
the other hand, his work unveils the fact that most of the studies about families
with members labelled as intellectually disabled, lack the consideration that
different practices are implemented in the intimacy of the family in a range of
ways that differ from how it might be visible in public life.
Along similar lines, in an article about disability in low-income countries,
Ingstad mentions the contradiction and the conflict that arises from the relation between what is assumed by official-professional knowledge and what is
practiced within the families of disabled people.23 The implementation of
intellectual disability as a category of intimacy expressed within the family,
but also in connection with a local context, would help to redefine the global
medical approach to intellectual disability. Indeed, Goode, Gleason, and Klotz,
in their work discovered that there is a contradiction between what some professionals involved in the disability field are pushing people to do, what they
interpret from the disabled persons behaviour and what actually disabled people mean and want.

21

22
23

Cutting Edge: A Colloquium to Examine the Impact on Theory, Research and Professional
Practice, University of Technology, Disability Studies and Research Institute, Sydney, 2003.
D. Goode, Socially Produced Identities, Intimacy and the Problem of Competence Among
The Retarded, in Special Education and Social Interests, L. Barton, S. Tomlinson (eds),
Croom Helm, London, 1984.
Ibid, p. 207
B. Ingstad, The Myth of Disability in Developing Countries, Lancet, Volume 354, Number
9180, 1999, pp. 757758.

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In view of these resisting approaches and due to my personal quest I

embarked on a research that aimed at collecting the narratives of families of
people labelled as intellectually disabled in order to explore intellectual disability as a category of local intimacy.24 Diving into the life of 24 families
belonging to different ethnic groups in Ecuador, an ethnographic research was
conducted between 2007 and 2010. The study addressed the questions such as
how do parents, siblings, close relatives, and the people labelled as intellectually disabled themselves, experience the label of intellectual disability at home
in daily life? What are the strategies that families have incorporated in their
intimacy in order to deal with medical and more professional discourses? In
my research I wanted to include a critical consideration of Ecuador as a multicultural nation where diversity is expressed by the existence of different ethnic
groups while at the same time this diversity has been an excuse for discrimination and exclusion. Ought to it, an approach of intersectionality was
implemented and gender, ethnicity, geographical area and age were the reasons for choosing Pueblo Grande and Pueblo de la Costa (north of Ecuador,
black population); Pueblo Chico (centre of Ecuador, white-mestizo-peasant
population) and Pueblo de las Lomas (South of Ecuador, indigenous population) for the ethnographic work. In-depth interviews, focus groups and
participatory observation were the main methods implemented during the
time of the study. The names of the areas and those of the participants have
been changed to maintain the confidentiality the people requested.
3

The Narratives of Families: Intellectual Disability as a Way of

Resistance in Everyday Life
How can I tell youI have got used to living with him. The doctors told
me that he would be mad or ill and I did not accept it. Now the time has

24

The children of the families who took part in the research have been diagnosed with different disabilities: multiple disabilities (physical, sensorial and intellectual), Multiple
Sclerosis, Downs Syndrome, Autism, blindness and severe intellectual disability. These
children have been excluded from education and health services on the basis of having
either mild or severe intellectual disability. If health complications emerge during their
life spam it is very unlikely that they will receive support. The participants belong to low
income families. The average of children these families have is five being ten the maximum number. The majority of the participants reported the support received by their
extended family (grandparents, aunts, uncles and in laws) in absence of government support. Two of the participants died during the time of the research due to medical negligence.

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passed by and he has grown I know who he is And you see he is with
me. (Mirta, Pueblo Grande)
Living as a family with people labelled as intellectually disabled has frequently
been simplified by the professionals as psychological and personal characteristics of the family ignoring the day-by-day interactions. As a consequence,
professionals assume the attribution of tragedy and pain as an immediate and
non-changeable response to the impairment of the children. This fact can lead
to the neglect of many practical events in everyday life.25 Also, these tendencies have portrayed the disabled family as a pathological unit due to the
emphasis given either on a psychological or a purely material approach. For
instance, authors like Grant and Whittell prefer to use the term coping strategies to explain the knowledge that families accumulate in order to live and to
survive the effects of disability.26 However, in my research, families talked
about strategies that can be defined as strategies of resistance to the labels
and the diagnoses that mark their lives and the lives of their disabled members. Within this framework while the authors present religious beliefs or the
giving of new meanings to difficult situations experienced by the families as
coping traits, in this study they are valued as a product of the interaction
between family, impairment (individual) and disability (society) and the particular configuration that families give to them. They should be seen also
within a process of a continuous search in life that families and the disabled
relatives undertake to give meaning to their own situation.
Studies about disabled family stories usually start with the wondering of
how it happened or how the family knew about the impairment of their children, or, as Leiter would call it, orientation.27 Frequently, the questions drive
the respondents directly to the encounter with different medical and psychological diagnoses, which could help to bring a variety of emotions out.
Unfortunately, professionals have shaped the lives of families based on those
initial emotions as if first, grief and non-acceptance of the situation were the
constant episode in the life of the families, and second, as if their immediate
reactions to the diagnosis were a-contextual and linear. That is the case of
25
26

27

S. Baldwin, C. Glendinning, Children with Disabilities and Their Families, Disability in

Britain, 1981, pp. 119141, 1981.
G. Grant, B. Whittell, Differentiated Coping Strategies in Families with Children or Adults
with Intellectual Disabilities: The Relevance of Gender, Family Composition and The Life
Span, Journal of Applied Research in Intellectual Disabilities, Volume 13, Number 4, 2000,
pp. 256275.
V. Leiter, Nobodys Just Normal: The Social Creation of Early Childhood Disability, Social
Science & Medicine, Volume 65, 2007, pp. 16301641.

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psychological approaches such as the stage theory or the adjustment theory

that suggest that the reception of an impairment diagnosis by families is developed in stages or assimilated depending on behavioural characteristics of the
families.28 In this research there was a deep interest in knowing how families
continue their process after that first encounter with a diagnosis, and how the
concept of intellectual disability was negotiated, resisted or implemented in
their daily life even with the existence of preliminary diagnoses and labels.
This was implemented, assuming that in the end, as one of the interviewed
mothers in Reads study poses, disabled families are just ordinary people
struggling with additional issues than the average families.29
Families in this chapter talk about time and space as channels through
which they learn to interact with their disabled members and with the environment around them. Also, they explain in many different ways that there is
a constant resistance and questioning of the official concepts imported into
the family. The narratives make clear that even where there is unhappiness,
uncertainty and pain when a child is diagnosed as intellectually disabled, life
goes on, and in between the fights for survival and a cure, the families write
their own story where disability is just part of it but not the whole account.
Larson suggests that when families encounter the moment of defining the
impairment of their children there is a paradox between living reality day-byday and accepting or denying such impairment which is a complex and always
changing process.30 As Rosa from Pueblo Chico expressed:
It is not that we always think about that. We have more things in life and
sometimes it is easier to handle it and some other times it is hardit is
very hard.
3.1
Time and Meaningful Interactions
Read reports that the decade of the 1980s saw a slow change in approaching
disabled families when the parents stories of disabled children started to be

28

29
30

J. Blacher, Transition to Adulthood: Mental Retardation, Families, and Culture, American

Journal on Mental Retardation, March 2001, Vol. 106, No. 2, pp. 173188; M. Seligman, R.
Benjamin Darling, Ordinary Families, Special Children: A Systems Approach to Childhood
Disability, Guilford Press, New York, 2009.
J. Read, Disability, The Family and Society: Listening to Mothers, Open University Press,
Buckingham, 2000, p. 561.
E. Larson, Reframing the Meaning of Disability to Families: The Embrace of Paradox,
Social Science & Medicine, Volume 47, Number 7, 1998, pp. 865875.

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considered through their own anecdotes and theorizations about disability.31

Narratives, particularly by mothers of disabled people have since then been
captured in extensive articles that claim the need to include, in any study
about disabled families, the ethics of daily life and the many different ways
chosen by the families to resist the discourses of tragedy and pathology surrounding them. Feder recounts the experience of hiring carers for her daughter
who was diagnosed with a severe impairment and the difficulty of finding
someone who could care but who could also develop an intense relationship
with her daughter that demands time and intimate knowledge.32 Within the
present research, the families have expressed similar thoughts about the bond
that impairment creates between them and their disabled children. However,
they have emphasised the fact that this tie is shaped only through time, sharing and understanding.
Researching daily life of the participants involved accompanying them in
many activities such as cooking, shopping, cleaning, helping to look after the
children and many others. In between observing and helping I realised that
families, especially the mothers, become time magicians when they have to
clean the babies, wash the clothes, take the children to rehabilitation, and feed
them all at the same time. Time, Rosa repeated, time is an enemy of us because
everything goes so fast life goes so fast. Studies have been developed about
time and disability where time is objectified following the equation time
investment (material and non-material). Indeed, a study developed by Curran
et. al. demonstrates that mothers of disabled children are less likely to have a
paid employment than mothers of non-disabled children due to the time they
have to invest in caring for their disabled children.33 This fact, which does not
decrease as the age of the children increases, affects enormously the general
income of the family as it reduces the opportunities of the parents (especially
mothers) to work. The study of the knowledge gained about disability through
the time invested by the families has been given little attention.
31

32
33

J. Read, There Was Never Really Any Choice. The Experience of Mothers of Disabled Children in The United Kingdom, Womens Studies International Forum, Volume 14, Number 6,
1991, pp. 561571.
E. Feder Kittay, When caring is just and justice is caring: Justice and mental retardation,
Public Culture, Volume 13, Number 3, 2001, 557579.
A.L. Curran et al. Time Costs of Caring for Children with Severe Disabilities Compared
with Caring for Children Without Disabilities, Developmental Medicine & Child Neurology, Volume 43, Number 8, 2001, pp. 529533; R. Traustadottir, Mothers Who Care Gender,
Disability, and Family Life, Journal of Family Issues, Volume 12, Number 2, 1991, pp. 211
228; S. Ryan, K. Runswick-Cole, Repositioning Mothers: Mothers, Disabled Children and
Disability Studies, Disability & Society, Volume 23, Number 3, 2008, pp. 199210.

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In my first visit to Pueblo Grande there was a rumour of a tsunami approaching the coasts of Ecuador. The fear of the danger increased one day when an
unexpected alarm announcing the beginning of a catastrophe woke the whole
town up. The alarm was false, and the thousands of people who ran to the hills
at 2 am went back to the town carrying all the belongings that they had tried to
save. Next day, Miriam, the aunt of Jos, gathered outside her house with some
of her friends and discussed the situation. Sitting in a circle, the conversation
included Jos, a severely disabled young man spending most of his time in a
plastic chair adjusted with cushions for his needs. One of the neighbours mentioned the difficulty that an emergency like that would pose to Jos and his
family since he could neither move nor talk. For instance, the previous night
the family of Jos decided to stay and to die in their house because they would
not leave Jos to die by himself. I asked him if he was scared of dying and
through his smile I guessed that the answer was yes. Miriam and other women
that were there told me, he is saying yes. Due to my curiosity, I asked them
how they could have that certainty, and I received the following explanation:
Listen as you can see, he cannot move, he cannot talk. The poor thing
depends on us all the time. But one thing is for sure he can understand
us. So when he blinks once it means yes. You do not know that because
you do not know him. But once you spend more time with him you will
start understanding these things. Just give it some time. Only time will
teach you
In his book A World Without Words, Goode explains how bodily expression was
understood as intentionality and became natural to him and to the parents
only after a time. Goodes study supports the fact that codes of communication are constructed over time between parents and children who are labelled
as severely impaired and apparently lack means of relating to the world.34 In
the current research there were six participants diagnosed as severely impaired
based on the criteria established by the National Council of Disabilities
(CONADIS); three of them live in Pueblo Chico, two in Pueblo Grande and one
in Pueblo de la Costa. In Pueblo de las Lomas there were two cases that have
been qualified as mildly severe according to their disability ID. Their family life
interaction is significant due to the bond that they have constructed over time
although there is no spoken language, the presence of blindness and the diagnoses of severe mental retardation (as described by their disability ID).
34

D. Goode, A World Without Words: The Social Construction of Children Born Deaf and Blind,
Temple University Press, Philadelphia, 2010.

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Showing me the photos of Francisco, Rosa, his mother, took me through

many stories they have shared, the difficult circumstances they lived through
and the everyday problems they have faced. Suddenly, her eyes were in tears as
she showed me one of the photos of Francisco celebrating his 14th birthday;
it was also the time when he stopped walking. She made the following
comment:
My child is beautiful. Dont you think so? I do not know perhaps because
he is my child I see him like that. But you know it is only through time
that we learn to know them. That is why I do not know how the doctors
can be so rude and tell me to be quiet because they say we know nothing
about them. I gave him birth; I have been with him for 19 years by now.
Something I should have learned in all this time being with him. What do
you think? Is not like that?
Like Rosa, some of the participants were very critical of the way professionals
invalidate their knowledge, acquired through years of daily interaction, about
the situation and the needs of their children. Carmen, the sister of Segundo
explained that her brother does not want to live with his other sister Angeles.
According to Carmen, she and Segundo know each other very well after fifty
four years living in the same house, in the same place without never been
apart. She says that time has given her a certificate on disability that any university would not have granted her:
I know him really well. I know him as he really iswe grew up together
during my mums time I helped her to do everything. I have been living
with him my whole life, since he was a little baby. We have lived in here,
since my mum . I know everything about him what he likes, what he
does not. We know each other well
For Eulalia the years living with her son, Miguel, have been a time of learning
about the human condition, the fragility of life and the fragility of the spirit
when you are not prepared, as she said. Eulalia and her family have become
witnesses of Miguels deteriorating condition. He has become partially blind,
has gradually lost his speech and according to the doctors, his autism is increasing. Eulalia expresses that knowing her son as she does is a product of time,
patience, complicity and mutuality, it is being with him, being for him.
However, she also expresses the frustration that knowing him means sometimes as she has become aware of his needs but does not have enough resources
to cover them:

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I have suffered with him. Mothers suffer because we know our children
and we know what they need. I think he suffers for me as well. He knows
me well. He knows what I am going through. When I have fights with his
father he knows what is going on. So he gets upset with his father. I know
that. His brothers and his father do not understand him as well as I do.
Furthermore, the narratives of the families in the three areas of research were
abundant with examples about an inexplicable complicity with the disabled
children and a sort of spirituality that is linked with a meaningful understanding of disability. According to Rehm disability triggers parents to organise their
activities to spend more time with their children and also with their close relatives, which helps to build a special relationship.35 McColl concluded in his
study that disability brings a sense of closeness to the family but in a more
abstract way as people begin to connect with the world by searching for a sort
of unity.36 For instance, one afternoon while Carmen was washing her clothes,
Segundo and I were sitting on the steps of the patio. Suddenly it started raining. Carmen left the clothes and came to sit next to me while Segundo ran to
the corridor trying to protect himself from the rain. The rain lasted for about
twenty minutes. During those minutes there was complete silence and Carmen
and Segundo only looked at the drops of the rain falling down, nothing else. It
was a meaningful moment of total peace. Once the rain stopped Carmen went
back to the laundry sink and Segundo continued walking around the patio.
Carmen then made the following comment:
We live together for many years. Like today we sit together quietly and
while I look at him he looks at me. I think about all our life. I do not know
what he thinks. Perhaps he thinks about his own life; about my mother
who died or about his future. You knowwith them you learn to think
about life about time.
However, although Carmens comments were shared by most of the parents
they also have accepted that, even though they might know their children well,
there are many times when they have to implement a work of guessing in
their relationship. They need to guess what their children want and how they
35

36

R.S. Rehm, Religious Faith in Mexican-American Families Dealing with Chronic Childhood Illness, Image: The Journal of Nursing Scholarship, Volumen 31. Number 1, 1999,
pp. 3338.
M.A. McColl, Spirit, Occupation and Disability, Canadian Journal of Occupational
Therapy, Volume 67, Number 4, 2000, 217228.

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need to follow their instincts to solve their demands. In my own family we have
encountered many situations when we have to play the game of guess what
my brothers want in order to make sure that our interpretations about what
my brothers are saying are correct. In many ways, this closeness to the disabled
relative, in this case the children, has helped the families to develop a meaningful understanding of human relationships that is only perceived in the
intimacy of the family through time. For instance, while visiting Soledads family in Pueblo Grande I noticed that my mobile phone disappeared and asked
Soledad if she has seen it somewhere in the house. The following day she told
me that it could be that her daughter Anita had taken it. Indeed, the phone was
found under Anitas bed. Soledad insistently apologised and emphasised the
fact that her daughter was not a thief.
She is not a thief; do not think that she was trying to take advantage of
you. She is just trying to play hide and seek. I know her. She is forty years
old but she plays with us all the time as a child. That is what people who
have not lived with her do not understand. There is a complicity that we
have but outsiders do not understand it.
3.2
Space
The decision to develop an ethnographic account of disabled families was not
considered only as a methodological strategy in this study. There was also the
need for revealing what Gleeson defines as the socio-spatial structures, which
oppress people.37 Places like Pueblo Chico, Pueblo de la Costa and Pueblo de
las Lomas have been forgotten as geographic spaces of disability by the
Ecuadorian society, the State and of course the world; and, while Pueblo
Grande is seen as an urban area geopolitically, disabled families struggle day by
day trying to have access to a better quality of life as much as the families in the
other areas where the research was conducted. Nevertheless, from the narratives of the families and from what I observed, it could be said that by
experiencing abandonment from the local and national authorities, people
have made use of the spaces where they live in order to resist the barriers they
encounter and to understand intellectual disability in a unique way. However,
their decisions are not always positively interpreted by the professionals.
Accompanying Sara to her daughter Alegras weekly therapy session in
Pueblo de las Lomas, on the bus I met an employee of National Institute for the
Children and the Family (INNFA, Instituto Nacional del Nio y la Familia). She
37

B. Gleeson, Geographies of Disability, Psychology Press, New York, 1999, p. 394.

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asked me about my presence in Saras house and after giving her some details
about my research she made an observation about places to find more people
like this one in Pueblo de las Lomas. Her comment on how mountains and
hills are places where families hide their disabled members was not the first
one I heard during my fieldwork. Moreover, the coordinator of the Community
Based Rehabilitation (CBR) Programme that is run in the area had told me during our first conversation that only after three years of work the families have
understood that they do not have to hide their children and even though,
some still do it. Her interpretations about how Alegras family were dealing
with her impairment concluded that before the programme started the child
was condemned to be locked inside the house by her parents. This affirmation
was also made by the therapist and the teacher from the special school that
Alegra used to attend. Although in Pueblo de las Lomas household duties are
shared between men and women which differs from the gender-based division
of labour practiced in other areas of the research; in the case of Sara and her
husband Mario the majority of the work that is done at home falls on the
shoulders of Sara. In addition to dealing with the needs of her nine children
she has also to attend to her two-year old son, her seven-month old baby, and
also to look after Alegra who can neither walk nor talk. During the days I
shared with this family I witnessed the tremendous work that Sara has to do.
Activities like washing the clothes of all the members of the family by hand,
cooking, feeding the toddlers, feeding the animals while she carries Alegra or
the baby Toms on her back are done solely by herself with some help of her
children and husband once they are back:
As you see, I have to wash, to cook, to clean the babies, to go to the market
and more. If nobody else can go and if my older children are not here
what else can I do? The village is far from here and sometimes, you see,
we have to walk two or three hours So I have to leave the ones that do
not go to the school inside the house. It is not that I do not love them. I do
not know what else to do.
Similar difficulties are experienced by Miriam, who has also been placed in a
difficult position by the comments of the community members. On the one
hand, professionals from some governmental departments complained about
Pablo being locked in by his parents due to their ignorance and the shame
they feel. However, through the anecdotes shared by Pablos mother it could be
concluded that the reason for locking in her son would have to do more with
protection than shame:

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I have suffered enormously because children throw stones at Pablo. Also

anything bad that happens around like lost things or lost animals people
immediately will blame my son. I remember that a neighbour came one
day and told me that her chicken has disappeared and that she was sure
Pablito stole it. It was not true because precisely on that day I asked Pablo
to be here with me as he was previously accused of stealing money from
the house of another neighbour. I know my son is not a thief. So after that
day his father decided to lock him in the room. But it was only for one day.
After that we felt so bad. He has the right to be around and to go wherever
he wants.
Whitley, following the arguments of Foucault sustains that the gaze inhibits
social interactions and movements, and that families are pushed to adjust
their spatial and temporal activities because of the fear of becoming victims of
aggression.38 Also, Pueblo de las Lomas and Pueblo Chico offer a typical picture of the Andean geography: communities divided into small villages with a
very basic urban structure that fades away as soon as they move up to the
mountains. The areas where these families live offer the possibility for their
children to have an open space without the danger represented by cities, even
though the situation of Pueblo Chico differs slightly from the other due to the
highway that divides the town. The anonymity of individuals that surrounds
the crowded and busy cities is something not experienced in rural areas. It is
this lack of anonymity existing in those open rural areas which contradicts
opinions about families hiding disabled people.
Besides, social reactions towards individuals labelled as intellectually disabled and their families may vary based on peoples interpretations of their
actions. While the behaviour of Pablo can have an intentional and rational
impulse, people might just see what they interpret as intellectual disability.39
This same argument could be used when family actions are socially sanctioned.
During my visit to Pablos family I followed his daily routine. At noon he sat
quietly on a rustic bench outside a small shop and waited until the students
came back from school on the 1 pm school bus. He stood up with a big smile on
38

39

J. Whitley, A Model of General Self-concept for Students with Learning Disabilities: Does
Class Placement Play a Role, Developmental Disabilities Bulletin, Volume 36, Number 1,
2008, pp. 106134; M. Foucault, Madness and Civilization: A History of Madness in The Age
of Reason, Vintage, New York, 1980.
P. Ferguson, Winks, Blinks, Squints and Twitches: Looking for Disability and Culture
Through My Sons Left Eye. In Rethinking Disability: The Emergence of New Definitions,
Concepts and Communities, P. Devlieger, F. Rusch, D. Pfeiffer (eds), Garant Uitgevers, Antwerpen, 2004.

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his face when the car brought the students back and tried to play with them.
Some ignored Pablo and some threw stones or tried to push him away. However,
Pablos reaction was always playful to the point that I had to stop the students
from doing what was evidently an aggression towards him. Miriam believes
that her sons response shows his feeling of being included by the children in a
sort of game. Although Miriams conclusions are correct to a certain degree I
also witnessed the capacity of Pablo to identify the difference between a game
and an act of aggression and to protect himself using the same stones and the
pieces of wood that were thrown at him. Contradictory, from time to time
Miriam receives complaints about Pablo being aggressive from some of the
childrens mothers. Similar situations have brought requests from some of the
community members to send Pablo to an institution, to remove him from his
own place:
These people have told me to send my Pablo to an institution. They say
that this is not a place to have a loco (a mad man). That he needs to be in
a different place, which means en una casa para locos (a psychiatric
place). Do you think an institution will be a place? If he were not like that
nobody would say that he has to go to an institution just because he
would do what the other children do.
Stories of spatial and temporal boundaries constructed through the gaze, the
perceptions and the comments of people were also verbalised by Maria, Elena
and Manuela in Pueblo de las Lomas or Carmen and Eulalia in Pueblo Chico.
Hiding children is an act that is ruled out by the professionals and the communities if the children are attending school or are enrolled in any type of
public job (supermarkets, training shelters and others), or even if they have
been institutionalised. Indeed, the professionals were less willing to talk about
hiding disabled children in Pueblo Grande and Pueblo de la Costa as long as
they were registered either in the Institute or in the rehabilitation centre. For
instance, the report about Jos who has been diagnosed with severe multiple
impairments also said that he was hidden by his family. Paradoxically, during
my visit I could observe that he was very well known by the neighbourhood
and had a social function in it. The warm weather facilitates people to live an
outdoor life in this area. Chairs are placed outside the houses even in dangerous neighbourhoods such as the ones where the families from this study live.
Jos sits in his plastic chair outside the house regularly, participating in the
conversations that take place between the neighbours. He has a key role of
circulating information in the neighbourhood. Neighbours can leave notes or
messages for others on his lap or if there is a need of confirming that somebody

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is at home or has left, he would do it. He has become the porter of the neighbourhood as one of the ladies said. The categorisation of this activity as
non-productive by the professionals leads to conclude that visibility is more
an outcome of institutionalised productivity (school, work place) and less
framed within sociality. Indeed, families in Pueblo Chico and Pueblo de las
Lomas have complained that although their children are seen walking around
the community or they are taken to public spaces (parks, markets, supermarkets, churches) by their relatives the claims of families locking them up are still
there.
Besides, the support that families lack when they need to leave the house
without any other option than locking their children at home (disabled or
non-disabled) is taken as a family fault instead of being seen as a responsibility
of the State. Doctors in Pueblo Chico or Pueblo de las Lomas denounced two
cases of disabled people who had epilepsy and were found tied up in their
beds. Going through the narratives of the families and observing their daily life
helped to understand that the lack of care, support, and the lack of information about epilepsy were the main reasons behind this decision. Yet, some
authors like Yeo have underlined the fact that some non-disabled people
emphasise changing attitudes of the families as a priority and ignore the internal and external conditions that surround them.40 More debate about disability
linked to space and the interpretation of family decisions is urgently needed.
Space has to be understood also within the framework of the modern
nation-state issues, as a container of racial and ethnic conflicts and regional
affiliations41. Indeed, professionals and families themselves put more emphasis on the myth of hiding disabled people either in the indigenous area or in
the black rural sector. The rumour of families locking up their children was
also endorsed by poor families living in the rural parts of the country and those
living in the city but within the so-called marginal areas. Disability narratives
transmit not only cultural but also political information about social roles42
as well as about social segregation. For instance, in Pueblo Grande most of the
families assumed that indigenous families and also black families living in
rural marginal areas, would be more ashamed of their disabled children than
those living in the city and consequently would hide them. In Pueblo Chico,
40
41
42

R. Yeo, Chronic Poverty and Disability, In Chronic Poverty Research Centre Working Paper,
Number 4, 2001.
S. Radcliffe, Remaking the Nation: Place, Identity and Politics in Latin America, Routledge,
London, 1996.
B. Price, Illness Careers: The Chronic Illness Experience, Journal of Advanced Nursing,
Volume 24, Number 2, 1996, pp. 275279.

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families having a better economic situation were more judgmental about the
practices of those living in difficult conditions. However, families and neighbours of Pueblo Chico told me stories about upper class families sending their
disabled children to live in their haciendas (farm) outside the cities.
Mercer in a study of institutionalisation concluded that low income families were more likely to ask for discharge of their children while high-status
families accepted more easily official definitions of intellectual disability opting for institutionalisation.43 On the other hand, families in Pueblo de las
Lomas as mentioned in earlier chapters, believe that perhaps their social, geographical and ethnic condition could lead them to ignorar (to not know) what
to do with their children. As Margarita and Miriam said: Perhaps it is true that
because we are indios and we live so far from clinics and schools, we do not
know how to treat our children. Perhaps no.
Although these findings might present an image of Ecuador as a unified
nation but one divided along lines of class, race-ethnicity, location and age it is
important to include such an imaginary within the disability research.44 Also,
as argued before the work developed by Ingstad in the 1980s and 1990s seems
to be very timely as some of the myths about disabled families and practices in
the countries of the so called South have not been eradicated.
3.3
Intimate Local Identities
Goode argues that researching the life of disabled families implies exploring
closely their day-by-day life, which also explores their intimacy.45 Through
sharing a few days with the families I became a sort of confidante to many of
their secrets and stories that otherwise would not have been raised. Families
talked about two main issues: their identity and the identity of the disabled
child and the social network that supports them or rejects them; and, secondly,
the interactions and relationships that are developed within the family. For
instance, Maria said:
We are not different, well in some ways we are, as any other family is.
There are families who have children who are drug addicts. Some other
43

44
45

J.R. Mercer, Patterns of Family Crisis Related to Reacceptance of the Retarded, American
Journal of Mental Deficiency, Volume 71, Number 1, 1966, pp. 1932; M. Seligman, R.B. Darling, Ordinary Families, Special children.
Radcliffe, op. cit.
D. Goode, Socially Produced Identities, Intimacy and The Problem of Competence
Among The Retarded, Special Education and Social Interests, Volume 40, Number 1, 1984,
pp. 228248.

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families have children with cancer or perhaps children who have bad
behaviour. We have children who have impairments. People could say we
are different so they can justify why they discriminate us.
Marieta and Luz in Pueblo Grande, who said that authorities and society
use the term different as a way of putting them apart, shared this opinion.
These comments were common in all the areas of the research. However, ethnicity and economic capital were used as a variable that defines difference. For
instance, six out of the eight families in Pueblo de las Lomas felt that people
might not think they are different because of their children but by comparing
themselves to the mestizo families. Amalia and Margarita argued that:
perhaps they do not see us in a different way because of our children.
They can see our children as different but not the whole family. However,
we will always be Indios. That makes us different.
In Pueblo Grande and Pueblo de la Costa the families narratives showed that
the participants were more aware about discrimination linked to disability.
Nevertheless, they argued there is more exclusion based on poverty and the
colour of their skin. All the mothers described situations where they perceived
discrimination that they adduced as the result of their ethnic background
rather than necessarily linked to the impairment of their children. Yolanda
mentioned that the colour of the skin is a big issue in a black society:
It does not matter that everybody is black in this city. Some think that
they are brown, some others that are whiter so it is never good enough for
everybody. The same happens with disability. The physically disabled
think that they are better than the mentally disabled.
In Pueblo Chico, the families said that by being in a small town all the neighbours know about the lives of each other. As Carmen said, there is a sort of
politeness that makes people closer to our problems but at the same time they
talk behind our backs. In this area poverty and disability are understood by the
families as discriminating factor.
The debate regarding identity was also extended to the disabled family
members and their human capital or their capabilities. In Pueblo Chico and
Pueblo de las Lomas families had a hard time defining intellectual disability
inside the home as they found that as long as their children were able to assist
them with the domestic activities, disability was a label that came from doctors and teachers. For instance, Sara and Rodrigo in Pueblo de las Lomas found

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that even though their daughter has been diagnosed with a severe impairment,
letting her sit on the floor and giving her corn to peel she would be able to
contribute to the family. Carlota trusts her granddaughter with the care of the
animals although she knows she needs some directions. Similar experiences
were encountered in Pueblo Chico. Families were less concerned about the
label as long as their children could contribute to the domestic life of the
household. A link between intellectual disability and school failure was
established.
In Pueblo Grande and Pueblo de la Costa the stories of the families were
rather different. Intellectual disability in the majority of cases was located
between the common sense of the children at home and the chances of them
finding a place in the job market. For instance, parents argued that their children can be very smart in the daily activities they have to carry out at home,
but there was a great concern when their children were disqualified for certain
jobs or when they could not succeed at school. In this urban area the idea of a
market identity discussed by Hughes et al came across. As the authors mention, in a consumerist society disabled people are seen as captive customers
a concept that includes the available offers they can find in the urban job
market.46 Families argued that the main job market for people labelled as
intellectually disabled was general services (cleaning, gardening, supermarket
shelf helpers, cloth makers), and they realise the effect of the label in the lives
of their children when even that opportunity is not available for them.
4

Conclusion

According to Appadurai globalization could be marking the end of any sort of

space of intimacy in social life.47 In this chapter, I have presented the confrontation that emerges between the intimate discourses of disabled families about
intellectual disability in Ecuador and the professional discourses to which
these families are exposed along their life time. I have argued that such clash is
a result of what I call the globalization of definitions. The production of locality, quoting Appadurai, has become an even more vulnerable activity in a

46

47

B. Hughes, K. Paterson, The Social Model of Disability and The Disappearing Body:
Towards a Sociology of Impairment, Disability & Society, Volume 12, Number 3, 1997,
pp. 325340.
A. Appadurai, Fieldwork in the Era of Globalization, Anthropology and Humanism 22(1),
1997, p. 115.

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world of mass mediation, embattled nation-states and politicized diasporas.48

Thus, the challenge in the hands of researchers is about how to speak and to
interpret the intimacy of this new sort of locality in a globalized world.
Furthermore, I have argued through the narratives of families that intimacy
within a locality is a concept that demands serious research especially when
discussing the impact that professional and academic definitions have in the
life of disabled families. The narratives in this research show that it is urgent to
explore the meaning families give to those definitions within their intimate life
as a family. While globalization refers to flow and circulation of people, in the
terms explained by Bauman; it also refers to the flow and circulation of concepts and definitions. In this study, families did not have to leave their locality
to experience the effect of the WHO definitions. They just needed to be exposed
to the presence of institutions, professionals and organizations. In view of this,
a definition like intellectual disability could easily be said has a globalized and
also an intimate side where difference is always in a constant battle against
normalization. In this study, the narratives of the participants showed that
their family life is undoubtedly marked by labels and diagnosis that pretend to
construct normal and abnormal individuals. However, the situation of disability responds also to individual relationships and intimate personal searches
that resist such construction. As expressed by the families, disability is a unique
situation that creates unique identities. On the one hand, a given identity as
special mothers, special children and special families disseminated by the
church, the NGOs or the government could perpetuate gender and social issues;
on the other hand, the relationship and the interaction developed between
mothers, siblings and their disabled relatives has constructed a unique understanding of life. Thus, globalization poses a challenge to disability researchers
that responds more to an ethical than a methodological problem. Perhaps, as
Appadurai suggests, the solution is then to search for an ethics of the global
and a politics of intimacy.49
Bibliography
American Association on Intellectual and Developmental Disabilities. Definition of
Intellectual Disability. 2000. Viewed on 30 June 2014 <http://www.aaidd.org/con
tent_100.cfm?navID=21>.

48
49

Ibid.
Ibid., p. 118.

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Miranda-galarza

Appadurai, A., Grassroots, Globalization and the Research Imagination, Public Culture,
vol 12, Winter 2000, pp. 119.
, Fieldwork in the Era of Globalization, Anthropology and Humanism, 22(1), 1997,
pp. 115118
Baldwin,S., Glendinning, C., Children with Disabilities and Their Families, Disability in
Britain, 1981, pp. 119141
Bauman, Z., Globalization: The Human Consequences, Polity Press, Cambridge, 1998
Blacher, J., Transition to Adulthood: Mental Retardation, Families, and Culture.
American Journal on Mental Retardation, March 2001, Vol. 106, No. 2, pp. 173188.
Curran, A.L. et al., Time Costs of Caring for Children with Severe Disabilities Compared
with Caring for Children Without Disabilities. Developmental Medicine & Child
Neurology, Volume 43, Number 8, 2001, pp. 529533.
Davidson, M., The Work of Disability in an Age of Globalization. In The disability studies
reader, L. Davis (ed). Routledge, New York, 2006, p. 117.
Feder Kittay, E., When Caring is Just and Justice is Caring: Justice and Mental Retardation.
Public Culture, Volume 13, Number 3, 2001, 557579.
Ferguson, P., Winks, Blinks, Squints and Twitches: Looking for Disability and Culture
Through My Sons Left Eye. In Rethinking Disability: The Emergence of New Definitions,
Concepts and Communities. P. Devlieger, F. Rusch, D. Pfeiffer (eds), Garant Uitgevers,
Antwerpen, 2004.
Foucault, M., Madness and Civilization: A History of Madness in The Age of Reason.
Vintage, New York, 1980.
Giddens, A., Runaway World: How Globalisation is Reshaping Our Lives. Profile Books,
London, 2002.
, The Consequences of Modernity, Polity Press, Cambridge, 1991.
Gleason, J.J., Special Education in Context: An Ethnographic Study of Persons with
Developmental Disabilities. Cambridge University Press, Cambridge, 1989.
Goode, D., On Understanding Without Words: Communication Between Deaf-blind
Child and Her Parents. Human Studies Volume 13, 1990, pp. 137.
, Socially Produced Identities, Intimacy and the Problem of competence among
the retarded. In Special Education and Social Interests, L. Barton, S. Tomlinson (Eds.),
Croom Helm, London, 1984.
, Socially Produced Identities, Intimacy and the Problem of Competence Among
the Retarded. Special Education and Social Interests, Volume 40, Number 1, 1984,
pp. 228248.
, A World Without Words: The Social Construction of Children Born Deaf and Blind.
Temple University Press, Philadelphia, 2010.
Gleeson, B., Geographies of Disability, Psychology Press, New York, 1999.
Grant, G., Whittell B., Differentiated Coping Strategies in Families with Children or
Adults with Intellectual Disabilities: The Relevance of Gender, Family Composition

9789004304048_Paunksnis-01_text_proof-01.indd 338

7/27/2015 11:52:42 AM

Intellectual Disability, Family and Resistance in Ecuador

339

and The Life Span. Journal of Applied Research in Intellectual Disabilities, Volume 13,
Number 4, 2000, pp. 256275.
Hughes, B., Paterson, K., The Social Model of Disability and The Disappearing Body:
Towards a Sociology of Impairment. Disability & Society, Volume 12, Number 3, 1997,
pp. 325340
Klotz, J., Sociocultural Study of Intellectual Disability: Moving Beyond Labelling and
Social Constructionist Perspectives. British Journal of Learning Disabilities, Volume
32, Number 2, 2004, pp. 93104.
, Denying Intimacy: The Role of Reason and Institutional Order in The Lives of
People with An Intellectual Disability. PhD thesis (unpublished). The University of
Sydney, 2006, viewed on 30 June 2014 <http://ses.library.usyd.edu.au/handle/2123/
513>.
, The Culture Concept: Anthropology, Disability Studies and Intellectual
Disability. Paper presented at Disability at the Cutting Edge: A Colloquium to Examine
The Impact on Theory, Research and Professional Practice, University of Technology,
Disability Studies and Research Institute, Sydney, 2003.
Ingstad, I., The Myth of Disability in Developing Countries. Lancet, Volume 354, Number
9180, 1999, pp. 757758
Larson, E., Reframing the Meaning of Disability to Families: The Embrace of Paradox.
Social Science & Medicine, Volume 47, Number 7, 1998, pp. 865875.
Leiter, V., Nobodys Just Normal: The Social Creation of Early Childhood Disability.
Social Science & Medicine, Volume 65, 2007, pp.16301641.
McColl, M.A., Spirit, Occupation and Disability. Canadian Journal of Occupational
Therapy, Volume 67, Number 4, 2000, pp. 217228.
Meekosha, H., Body Battles: Blind Spots in Feminist Theory, In The Disability Reader:
Social Science Perspectives, T. Shakespeare (ed). Cassell, London, 1998
Mercer, J.R., Patterns of Family Crisis Related to Reacceptance of the Retarded. American
Journal of Mental Deficiency, Volume 71, Number 1, 1966, pp. 1932.
Oliver, M., The Politics of Disablement. Macmillan Education, London, 1990.
Price, B., Illness careers: the chronic illness experience, Journal of Advanced Nursing,
Volume 24, Number 2, 1996, pp. 275279.
Radford, J.P., Intellectual Disability and The Heritage of Modernity. In Disability is Not
Measles: New Research Paradigms in Disability, M.H. Rioux (ed), LInstitut Roeher,
Toronto, 1994, pp. 927.
Radcliffe, S., Remaking the Nation: Place, Identity and Politics in Latin America. Routledge,
London, 1996.
Ryan, S., Runswick-Cole, R., Repositioning Mothers: Mothers, Disabled Children and
Disability Studies. Disability & Society, Volume 23, Number 3, 2008, pp. 199210.
Read, J., Disability, The Family and Society: Listening to Mothers. Open University Press,
Buckingham, 2000.

9789004304048_Paunksnis-01_text_proof-01.indd 339

7/27/2015 11:52:42 AM

340

Miranda-galarza

, There was Never Really Any Choice. The Experience of Mothers of Disabled
Children in the United Kingdom. Womens Studies International Forum, Volume 14,
Number 6, 1991, pp. 561571.
Rehm, R.S., Religious Faith in Mexican-American Families Dealing with Chronic
Childhood Illness. Image: The Journal of Nursing Scholarship, Volume 31. Number 1,
1999, pp. 3338.
Ruddick, S., The Politics of Aging: Globalization and The Restructuring of Youth and
Childhood. Antipode, Volume 35, Number 2, 2003, pp. 334362.
Seligman, M., Darling, R.B., Ordinary Families, Special Children: A Systems Approach to
Childhood Disability. Guilford Press, New York, 2009.
Thomas, C., Female Forms: Experiencing and Understanding Disability. Open University
Press, Philadelphia, 1999.
Traustadottir, R., Mothers Who Care Gender, Disability, and Family Life. Journal of
Family Issues, Volume 12, Number 2, 1991, pp. 211228.
Whitley, J., A Model of General Self-concept for Students with Learning Disabilities:
Does Class Placement Play a Role. Developmental Disabilities Bulletin, Volume 36,
Number 1, 2008, pp. 106134.
Yeo, R., Chronic Poverty and Disability. In Chronic Poverty Research Centre, Working
Paper, Number 4, 2001.

9789004304048_Paunksnis-01_text_proof-01.indd 340

7/27/2015 11:52:42 AM