INTERNATIONAL
JOURNAL OF
SOCIAL WELFARE
DOI: 10.1111/ijsw.12283
Int J Soc Welfare 2018: 27: 157–167
ISSN 1369-6866
Families of adult people with disability:
Their experience in the use of services run
by social cooperatives in Italy
Bucci F., Vanheule S. Families of adult people with disability: Their experience in the use of services run by social
cooperatives in Italy
Social cooperation has historically played a pivotal role in
developing socio-educational services for people with
disability, thereby contributing to counteracting the social
isolation often associated with this condition. Using a mixedmethod methodology, this study maps the diversity of
perspectives on how the use of disability-related services run
by social cooperatives impacts on and becomes meaningful to
family life. One hundred twenty-nine interviews with family
members of adults with different kinds of disability were
studied using emotional textual analysis. It provides a multidimensional model to read and map the multiplicity of
emotional meanings related to disability and the use of
services, shedding light on key diversities in how family
members emotionally make sense of care and support. The
results reveal the importance of supporting family-carers on
two main issues: accessing a less passive representation of
their relative with disability; and being able to test and
acknowledge limits without succumbing to a sense of
powerlessness.
The last four decades have seen a clear worldwide
evolution in legislation around protecting the rights
of people with disability, as exemplified by the 2006
United Nations Convention, now ratified by 163
States and the European Union (United Nations,
2016). Despite such evolution, the experience of
isolation by people with disability and their carers
proves to persist.
Historically, the shift from institutional to community care has led to a vacuum of care that families
have been expected to fill (Bowey & McGlaughlin,
2007). Still today, caring for adult people with
disability often remains primarily the responsibility of
family units, even in countries with well-developed
systems of support (WHO, 2011).1
More recent international research has addressed in
particular the difficulty that families of people with
intellectual disability face in planning for the future
or undertaking initiatives about the future of their
relatives (Heller, Caldwell, & Factor, 2007;
Mencap, 2002; Taggart, Truesdale-Kennedy, Ryan, &
1
Note that the above-mentioned UN Convention only
marginally tackled family and informal carers’ needs.
Fiorella Bucci, Stijn Vanheule
Department of Psychoanalysis and Clinical Consulting, Ghent
University, Ghent, Belgium
Key words: disability services, residential and day services,
adult social care, family member’s perspective, social
cooperatives, organisational development, mixed-method
research, psychosocial research
Fiorella Bucci, Universiteit Gent, Faculteit Psychologie &
Pedagogische Wetenschappen, Vakgroep Psychoanalyse en
Raadplegingspsychologie, Henri Dunantlaan 2, 9000 Gent,
Belgium
E-mail: fiorella.bucci@ugent.be
Accepted for publication 2 July 2017
McConkey, 2012). Such research highlights the reluctance of older caregivers to plan for the housing
needs of their adult children, thus preparing for the
transition from the family home before the caregivers
become unable to continue in their caring role
(Bigby, 2004; Gilbert, Lankshear, & Petersen, 2008).
This presents a significant problem, especially when
we consider the increasing longevity of this part of
the population.
More generally, care relationships, in case of high
needs care, can be associated with experiences of
isolation and disempowerment both for the caregiver
and the person receiving care. However, as Johansson,
Leonard and Noonan have highlighted (2012), this
strongly depends on the conditions and the contexts of
care.
Recent studies on social welfare have posed the
question as to whether the personalisation of adult
social care through direct payments to the citizen in
lieu of service provision (Caldwell, 2007; Powers,
Sowers, & Singer, 2006) – while introduced in order
to give service users more choice and control over
their own care – is not ultimately posing new risks of
isolation, both for beneficiaries and care providers
Int J Soc Welfare 2018: 27: 157–167
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Bucci & Vanheule
(Ali, 2009; Daly, 2012).2 This has prompted a
renewed interest in the cooperative tradition and in
care and assistance services provided by cooperative
enterprises. The hypothesis at stake is that enterprises
based on cooperative values might help to meet needs
relating to welfare (Fisher et al., 2012), by creating
systems of mutual aid and shared responsibility that
protect individual choice while generating social capital (Johansson, Leonard, & Noonan, 2012; Roulstone
& Hwang, 2015).
This article presents the results of a 2-year
research project that explored the experiences of the
family members of adult people with different types
of disability, specifically in terms of their use of residential and day services run by social cooperatives in
Italy.
In Italy, social cooperation has historically played a
key role in promoting social integration and
independent living for people with disability. Social
cooperatives took shape within the reform movements
against the institutionalisation of disability which, at the
end of the 1970s, led to important laws, for example
for the closure of mental asylums (law N. 180/78), as
well as for the full integration of young people with
disability into mainstream education (law N. 517/77)
and professional training (law N. 845/78). Those
movements drew attention to the social components
of disability by firmly contesting the prevailing
perspective that equated handicap with illness and
deficit (Canevaro, 2007; Shakespeare, 2013). Originally launched by small groups of families and volunteers (with Catholic or Socialist roots), social
cooperatives gained momentum in response to the
rapidly emerging new demands for services that the
public sector, due to financial and organisational
obstacles, was not able to provide. Such new
demands were related to the de-institutionalisation
process on the one hand, but also to the shift
towards a nuclear family structure and an increased
involvement of women in the labour market on the
other, which jointly called for a deep restructuring
of care functions (Borzaga & Zandonai, 2005). Their
work enabled the start of new experiences of supported co-habitation between people with disability,
and of day services intended to offer – besides
educational-rehabilitation programmes – mainly a
social environment where people could share
2
The most common option for people receiving direct
payments has been direct employment of personal
assistants (Scourfield, 2005). Critics have expressed concern that the individualised relationship between employer
and worker may represent a threat for staff [with the
employee being ‘isolated from opportunities for training,
improved status and negotiation of working conditions’
(Fisher, Baines, & Rayner, 2012, p. 510)] and reduce
possibilities for collective action (Burton & Kagan, 2006).
158
friendship, interests and projects (Battaglia et al.,
2002; Canevaro, 2001). They represent, to this day,
one of the country’s most important operators of
social, health and educational services for people
with disability (Bland, 2011; Thomas, 2004).
As Kathryn Knight (2013, p. 670) has observed,
social science research has traditionally been ‘moving
along a trajectory that places undue importance on
the internal characteristics of families (in particular
mothers) to cope with the pressures of managing a
child with disability’ – see for instance the copious
literature on the notion of resilience (Muir &
Strnadova, 2014) – while the impact of services and
of the wider socio-political framework on the families’ experience has not been sufficiently investigated.
The study presented in this article aimed to map
the diversity of perspectives on how the use of
disability-related services run by social cooperatives
impacts on and becomes meaningful for family life.
We assumed that the reasons family members
appreciate the services they receive are multiple and
complex, and cannot therefore be measured unidimensionally. We need multidimensional models to
detect and map them. In particular, our investigation
focussed on the emotional meanings attached to the
use of services, the study of which can provide
insight into the expectations of families towards
the services, what role they attribute to the services
and the extent to which the relationship with the
services proves to be a useful and transformative
experience. Data are based on in-depth interviews
analysed through a method of psychological textual
analysis, called emotional textual analysis (ETA).
Method
The present study was commissioned and carried out
in cooperation with a consortium of social cooperatives in North-Eastern Italy that cover caring and
socio-educational activities for adults with different
kinds of physical and mental disability. The study
was part of a wider range of research initiatives
aimed at supporting the cooperatives in verifying the
effectiveness of existing services and planning innovations, by involving users and their families in such
a process.
Open-ended interviews
We collected 129 open-ended interviews with the
family members of the service users. All interviews
started with a single open-ended question aimed to
let the interviewees freely narrate their experience
and associations in relation to the use of disabilityrelated services and to explore their demands,
proposals and expectations about the future. Each
interview lasted approximately one hour and was
Int J Soc Welfare 2018: 27: 157–167
C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd
C 2017 The Author(s). International Journal of Social Welfare V
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Families of adult people with disability
Table 1. Types of services used by the family.
Day service
Residential service
Residential and day services
Day service and planned respite care
Missing
Total
Table 3. Family member(s) participating in the interview.
Number
%
81
24
14
8
2
129
62,8
18,6
10,9
6,2
1,6
100,0
based on the aforementioned open-ended question
introduced by the following presentation:
The cooperative X participates in a research project
commissioned by the consortium Y with the aim of
reflecting upon the construction of disability-related
services and inquiring about the families’ needs.
We are conducting interviews with the family
members of the service users. The research findings
will be discussed with both the families and the
staff of the cooperatives that have participated in
the study in order to foster a debate and share
reflections on the assistance for people with
disability. Your experience will bring a valuable
contribution to improve the quality of services. We
can start immediately. I will ask you a question.
For assistance with your child [or sibling], you are
using the services of the cooperative X. We invite
you to reflect together on this experience and on
what use you are making of it. For the organisation
of new services, we would also like to know about
your expectations for the future and what proposals
you can make based on those expectations.
Sample characteristics
Tables 1–5 illustrate, respectively: the different types
of services used by the research participants’ relatives; the different types of disability included in our
sample; the degree of kinship of the interviewed
family member with the relative with disability; the
age of the interviewed family member and of the
relative with disability.
All of the cooperatives included provide both residential and day services. The main type of residential
Table 2. Types of disability.
Number
%
31
13
15
24
22
13
11
129
24,0
10,1
11,6
18,6
17,1
10,1
8,5
100,0
Mother
Father
Both parents
Siblings
Other
Total
Number
%
45
16
32
24
12
129
34,9
12,4
24,8
18,7
9,5
100,0
service they offer is the community home (comunita
alloggio), that is, housing where up to ten people
with disability co-habit with the support of specialised staff. The community home can also guest
people for short periods of time, often a weekend,
within the framework of a respite care programme.
The latter can be preparatory to a permanent transfer.
The day services carry out socio-educational activities, seeking to maintain, appraise and develop the
person’s abilities, while promoting social exchange.
In some cases, people living in a residential service
also attend a day service for a few days per week.
Regarding the types of disability included in our
sample, in the vast majority of cases it was a congenital disability or a disability diagnosed in early childhood; in only nine cases was the disability acquired
in adulthood as a consequence of a trauma. The class
intellectual disability refers to different forms of
intellectual and behavioural disabilities, accompanied
in a few cases by a psychiatric diagnosis (mainly
psychosis). Regarding the diagnosis of autism, a very
wide and diversified tradition of practices has developed over time. For this reason, we decided to consider it as a separate class, likewise with Down
syndrome. The class of multiple disabilities refers to
the combined presence of an intellectual, physical
and sensorial impairment.
The focus of our investigation is disability in
adulthood. With the exception of two people (aged
16 and 17), in all cases the relative with disability
was over 18 years old.
Emotional textual analysis
All interviews were recorded, transcribed and collated
together in order to form a single textual corpus
that was subsequently analysed by ETA (Carli &
Table 4. Age of the family member.
Intellectual disability
Autism
Down syndrome
Intellectual and physical disability
Physical disability
Multiple disabilities
Other
Total
Number
%
23
75
23
8
129
17,9
58,1
17,8
6,2
100,0
C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd
C 2017 The Author(s). International Journal of Social Welfare V
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From 29 to 50 years
From 51 to 70 years
From 70 to 83 years
Missing
Total
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Bucci & Vanheule
Table 5. Age of the person with disability.
From 16 to 35 years
From 36 to 50 years
From 51 to 64 years
Missing
Total
Number
%
60
51
15
3
129
46,5
39,5
11,6
2,3
100,0
Paniccia, 2002; Carli, Paniccia, Giovagnoli, Carbone,
& Bucci, 2016).
ETA is a method of psychological text and discourse analysis that was developed at the end of the
Nineties by Renzo Carli and Rosa Maria Paniccia to
enable psychosocial research and intervention with
social groups and organisations. By exploring how
the different social actors emotionally symbolise their
shared social and organisational reality, ETA allows
crisis factors as well as development resources in
local relations to be identified.
From a theoretical-epistemological point of view,
ETA rests on a specific theory of emotion as a form
of knowledge linked to the unconscious, which participates in the psychological construction of reality
according to rules that psychoanalytic theory has
sought to explain. More specifically, the contributions
of Ignacio Matte Blanco and Franco Fornari to a
semiotic theory of mind are central to ETA. According to these authors, the conscious and unconscious
mind can be conceptualised as two, equally systematic, modalities of sense-making that interact continuously. The former is ruled by conventional cognition
and by the non-contradiction principle (which states
that, e.g., if A > B, then B cannot be >A at the same
time; thus, A and B are distinct objects). Unconscious
mental activity, by contrast, is mainly emotional and
governed by principles of symmetry and generalisation (according to which, e.g., if Marco is the father
of Bruno, then also the reverse is possible; thus,
objects can be assimilated with each other along
potentially infinite associative chains) (Matte Blanco,
1975). This bi-logic (in Matte Blanco’s words)
implies that those aspects of reality that we perceive
as endowed with a clear and univocal sense, in terms
of cognition, are at the same time emotionally polysemic. They evoke multiple experiences and associations in terms of unconscious meanings, which
determine our subjective relation to reality. This double level of meaning is reflected in language and can
be inferred by studying language (Fornari, 1976).
In cooperation with the French psychosociology
movement, Carli and Paniccia developed a method
for studying how emotional symbolisation unfolds
within and through social relations (i.e., beyond
the intrapsychic domain). Mapping emotional
meaning-making activity might shed a new light on
160
the functioning of social groups and organisations
(Carli, 2006; Carli & Paniccia, 2002). They developed ETA with the goal of establishing a standardised tool for conducting such analysis. ETA aims to
build a model of the way research participants emotionally symbolise the issue addressed in a study (in
our case the use of disability-related services). Since
the method maps prevailing emotional perspectives
inside a research group, it allows similarities and
differences between subgroups to be studied.
For this purpose, ETA uses an operational procedure combining qualitative and quantitative analysis.
In this sense, it uses a mixed-method research
methodology. The quantitative analysis is carried out
by means of specific software for textual data analysis called Alceste (Reinert, 1990, 1993). In the first
stage, the software generates a dictionary of all words
contained in the text, with their related roots and frequencies. This allows the research team to select the
dense words in the textual corpus, that is, words with
a salient emotional meaning3 (Carli et al., 2016).
Subsequently, the text is cut into homogeneous segments, called elementary contextual units (ECU),
which are sentences or fragments of sentences delimited by punctuation. These ECUs are automatically
determined by the programme so as to have similar
length. Then, through multi-dimensional analysis –
namely, multiple correspondence and cluster analysis
(Ratinaud & Marchand, 2012; Reinert, 1983) – the
software detects how the dense words recur within
the text, mapping their most significant patterns of
association. Clusters of dense words are thus discerned, and then positioned in a factorial space (see,
e.g., Figure 1 and Table 6).
As one can see in Table 7, for each cluster we
have a list of the dense words that characterise it,
ordered by chi-square value. The larger this value,
the more important the word is for the statistical
construction of the cluster. Alceste also maps how
each cluster is related to specific socio-demographic
variables, also expressed in terms of a chi-square
value (see, e.g., Table 8).
The clusters therefore cast light on the implicit
emotional composition of the text which was not
immediately evident in the text’s original form. The
method presumes that the implicit emotional
3
The emotional meaning of dense words is evident even
when the word is isolated from a sentence: for example,
‘hatred’, ‘failure’, ‘ambition’. On the contrary, words like
‘to go’, ‘to think’, ‘to do’, just like modal, auxiliary and
widely used verbs, or many adverbs, have a low emotional
profile and do not indicate emotions except, at times,
within a sentence. These are considered non-dense.
Depending on the context, a word may acquire particular
emotional and symbolic relevance. Thus, the dense words’
selection is guided by knowledge of the local research
context.
Int J Soc Welfare 2018: 27: 157–167
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Table 6. Relationship between clusters and factors (cosinesa).
Cluster 1 (41,04 %b)
Cluster 2 (12,86 %b)
Cluster 3 (11.28 %b)
Cluster 4 (34.82 %b)
Factor 1
Factor 2
Factor 3
.799
–.448
.463
–.849
.507
–.617
–.722
.322
.323
.647
–.515
–.420
Note: Each factor has to be considered as a continuous dimension with a
positive and a negative polarity, and a central point that corresponds to
the central point of the whole space where the factorial axes intersect
each other.
a
The cosine function expresses the intensity of the correlation between
factor and cluster (from 0 to 1); in other words, it indicates which factors
contribute more to explaining the position of the cluster within the structure of the data. The most significant correlations are shown in bold.
b
Percentage of ECUs included in each cluster among the total number of
classified ECUs.
Figure 1. The factorial space.
Note: The three factorial axes correspond to the three spatial
dimensions: horizontal (first factor), vertical (second factor) and
distance (third factor).
composition of the text is indicative of the
interviewees’ emotional meaning-making activity.
The final step of ETA consists of a qualitative
interpretation of the clusters. Its goal is to translate
the information obtained from the clusters, in terms
of associations between words, into narratives that
shed light on the implicit emotional meaning of the
experience. Beginning with the dense words with
the larger chi-square value in each cluster, first, we
analysed the emotional polysemy of the words, by
studying their etymology in order to retrieve their
symbolic sense beyond the literal sense (Carli &
Paniccia, 2002; Matte Blanco, 1988). We went on to
interpret the sense of the associations between words
and, finally, of the relationships between clusters
inside the factorial space. In this way, the emotional
connotation of the issue at stake by the research participants becomes increasingly clear and can be differentiated into various components in relation to
each other.
The interpretative work is based on the theoretical
model of Carli and Paniccia (2003), which mainly
draws on the abovementioned psychoanalytic references. Basically, they distinguish different areas of
emotional symbolisation that all play a role in the
Table 7. Clusters of dense words (ordered by chi-square valuea).
Cluster 4
Cluster 1
Cluster 2
Cluster 3
v2
Dense words
v2
Dense words
v2
Dense words
v2
Dense words
142,91
69,36
61,10
56,65
51,37
51,12
49,56
49,34
42,60
40,41
38,29
37,83
34,00
33,39
32,77
28,82
28,14
27,03
26,26
25,85
To eat
Home
Sunday
To drink
To wash
Bed
Content
To sleep
Saturday
Mountain
Morning
Bathroom
Kitchen
To dress
Night
Couch
Alone
Mum
To sit
To get angry
66,82
48,83
44,12
37,55
36,72
36,66
35,98
34,15
32,22
30,55
29,87
29,84
29,79
29,14
28,79
28,52
27,45
Activity
Admission
Limit
Difficulty
Relationship
Positive
Severe
Organisation
Difference
Handicap
To propose
To choose
Problems
Negative
Educator
Constant
Project
120,80
116,18
84,49
79,41
66,58
65,43
65,15
62,32
59,95
59,95
50,26
48,31
47,68
46,36
44,75
41,73
39,88
35,82
35,29
33,17
Hospital
Doctor
To cure
Feet
Surgery
Professor
To fall down
Paediatrician
Examinations
God
To be born
To intervene
To walk
To die
Epilepsy
Teeth
Neurology
To touch
Injury
To save
214,67
132,86
131,04
127,63
120,12
120,11
103,18
101,94
95,39
88,94
81,54
77,77
77,18
59,96
51,33
48,82
48,82
48,82
48,69
38,65
38,89
Money
Voice
To pay
Region
Euro
Politicians
Rights
To cost
To spend
Pension
State
Fee
Information
Commune
Foundation
Government
Institution
Rome
Bank
Law
To coordinate
a
In decreasing order.
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Table 8. Socio-demographic variables associated to each cluster (ordered by chi-square valuea).
Cluster 4
Cluster 1
Cluster 2
Cluster 3
v2
Socio-demographic
variables
v2
Socio-demographic
variables
v2
Socio-demographic
variables
v2
Socio-demographic
variables
150,99
Intellectual disability
169,07
Autism
377,83
Family member’s
age: > 70
109,16
79,26
Residential service
163,52
User’s age: 16–35
95,69
71,55
User’s age: 36–50
155,29
Family member’s age:
31–50
Day service
57,73
Day service and
planned respite
care
Family member’s age:
51–70
Physical disability
56,15
a
Intellectual and physical disability
Interviewed family
member: father
53,22
48,94
In decreasing order.
adaptation process between an individual and the
context (see, e.g., Carli & Giovagnoli, 2011). This
adaptation process is a continuum, starting with the
primitive dichotomous emotional distinction between
good/bad, friend/enemy, then passing through affective meanings associated with the experience of the
body, for example the dichotomies inside/outside or
bottom/top. Finally, we reach more elaborate, specific
areas of emotional experience regarding social
relations and their organisational contexts. In the
interpretation process, one goes constantly back and
forth between the details of words and words’ cooccurrences, and the significance of these words in
terms of the theoretical model.
While interpreting the clusters in the qualitative
part of the ETA, we also study the link with the
interview content, relevant literature on the topic of
study, and background knowledge of the research
context and of the local culture. This is in order to
understand how the affective symbolisations that we
have been examining give rise to specific social
dynamics (e.g., of conflict) or are the outcome of
specific cultural processes.
Several meetings were devoted to discussing
the research results with the interviewed families, the
staff and the management of the cooperatives. This
was a crucial step in line with the research objective
to provide the cooperatives and the families involved
with tools for reflecting on the emotional implications
associated with the use of services and, rethinking in
this light, their efficacy and improvability.
Results
The data analysis produced four clusters of dense
words within a factorial space made of three factorial
axes. Of 5,162 ECUs, 3811 units (73.83%) were classified in a stable way in the clustering process. This
indicates a very good fit between model and data.
Figure 1 and Table 6 illustrate the factorial space
and the statistical relationship between clusters and
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factorial axes. We will discuss the clusters according
to their position on the factorial axes, starting from
those positioned on the first factor, which include the
higher number of ECUs (see Table 6).
Two clusters load onto the first factor: Cluster 4
(C4) and Cluster 1 (C1). Since they are positioned on
the opposite polarities of the factor, they tell us about
different sides of a same dimension.
Cluster 4: dedication
C4 is related mainly to the accounts of families of
adult people with intellectual disability, aged 36–50,
who live in a residential facility (see Table 8).
The first word in the cluster is eat: that is, a primary need and a vital action, which is essential for
growth and for existence itself. Eating stands for the
primary task and the symbolic nucleus of a care relationship. The second word is home. In Italian casa,
from the Latin casa which means hut, that is, a place
where one can find shelter and protection from external adversity. In C4 the symbolisation of the relationship with the person with disability is centred on
fulfilling basic needs through carrying out daily caregiving activities which over time seem to have constituted a reassuring ritual: eating, drinking, washing,
going to bed, sleeping, going to the bathroom, preparing food in the kitchen, dressing. Everything
seems to aim at maintaining this equilibrium. No
space is left for frustration, absence, conflict or for
the manifestation of desires which might diverge
from basic needs.
The words Sunday and then Saturday appearing in
the cluster still talk about a daily routine but point to
a shift. Sunday in Italian culture is the day par
excellence in which the family gets together. In this
case, the weekend is also the time when many users
of residential facilities go back to their original
homes and spend the day or the entire weekend with
their family. These occasions symbolise the united
family but here in particular they symbolise a
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‘reunion’ which happens after a separation. This separation creates space for a possible development in
family relationships.
In the community home parents are given the
chance to experience a relationship with their child
whereby differences can be more acknowledged and
valued: for example, his/her difference as an adult
man or woman who cannot be perpetually assimilated
to a child. Signs of this shift are visible in the word
mountain (referring to the excursions that are usually
organised by the cooperatives for the service users),
which symbolically points to a world capable of
amusement, variation and that has challenging as
well as desirable experiences. At the same time, the
separation comes with an experience of abandonment
and of crisis. As indicated by the last words closing
the cluster (night, couch, alone, mum, to sit, to get
angry), a recurring concern among the parents and
siblings interviewed was that without the community
home, their relative could be left alone, sitting somewhere with no one taking care of him/her. These last
words also recall the context of crisis in which the
parents’ decision to let their disabled child move into
a residential facility often emerged. As some interviews made clear, for example, from a certain
moment on, the child refused to sleep, got angry,
wanted to stay on the couch until late at night. The
parents interpreted such events as signs of a malaise
that the person was experiencing at home, and therefore started to search for more independent living
arrangements.
Cluster 1: project
On the opposite polarity of the first factor, C1 gives
us insight into another perspective, which mainly
regards families of young people with autism (16–35
years) who use a day service.
The admission of their children or siblings to a
day service (specifically for people with disability)
has a peculiar relevance for these families and an
ambivalent meaning. Although in Italy children with
disability are fully integrated in mainstream education, the Italian labour market fails to include a vast
majority of people with mental disability, especially
people with autism (Censis & Fondazione Serono,
2011). For this reason, at the end of school, attending
a day service is often the only way to access a social
life beyond the family context. Thus, on the one
hand, as we can see from the most significant words
in C1, the admission to a day service emerges as a
priority, since this means access to a realm of activity
(i.e., educational and social activities) as opposed to
the passivity that could result from no admission. At
the same time, such an admission comes with a phantasy of severity: carers are worried that their relative
will be completely identified with the world of
handicap, that is, a state that is not apt to evolve and
renders them powerless.
However, C1 also clearly shows the transformative
function of services with respect to this experience.
Within the services, family members can develop
relationships within which they can act upon the
meaning of the problems they deal with and learn
how to use limited resources. Here, they are offered
an opportunity to choose, propose and evaluate
positive and negative dimensions. They find an
organisational competence that families alone do not
have available. This enables them to look at disability, not in terms of severity, but rather in terms of
limits that make sense in relation to contexts, and of
problems that can be tackled on a case-by-case basis
– in other words, a completely different prospect.
One professional figure in particular is named
inside the cluster: the educator. From Latin, ex-ducere
(i.e., to lead out, to bring to light) means to organise
contexts that allow competences to emerge and evolve
from the form of a potential into the form of
productive and transformative resources. What the
families seem to expect from the day services is to
continue an educational function, which symbolically
implies the possibility to conceive a project but also
the effort of being faced with limited results and the
need for constant engagement.
Summary of the first factor
The first factorial axis (see Table 6) focuses on the
relationship between families and services run by the
social cooperatives, and sheds light on the emotional
components associated with the demand for and the
use of residential or day services, particularly in families of people with intellectual and behavioural
disability.
This factor as a whole calls into question the problem of belonging: How do families try to create systems of belonging where their relatives with
disability might feel accepted, valued and part of a
social group? In order to do this, how do families
deal with the diversity associated with disability?
On this point, C4 and C1 stand for two soundly
different relational strategies. In C4 the experience of
belonging emotionally rests on a strict splitting
between inside and outside: the inside, that is, the
space of belonging, is identified with the home and
the family, where relationships are regulated by a
daily routine of care that creates a normalcy for the
person with disability and his/her family members.
The inside can be symbolised as friendly, good,
known and familiar, as long as we split every component of extraneousness (desires, potentialities and
developments included) to the external context. As a
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Bucci & Vanheule
consequence of this splitting, the latter inevitably
comes to be symbolised as threatening and hostile.
While the family members in C4 seem to ask the residential services run by the cooperatives to reproduce
such a family functioning and protective environment, the services partially frustrate such an expectation. They introduce novelties that disrupt the schism
between inside and outside, thereby countering the
risk of isolation resulting from such a schism.
Alternatively, the main task that parents in C1
seek to pursue is to provide their children with a
social life and activity. The whole cluster is centred
on the transformative value of belonging. They do
not ask the day services to function like a family, but
rather to offer specific competences and resources
that might enable the parents to make sense of the
difficulties linked to disability in evolutive terms.
C1 is an important fulcrum of our inquiry. It is
also significantly associated with the second factorial
axis, which is discussed below.
With the remaining two clusters, cluster 2 (C2)
and cluster 3 (C3), associated with the second and
third factor, our investigation expands on the wider
social frame, and includes the viewpoint of physical
disability.
Cluster 2: idealisation of medicine
C2 draws mainly on the accounts of parents aged
over 70, whose children have both intellectual and
physical disability.
The most important dense words of the cluster
(hospital, doctors, to cure) are highly indicative of
its symbolic nucleus. Here we encounter an
experience that strongly associates disability with
illness and the search for a cure. The cluster deeply
resonates with an image of disability which was
typical of a time predating the legislative reforms
for the social integration of disabled people, when
the most important answer provided from the social
system to disability-related issues came from
medicine. During the interviews, the parents retrace
their own experience from its very beginning, when
they realised that there was something wrong as
their child could not stand (on his own feet) and fell
down. There started their path through medical
examinations and interventions.
Disability is experienced as a tragic and fatal accident which seems incompatible with life itself. God,
to be born, to die, to save: All along the cluster,
through different words, we find ourselves confronted
with inescapable dimensions. The exclusive focus on
physical injury in C2 and on the expectancy of interventions that might remove the damage, tell us how
the parents reacted to an experience of impotence, by
pushing the problem outside themselves and treating
164
it as an external enemy, which they have tried to
combat and annihilate. The idealisation of medicine
emerging in the cluster is the backbone of this
dynamic. According to Fornari (1976), within modern
healthcare, medical action emotionally founds itself
on a splitting between disease and diseased person,
namely between the ‘evil other’ (the disease) and
one’s ‘own good’ (of the diseased person). On the
basis of this separation, the doctor can cure the disease by resorting even to aggressive interventions
and, at the same time, he can ally with the patient in
this combat by identifying himself with the subjective
suffering of the diseased person. In C2 the exclusive
focus on the disease as ‘evil other’ seems to have
translated for these families into profound isolation,
where experienced and prospective developments
within the relationship with their children or other
social contexts become unidentifiable.
Cluster 3: rights defence
Finally, C3 is related mainly to the use of a day
centre in combination with planned respite care, and
to family members aged 51–70 of people with a
physical disability (in most cases, spastic
quadriplegia).
Money, voice, to pay, region, euro, politicians,
rights, to cost, to spend, pension, state, fee: Economic power means power to let your voice be
heard. This equation emerges from the principal
words in the cluster. In the Italian welfare state, people with disability are entitled to a system of benefits
and pensions which, from the point of view of these
family-carers, also means having a social voice and
recognition. Now, as a consequence of announced or
already established cutbacks in public funding for
social welfare, such equilibrium risks falling apart.
Families appeal to the political authorities for the
protection of their rights. It must be noted that such
rights were the result of a political struggle that
started in the 1970s, which saw families and people
with physical disability in the frontline.
Following the 2008 financial crisis, Italy began to
redesign its social welfare system; this is still ongoing and features relevant regional variations. The
general downsizing of the state’s role has been one
of the main characteristics of this process, and has
brought into play, or made more visible, a plurality
of actors involved in the provision and funding of
social care. They appear as a list of items in the cluster (commune, foundation, government, institutions,
Rome, bank), next to a demand on the part of the
families for an informative and coordinating function,
which might act upon such a highly fragmented institutional scenario.
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Families of adult people with disability
Summary of the second and the third factor
C2 and C3 oppose each other on the third factor (see
Table 6), and actually represent two opposite visions
which have dominated the history of disability as
well as the public, political and academic debate on
the matter. The bio-medical model of disability, on
the one hand, focuses on the impaired body of the
individual; the social model of disability, on the
other, argues ‘that we were not disabled by our
impairments but by the disabling barriers we faced in
society’ (Oliver, 2013, p. 1024).
Although these perspectives oppose each other,
they both reflect a deterministic view of disability as
a direct consequence of the damaged body or of the
social structure tends to make interventions possible
only on a medical or political/economical level
(Crow, 1996). This is why the two clusters also
appear associated with each other on the negative
polarity of the second factor in opposition to C1.
Such a deterministic view can discourage the participation processes, which seem to be a specific feature
associated with C1 and with the relationship between
families and services run by the cooperatives.
Thus, the second factor as a whole calls into question the problem of power (i.e., power within and of
social relationships): Which models of power do families of people with disability identify with and use in
constructing their social identity?
On the one hand, central to both C2 and C3 is the
identification with a conformist normalcy and a
strong power that might be able to impose it: Medical technique is expected to provide treatments that
might restore a healthy state, and political power is
required to compensate for inequalities and empower
vulnerable people as citizens with rights.
As an alternative to the strong power of conformist
normalcy, in C1 we find what could be metaphorically characterised as the soft power of horizontal
exchange relationships, which literally consists of the
power of questioning, proposing, evaluating, choosing, organising resources and learning. This kind of
power does not constitute itself by defining ideal and
ultimate states of reality, but rather works on limited
outcomes which are meaningful on a case-by-case
basis, and in relation to contingent needs; the latter in
turn are supposed to develop and can be monitored
over time.
Discussion and conclusion
The most interesting contribution given, in our view,
by this study is that of mapping different implicit
emotional coordinates within which the experiences
of the interviewed families concerning the use of
services for their relative with disability might be
framed. Our results indicate that the emotional
meanings related to disability, and the care and support these require, are multiple. This multiplicity
could neatly be mapped in terms of three factors and
four clusters that shed light on key diversities in how
parents emotionally make sense of care and support.
The analysis of C4 supports findings of previous
studies carried out in different countries (Bigby,
2004; Bowey & McGlaughlin, 2007; Gilbert et al.,
2008; Heller et al., 2007) which showed how parents
of adults with intellectual disability struggle to suspend their caring role, even into old age, and to
accept the idea that their child might have a more
independent life, whereas separation is emotionally
related to abandonment. In this sense, our findings
highlight that the main problem the family-carers face
is to access a less passive and more complex (also
more ambivalent) representation of their relative with
disability. The experience in the community home
might be helpful in making such a shift if it enables
parents to imagine a new way of taking care that is
less centred on protection and dedication, but more
inspired by a subjective interest towards their child’s
life and experience in his/her new living environment. This might subvert the idea of separation as
mutual abandonment.
The issue highlighted by C1 is of a different
nature and mainly regards the parents of the younger
users in our sample. Concerned about providing their
children with opportunities to actively participate in
social life, the problem these parents face is that of
testing the limits of what they and their children can
do, without succumbing to a sense of powerlessness.
This is specifically relevant in the case of autism
where medical diagnosis presents many uncertainties,
on the one hand, and employment opportunities are
minimal on the other. Regarding this predicament,
the main resource the interviewed parents report finding in the services run by the cooperatives is a relational system that allows them to explore and
acknowledge limits by inviting them to actively participate in the definition of problems and the search
for solutions.
By contrast, this possibility of exploring problems
and even of transforming their meaning through our
personal experience and interpersonal exchange
seems undermined when more deterministic views of
disability prevail. As C2 made clear, it seems more
difficult for those parents who focus only on physical
impairment and its medical care to come to terms
with their children’s disability and to re-signify it
over time, in relation to developments in their own
and their children’s life. On the other hand, focussing
solely on economic and social determinants makes it
equally difficult to see development directions, especially in circumstances of systemic crisis and change.
The current public spending limits and climate of
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Bucci & Vanheule
uncertainty seem particularly distressing for families
in C3 as univocally associated to loss of rights and
disempowerment.
We believe that these results are in line with the
work of Tom Shakespeare and Mårten S€oder, who
criticised a unidimensional view of disability, showing how both bio-medical and socio-environmental
determinism might undermine the potential agency
of disabled people. Though grounded on different
theoretical perspectives and research traditions, both
authors emphasised the usefulness of approaches to
disability, which might account for the plurality of
factors and the complexity of ‘reasons’ guiding our
relationship with reality, our choices and ultimately
the value we attribute to things (e.g., Shakespeare,
2006; S€
oder, 1990, 2009).
The psychosocial method and perspective proposed in this article try to work in this direction, by
studying how the subjective experience, in its potentially infinite plurality of emotional connotations,
takes shape and becomes operative thanks to the
intersubjective construction of meaning within social
groups.
Acknowledgements
This study was the product of a collective effort. Our
deepest thanks go to Lucia Berta and Liviano
Boschiero, to the management of the consortium of
social cooperatives, and to all professionals and families who participated in the research. We are grateful
to the editors and the anonymous reviewers for their
careful reading of our manuscript and their valuable
comments and suggestions.
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