2
To ‘my’ children
And to Juan.
3
‘After more than thirty years of experience,
I am convinced that theory,
Although indispensable,
Serves very little and that nonetheless,
It could never be replaced with practice.
[….]
If I have decided to take you along with
me along this path,
It was not to show off
But because it seemed impossible to me
to enable you to participate
In other ways, in an infinite fulfillment
Of a profession
That never takes anything for granted.
In my opinion, the most rewarding
profession in the world.’
Marcel Rufo, ‘Edipe toi-même’
6
INTRODUCTION
Who of us has never played? Who has never appreciated the beauty of a simple drawing or a
Lego construction? Who has never laughed in the company of play mate?
For some, perhaps the answer to these questions seems to be taken for granted, but it really is
not the case.
For the majority of people, play has been, and is still, one of the most enjoyable moments of
encounter. It is communicating with others, with friends, children, parents: even throughout adulthood,
play remains a person’s occasion of enjoyment and fundamental well-being.
A few years ago, almost accidentally I discovered an outstanding Milanese reality Association,
Abilità, and with it the world of childhood disability, with which it deals daily.
Encountering disability, I understood how latent, hidden and difficult to free and to develop was
the dimension and time of play, both within the daily family dimension and within school time and free
time.
For the disabled child, the encounter with play is very often the encounter with limits:
classmates chase a ball during recreation time, but a wheelchair is never that fast; friends draw the
latest cartoon character that he has never managed to see due to his blindness; the neighbours do not
want him to play with them because he is “too weird and withdrawn”; and so forth.
Then, why is not play turned into a point of departure to structure a new dimension of quality of
life and well-being during free time?
In fact, this association has focused on play as one of the cardinal points of its work with all
types and levels of children with disability: it has created a unique place, the Play-Area, in which the
disabled child can freely express himself through multiple activities of play.
My paper will initially analyze the well-being and quality of life of the disabled child in light of
the new World Health Organization (ICF) definitions and how it is possible to create, through play, an
occasion of discovery of his well-being during free time.
For years, the Association with which I collaborated has dealt with this theme, and through the
study of a practical case, the possibility of development through play within the well-being dimension of
both child and family will be analyzed.
The hope is that, through reflections such as the one described in this paper, a cultural change
towards disability encouraging opportunities and places in which the child can enjoy himself with his
friends in total freedom with no more physical, social and cultural barriers, will be possible.
7
1. QUALITY OF LIFE AND SUBJECTIVE WELL-BEING: WHAT ARE THE PROSPECTIVES?
1.1 The concept of Quality of Life
The concept of Quality of Life cannot be considered a new concept. In fact, the beginning of the
debate on the meaning of well-being and happiness goes back to Plato and Aristotle.
However, during the last years, the concept of quality of life has ever-more become the centre of
research and applications within the pedagogical, educational and medical areas.
To better comprehend what it is about, reflecting separately on two words is useful:
Quality - “An element or an altogether of material elements defining the nature of something or
someone, allowing the evaluation on the base of a determined scale of values”1. This definition
recalls objective and shared optimal standards concerning human characteristics, together with
positive life values such as happiness, well-being, success and health;
Of life - “the altogether of proprieties that characterize living material, distinguishing it from non-
living material”1. It explicitly refers to the most profound essence of man and to the fundamental
aspects of human existence.
This reflection demonstrates the type of impact that the concept of quality of life has within the
educational, medical and social sphere.
In order to comprehend the actual importance in contemporary times, analyzing the historical
path that has led to where it stands today is fundamental.
As I have already mentioned, throughout these last years, the interest and attention towards
people’s quality of life has considerably increased. This led to numerous studies, researches, theoretical
reflections and sociological surveys on the subject. Inevitably, from all this, a different way of defining
and evaluating a person’s well-being and health, has derived2.
Until 1946, the concept of health and well-being in practice coincided with the absence of illnesses
and all medical and rehabilitative interventions. The main objective was the elimination or alleviation of
the causes of discomforts. In this way it was thought that it was possible to recuperate the emotional
well-being by treating the organism’s health.
_________________________________________________________________________________
1
N. Zingarelli, VOCABOLARIO DELLA LINGUA ITALIANA, Zingarelli, Bologna, 1994
2
R. Shalock, M. V. Alonso, MANUAL OF QUALITY OF LIFE, Methods and intervention practises 2006,
Brescia, 35.
8
This first approach had three limits3:
- The psychological well-being depended on the state of the organic health, in accordance with a
deterministic and linear model; it defines health in exclusively negative terms: it says what it is not
(it is not pathology) but it does not succeed in defining what it is.
- It focuses the attention on the presence/absence of any symptoms of illness, in accordance with
the exclusive medical approach.
Therefore, following this line of thought, quality of life was exclusively measured in accordance
with an ‘administrative’ model, in other words considering the number of supplied medical services for
every subject.
As from 1946, a different viewpoint of health has been maintained: in this year the World Health
Organization declared that:
“Health is a state of complete physical, mental and social well-being, and it is not merely limited
to the absence of illness of infirmity.”
Possessing the best possible state of health constitutes a fundamental right of every human
being, without distinction of race, religion, political opinions, financial and social conditions.
The health of all peoples is a fundamental condition for the world peace and security; it depends
on the most possible close co-operation between states.
*…..+ The child’s healthy development is of fundamental importance; the attitude to live in
harmony within a totally changing environment is essential for this development.
In order to reach the highest state of health, the access to knowledge acquired by medical,
psychological and related sciences to all people, is indispensable.
An enlightened public opinion together with an active public co-operation is of supreme
importance for the improvement of peoples’ health.
Governments are responsible for the health of their peoples; they can solely face this
responsibility by taking the appropriate health and social measures.”4
This new definition has radically changed the study of the quality of life: first of all, according to
the WHO, health no longer consists of the absence of pathologies but it lies within a state of global well-
being that is no longer merely traced back to the organic-biological dimension but it also involves the
3
D. Fedeli, D. Tamburri, CAN YOU TEACH ME TO PLAY?, Strategies to teach recreational-play activities
to disabled children, Vannini, Brescia, 2005, pg. 21.
4
WORLD HEALTH ORGANIZATION, CONSTITUTION RS 0.810.1, 1946-1948.
9
psychological and social dimensions; secondly, the importance of a person’s healthy development, of a
healthy and favourable environment, is underlined.
However, it is necessary to consider very carefully the risks that could arise from a similar
definition.
The first consists of the difficulty in defining the objective elements and the subjective factors in
quality of life. The contribution to quality of life as regards the level of culture, art or religion in persons
who enjoy the same standard of physical health or financial and social well-being, is well-known.
Another problem arises here: knowing who establishes the parameters of quality of life, their
hierarchies and the importance that must be given to each of these, how to elaborate the scales of
evaluation. As long as it is a question of objective and physical parameters, undoubtedly, it is medicine
that evaluates, but when it is a matter of psychological factors, only the subject can evaluate himself5.
Developing the reflections brought up by the WHO definition, a radical change in perspective has
been witnessed as from the 1980’s: from the protection of health to the protection of quality of life6.
This growing interest for quality of life has above all derived from a diffused dissatisfaction
towards health assistance that, exclusively intervening on the symptoms and the causes of pathology,
ignored the fundamental human dimensions: emotional well-being, self-determination, social
integration, self-control……
The improvement of quality of life no longer merely concerns the alleviation in the discomfort
triggered by the illness but also the understanding of relapses that any pathology or disability can have
on every aspect of a person’s life. Thus, a primary role is attributed to the socio-cultural factors and to
all resources present on the territory.
Defining and conceptualizing quality of life has been and remains, as we have seen, a multiple and
changing process that presents numerous problems, both technical and philosophical.
For this reason, for an effective objective, it is more useful to define the indicators and the crucial
domains of quality of life and therefore reflect on the principles that define how quality of life should be
conceptualized.
1.2 The indicators of quality of life
The studies on the indicators of quality of life start to develop in the United States as from the
1980’s. Often, it is a matter of global and objective signs of social well-being, such as the average
income, the rate of unemployment, the living conditions, the recreational services, etc.
5
E. Sgreccia, QUALITY AND SANCTITY OF LIFE, in www.comune.fe.it, 3 May 2007.
6
D. Fedeli, D. Tamburri, CAN YOU TEACH ME TO PLAY?, Strategies to teach recreational-play activities
to disabled children op. cit. , pg. 23
10
This theoretical orientation is of great interest as it starts to deal with all other human
dimensions that do not only refer to the biological dimension, overcoming an approach to the
exclusively medical problem and giving it a social connotation.
The attention in the study of quality of life and of the research of its indicators shifts from the
subject to the individual-environmental system, trying to underline, at least in theoretical research, the
close relation between the objective aspects of quality of life and the subjective perception of the
individual7.
The common belief has for long sustained the idea that objective factors, such as the elimination
of poverty, could increase personal well-being. However, for the majority of people, the relation
between well-being and income results mild. (Myers, 2000)8.
Till now, there exists no objective standard in respect to which an evaluation can be made and
researchers share the idea that taking in consideration the individual perception of relational
experiences, of community life, of physical and material well-being, of the satisfaction and happiness to
correctly evaluate the quality of life is important. However, one should not exclude that in this
evaluation, there are problems linked to the communicative difficulties and to the different meanings
given the utilized linguistic terms throughout the interviews.
In order to go beyond this debate between subjective and objective aspects, Shalock (1996) has
suggested concentrating on the domains and on the crucial indicators that could be measured.
Shalock defines the crucial indicators of quality of quality of life as “the perceptions, behaviours
or conditions that reflect the well-being of a person”9. The indicators allow an articulate and multi-
dimensional approach and have to reflect an ample range of important things for every individual.
Eight detectable principal domains have been determined through multiple indicators in order
to correctly evaluate quality of life: emotional well-being, interpersonal relationships, material well-
being, physical well-being, self-determination, social inclusion and rights. (Shalock, 2006)10.
7
P. Di Nicola, DUTY, LEISURE AND ALL THE REST: The objective indicators of quality of life, La Nuova
Italia, FLorence, 1989, pg.45.
8
R. Shalock, M. V. Alonso, MANUAL OF QUALITY OF LIFE, Methods and intervention practises, op. cit.,
pg. 56.
9
Ivi, pg. 56
10
R. Shalock, QUALITY OF LIFE, Conceptualization and Measurement, American Association on Mental
Retardation, Washington, 2006, pg.105.
11
As regards education, some specific indicators have been singled out.
Domain Indicators
Emotional well-being Satisfaction at home
at school
General life satisfaction
in respect to support
Self-satisfaction
Emotional
Well-being negative experiences
Self-perception Identity
Personality
Self-trust
Self-esteem
Security Absence of risk
Of death
Secure environment
Stability
Spirituality
Trust
Happiness Optimism
Personal Development Education Educational activities
Educational accomplishments
Educational situation
Personal
Development Opportunities
Accomplishment Work-related
Adult-type roles
Educational
Personal
Competence Intellectual competence
Skills
Promotion
Interpersonal relationships Interpersonal Relationships
Support
Interactions with teachers/tutors
with peers
Family Satisfaction
Support
Involvement
Friendships Satisfaction
Intimacy
Affection
Domain Indicators
Social Inclusion Integration and Possibility of access
Participation within
the community
Status
12
Acceptance Belonging
Support Services
Working Environment
Roles
Social inclusion
Living Environment
Physical well-being Physical well-being Security
Free time
Health
Physical condition
Recreational activities
Daily Life activities
Self-determination Self-determination
Autonomy Independence
Choices
Personal objectives/values
Possibility of personal
control
Decisive autonomy
Material well-being Material well-being
Financial aspects Productivity
Income
Financial Security
Occupational
Activity
Lodging
Nutrition
Rights Rights Dignity
Respect
Equality
Civic Responsibilities
TABLE 1: domains and indicators of quality of life within education and special education11.
This ecological approach underlines the close relationship between subjective perception
of well-being and of the environment, in a more exhaustive manner in respect to the preceding theories
(WHO 1997; physical health, mental health, level of independence, social relations, environment,
spirituality).
1.3 The ecological model: the “pentagon” of the quality of life.
The improvement of quality of life represents the new horizon in which all the
interventions dedicated to the person, of social, psychological and medical type, progress. Although a
unique and shared definition is unavailable as regards quality of life, the majority of researchers have
11
Ivi pg. 86
13
underlined two fundamental dimensions: the objective aspects and the subjective aspects12.
SCHEME 1: Objective and subjective determinants of quality of life.
A series of variables can intervene between the two objectives and subjective dimensions:
-the subject’s possessed abilities that allow a more or less efficient integration within the community;
-the complexity of expectations and individual values leading to the contribution of significant
importance to the single aspects of one’s life, with different perceptions of well-being13.
Thus, the individual-environmental model is affirmed where each of the two terms can
influence the other.
According to this model, five dimensions constituting the concept of quality of life and
summarizing the domains and the indicators suggested by Shalock can be pointed out14.
1. Physical well-being: the state of health and integrity of the motor and sensorial functions, that
guarantee to the subject an adequate ability of autonomy and the safe-guarding of one’s own
physical health. This is the most commonly diffused conception in the medical sphere;
2. Material well-being: typical category of the social indicators (income, living conditions, social
services, environmental quality, transport, etc);
3. Social well-being: the altogether of interpersonal relationships within which the subject is
integrated. This network can safe-guard the individual’s well-being especially in the case of high
stress;
4. Emotional well-being: attentions to the level of stress, of psychological dimension such as self-
esteem and self-efficiency and to the eventual presence of psycho-pathologies;
5. Social functionality: the competence of the subject to function within particular social roles and
his capability of adapting to the environment.
12
D. Fedeli, D. Tamburri, CAN YOU TEACH ME TO PLAY?, Strategies to teach recreational-play activities to
disabled children op. cit. , pg. 26.
13
J. Orley, W. Kuyken, QUALITY OF LIFE ASSESSMENT: International Perspectives, Spriger, Heidelberg, 1994, pg.
132.
14
D. Fedeli, D. Tamburri, CAN YOU TEACH ME TO PLAY?, Strategies to teach recreational-play activities to
disabled children op. cit. , 2005, pg. 27.
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