ISSN : 2241-4665
ISSN : 2241-4665
Ημερομηνία έκδοσης: Αθήνα 27 Ιουνίου
2018
«Η έννοια της αναπηρίας»
της Δρ. Ευθαλίας Τσεγγελίδου
«The concept of disability»
by
Dr. Efthalia Tsengelidou
Περίληψη
Η παρούσα μελέτη αποτελεί τμήμα της διδακτορικής μου διατριβής που πραγματοποίησα
το 2013. Η μελέτη αναφέρεται στη σημασία της ψυχοπαιδαγωγικής ενσωμάτωσης,
καθώς και στην ειδική και γενική οριοθέτηση της ανάπτυξης των ατόμων με
αναπηρίες. Μεταξύ των ερωτημάτων που απασχολούν το χώρο της Ειδικής Αγωγής,
κυριαρχεί αυτό που αναφέρεται στην
ένταξη των ατόμων με ειδικές ανάγκες μέσα στο ευρύτερο κοινωνικό σύνολο.
Abstract
This study is part of my doctoral dissertation
in 2013. The study refers to the importance of psycho-pedagogical integration
as well as to the specific and general delimitation of the development of
people with disabilities. Among the questions that concern the field of special
education there is a predominant one that refers to the integration of people
with special needs in the wider society.
Conceptual
delimitations
Special
psychopedagogy or defectology is a science that deals with people with
disabilities, the study of psychic peculiarities, their training and education,
their psychological evolution and development, corrective and recuperative ways,
for the existing human potential exploitation and development of their
personality, for the most appropriate socio-professional
integration purposes (Verza 1988; Şchiopu and Verza 1994).
Special
psychopedagogy is a science of synthesis, which uses the complex information
provided by medicine (pediatrics, infantile neurology, audiology, orthopedics,
etc.), psychology, pedagogy, sociology, juridical sciences, in the dynamic
study of the personality of all forms of disability (Verza 1988; Şchiopu
and Verza 1994).
Education is
a continuous, organized activity that pursues the conscious and efficient
development of the individual potential depending on the requirements of the
standardised social environment. Special education is a form of education
adapted to the way the child develops below or above the limit of normal.
For people
with disabilities and those with adaptation problems, the development involves
a specific intervention process that is materialized in the provision of
rehabilitation/recovery services of medical, psycho-pedagogical,
socio-professional nature, as well as programs leading to physical, psychical
social levels, corresponding to personal capacities, to a higher degree of
personal and social autonomy (Vlad 1999).
Disabled
students are seen by others as "different." For different reasons,
these children/young people are not perceived as being the same as the other
children. They can be different from others only in appearance, for example,
through the way they communicate and in which they move, by the way they
interact and relate to people around them and their environment or by the pace
and the way they learn.
Special
education is, basically, a subsystem of mass education and deals with the
education of students with disabilities. Thus, special education assumes
responsibility for individuals who cannot adapt to the normal educational
system - children who deviate from the required norms and standards. Disabled
students are a challenge for an educational system designed to include preschool
children, so that in the next 13-14 years, they will go from high school to a
faculty or a certain professional qualification and then find a job. Unlike
most children, those with disabilities do not go so fast on such route, as
their peers, but they give troubles to the macrosystem of education.
Above all,
students with disabilities are people. They are often perceived to be people.
They are often perceived as being different from others, but they should be
given the right to a wide range of education, therapy and rehabilitation
services provided by institutions.
Any approach
to children who are seen as different from others should begin with a
discussion on standards or what is considered to be normal, common, typical,
which corresponds to a standard.
The Romanian
concept of integration included the idea of recovery, instruction and education
that maximizes the psychophysical potential of those with disabilities and
prepares them for an optimal social and professional insertion (Verza 1998).
The purpose of
special education is to teach, educate, rehabilitate, recover, adapt in school,
vocationally and socially, children/students with disabilities and/or learning
disturbances or difficulties.
Special
education is practiced by teachers who are qualified, specialized and devoted
to the education of children with special educational needs. This, on the one
hand, must meet the needs of children's development, by properly assessing the
development potential and by ensuring rehabilitation/recovery and compensation
for deficiencies or disorders, learning difficulties and, on the other hand,
must help the children/students with deficiencies reach the level of possible
individual development as close as possible to normal development by: building
up the necessary school and social learning experience, building up the skills
needed for learning in school, acquiring knowledge, building up skills for
social, professional and cultural life integration in the community and
ensuring the chances and conditions for good development.
In school,
the educational-therapeutic act aims to transmit knowledge, structuring or
restructuring a skill, the formation or remodeling of character traits, a
social attitude, a positive manifestation of personality.
The disabled
child must perceive the situation correctly, assess it, adopt different
attitudes, depending on the context. Thus, he/she can understand that others
around him/her appreciate in a different manner not only environment stimuli,
but also the reactions to them.
By taking
incipient forms of regulation, by forming skills, they are superior ways of
dealing with everybody else for the people with intellectual disabilities.
The handicap
generally is given by what decreases the chances of success through a child's
somatic, intellectual or psycho-functional disability or functionality.
Referring to
a child, the handicapped is one whose inherited or gained physical or mental
abilities are clearly inferior to children of the same chronological age, a
handicap that cannot be totally removed but only recovered to a certain degree,
compensated, improved, valued according to the real possibilities of the
individual and the limited acquisition, retention, transfer capacity.
From the
etymological point of view, the term handicap should be given the meaning of
"disadvantage", the term "handicapped person" meaning
"disadvantaged person"
Excessive
medicalization of the term has led to the assimilation of this phrase with the
"sick person" phrase, the handicap suggesting incapacity.
To overcome
this interpretation, Robert Lafon (apud Popovici 2007) establishes a
relationship among four concepts: deficiency - incapacity - handicap -
inadequacy.
Deficiency
can lead to an incapacity which, in turn, leads to a handicap, which causes the
deficient person to bear the penalties of the integrating environment, which
can assimilate, tolerate or reject it.
Incapacity
can be considered a loss, a total or partial diminution of physical, mental,
possibilities etc., as a consequence of a deficiency that leads to the
nonperformance of some activities that could normally be performed.
Incapacity,
regardless of its form of manifestation (physical, sensory, mental, etc.),
leads to adaptation changes, to a certain type of adaptive behavior, to a
highly variable functional scale, to more or less serious forms of personal,
professional, social autonomy.
The
handicap, according to C. Păunescu (1977), is not to a deficiency, but the
relation between the "integrating potential" and the
"integrative demand", which is generated by the process of adapting
and integrating the living individual in all aspects. The first category
belongs to the individual, the second to the physical and social environment.
The handicap
does not refer to groups but to the individual as a consequence of the
deficiency that prevents him/her from reaching the level of performance (personal,
school, professional, social) that he/she would like to achieve or that the
integrating environment requires.
General and specific in the
development of people with disabilities
When it
comes to psychological development, we must note its anti-entropic character,
characterized by quantitative and qualitative acquisitions, in each of the
psychic domains of reference (intelligence, affectivity, language, etc.) as
well as at the global level of personality. From this point of view, the
development path of the disabled child generally follows the same course as the
normal one (Radu 1999). Differences arise when comparing the skills and
performance of a deficient child with those deemed normal for that age
(according to psychogenetic and psychodynamic criteria). There are situations
where obvious positive developments for professionals seem insignificant if
they are related to the usual standards (for example, self-service skills
training for a child with severe mental deficiency may be deemed insignificant
in relation to the normal children's abilities of the same chronological age).
This should not lead to redefining the criteria according to the objectives
pursued, but to supplementing the reference framework with those elements which
allow for a more accurate assessment of the observed developments (for example,
two years of mental development slowdown at four years of biological age is not
equivalent to two years of slowdown at the age of ten).
Highlighting
general and specific features of development in people with disabilities should
therefore take into account the following priorities:
·
Reporting each evolution observed at the defining
characteristics of the disability/deficiency.
·
Taking into account compensatory and
pseudo-compensatory phenomena that can modify the manifest psycho-behavioral
picture.
·
Outlining the development trend by graphically
recording the observed developments.
·
Highlighting the adaptive or non-adaptive value of
the evolution observed at a given moment in relation to individual capacities,
as well as to socio-professional requirements.
·
The hierarchy of observed evolutions in terms of
their current significance (in the context of school learning, social
adaptation and relationship, professional skills, etc.), but also in relation to
their long and medium term impact.
·
Adjustment of the recovery educational program
according to recorded evolutions. (Buica 2004)
At people
with disabilities one can find both elements that are common to their overall
development and which, as a rule, refer to their negative aspects as well as
elements that remain specific to each category of deficiency. The commonly
encountered manifestations consist of a slowdown in development, significant
discrepancies between levels of growing up different psychic levels,
communication difficulties and interpersonal relationships, low learning and
adaptability capacity, deficiencies in the self-image. On the other hand,
within each category there are specific manifestations, such as the tendency to
verbalism of sight deficiencies or the concretism of thinking of the deaf who
has no deaf-mute education. The particular forms of exteriorization and the
handicapped effects generated depend not only on the type of deficiency itself,
but also on the psycho-individual features of the given subject. In addition,
the specificity of a deficiency also derives from the environmental and social
context in which that person lives. Requirements relating to certain
psychomotor, intellectual, linguistic or relational performance can enhance and
strengthen the deficiency elements, turning them into mental and actionable
patterns that are difficult to treat therapeutically. These, over time, will
place their mark inadequately, as the ultimate expression of the specificity of
that deficiency.
The
classification of deficiencies is far from accurate. Children with severe
deficiencies are characterized by a wide array of manifestations. They are
usually children diagnosed with mental retardation, schizophrenia, autism or
cerebral palsy. They are joined by children with behavioral disorders, sensory
impairments, or those with medical problems. For some of the children,
disability can be a transitory state, and during this period they need careful,
specialized individual care.
Unfortunately,
it is easier for us to identify these children by the degree of exclusion from
ordinary educational programs. Usually their school or social integration is
denied, the reasons being the lack of specialized personnel, the lack of places
in the education and care institutions, the lack of methodological intervention
frameworks.
Baker (1979)
defined the disabled person as "the person whose capacity to independently
cover the basic needs is so limited in relation to the expectations of
chronological age that his/her survival is in danger."
A child with
two or more of the following features is deemed severely disabled child:
·
Partial or total hearing impairment;
·
Partial or total sight deficiency;
·
Deafblindness;
·
Behavioral
disorders;
·
Severe
motor disabilities;
·
Severe
slowdown in development;
·
Severe
mental retardation;
·
Language disorders and moderate, severe or profound
communication difficulties;
·
Major disorders of adaptive and social behavior.
Another
classification of deficiencies is based on the severity of the mental retardation
involved. It is considered that a severe mental retardation (IQ between 20 and
34) also entails a characterization of the same level of the disability as a
whole. Deep mental retardation (IQ less than 20) calls for a different approach
from specialists. It is estimated that about 1% of the total number of people
with mental retardation has this degree of intellectual disability. A
well-structured educational environment can provide people with this degree of
deficiency the formation of limited, but essential, self-care skills.
Here are
some characteristic features of people with severe and deep deficiencies.
Children and young people with severe and deep deficiencies may have a broad
picture of features that depends on the combination of existing deficiencies,
the age of the child, or simply the severity of the deficiency.
There are,
however, some common features that all children with deficiencies have:
·
Limited
communication skills.
·
Difficulties in general physical mobility.
·
Self-care
incapacity.
·
Major difficulties in the relationship with others.
·
Long-term
care needs.
·
Sometimes there are tendencies of self-mutilation.
·
Self-stimulation.
·
Perseverative
behaviors.
In most
cases, certain medical issues accompany these manifestations. Epilepsy seizures,
hydrocephalus, scoliosis or other orthopedic disorders. They should be taken
into account when making the child's personalized intervention plan. Depending
on the above medical issues, a multidisciplinary team is also required to
provide the child with a complex, effective care.
A deficiency
can significantly affect the emotional and social development of the child.
This aspect involves a very limited number of interactions with those around,
either children or adults, as well as an inappropriate development of
self-consciousness.
Children
with deficiencies interacting with others often do it in an inappropriate,
inadequate way. They cannot recognize situations in which their behavior is not
desirable. Their reactions are exaggerated or inadequate to the situation. They
laugh indiscriminately, they undress in public, etc. These behaviors are not
considered inappropriate when the child is young, but with aging, their
persistence is a sign of social behavioral disorder according to their age.
Children
with deficiencies do not play with other children, do not interact often with
adults and do not sufficiently explore the environment. Therefore, they seem to
be completely outside reality and cannot express ordinary human emotions. It
takes time to catch their attention and their response to environmental stimuli
is very difficult, which is a specific feature.
Some of the
children with disabilities have unusual behaviors that seem to be motor
reactions or body postures with no precise purpose. These are ritualistic or
persevering behaviors: kneeling in front and back, waiving fingers in front of
the nose or face, meaningless pirouettes or twisting surrounding objects.
Occasionally, self-mutilation behaviors may occur: hitting the head on the
furniture or on the wall, hair pulling, hitting and scratching his/her own
body. These behaviors occur especially in children with severe mental defects
or in blind children. Their high frequency is worrying, especially as it
interferes with learning social behaviors and self-acceptance.
Children
with deficiencies "look different" than other children because of
their many difficulties. Those around them, especially those who are not
familiar with the issue of deficiencies, may consider their behaviors as
unacceptable or extreme, "odd". It is important for the people who
work directly with these children to know that the results and behavioral
changes are achieved very hard. Children continue to focus on themselves for a
long time. They will manifest for a long time inadequate facial and body
behaviors or expressions. Working with these children requires a lot of
patience and devotion.
A real
understanding of the effects that disabilities have on the general development
of the child is almost mandatory for adults working directly with such
children. For example, blindness greatly reduces the information a child
receives from the analysis of the body language (gestures, facial) of the
adult. Deafness greatly reduces the emotional information the child receives by
listening to the adult voice's intonation. In addition, the child's
intellectual deficit significantly affects the understanding and interpretation
of the social and emotional information the child perceives.
Many
children with disabilities are incapable of taking care of themselves: to
dress, to eat, to keep body hygiene. They need a long training to learn these
basic activities. One element is that, under a permanent control of adults, for
children with disabilities it is very hard to exercise a real control over
their own lives and even on their everyday behaviors.
Children
with learning disabilities do not learn spontaneously. They are not able to
control or adapt their mental processes to their learning tasks. Even though
they have been trained and proved some knowledge, they cannot generalize
learning to the new situations they face. For those living or working in the
community, there is a need for permanent supervision and assistance in the
living and working environment, if applicable.
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