Disabled child and the society: Relationships and socialization

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Abstract


Background. The problem of pediatric disability remains one of the most acute social challenges. Along with the question of the social status of a disabled person and the ambivalence of the term “disabled person” itself, whom the modern society prefers to refer to as “a person with limited abilities,” there is the unresolved issue pertaining to the method of socialization of disabled children.

Aim. We aimed to analyze the relationships of a disabled person and the society in the context of cultural history and consider the problem of the socialization of disabled children and the methods used for this form of socialization.

Method. The study involved the analysis of the relationships between disabled children and the society as well as the methods and ways of social and psychological rehabilitation of such children, undertaken in terms of philosophical anthropology.

Results and discussion. The purpose of encouraging the socialization of a disabled child in his family that actively interacts with a team of doctors is not only to teach him/her to adapt to societal conditions and be useful to the society but also to help him/her to integrate effectively in the society as a person who is aware of himself/herself, is equal to other members of the society, and is conscious of his/her dignity and undoubted value.

Conclusion. The family and the immediate environment of the child, apart the medical community, play an active role in his/her social and psychological rehabilitation. The success of rehabilitation depends largely on their interactions. Irrespective of the rehabilitation method we use, including gaming methods, para athletics, and the practice of integrated schools or home education, we must remember that we are working with an individual with his/her own personality, talents, problems, and needs.


Background

The problem of childhood disability remains an acute social concern. Such a situation poses questions regarding the social status of a differently abled person and the method to be used for the socialization of such a child. In addition, there is ambiguity regarding the use of the term “disabled person,” which is less preferable in the modern context than that of the terms—“a person with special needs” or “a differently abled person.” Children comprise a certain proportion of all differently abled patients, and a differently abled child is determined as someone having special needs. In addition to the ambiguous societal attitude toward the existence of differently abled children, the situation is further complicated significantly by the unclear processes of socialization of such a child. The degree of societal interaction of a child depends not only on the social environment, upbringing, and personal qualities of a child, but also on his/her experiences of such interactions that are frequently negative.

This study aimed to review the history of the relationship between a differently abled person and the society as well as the problems of socialization of differently abled children with a discussion of some methods and techniques to enable such socialization.

Method of the study

An analysis of the relationship between the society and differently abled individuals was conducted. Further, the methods as well as techniques used to enable social and psychological rehabilitation of such children, undertaken in terms of philosophical anthropology, was also performed.

Results and discussion

Childhood is the most important stage in an individual’s life because this phase involves personality formation and establishment of basic social skills. The social aspect of the value of a child’s life is determined by his/her acceptance by others and a mutual understanding between him/her, peers, and all adults he/she interacts with. It is also noteworthy that the question regarding the value of a child’s life and people’s attitudes toward him/her as a person was first discussed in Europe at the end of the XIX century owing to the emergence of pediatrics, pedagogics, and child psychology as independent scientific disciplines [1].

It must be remembered that childhood is not a stage for the “preparation for adulthood,” but life as it is, with its intrinsic social and existential crisis during which the child, in the process of self-comprehension, experiences a personality crisis, asking self and others questions, such as “Who am I?, What am I?, Why am I like this?, Why do not they want to be friends with me?, What will happen when I grow up?, Is it true that one day I will die?” It is important to note that the “morality of the society is determined by its attitude toward children” [2].

Disability causes dependence and the existence of special needs or a way of performing tasks in a manner that is different from that used by most healthy people.

The relationship between the society and the differently abled people can be presented as an Allegory: Imagine a society wherein all people can absorb water directly from the air. In such a society, a person who needs to drink water will be considered as having “special needs.” Being in a warm environment, surrounded by relative comfort and safety, we live in the illusion of independence. However, what happens if, for example, the electricity is turned off? In such a situation, we are as dependent as a differently abled person. Everyone is dependent. Thus, a differently abled person is different from normal individuals only with respect to the type and degree of dependence. For instance, we are entitled to consider the bubonic plague as a disease with an inherent etiology and clinical picture and as a disease that became a part of European history and culture, influencing their development.

Disability is also endowed with a cultural and historical modality that we will attempt to review.

Disability, as a mode of human existence, can be (although very conditionally) explained using the following two quotations from the Holy Scripture: “My grace is sufficient for you, for My power is accomplished in weakness” (1 Corinthians 12:9), “Blessed are the poor in spirit for theirs is the kingdom of heaven” (Matt. 5:3). The “poverty of spirit” proclaimed by the Savior can be understood as a lack of conation that does not allow a person to change the destiny given to the “poor” from above. The same spirit-will, spirit-vital force, and spirit-effort (πνεῦμα) became in the Renaissance the meaning of the Divine Creation (τὸ πνεῦμα ἅγιον). The poor in spirit, “infirm,” lacking the power for such an effort, is not merely a higher form of humility before God’s Will. Blessed infirmity is the infirmity of Job suffering in the desert, who swore: “I came out naked from my mother’s womb, and I will return naked. The Lord giveth and the Lord taketh away; blessed be the name of the Lord!” [3] is the torment of a man left by God and suffering; it is transformed in the mouth of the unfortunate into hymns to Divine Glory and Omnipotence.

Invalidus literally means “impotent,” “weak,” and “discounted” [4]. A differently abled person with his inferiority and poverty of spirit is the price and power of the Divine Providence. A person who is poor in spirit remains in a practically heavenly, almost pre-sinful state as that of a person, who is incapable of doing anything in this powerlessness, as well as “judge evil”. In this sense, disability, like obedience to the will of the Creator, is a type of rejection of self-will filled with pride, a refusal of convenience, comfort, and recognition of one’s personality; however, it is not a theomachy rejection or a refusal as a challenge to the heavenly powers, but rather a refusal as a form of liberation. The very “power to say ‘no’ to one’s self” makes one “a servant of God,” a free man/ woman.

Does this mean that poverty of spirit is a synonym for the inaction and lack of will? In response to this question, we again hear the words of the Creator speaking through the apostle Paul: “My grace is enough for you, for my power is made perfect in weakness” (2 Cor. 12:9). Such force is already not only the inexorability of Providence. The effort, which is decided in opposition to despair by a person who trusts in the Lord in his infirmity, is also the power that occurs in infirmity.

When, through the roof of a house in Capernaum, a bed with a “relaxed” (paralyzed) young man lying on it was descendent of Christ, this action (Mark 2:1-5) was an effort, a step of a powerless person towards salvation. More symbolic are the words of the Savior addressed to this young man: “Child! Your sins have forgiven you!” Such a daring man’s desire to heal is not resistance to God’s will, not the merit of a person who makes an effort. The attempt to become different, as well as the desire to “become,” and not just “to be,” is a manifestation of God’s power that is present in every moment of human impotence and infirmity. “It happened!” is one of the main verbs of the New Testament; the verbs accompanying both, the atoning sacrifice of Jesus, and every miraculous act of the Savior and His apostles.

However, we will try to withdraw from the biblical context and consider some aspects of a conflict situation between society and the people perceived by the society as inferior. In the history of mankind, people who represent higher powers (shamans or priests) are often afflicted by a disability or physical defects. Their appearance alone aroused trembling, mystical horror, and fear. The presence of “victim (sacrificial, mutilated) signs” in the prophets and heroes of all types always generated several standard reactions from the society, including rejection, horror, or, contrarily, deification.

A differently abled person, as an alien, as the ultimate, visible incarnation of the other, generally evokes two extreme reactions: alienation, rejection, or fear, bordering on adoration. It is known, for example, that in a Greek polis, a slave who has been injured (for example, lost a limb) was made a teacher, that is, became a child’s leader who accompanied his master’s children to the teachers’ homes. It was also sincerely believed that a person who is deprived of any ability since birth (for example, a defect associated with sense organs), at the will of the Gods, possesses the inclinations of a fortuneteller and an oracle. An example of such a prophetic differently abled person is the character of the congenitally blind old Tiresias in ancient Greek myths and tragedies. It is Tiresias who makes the patricide Oedipus perceived the truth about the latter’s involuntary crime and predicts a sad fate for the unfortunate. Moreover, Oedipus, whose name means “with pierced feet” (Οἰδί-πους), was lame. Blindness poses considerable dependency; the blind find it challenging to perform the most basic tasks. However, in Greek mythology, only a blind man (Tiresias) is endowed with the gift of an intelligent sight, using which, Oedipus begins to see clearly by putting out his eyes (creating another connotation with his name because “to know” in Greek means οἴδα). This myth clarifies that a full, wise life is provided through the willingness to sacrifice in life itself. However, this in no way refers to suicide or self-mutilation for losing one’s life or becoming maimed because there is a vicious and vengeful refusal here. The blessed refusal is to refuse from oneself and return to oneself: you cannot become yourself without going against your heart. Such a refusal from “values” in the sense of gaining independence from various possible benefits takes us to the regime of freedom. God is freedom, and when I am a servant of God, I am a free person.

There are many examples from the mythology and the history of religions that narrate about the maimed gods, heroes, and prophets. It is known that Hercules experienced seizures of unmotivated cruelty, during which his limbs trembled and brown foam arose from his mouth. This seems to describe epilepsy. Further, it is believed that the body of Odysseus was covered with scars and cicatrices, and his closed wounds had the ability to open suddenly. The figure of the lame and hunchbacked god-blacksmith Hephaestus and his mutilated and ugly son, the God Pan, the king of the forests and the fields is another significant example of the assignment of a physical defect to the celestials. It is also known that Pan had an incredible influence on the human crowd, spreading terror and confusion among people with his appearance, which gave his name to panic and panic terror.

In addition, in Germanic and Scandinavian mythology, the king of the gods, Odin, also has physical deformities: he looks like a one-eyed warrior, thereby endowing the Vikings, who suffered on the battlefield with a heroic status. The presence of “victim signs” among the host of Gods is not only an example of a person’s discomfort with an inexplicable deviation from the norm but also a description the societal perception of disability and relationship with differently abled individuals. For example, the ancient cults of the barbarian tribes did not distinguish between mutilations inflicted on the spirit and those on the body of the sorcerer. A zoomorphic embodiment of the sorcerer that reflected the spirit or totemic animal was directly associated with the body. Therefore, having been inflicted with a wound or a mutilation, the sorcerer, who was shaped like an animal, received an identical mutilation on his human body. This mystery was partly transferred to Christianity, where since time immemorial, fish and lamb are considered the animals that personify Christ. Thus, the cult of blood of the Lamb of God sacrificed becomes a part of the sacrament of the Eucharist. Finally, the custom of the ancient Sparta that required the abandonment of unviable children to the will of fate or to throw them off a cliff was also a method of buying mortals off the peeved Gods who revealed their discontent through the birth of a differently abled infant.

Interestingly, according to one of the apocryphal Gospels (from Nicodemus), the baby Jesus also experienced congenital deformity in the form of lameness. This detail served as a reason for the recognition of this Gospel by the Nicaean-Constantinopolitan cathedral as non-canonical – “Perfect man and perfect God.” According to the ecclesiastical formula, Jesus could not bear a physical defect, casting suspicion on the Divine origin of the Messiah.

In the life of the Muslim Prophet Mohammed, there is a reference to the fact that when the prophet received the revelations from Allah, Mohammed’s eyes rolled up and he roared like a camel and an ass. Such revelations that show the chosenness of the prophet, his deviation from the “norm,” were observed by contemporaries, who were filled with mystical horror. Dostoevsky’s assumption about the revelations of the founder of Islam sound more straightforward: this is the same second when the overturned pitcher with water of the epileptic Mohammed did not have time to spill, but, at that very moment, he could observe all the dwellings of Allah” [5].

Nevertheless, it should be noted that “deviation from the norm” causes another feeling in the society, that of curiosity. This could explain the popularity of the so-called monster circus in Europe, USA, and Russia. Actors working at this kind of circus, such as Siamese twins, “giants,” “dwarfs,” people deprived of or endowed with “extra” limbs, achieve as much popularity and glory as modern-day athletes and pop stars. The actors of the monster circus create a performance, the chief attraction for the circus, using their defects. The story of the so-called “elephant man” is well known; he was the Englishman Joseph Merrick who performed in one such monster circus in 1884. Remarkable memories about him have been recorded and preserved by his attending physician and friend Sir Frederick Trivz [6].

The situation of differently abled individuals in “closed” and totalitarian societies is particularly challenging and unclear. The official reason for the elimination of such “problematic citizens from such societies should be determined in the cult of health inherent in totalitarianism.

In addition, today, against the background of growing tolerance, the attitude towards people with unusual appearances and ways of life remains ambiguous.

From the late 50’s to the early 60’s, there was a social movement across in Western Europe and the USA that defended the rights of differently abled people. Leaders, in particular, were engaged in creating an “accessible environment” that provided easy access to public places by means of installing elevators, ramps, and plates with Braille script.

Moreover, there was a proposal, for the first-ever time to replace the term “disabled patient” with the phrase “disabled person.” Further, in 2003, in the United Arab Emirates, Algeria, Yemen, Oman, Jordan, and Egypt, the social movement for the rights of differently abled people proposed the term “courageous person.”

The sculpture contest “Fourth Pedestal” that has been conducted since 1999 in London allows the winning work to be flaunted throughout the year in the heart of the British capital. In 2006, the winner of the contest was Mark Quinn’s “Pregnant Alison Lapper.” The model of the sculptor was a differently abled woman in her eighth month of pregnancy. The woman was born without arms, and her legs were partially amputated. Such deviation during intrauterine development results from the adverse effect of using the drug “Thalidomide”; this deviation was called “thalidomide catastrophe.” “Pregnant Alison Lapper,” a five-meter statue of white marble became the central object at the opening of the Paralympic Games in London [7].

The subjective world of differently abled individuals differs from the subjective world of normal individuals in their axiological specificity and greater tension in their attitude towards their opportunities and restrictions, considering that the state of modern culture divides these two categories of individuals into the world of “differently people” and the world of “healthy people.” Thus, disability (especially childhood disability) requires not only physical, but also social and psychological rehabilitation.

Today’s society pays due attention to the problem of disability, providing differently abled people and their families with monetary allowances and opportunities to receive free medical aid. However, both, the small size of this allowance and the reluctance of young families to assume the responsibility associated with the upbringing of a differently abled child force families to abandon such a child, entrusting his/her care to the state and the society.

Rejection can also be imposed by the unwillingness of an influential and successful family who perceives that a differently abled child will make them lose their prestige. An example of such an incident can be illustrated by describing the case of a writer and a human rights activist Ruben David Gonzalez Gallego whose family chose to forget about his existence because “the secretary general of the Communist Party of the Peoples of Spain cannot have a disabled grandson.” Ruben has described his detailed experiences in his two autobiographical novels: “White on Black” [8] and “I‘m sitting on the shore” [9]. The central idea was the understanding of the existence of a differently abled person, whose value of life was devalued owing to the attitude of others and as a struggle for recognizing himself as an individual and as a rational and sensitive person.

The image of a differently abled person in mass culture has also been shaped by the novel-phantasmagoria by Maryam Petrosyan: “The house in which …” [10]: this describes the everyday life of the inmates of a nursing home, disabled wheelchair users with paranormal abilities. In addition, the gross audience obtained a lot of information about the problem of the socialization of differently abled people, owing to feature films such as “The Diving Bell and the Butterfly,” “Rory O’Shea Was Here” (in one of the translations: “Inside I’m Dancing”), and “1 + 1.”

There are two opposite approaches for the social rehabilitation of differently abled children. The first approach implies conscious withdrawal of a child from the society and subsequent isolation among others like him/her. Being placed in a special institution since birth, an isolated differently abled person receives the necessary help; however, such an individual is perceived as hopeless, uneducable, useless, and sometimes dangerous for themselves and the society. Under the conditions involved in this approach, any attempt to become a part of an unfamiliar and frightening society that the child undertakes during adolescence or adulthood is usually a failure.

The second approach provides an opportunity for social rehabilitation that implies not only the education of a differently abled person in a family environment and the training of common skills accessible to him/her, but also school-based learning that subsequently allows a professional career and social success [11].

For a child to be socially active, the foundation needs to be laid during childhood; the child should be integrated in the society and be given the opportunity to make friends and meet like-minded people, both peers and adults, to create his own social circle.

It has been established that differently abled children often have outstanding mathematical, musical, and artistic abilities among other talents; these can be discovered, supported, and developed only by educating and perceiving the differently abled person as a regular member of the society with active societal participation.

Disability of a child significantly complicates both, self-perception and the perception of such a child by the society as an intrinsically valuable person. Aspiring to participate in joint games and training programs, the differently abled child inevitably feels “different” than his/her “healthy” peers. This feeling of being different contributes to the fact that the social and existential crisis natural for a child’s perception and personality crisis is experienced more acutely by a differently abled child than his/her “healthy” peers.

This crisis is experienced more by the differently abled child and his/her relatives in cases of an acquired disability, wherein it is possible to compare the child’s state before and after the disability. By contrast, in such a situation, there is a reference point that serves as a goal that motivates the child to overcome the crisis caused by disability.

The child’s physical rehabilitation must be accompanied by his/her psychological rehabilitation for overcoming this crisis and for possible, subsequent socialization. Depending on the degree of the disability, rehabilitation may take a few years to a lifetime. One method of social and psychological rehabilitation of a differently abled child is his training together with that of his/her “healthy” peers that occurs in so-called “integrated” classrooms. This form of training allows the child and his/her classmates to gradually overcome mutual prejudices. Another option is that of home schooling that provides an opportunity for full-fledged education owing to the teacher’s individual attention for the student; this system also includes communication with classmates when attending open classes and classroom activities.

When a child receives long-term treatment and rehabilitation in a medical institution, the training should occur simultaneously with the rehabilitation process. In this form of training, there is significant contribution of not only the school affiliated with the medical institution, but also of the activities of the educator-psychologist who willingly provides the necessary assistance for the differently abled child and his/her relatives.

The education of a differently abled child, like any other education, is not in itself the goal. The purpose of education, irrespective of whether it is secondary, secondary specialized, or higher, is to ensure the child’s involvement in the social process, the development of abilities and skills that enable him/her to follow a profession corresponding his/her talents and inclinations, the provision of material independence during adulthood. The presence of a profession and societal involvement is not only necessary for improving the social relevance of a differently abled person, but also to increase both, the evaluation of his/her social activities and self-esteem that enable him/her to become a fully functional member of his/her society. Thus, the aim is to convert him/her from a “disabled person” (literally–“devalued”) into a person who realizes his/her own value both, for the society as a whole as well as for his immediate surroundings and himself/herself [12].

The process of social and psychological rehabilitation of a differently abled child can be conducted in the form of games. In any case, the process should engage and interest the child. One such method of creating game-based rehabilitation programs can involve the use of images of mass culture that a child is familiar with and the use of modern interactive technologies.

With respect to the game form of rehabilitation, the role of parathletics should be mentioned as a highly developed and popular form that has been in existence for several decades world, more recently, in the Russian sports industry [13]. Engaging in parathletic activities enables a child not only to improve his/her physical abilities, communication skills, and self-esteem, but also provides the opportunity to change the attitude of the society toward the particular differently abled individual and declare himself/herself as a person whose success allows him/her to change the societal attitudes toward the concept of disability among differently abled people themselves and among healthy people. The popularization of parathletics in general, and that of children’s parathletics in particular, as well as its convergence with traditional sports, not only promotes the methods of social and psychological rehabilitation, but also act as a big step for “persons with special needs” and the rest of society towards each other.

A differently abled child’s immediate family and surroundings play a significant role in his/her psychological rehabilitation. The atmosphere of a loving family gives the child the necessary confidence and power to overcome fear not only of movement, but also of communication, enabling him/her to value himself/herself as a person. Successful rehabilitation requires active participation not only from the differently abled child, but also from the team of doctors, the family, and the immediate surroundings of the child. The age at which a child should assume responsibility for decisions made with respect to the process of rehabilitation and influence his/her own future should be decided based on discussions between the child’s relatives and the specialists. However, most people consider 14 years as an appropriate age of legal capacity and delictual dispositive capacity of a person, provided his mental and psychic health.

A differently abled child himself needs help and support; further, his/her relatives who often have unreasonably high expectations of a quick positive result of various rehabilitation methods also require support. When the outcomes do not match the expectations, it gives rise to psychological problems for both, the child and the relatives. Even if the positive dynamics in the differently abled child’s social and psychological rehabilitation do not produce quick and tangible results, such rehabilitation is vital for avoiding regression because achieving results that do not match expectation is better than no results.

In the modern society, disability often leads to unexpected public affection, cultural and political posturing, encomia or denigration of people, and the division into “us” and “them,” according to the societal attitude toward disability. Such an approach is equally humiliating for both, “healthy” and differently abled people. However, the immediate surroundings of differently abled children sometimes make their disability a reason for exploiting healthy individuals, by believing that disability makes an individual a “special” person who “nobody understands” and who has the right to claim a “special” attitude. This kind of exploitation that does not contribute to a child’s social and psychological development causes societal annoyance, sometimes provoking aggression. This may lead to an even greater societal isolation of the differently abled child, leading to the development of greater fear and distrust of the world in the child.

All children are unique; similarly, all cases of disability are different. Therefore, even with group rehabilitation, an individual approach to each child is preferable.

Conclusion

The existence of a full-fledged, normal person is not a fixture in life that is to be taken for granted, in particular, for the well-being of the differently abled person himself/herself. One should be appreciative and grateful of the gift of owning a health body and organs. People deprived of this gift since birth or due to circumstances, do not cease to be people (e.g., colorblind or tone-deaf people do not cease to be themselves). The value of life for such deprived people is equal to that for the rest. However, they themselves should preserve their dignity and should remember that the absence of a certain gift to them (as well as its presence in others) is not a preference.

Irrespective of the identity of the differently abled person, a favored one, a humble servant of God, a cause for fear or mockery, a monster circus actor, a burden to the society, or a living example of the degree of our civilization, he/she, above all, remains a person whose pain and experience cannot be expressed in words or comparisons. The experience of disability is by definition a personal and subjective experience that cannot be extrapolated to someone who has not experienced it. At the same time, the character of a differently abled person is the primary influencer of people’s attitudes toward him/her. Thus, our ideas about freedom, lack of freedom, norm, and pathology are not as universal as we perceive.

The aim of socializing a differently abled child is not just to teach him/her how to adapt to societal conditions be useful to it, but, to the extent possible, help him/her to turn from an outsider and an exception into a person who is at least equal to others and is conscious of his/her dignity and undoubted value.

The process of socialization of a differently abled child is length and challenging for the child and the society. The society needs to go undergo the difficult path from denial of the problem of children’s disability and attempts to resolve it using methods practiced during the XX century by totalitarian political regimes to the gradual acceptance of the differently abled child as a fully active social member with the opportunity to receive education, pursue a profession, and conduct full communication. In the process of social and psychological rehabilitation of a differently abled child, apart from himself/herself and the medical community, the family and the immediate surroundings of the child also takes participate actively. The success of rehabilitation largely depends on these interactions. Irrespective of the rehabilitation method, including gaming methods, parathletics, the practice of “integrated” schools, or home education, we must remember that the beneficiary is an individual with unique talents, problems, and needs, like healthy children. Such a child has a challenging path to follow in the world and needs not only education, but also, more importantly, understanding and love.

Information on funding and conflict of interest

The study received no external funding. No conflict of interest is declared.

Gregory G. Khubulava

Author for correspondence.
g.hubulawa@yandex.ru
The Turner Scientific Research Institute for Children’s Orthopedics
Russian Federation, 64, Parkovaya str., Saint-Petersburg, Pushkin, 196603

PhD, professor, research associate of educational and methodical

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