Identity and its reconstruction and disabled people

Introduction

People with disabilities often perceive themselves differently than they are perceived by others in society. Other people define their roles and relations in society completely differently (than the disabled do themselves), attributing them a particular identity. Disability becomes the central category which is the main feature defining the social identity of those people. The discrepancies between the transactional identity and the real one of the individual interferes with interactions, constitutes the space of stigmatization where the marking is possible. How does the person with the acquired disability adapt to the expected social identity?

I believe that the most important part in the above context is not the fact of stigmatization by the people around the disabled but the fact that the disabled stigmatize themselves. It is not only that the disabled who allow others to discriminate against them, which is very often out of their control, but also they start treating themselves in the same way. They perceive themselves, “see” with the eyes of others, they internalize the attitude of others. Self-stigmatization “allows” the disabled to adapt to the demands of society, “allows” them to reintegrate that identity. Persons treated as disabled begin to behave stereotypically, finding the ascribed characteristics in themselves. Is that self-stigmatization or adaptation? Can body awareness, especially disabled body awareness make the identity reintegration easier?

Social identity and personal identity

In the subject I am interested in I accept the concept of identity from the perspective of symbolic interactionism. Identity can be specified as a definition of me and my role or my position in the group and society [1], [2], [3], [4], [5]. Interactionism together with the concept of multiple identities or different ranges of identities can be the answer to many questions connected with continuity, sameness, individuality or integrity of identity. Thinking of the multiplicity of social self was started by James where humans take part in many interaction contexts, so a person has many social selves, which is followed by a breakdown of the social individual [1]. Pointing to the creation of identity in social interactions, their nature of transaction is distinctive for interactionism. Connecting the social identity and personal one with stigma is essential in Goffman’s concept, which is the reason for choosing this concept, taking this theoretical perspective, as it allows the analysis of stigma, one of possible stigmata – disability.

Participants in social relations usually have some expectations, they predict that others will behave in a certain way, that they will undertake specific actions. When entering social relations, the actors assign specific identities to themselves and to others. The interaction works without interference only if the expected identity is really the identity of the individual. If there are discrepancies between the transactional identity and the real one the interaction is disturbed. It becomes the basis for the creation of space where the stigmatization is possible. If the defect or feature which discredits the individual in having the expected social identity is known to the people around or obvious in direct contact, such a person will be discredited and will have to face a hostile world [3]. Disabled people with visible dysfunction are very often discredited. Some defects are difficult to hide so these people are treated through the prism of stigma. There can be different media that inform the world about disability: wheelchairs, walking sticks, hearing aids, etc.

Social identities can change but, according to Goffman, each individual has just one biography and the stigma cannot be erased [3]. Each person with the stigma of disability uses many identities. Depending on the social situation, such a person may present themselves as stigmatized when in different situation they present themselves as ‘normal’, in one occasion they do not provide any information about themselves when in other one they may provide some information. Surrounded by family their ‘own’ people such a person can reveal all the truth about themselves.

Personal identity indicates the uniqueness of an individual. That kind of identity is based on the assumption that each individual is different than another and has the ascribed set of social facts and incidents, space and time orientation points. A person’s uniqueness is based on the statement that such a set is the proper one and it is possible to be ascribed only to this one person, the space and time locus is that person’s null point. There were also others who took part in the events, but the set of facts and incidents will be different for them. There are no two identical life stories, they will always differ in, e.g. the perspective – my point of view is mine not yours and likewise.

Stigmatization and self-stigmatization

The identity of the individual, created or reconstructed in the process of stigmatization changes – a healthy person becomes a sick one because of the labeling, a fit one becomes a limping one, ‘a cripple’, in a wheelchair or visually impaired [3]. Using the examples from other social situations we can say that a person transforms from a good father of a family to an abusing father. The individual is not even aware that he/she has the specific expectations toward the others, his/her attitude is visible when the person is not like in the model, when they do not fulfill the expectations or do not have all the qualities that were ascribed to them. In such a situation the specific person changes into the stigmatized one. Certain patterns of interpretations allow the surrounding people to treat and accept the individual as ‘such a person’ and thanks to the labeling accepted by that individual as the one describing them, the interaction works without any interference [6]. The stigmatizing or labeling may be presented as forcing the individual by the publicity to accept the particular definition of the situation.

When the expectations concerning somebody’s social identity are different than the real one the possibility for stigma appears [3]. The resource of a person’s experiences, typical ways of behavior, in the Goffman’s concept tact indicate that we should treat the individual in a specific manner if he/she has a particular set of characteristics, we should define that person as physically fit and in this way we label that person. In the situation when a person has a particular set of characteristics nobody pays attention to this person. As mentioned above – the interaction works without any interference.

Stigma can be perceived from the perspective of the stigmatized person who knows that their diversity is known and visible instantly – in other words, it is the perspective of a discredited person. There is also the perspective of a person who may be discredited, i.e. their diversity is not known or visible instantly, but it can be noticed at any moment. People with the stigma of disability or other often merge those two perspectives [3].

So-called normal society creates different theories, which allow or enshrine the discrimination of people who are more or less stigmatized. In this way stigmatized people are deprived of many rights, privileges or duties. But not only rights, privileges and duties are important here. A fit person may have many reasons to be not able to exercise their rights. In this context for a human being, especially the stigmatized one, the most important thing is inextricably linked to refusal, to deprivation of rights, privileges and duties – it is the feeling of exclusion from the society of normals, the so-called majority, life in the margins or outside the margin. Acceptance is what stigmatized people lack most.

Stigmatization and typification

I would like to point out the common points in Goffman’s stigmatization concept and Schutz typification concept. Typification is connected with every aspect of human life. Incidents in the world, types of action and as well as actors are all subjects to typification. Just like stigma determines human fate, the scenario of his life, also determines and limits a person’s possibilities. If somebody has been ascribed a particular type, if he conducts a typical scheme of action, it is very difficult for him to change anything. According to Schutz it is not a person or personal type that has been changed but it was the wrong type that they have been ascribed [7].

Stigma makes a person stand out in a negative sense, such a person is the one with a defect or frailty. Typification also marks a person – it does not matter if it is in a positive or negative sense. This marking has the opposite effect from stigmatization, it gives the opposite result. Such a person is inscribed in the scheme, they are assigned to some type, they blend into the background. They are not an individual, he is not the Peter I met on my holiday, who had one leg shorter than the other and knew how to pick mushrooms. He is disabled and he belongs to the group of people whose characteristic are legs of a different length. On the one hand, this defect is the stigma as it makes the individual differ from the group of people with legs of the same length, it shows his diversity, it separates him from the society. On the other hand, it can be used as a typification factor and on that basis Peter is ascribed to the group of people with a similar defect, he is assigned to a type of a kind and depending on a level of typification he becomes an anonymous individual.

The dependence between the kind of social relation and the level of anonymity type is significant. In face to face relations stigma is imposed with all its strength when the type does not matter. With the increase in anonymity of social relations the type becomes important and the significance of the stigma decreases. In anonymous social relations two types take part, not the particular individuals [7], [8]. Stigma is important only as a characteristic that assigns the person to a particular group, e.g. people with legs of a different length. It is not important any longer what the individual’s defect is. Like in every typification individual characteristics are not important any more, it does not matter if they are old, young, intelligent or not, etc. I want to emphasize that stigma may occur simultaneously as something that distinguishes and as something that make the typification possible.

It is essential that significant others treat a person like a human, regardless his/her stigma, which may be a disability. We see ourselves through how we are seen in the eyes of other people, we are as the others want to see us or really see us. Identity is given socially but it is also maintained socially – when the social identity of a person changes, soon after that their how they see themselves changes. Berger claims that the society delivers the scenario for all its members, like in theater or a movie. The scenario says what the actor is supposed to do, what character he/she plays and how it should be played [9].

Transactional identities. Stereotypes and prejudicies

Relations with normals that stigmatized people with hard to notice stigma enter is the main field of Goffman’s interest. He does not deal with the relations of the people with visible at first sight or completely invisible stigma. However, in my opinion those two situations are also worth considering. I analyze the first of the above mentioned situations, i.e. the situation of entering the relations with normal people among the people with visible defects. Normal people treat such persons differently than they treat ordinary people who do not have stigma. For example, a blind person is treated as a person with mobility problems, some people would like to ‘help’ them by helping them across the street or helping them on to the bus, etc. A blind person or a person with some other defect is not treated as a full member of interaction or a full member of society, as a ‘full’ person. It is expected that a blind, deaf or immobilized person will behave according to the social identity ascribed to them (according to central category which organizes their life), they are expected to play their role of person with disability so as not to cause any embarrassment, or confusion due to wrongly assigned identity. A stigmatized person must adapt, not the ‘normal’ one. ‘Normals’ care of their for their own sense of well-being, they do not care of the feelings of minority [3].

The person with disability stigma allows themselves not only to be treated in a discriminatory manner, which they sometimes cannot do anything about, but also starts to treat themselves this way, they perceive themselves this way, ‘see’ themselves with the eyes of others, they internalize their attitude. Self-stigmatization ‘allows’ adapting to society requirements, ‘allows’ harmonizing identity. Self-stigmatization is very important here. A person treated as disabled person begins to behave stereotypically, they find the characteristics that are ascribed to them. The labeling is pinned, so one has to live with it.

The so-called majority of society ascribes typical social identities to the disabled because of stereotypes. Those social identities are connected with particular social roles. Disabled people are perceived through stereotypes present in society, e.g. a disabled is often perceived as an eternal child, who will never grow to be independent, who will always need help from others. Another stereotype classifies disabled as poor. And yet another stereotype, connected with the previous one, that being disabled is to be regretted, deserves pity because of his/her condition. Such an unhappy thing happened to him/her and his/her parents or caretakers and they all have to endure it and live with it to the end [10], [11]. It is usual that people think of such a person as a very unhappy one and according to the world this person also contributes to unhappiness of others. But escape from this stereotype may lead to another one, treating disability as a disease. It is often heard that instead of saying ‘I have a shorter leg’ such person says ‘I have a shorter limb’. Using medical language is one of the manifestations of stereotypes [11]. That is the consequence of social acceptance of a medical model of disability. A medical approach to disability leads to objectification of the approach to disability by the disabled themselves. Other mentioned stereotypes include being marked by God or being dangerous due to excessive physical development. But the most common stereotype arising from the lack of knowledge of the disabled is the conviction that disabled ‘endanger the safety of individual and his family’ [11]. In everyday life society treats the group of disabled as the uncertain one, ‘it is never known what they can do’ [11]. Those stereotypical features are ascribed to disabled individuals by the society, the society pins another label, ascribes certain social roles connected with those stereotypes and expects the disabled to accept those roles.

Identity management

Human identity is built for ones’ whole life. What happens in the situation when suddenly an accident causes a beautiful woman to become the woman with a deformed body, what happens to the identity of such a person? Does it change, is it the same identity as the one she had before the accident? What happens to the identity of a fit person, who had a stroke and becomes the person with hemiparesis? What happens when someone acquires a disability? When suddenly a healthy adorable young man who was having a career has to start using a wheelchair and becomes a miserable young man. Psychological concepts describe the stages of getting through the loss of being fit, one of the most known is Kerr’s concept according to which people with acquired disability come through the process of dealing with loss, not necessarily ending successfully. There are six stages: shock; expecting recovery; phase of wailing; adaptation or healthy defense; neurotic defense; phase of adaptation [12]. Reaction to the accident, disability due to an accident or disability connected with a disease can be compared to the reaction to the death of the close person or to information of fatal disease that affects us [13], [14], [15]. As a result of acquiring a disability a person is in the border situation, their whole life changes. Disability impairs all zones of their life. The need of reorganizing their whole life in its every aspect appears, both for the disabled and for people close to him. The self-image in somatic, psychic and social areas changes. Their previous identity is not valid any more, the person becomes a stranger, a different person for himself/herself. All the other social roles he performed until now are suspended. It is like they have been transferred to a world where he will be unable to live in, which is not his world, he is a stranger in his own house. Such a person stops being independent, self-sufficient, causative, they lose their sense of control.

Referring to the Goffman’s concept I will emphasize that when people become disabled they do not instantly obtain the social identity of disabled, their current normal identity stays for shorter or longer period of time, also their personal identity and ego identity are unchanged. So there is a question when this change, the identity reconstruction takes place, what is the change in the personal and ego identity of this person. What is the relation between the constituting/reconstructed social identity of the disabled in a wheelchair with labels and his ego identity which can be described as: me – young, go-ahead, having a career, being rich, admired? Is the personal image in contradiction with social image and will it stay like that? How can it be consistent, what if it stays completely different? How does a person with constant tension in relations between the identity ranges function? Can the identity crisis be constant?

Becoming disabled, noticing ones’ own dysfunction and impossibility to remove it in the first period of disability leads to identity crisis. An individual notices that he/she is not the same person any more, the ego identity zone is disturbed, I am dependant on others, have no sense of autonomy, my separateness zone is disturbed, the continuity of I is disturbed, I have no sense of integrity [14], [16]. Identity reconstruction, finding life aims different than the current ones is a very difficult and complex process which very often ends in failure. Becoming disabled determines self-perception. Allowing irreversibility of losing fitness to get into consciousness, allowing the changes in physical, psychical and social image to get into the consciousness, which is connected with the perception of such a person by others, leads to changes in social, professional and family roles, often to discontinuation of fulfilling the professional role and to exclusion from many social roles. Later on adaption appears, such a person must limit their aspirations with implementing their defensive mechanisms, e.g. valuing less their social or professional roles, lowering their self-esteem [17], [18]. The role of significant others is important as is the support of the institution or social environment.

Referring to the concept of social roles in the adaptation to the new way of living process the following stages can be distinguished:

• Withdrawal from the previously fulfilled roles;

• Identification with the new roles;

• Improvement in the new roles;

• Integration of the new roles with the previous ones [17].

Reorganization of current identity or previous lifestyle is based on the previous lifestyle and identity, on previous resources, socio-cultural assets which is owned by the individual, and many other factors. The following are essential:

• Type and level of damage, the more visible it is, the more it disturbs normal living, the more difficult it is to accept it;

• Dysfunction or disease duration time, annoyance, degree of endangering life;

• Individual characteristics (age, sex, personality, education, fulfilled roles);

• The range and type of social contacts – presence of others can be stimulating or adverse if they show pity, repulsion or rejection;

• Economical situation – possible chance of undergoing the body reconstruction surgery or purchase of specialized equipment which makes life easier, e.g. prosthetics, wheelchairs [17], [18].

The content of sad experiences concerns the most important aspects of life. Krueger points out that the most traumatic experiences connected with acquisition of disability associated with, e.g. body defect, concern mostly adults who attained disability unforeseeably, unexpectedly. Children who are born with disability develop their own identity taking into account the existing problem of defect or deficiency. That is the immanent element of their concept of self. They acquire knowledge of their disability gradually, the most often they are informed by their parents, caretakers or significant others. It gives them time to psychically adapt to their disability. Pain, suffering in that situation has no nature of violent psychical trauma [19]. On the other hand, it may lead to the creation of a spoiled identity or a homilopatic identity as it was defined by Jakubik [18].

People with inborn disability from the beginning form their identity as a disabled. Since birth they are prepared/raised/educated to take the role of a disabled person in society. Should the person who acquires disability undergo such accelerated adaptation? Does such a person really want to take the role of a disabled person in our society? Do they even have a chance to make a choice if their disability is the main organizing category which arranges their life? Taking into account the type of person they represent, society will ascribe them the role of a disabled person. Does such a person make a conscious choice to get into this role? Or are they forced by social expectations?

Trauma associated with body damage depends not only on the abruptness of the defect and time of its appearance. Kowalik claims that trauma is determined also by the size and location of body damage, its influence on the general condition, visibility of the defect, the noticed possibility of physical restitution of the damage, previous body damage experience, memory of the accident which caused the damage and identity characteristics of the disabled individual [20].

Being aware of damage, dysfunction, disability determines more or less the necessity of reliance on others. It leads to restricted autonomy and independence, it is connected with the insecurity, high emotional tension and stress [17].

Assuming that there is the possibility of managing the identity or identities, is it easier for people with disabilities to function in society in a changing environment? Does identity management allow acceptance of such an identity which suits us or the one which is imposed on us by the people around us? Does having an ego identity protect the disabled from stigmatization? With the chance of taking on social identities, presenting the self in this or that way, it would seem that we have a chance to present ourselves in a beneficial manner. It can be true but only in situations thus described by Goffman. Namely presenting ourselves in a better light, our better side which is only possible when we can hide, pass some information about ourselves, then the stigma is not visible instantly. But in the situation when the stigma is imposed forcefully it becomes the main category which is the basis for defining the social identity of a person. In the situation when after gaining the disability a person is constantly hit with their image changed by disability, other perceptions of themselves from others, especially significant others, when they still receive the information that they are disabled, that they cannot function on their own, that they cannot make themselves coffee or other simple things, that they are dependent on others, they get the image of a person that needs to be helped, who has experienced something so unhappy, how long will they manage to put up with their own image, how long will their ego identity stay unchanged? They additionally get the message that they have to accept their condition and that nothing will change just they have to change themselves. The society expects them to adapt, to take in the offered image, they are forced to take in the definition of the situation [21], [22]. The ranges of identity listed by Goffman are inextricably linked. In the situation of gaining disability, the changes of social and personal identity determine the changes in ego identity.

Conclusion

Through contacts with significant others an individual builds his/her identity, he/she places himself/herself ‘on the map of structure and prestige’, he is inclined to admit the particular role in his closest environment and to classify himself in the particular place of the social identification structures. Identity is given socially, but it is also sustained socially – if the identity changes, the self-image also changes very soon. As Berger claims, society delivers a scenario for all its members like in a play or a movie [9]. We see ourselves through our image in the eyes of other people, we are what the others want to see or see in us. Becoming disabled or life with a disease is commonly perceived in the category of failure. Disability, disease are at odds with the contemporary types of success, career or personality that are promoted in social life. Institutional contacts also influence the reconstruction of identity a lot. The relationship of the disabled person with medical, rehabilitation, social assistance, educational institutions are deeply dependant, even subordinate. How does that type of experience influence people with disabilities? Those relations are often negative, they are largely responsible for the next stage of stigmatization.

Autonomy and independence of the disabled is very often limited, being self-sufficient and independent cannot be taught in the care centers that operate in isolation from everyday issues and problems [23]. Becoming disabled or experiencing a disease leads to exclusion and social marginalization. It is in the isolation and on the margin of society where the person has to rebuild their identity. What will it be like? Every step of the way the significant others, and the society show people with disabilities that they are worse than others, that they are not normal.