Alexandra Kogutenko

(Saratov State Technical University)

Strategies of Life Success and Self-Empowerment of People with Disabilities in today's Russia

The paper deals with the life-strategies and social mobilization of people with disabilities who find a means of self-empowerment through third sector organizations and informal networks. The biographical research helps highlight coping strategies and factors of success of the disabled in todays Russian provincial city.

The decade of the 1990s shows considerable political, economic, social and cultural transformations in Russia. In modern Russia all institutional structures are changed: property and power relations, labor and employment, social mobility, distribution of income. The scope and depth of change has been dramatic in regards to the lives of ordinary people: in many Russian regions two thirds of population are living below the poverty level. The breakdown of state economy have caused rapid decrease in the quality of life of the majority of population, a set of new social problems, further deterioration of the position of poor, disabled, elderly and children.

People with disabilities are in a specific crisis situation: ascribed with the pensions and benefits which are to supplement living expenses but are insufficient. Many disabled have lost work, and could not find a new, or they often have to refuse taking the job for incompatibility of the job placement with the needs of the employees with disability. Although job programs for the disabled exist, they are not effectively adjusted to labor legislation and are misused by employers, while the social services can help only a few to find proper job. Today the operational system of professional rehabilitation faces a huge number of organizational, financial and methodological problems, associated with the necessity to change general philosophy and the mechanisms of offering assistance to increase the competitive strength of disabled people in labor market.

In order to survive many people with disabilities (and some pretending of being disabled) by the early 1990s started begging on streets of big cities, in front of churches, in subways and even on roads with busy traffic. Thats why an image of the disabled was created as a helpless, poor and useless man (a woman with disability rarely goes for begging). This myth is an obstacle in ways of successful integration of people with disabilities in a society.

However, it would not be correct to admit only the marginalized position of disabled people in Russia society. For the other disabled this is not the way of coping with a hard life situation. They are not taking for granted low status of people with physical impairment and combat the mainstream image of the disabled. Despite of many difficulties, they achieve life success by changing prevailing representations of disability. Many people with disabilities have obtained high social status and respect; they not only succeeded in their businesses and families but also they help to empower people who are alike. It is important, therefore, to research and disseminate their experience of not just survival but dismantling the physical and social barrier and challenging the image of the disabled as an helpless and useless person. The necessity of research is thus determined by the importance of the analysis of social factors, which promote life success of disabled people.

The problem of life success and self-empowerment of the disabled is discussed today rather widely in international context. This problem is of complex character and is a focus of social anthropology, sociology, social work, legal studies, economics, medicine, and psychology. While in Russia social explanation of disability is accepted rather narrowly, the most common model to think about disability in Russia is medical and administrative. It means that a person with disability is considered as an ill, (s)he is diagnosed and ascribed with a pension and benefits which are to supplement living expenses but are insufficient.

In the tradition which has been adopted in the Soviet period, the physical disability was accepted for examining mainly in the light of medicine and social promotion. A clinical approach, for instance, has been used in works of I.V.Vedrov, A.M.Dremluk, N.M.Zaharchenko, A.P.Kotov. At the same time in the Western sociology there was a perspective which aimed to examine a problem of limited opportunities as a subject of sociological analysis. The following scholars represent this perspective: P.Higgins, C.Safilios-Rothschild, R.K.Scotch, M.Oliver. The consideration of disability as a sociological category was determined not so much by diagnostic criteria and necessity of rehabilitation, but rather by special social status of the people with the limited opportunities. Such a view was developed in recent works of Russian scholars T.A.Dobrovolskaia, E.R.Iarskaia-Smirnova, E.K.Naberushkina, S.P.Peshkova, S.V.Stepukhovich, N.B.Shabalina, N.V.Shapkina, D.V.Zaitsev.

Thus we can distinguish the following models or concepts of physical inability: medical, functionalist, economic, administrative and social.

Within the framework of medical model a physical inability is determined as a long-term impairment or chronic condition, which complicates daily activity. Thus "normal" is a person who has no medical pathologies, otherwise s(h)e is considered a disabled, which is understood as a passive patient who depends on a professional care. This model sees all people with disabilities as patients and thats why the main way of treating the disabled is curing. Thus this model promotes fastening of stereotyped representation about the people with disabilities as patients and helpless, unable to carry out functions along with the healthy people. This idea is reflected in a functionalist model of physical disability. Medical and functionalist models are in todays Russia the bases of conducting medical-social examination and identifying the eligibility and the needs of a person in measures of social protection. Thus both models ignore a role of social barriers and restrictions in reproduction of physical disability. Therefore the access to system of social support for the person with disabilities depends on a presence of a label "disabled". This label has got a negative shade in Russia as a result of domination of the officially accepted medical model of physical disability and has stressed difference of a person with physical disability from other "normal" people.

From the point of view of economic model the disabled are the persons unable to work with the same workload as the healthy people, or unable to work in general. The physical disability is considered as inability to possess economic independence, leads to dependence upon the state. Such model stresses that the disabled people can not be active members of a society, to participate in professional life.

Higgins believes, that all four models mentioned above lead to the "individualization" of disability. They do not consider physical disability as a consequence of interaction of the individual and social environment and form so-called individualizing approach. Consequences of application of such approach are social isolation and discrimination of the disabled persons. We completely agree with this statement and we think, the domination of such models is the mechanism of social exclusion of people with disabilities. So, as a rule, lowest place in structure of a society fixing for them.

First of all administrative model is focused on creation and development of systems of support as specialized establishments, organization of special training, employment, social service of the people with disabilities. However the employees of social services, teachers, doctors make decisions here, but not disabled people themselves. Frequently, when coming to such establishments, the disabled is protected from the "hostility" of a society, on the one hand, but from another hand he/she becomes excluded from this society.

As social model assumes, disability is not just the limited functions of organism but limitation of opportunities as a result of inappropriateness of physical and social environment to the needs of the disabled. So called eco-social perspective understands problems of the individual, group, family in a context of the relations with a social environment, where the major structural characteristics is a factor of culture. The social model is based on understanding of limitation of opportunities of the disabled people as problems, for which all society is responsible. This model demands equal opportunities and equal rights for all. The rights are provided with the legislation, which, however, can not guarantee the tolerance in relation towards people with disabilities. Therefore, work on change of the social attitude for physical disability is of special importance. From our viewpoint, this approach emphasizes the opportunities for the disabled to have success in life due to the factors of abilities and environment.

In Russian social sciences the disability issues were limited to medical and psychological branches as a focus of theoretical and empirical research. The main reasons are that the physical disability was considered as a medical problem, on the one hand, and as a problem of an individual, from another hand. Even when physical disability was a focus of sociological analysis, the research would be carried out in a perspective of medical sociology, and the representatives of this direction did not challenge at all concept of an individualization and medicalization of disability.

Since 1960 in West there were significant changes in public consciousness at all levels: cultural, legislative, social, political as a result of reconsideration of traditional understanding of disability, and along with the development of international movement for protection of the rights of the people with disabilities towards creation of equal opportunities for the disabled. Earlier research and practice of rehabilitation were orientated on the adaptation of the disabled people to society. The emphasis in western sociological researches of physical disability is displaced from study of features of functions limitation to the study of a social environment and negative social attitudes. Our sociological research stresses those social factors in life of the people with disabilities, which promote achievement of their life success.

The basic method of research was biographic interview. The biographic interview has allowed me to collect histories of life of the people with disabilities, which have reached success in their lives. The biographical approach in its phenomenological perspective provides us with an in-depth insight into the life-situation of ordinary people in context of social and societal changes which occur in the wider community. The collection includes stories of people of different ages who have severe motor impairments caused by cerebral palsy and polio disease. The informants live in the city of Saratov, Russia. In order to highlight the role of significant others in their success, I have also interviewed the closest relatives or life partners of my informants with disabilities. In studying the theoretical and comparative issues of the research problem, I referred to the works by M.Oliver, M.Priestley, T.Shakespeare and E.Iarskaia-Smirnova.

I thank my colleauges and advisor who generously offered me to analyse their collection of interviews with people with disabilities. For my analysis I have choosen five histories of men and women, which are overcoming barriers and obstacles: social-economic crisis in Russian society, stereotyped representation about feebleness and uselessness of the disabled. They have achieved success in creation of career and family, become the leaders and active participants of various organizations.

In the research we were guided by the people with the physically limited abilities, which are not taking for granted low status of people with physical impairment and combat the mainstream image of disabled. All of them have achieved high social status and respect. Not only have they succeeded in business and family, they also help people with similar problems to life fruitful life in a society. They are the founders of informal networks of mutual aid, through which people with disabilities can become friends and choose education, to find job probably even faster and better, than through an official service of employment. Therefore I consider research and dissemination of their good experience as very important, as it will promote not only survival of the disabled, but also overcoming of a physical and social barriers. Besides, this research can help in self-empowerment, as it can change a negative image of the disabled as helpless and useless person.

The agents of socialization process has a direct influence on the formation of successful life strategy of the disabled, achieving his/her higher social-professional status. The results received during the analysis of interview have demonstrate an important role of nearest environment (family, significant others, including disabled and non-disabled persons, education) in early childhood and during all life span. The degree of family involvement (e.g. family versus boarding school socialization) influence further life trajectory of an adolescent with impairment. The goal-oriented approach becomes a key-method of coping with difficulties as the person is growing up.

Thus I would like to pay attention to those agents socialization, which directly promote achievement by the people with disabilities of social and professional success. The first and main people in life of the man become his/her parents (family). Since early age they support the child, care for him/her, take part in constructing his/her identity: "with the help of the parents children get strong character" (f49), "the family upbringing is important. My parents are the remarkable people with higher education, they have given me a good education. As much as I remember myself, I constantly was in sanatoriums on treatment" (f49), "and generally I was in family surrounded with attention: Tanechka, Tanechka [the respondents gentle name in her childhood]" (f49), "I felt, that I wasnt the superfluous person in a mutual relation of the father and mother" (f49). All respondents mentioned, that their parents constantly tried to be near, to help. The relatives were also of support for the child with disabilities: "In childhood, I remember there were a few friends, and among the real friends there were relatives: a sister, brothers, but other children thought we were social outcasts and may be teased constantly" (f49). At a later stage of life of the disabled the friends appear apart from the relatives. "I have real friends already of very long time. Both we help each other with all we can, it is perfect unselfishness. But I have practically no friends from my childhood"(f49). Another situation will be in a case when the child lives in a boarding school, surrounded by equal.

One important agent of socialization is educational system. Special facilities for disabled children were established in Soviet Russia to provide both treatment and education. In addition to clinics, nursing homes and boarding schools for children with different impairments, there were also vocational schools for adolescents, with residential facilities attached to them. Children lived and studied there, gaining skills and certificates for one of a few occupations that disabled people were considered capable of and eligible for. Although a few of these institutions had much experience, and provided exemplary care, many compromised themselves and have come under scrutiny, by Russian journalists in the 1980s and now by international human rights organizations, for their methods of diagnosis and treatment. However, it would be a mistake to conclude simply that life in these institutions, and the wider society, provided children with only harmful and disabling environments for their socialization. There were also some significant achievements in the area of special education and vocational rehabilitation. Some staff acted as advocates, making great efforts to help and empower children (see Iarskaia-Smirnova 2001b). Interviews showed how, when there was nobody else to rely on, disabled children and adolescents also became such advocates.

However, education played an ambivalent role in the life of the disabled. Living in a special boarding school, the children with disabilities were used to be cared for, to have peers, to make friends. At the same time, it prevented them from social integration, as the society as a whole got used to isolate such children and adults into special institutions. As one woman mentioned, at first, I have been thrown into the boarding school, and then, I have been thrown out in the world (f45). She told about her difficulties to adjust in the society after she graduated from the boarding school. Such school graduates rarely enter high school, as our research shows.

Interviews show what role they give to the state in their life. Official bodies, welfare offices, pensions, workplace - the state determines their abnormality, it defines how the people with disabilities should live, which education they are to receive, where they will work, and who should work directly with the disabled, which organizations are necessary to them. Such issues were also solved by disabled themselves in public organizations created by the disabled. However, the obvious results for the present time are not achieved: In Soviet time, not only parents, but also the state paid big attention to such children: [for example] the [free of charge] permits for resorts. On that resorts they [the disabled] were not only treated, but they also were trained. Even further many of them have endured operations, but have received high-grade education. The teacher came each evening and very strictly asked [for homework]" (m28). Now it is possible to note, that the state has become less attentive to atypical children. In absence of granting of the free-of-charge permits on treatment in sanatoriums (very insignificant amount); in poor quality of training in the specialized establishments for the people with motor impairments, at individual training of the child one can see, that sometimes the teachers are indifferent in teaching, a special boarding school has rather limited set of disciplines in comparison with a comprehensive school, a teacher can miss the lessons "they can miss the lesson and it is OK", "and they sometimes ask me not everything [while] I have learnt and would like to tell" (m28).

A big problem is presented by built environment and public transportation. Difficulties in movement are noted as social problems: "we do not have conditions for unobstructed movement of the invalids. I approach some place and can not go there because the height of steps now is 1,5 times above than standard. And it is necessary to me to climb on it and ask someone to help. And not every disabled can ask, would hesitate, (s)he will estimate height and turns back. It happens now entirely and everywhere. I do not say about a handrail and ramps. They simply do not exist" (f49), also transport is not adjusted for the disabled: "In summer time the disabled can reach the place (s)he wants, but in winter when the is ice, they can not." (f49)

The state seems to not only hinder successful social adaptation of the disabled, but to give an opportunity to overcome barriers. For example, the disabled of the 1st and 2nd groups of handicap (according to Russian system of classification) have a quota to be accepted for studies in high schools. However, this is not fully realized partially because the buildings of universities are not adapted to the needs of students with disabilities: "the special conditions are not in place. For me the large problem is how to come, to go, to approach a table to put a copy-book, to write down the lecture."(m28)

Urban life in provincial Russia is not easy-suited for the needs of the disabled, especially of those who have motor impairments. The unadjusted built environment as well as public transportation hampers for people the access to such important values as education, job, arts and recreation. In Russia special state legislation concerning building construction adjusted for people with impairments did not exist until the 1990s. Even now, only a few new buildings have been designed for access, while the major part of the built environment, as well as public transportation, remains inaccessible for many people with disabilities. But social class, and primary socialization in boarding school, set up the limits of their choice more than their impairment. Several of my respondents grew up in their own families, entered and graduated from college. With few exceptions, the boarding school graduates rarely gained any education higher than vocational school (see Iarskaia-Smirnova 2001b).

Because of barriers in physical environment, as a rule, the disabled choose correspondence (extra-mural) program allowing them to spend less time in educational establishment. Among the subjects, which are preferably chosen by people with physically limited abilities there are: lawyer, economist, programmist, seamstress, foreman on manufacture of everyday needy goods. It occurs because these specialties allow to apply in home based work. It is an important condition for the disabled who have difficulties with movement. Thus, the vocational training allows to get not only economic independence, but to become useful to the surrounding people, to win respect and recognition.

In strategies for success in the life of the disabled their aspiration to reach their goals is important. Frequently due to the persistence and desire a person reaches the goals, even if influence and the help on the part of the parents was minimal. Also, as my research demonstrated, social stereotypes are not easy to overcome, alongside with financial and physical difficulties. The social organizations for the disabled people try to cooperate now with commercial organizations and introduce new services supported by the government and/or private sponsors. This joint help gives rise to the new useful programs on the basis of the individual initiatives.

It is possible to see that among necessary qualities of personality which are a pledge of success are purposefulness, "a feeling of leadership" - when there is desire to be the leader, to be self-confident, to have self-respect and human dignity as well as to manage a team, a network. One respondent mentioned, If I cannot do something, it is no problem for me for I can always find and ask a person who will do that for me, who will help me because I have helped her or him in some other way (m48). One woman who recently moved to a new apartment, felt alone and unsupported there but she found the strenghts to advocate for herself in alien community she told me about her victory in a dispute on garbage cans which she insisted to move away from her windows.

An important role is played by the physical activity of the people with motor impairments, their engagement in sport. In Saratov there are sport clubs for children and adults with disabilities (see Iarskaia-Smirnova 2001a). A sport club "Spartak" is one of the examples. One of our respondents is a leader of this club Yuri Kazakov who thinks that sport activity promotes achievement by the disabled in areas of professional and life success. Thus, sport is another important factor in self-empowerment of people with disabilities.

The life success is understood by disabled is first of all as overcoming of prevailing stereotyped representations about physical disability "we are alike the others"; vocational training gives a chance them to occupy a desirable niche in a society. Those who have vocational training are the most active members of a society, achieve professional and life success, form the feelings of self-confidence and develop new positive life strategies. In achievement of a goal in life personal qualities, character features can be a very significant factor but they are formed in social environment where a very important role belongs to family, friends and significant others.

 

Conclusion

My research was focused on an analysis of the biographies of the disabled women and men who in spite of social-economic crisis in Russian society and in spite of their limited physical abilities succeeded in their careers and families, became leaders and active participants of non-profit organizations. The preliminary research findings demonstrate the role of nearest environment (family, significant others, including disabled and non-disabled persons, education) in early childhood and throughout the life-cycle. The type of school (e.g. boarding school versus regular school), degree of family involvement (e.g. family vs. boarding school socialization) influence further life trajectory of an adolescent with impairment. The goal-oriented approach becomes a key-method of coping with difficulties as the person is growing up. The research demonstrated also, that along with the financial and physical difficulties, social stereotypes are not easy to overcome. The third sector organizations for the disabled try to co-operate nowadays with business sector and with the new services supported by the state. The paper shows how this co-operation helps build new and fruitful programs out of individual initiatives.

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