Olga I. Borodkina and Yulia S. Victorova, St. Petersburg (Russia)
According to official data there are more than 780 000 disabled people registered in St.Petersburg, representing about 17 % of the city’s total population; among them more than 80 % people at pension age (almost 645 000), about 16 % are people at working age (over 120 000) and less than 2 % are disabled children (almost 14 000).
Social protection of people with handicaps is one of the priority issues of social policy on the national and local level in Russia. However despite of the active measures undertaken by the Government of St.Petersburg, it is necessary to admit that many problems concerning the quality of the disabled people’s life remain unsolved. In this context it is extremely important to take into account the point of view of people with handicaps. These circumstances have determined the tasks and methods of the sociological research conducted in 2009 in St. Petersburg.
The main research method was interviewing of people with handicaps which was carried out based on semi-structured questionnaires with a significant number of open questions. The questions concerned different aspects of quality of life of people with handicaps (in particular education, employment, mobility, attitudes of the society towards disabled people etc.).
The research aims were to find out the most significant problems of three main groups of disabled people, namely people with disabilities such as limited motor skills, visually handicapped people and hearing impaired people. As a result the research sample consisted of 96 respondents, among them 60 respondents were people with limited motor skills, 15 respondents were visually handicapped people and 21 respondents were hearing impaired people.Also 14 expert interviews were carried out in the framework of the research: interviews with the heads of non-governmental organizations, specialists on rehabilitation, specialists in social work, psychologists and heads of departments, teachers and social pedagogues.
The analysis of the research results allows to argue that the medical model of disability is still dominating in the sphere of social support. Within this model a person with handicaps is considered as a person with stable physical, mental, intellectual or sensorial disabilities and due to this fact all efforts are directed to improve or maintain his/her physical and mental condition.
The modern approach to social support of people with handicaps has to be based on the socially oriented model of disability which considers disability as a social construction. Disability is not just the condition of a person, but also the result of his/her relations with the social environment.
Barriers of the existing environment including social, legal, cultural issues are the main reasons of the social exclusion of people with handicaps. They represent also the main barriers for full and effective participation of disabled people in social activities. Therefore from the position of the socially oriented model the basic efforts should be directed not only on the improvement or maintenance of a physical condition of disabled people, but also on overcoming environmental barriers, on stimulating the process of interaction between disabled and other people, on their inclusion to social life.
45,8 % of all respondents are male and 54,2 % are female. By the age structure of the respondents is divided: 7,2 % (7 persons) of the respondents were under 20 years old, 35,4 % (34 persons) were between 20 and 30 years old, 16,6 % (16 persons) were 30-40 years old, 13,4 % (13 persons) were 40-50 years old, 5,0 % (5 persons) were between 50 and 60 years old; 21,3 % (21 persons) were over 60. The majority of the respondents had high school education – 30,2 % (29 persons) – and technical school education – 32,3 % (31 persons); a large part of the respondents had higher education – 24,0 % (23 persons) – and undergraduate education 7,3 % (7 persons); 6,3 % of the respondents (6 persons) had middle school education. Thus people with a different educational background were interviewed within the research.
The main part of the respondents at the moment of interviewing were unmarried: 59,4 % of the respondents (57 persons) were single. 20,8 % of the respondents were married, 7,3 % of the respondents had a partner. A small percentage of the respondents was divorced (4,2 %, 4 persons) and 8,3 % (8 persons) were widows.
Thus, the main part of the respondents (35,4%) in the age of 20-30 years was in a phase of life when searching for a partner and planning a family is usually focussed. Also the interviews demonstrated that a lot of the respondents have many difficulties with family planning which allows to suppose that it is necessary to develop communicative skills and organize trainings for further family life for people with limited possibilities.
To make the situation clearer the respondents were asked more questions about people with whom they live and their satisfaction with housing conditions. Almost half of the respondents lived together with their parents (45,3 %) during the time of the research, 21,9 % of the respondents lived with husband/wife/partner, 17,9 % lived with relatives, 2,1 % lived with friends and 12,6 % of the respondents chose the option «other» i.e. ex-husband/wife or alone. It was predictable that 45,3 % of the respondents live with their parents, on the one hand because of their rather young age (under 30), but on the other hand, due to social economical conditions which are not good enough for disabled people to live independently.
It is necessary to notice that the number of respondents living with a husband/wife/partner is less than the number of respondents who have specified that they are married. These data also indirectly confirm that there is a problem of creation of a family and its sustaining.
It is interesting to observe how the answers were divided on the options «living conditions» and «level of satisfaction». The results are presented on the diagram:
The data presented on the diagram show the low level of satisfaction by living conditions among the respondents. Especially respondents who live in a room in shared accommodation and people living in a dormitory and in a one-room apartment. Also respondents living in a four-room apartments were not satisfied. It is possible that this was caused by difficult relationships with relatives, as it is mostly respondents are under 25 living with parents, or not handicapped accessible equipped. It is necessary to notice that the significant majority of people with limited possibilities do not see any chance to improve their living conditions.
The essential indicator of quality of life for any person is income. The respondents were divided by the level of their monthly average income: 25,0 % of the respondents had a minimum subsistence income. The main part of the respondents (36,5 %, 35 people) had 5000- 10 00 rubles per month, 10,4 % (10 people) had 10 000 – 15 000 rubles, 5,2 % (5 people) had more that 15 000 rubles per month and 22,9 % (22 people) did not answer this question.
The data prove that the level of income of disabled people is usually very low. The main source of income for the majority is the disability pension (58,3 % or 56 people), another important source is the salary (21,9 % or 21 people) which is still rather low. Among other income sources the respondents have specified support from relatives, old-age pension and scholarship. It is illustrative that the large number of the respondents didnot answer the question about their monthly average income, just because they were not aware of it. First of all, it concerns the respondents living with parents who mainly solve all questions, including financial questions of their already grown up children. This fact confirms the widespread opinion about the passive life position of many people with handicaps and about their insufficient social competence.
The main prospects of increasing the quality of life of people with limited possibilities might be connected to their professional education (also increasing qualifications and retraining) and further employment. That is why the question of training and professional education is one of the key questions within the system of social protection of people with handicaps.
There are opportunities for disabled people in St. Petersburg to get qualified professional education in special professional rehabilitation centers. However, the main part of the state educational organizations of high and higher professional education is not equipped to provide access for disabled people and so despite legitimized equal opportunities for all people within the system of general and professional education it is still closed to them. Besides, the present system of professional education for disabled people offers a limited number of professional specialties and does not fully correspond to the demands of the labor market and as a result rather often the professional education does not increase the competitive ability of disabled people on the labor market.
It is necessary to notice that in St. Petersburg and Russia as a whole, nowadays there is not enough attention to problems of inclusive education which demand to create conditions and an infrastructure of education not only in specialized social organizations, but also in general educational institutions at different levels (high, vocational high education and higher education).
Professional education is a step to further occupational activities; the majority of the respondents, who were studying at the research time, were going to work on a chosen specialty after trainings. The municipal employment centers and specialized branches of employment services provide full information about vacancies in different organizations for disabled people and help them to find a job. But in reality it is still too difficult for disabled people to find a job. The respondents estimated their chances to be employed as follows (see Diagram 2: Opportunities to be employed):
As we can see the main part of the respondents supposed to search for the job by themselves without any help from employment centers. One of the experts sid: «Employment is the first problem. Some people try to be occupied and keep their disability in secret. Just to be occupied».
There are legal documents aiming at helping in terms of disability people’s employment, but this does not work in real life.
One of the key notions of social protection of disabled people in Russia is rehabilitation. Rehabilitation of disabled people is a system and a process of full or part restitution of abilities of people with limited possibilities to household, social and professional activities.
Rehabilitation of disabled people is directed at reduction or as full as possible compensation of activity limits caused by deterioration of health with stable body’s dysfunctions aiming at social adaptation of disabled people, increasing their financial independence and integration to society.
By the Russian legislation, rehabilitation of disabled people has to be realized in the framework of «the individual program of rehabilitation» (IPR) which is a complex of optimal rehabilitation measures for disabled person including certain kinds, forms, extent, time schedule and way of realization of medical, professional and other rehabilitation measures aiming at restitution, compensation of affected or lost body’s functions for certain activities. (Federal Law «About social protection of disabled people in RF, artc.11»).
The IPR of a disabled person has to include the following main aims:
- Medical rehabilitation is carried out by medical organizations at the medical service place and includes ambulant and/or hospital treatment, medical assessment and sanatorium-resort therapy.
- Social rehabilitation includes: social-environment, social-pedagogical, social-psychological and social-cultural rehabilitation, social and household adaptation.
- Professional rehabilitation includes: professional orientation, training and education, assistance in searching for a job, professional adaptation.
On the basis of the discussion with the respondents it is clear that a significant part of the people with limited possibilities has the opinion that the mechanism of «individual program of rehabilitation»’s realization very often is not corresponded to the goals of the program. 65,6 % (63 people) of the respondents use these programs, 21,9 % (21 people) do not participate in it, 12,5 % (12 people) could not answer.
Thus, a rather large part of the respondents with limited possibilities don’t use IPR, moreover many respondents explained it by lack of information. It is possible to suppose that the respondents who couldn’t answer either don’t use IPR or this program is not effective. The assessment of the IPR’s effectiveness by the respondents is presented in the diagram.
As we can see about one third of the respondents who use IPR consider IPR as effective and very effective. The reasons for this low assessment of IPR’s effectiveness expressed one of the experts: «IPR should be developed taking into account the individual characteristics of the person. Only his/her needs. But we have the same kind of IPR for all people».
One of the main aims of social policy in the sphere of social support of people with limited possibilities is connected to the creation of an accessible environment, i.e. an environment which is equipped according to the special needs of a disabled person or groups.
The practical indicator of environment accessibility might be visiting public places and organizations. On the diagram the answers of the respondents who never visited such places or visited it not more than once per month are presented.
The research data show that disabled people are limited in their social activity. One of the main reasons is not enough mobility in public places, but not the only one:
But it is necessary to note that the level of accessibility of many public places (especially modern buildings, i.e. shopping and recreation centers) is higher than the frequency of visiting it by people with limited possibilities. In the interviews many respondents demonstrated a passive position and lack of willing to be included to the social life, lack of motivation to have an active life.
This conclusion is proved by the experts’ opinion: «It is sure that they have fears and social phobia. As well as lack of communicative skills (only parents, relatives and close friends)». «They don’t know and are not able to interact with other people». Obviously, very often people with limited possibilities need psychological support and trainings for the development of their communicative and social skills.
Thus, the development of accessible environment demands not only creation of appropriate infrastructure (which is the key point), but also the development of social competence of people with limited possibilities. It is clear that this problem has another side, i.e. attitudes of the society to disabled people. In this connection it is impossible to overestimate the role of mass-media. The problems of people with limited possibilities recently has become discussed in mass media, but by the opinion of many disabled people it’s still not enough. 64,6 % of the respondents (62 people) believe that there is not enough information about problems of disabled people in mass media. Only 7,3 % of the respondents (7 people) think that it’s enough.
Answers to the questions about kinds of the information which is not enough can be divided into 2 groups. First, the respondents would like to have in mass media information addressed, first of all, to the people with limited possibilities. In particular respondents are suffering from lack of information about specialized social programs, legislative information, information about opportunities to be employed, about technical tools of rehabilitation, about sport for disabled etc.
The second direction of mass-media development is connected by the respondents to the information about disabled people addressed to all the population. In particular it was answered: «population has to know that these people exist and doesn’t stay away from them», «that they are the same people as others» etc.
Mass media, certainly, play a major role in the formation of the attitudes of a society to the people with limited possibilities. It is necessary to notice here that despite of the positive tendency, the society is still insufficiently tolerant to disabled people. In particular only 17,7 % of the respondents specify the attitudes of society to disabled people as well-intentioned, 10,4 % as tolerant, 30,2 % as indifferent, 16,7 % couldn’t answer. 25,0 % of the respondents chose the option «other» and answered this question they just specify it as negative, for instance like «disgust», «squeamish», «antagonism» etc.
In this case it is important to say that people with handicaps believe that mass media have to help not only to form tolerant attitudes, but also to develop «the positive image of the disabled person». That’s why mass media are expected to provide information about achievements of people with limited possibilities in different spheres of social activity.
Still the expectations from the Government activity on increasing the quality of life of disabled people are rather high. At present time the Government of St.-Petersburg makes concrete measures on social protection of people with limited possibilities. Many activities of the Government have received a positive estimation from disabled people, in particular the improvement of the transport service for disabled people was mentioned, positive shifts concerning environment accessibility (ramps for people with locomotor system’s disabilities), development of the system of rehabilitation services, etc., many respondents noticed that now there is more attention to the disabled people from the state.
However there were a lot of critical comments concerning following spheres: 1. lack of accessible environment, people with limited possibilities still feel extremely uncomfortable; 2. there is anevident lack of rehabilitation centers and recreation places available for people with t limited possibilities; 3. problems of getting professional education, higher education, not enough choice of occupations available for disabled people, lack of opportunities for inclusive education; 4. problems with employment; 5. not enough cooperation of public authorities with non-governmental organizations; 6. problems with getting technical tools of rehabilitation; 7. lack of the information; 8. very limited opportunities to organize leisure time for the disabled people.
The existing system of social support of people with limited possibilities in Russia causes a lot of critics from the disabled people and experts. At the same time it is necessary to highlight significant positive shifts initiated by the Government to improve the quality of social services for people with limited possibilities and activization of non-governmental organizations working with disabled people which play an important role in advocacy of disabled people’s interests. However, public authorities should in practice follow the conception of disability,which is a product of social relations and admit that disability is a reflection of social, technological and legal aspects of society. The main efforts of public authorities in the field of social protection of people with limited possibilities are directed to the creation of anaccessible environment, i.e. the environment creating with taking into account of disable people’s needs. But today the accessibility is estimated only from the technical infrastructure’s point of view, when the social model of disability demands to estimate it by the criteria of quality of life, level of social integration, observation of human rights. The significant changes in the field of social work are also needed. Social work besides the traditional social services has to aid the development of ability of people with limited possibilities to live independent and manage their own life.
Olga Borodkina is Associate Professor at the Faculty of Sociology of the St. Petersburg State University. Yulia Victorova is PhD student at the Faculty of Sociology of the St. Petersburg State University.
Picture: www.pixelio.de (Photographer: Maria Lanznaster)