"What the future will bring i do not know": Mothering children with disabilities in Russia and the politics of exclusion

Frontiers

Volumn 20, Issue 2, 1999, Pages 68-86

  Iarskaia Smirnova, Elena ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

EID: 0033473774     PISSN: 01609009     EISSN: None     Source Type: Journal    
DOI: 10.2307/3347014     Document Type: Review

References (36)

1. Ludmilla V. Popova, "Otnoshenijek Sociokulturnym Roljam Zhenshin: Krosskulturnoje Issledovanije" ["Attitude Toward Sociocultural Women's Roles: Crosscultural Research"], in Gendernye Aspekty Socialnoy Transformazii [Gender Aspects of Social Transformation], ed. Marina M. Malysheva (Moscow: Russian Academy of Sciences, Institute ofTransformation, 1996), 161-74.
2. See Bernice W. Madison, "Programs for the Disabled in the USSR," in The Disabled in the Soviet Union: Past and Present, Theory and Practice, ed. William O. McCagg and Lewis Siegelbaum (Pittsburgh, Penn.: University of Pittsburgh Press, 1989), 167-98.
3. See Human Rights Watch, "Summary and Recommendations," in Abandoned to the State: Cruelty and Neglect in Russian Orphanages (New York: Human Rights Watch, 1998), 1-11. Human Rights Watch has concluded that strong biases exist in Russia against adopting any relinquished child because of a fear that "the child will in some way be 'damaged goods' [stemming] from the knowledge that mothers of mentally and physically handicapped children are routinely advised by doctors to put their baby in an orphanage and 'try again.' Consequently, healthy babies who are given up for financial or domestic reasons are unfairly branded 'defective'" ("Summary and Recommendations," 2).
4. All demographic information about Saratov cited here was obtained from the Saratov Social Security Department, Saratov, between 1994 and 1996.
5. One example of the decline in public spending is provided by examining the number of preschools available to children between 1980 and 1993. During 1993, the number of preschools of different kinds (crèches, kindergartens, preschools, children homes, child care centers) in Saratov diminished by 105 and in 1994 by 80. Correspondingly, the number of children attending those preschools decreased by 20,000. Number of preschools divided by the number of children preschool age, as percentage Table Presented
6. See, for instance, Ludmilla F. Bezlepkina, ed., Gosudarstvennyi Doklad o Polozhenii Detei v Rossijskoy Federazii [State Report About the Situation of Children in the Russian Federation] (Moscow: Sinergia, 1995).
7. For an example of this methology, see Catherine K. Riessman, Divorce Talk: Women and Men Make Sense of Personal Relationships (New Brunswick, N. J.: Rutgers University Press, 1990), 17.
8. Catherine K. Riessman, Narrative Analysis (Thousand Oaks, Calif: Sage Publications, 1993), 64.
9. Anthony P. Kerby, Narrative and the Self (Bloomington: Indiana University Press, 1991), 84.
10. Kerby, Narrative and the Self, 84, 3-4; and Tim Booth, "Sounds of Still Voices: Issues in the Use of Narrative Methods with People Who Have Learning Difficulties," in Disability and Society: Emerging Issues and Insights, ed. Len Barton (New York: Longman, 1996), 253.
11. Kerby, Narrative and the Self, 84, 3-4; and Tim Booth, "Sounds of Still Voices: Issues in the Use of Narrative Methods with People Who Have Learning Difficulties," in Disability and Society: Emerging Issues and Insights, ed. Len Barton (New York: Longman, 1996), 253.
12. Emmanuel Levinas, Emmanuel Levinas: Basic Philosophical Writings, ed. Adriaan T. Peperzak, Simon Critchley, and Robert Bernasconi (Bloomington: Indiana University Press, 1996).
13. Janet Read, "There Was Never Really Any Choice: The Experience of Mothers of Disabled Children in the United Kingdom," Women's Studies International Forum 14:6 (1991): 568-69.
14. Elena Iarskaia-Smirnova, "Comparison of Russian Family Life Then and Now," Social Development Issues 18:1 (1996): 53-65.
15. See Tatiana A. Dobrovolskaja, Natalya B. Shabalina, "Sozialno-psihologitcheskie Osobennosti Vzaimootnoshenii Invalidov i Zdorovyh" ["Socio-psychological Pecularities of Relationships Between the Handicapped and the Healthy"], Sociologitcheskije Issledovanija, no. 1 (1993): 62-66; and Sergei A. Zavrazhin, "Podrostkovaja Delinkventnost: Transkulturalnaja Perspectiva" ["Adolescence Delinquency: Transcultural Perspective"], Sociologitcheskie Issledovanija, no. 2 (1995): 125-31. Dobrovolskaja and Shabalina describe a 1991 survey of 1,320 adults of different levels of handicap and socioeconomic status who lived in Moscow, Tsheljabinsk, Vologda, and Ufa, in both urban and rural areas. In addition, 120 people were interviewed who were representatives of the "intelligencia," high school graduates, orthodox charity school students ("sisters"), and professionals from the field of social protection (scientists and administrators). The distribution of the opinions about the disabled among the "healthy" people in that survey breaks down as follows: Table Presented Zavrazhin's 1994 report of 135 Russian and 98 U.S., Canadian, Austrian, and German respondents comprised of university students, teachers, and administrators about the differences in attitudes between the groups of the respondents. Attitude toward adolescent deviants and delinquents (%)
16. See Tatiana A. Dobrovolskaja, Natalya B. Shabalina, "Sozialno-psihologitcheskie Osobennosti Vzaimootnoshenii Invalidov i Zdorovyh" ["Socio-psychological Pecularities of Relationships Between the Handicapped and the Healthy"], Sociologitcheskije Issledovanija, no. 1 (1993): 62-66; and Sergei A. Zavrazhin, "Podrostkovaja Delinkventnost: Transkulturalnaja Perspectiva" ["Adolescence Delinquency: Transcultural Perspective"], Sociologitcheskie Issledovanija, no. 2 (1995): 125-31. Dobrovolskaja and Shabalina describe a 1991 survey of 1,320 adults of different levels of handicap and socioeconomic status who lived in Moscow, Tsheljabinsk, Vologda, and Ufa, in both urban and rural areas. In addition, 120 people were interviewed who were representatives of the "intelligencia," high school graduates, orthodox charity school students ("sisters"), and professionals from the field of social protection (scientists and administrators). The distribution of the opinions about the disabled among the "healthy" people in that survey breaks down as follows: Table Presented Zavrazhin's 1994 report of 135 Russian and 98 U.S., Canadian, Austrian, and German respondents comprised of university students, teachers, and administrators about the differences in attitudes between the groups of the respondents. Attitude toward adolescent deviants and delinquents (%)
17. Read, "There Was Never Really Any Choice," 563.
18. For example, the social pension for children with handicaps is as large as the minimum pension at retirement, supplemented with another two-thirds of the minimum pension and some other additional benefits. However, pensions do not offset the financial burden. Children with handicaps are allowed free public transportation, but the adults who accompany them must pay for their own tickets. Children with handicaps are provided with places n kindergarten at no charge but have to wait for years to get a place. This is partly because the general economic decline influences not only the family budget but also forces decreases in public expenditure on child care, health care, education, and the family support social network.
19. Income rates, average wages, December 1994
20. Michel Foucault, The History of Sexuality (London: Penquin Books, 1976), 84.
21. Read, "There Was Never Really Any Choice," 568-69.
22. Larissa Lissyutkina, "Soviet Women at the Crosroads of Perestoroika," in Nanette Funk and Magda Mueller, eds., Gender Politics and Post-Communism: Reflections from Eastern Europe and the Former Soviet Union (New York: Routledge, 1993), 277.
23. Jessica Benjamin, Bonds of Love: Psychoanalysis, Feminism, and the Problem of Domination (London: Virago Press, 1988), 221.
24. Lissyutkina, "Soviet Women at the Crossroads," 283-84.
25. For the theoretical background, achievements, and pecularities of these educational programs, see Andrew Sutton, "Backward Chidren in the USSR: An Unfamiliar Approach to a Familiar Problem," in Jenny Brine, Maureen Perrie, and Andrew Sutton, eds., Home, School, and Leisure in the Soviet Union (Boston: Allen and Unwin, 1980), 160-91. For background on work and everyday problems, see Stephen P. Dunn and Ethel Dunn, "Everyday Life of the Disabled in the USSR," in McCagg and Siegelbaum, The Disabled in the Soviet Union, 199-234; and Bernice W. Madison, "Programs for the Disabled in the USSR," in McCagg and Siegelbaum, The Disabled in the Soviet Union, 167-98. 24. Number of children with disabilities in Volga cities and total in Russian Federation
26. For the theoretical background, achievements, and pecularities of these educational programs, see Andrew Sutton, "Backward Chidren in the USSR: An Unfamiliar Approach to a Familiar Problem," in Jenny Brine, Maureen Perrie, and Andrew Sutton, eds., Home, School, and Leisure in the Soviet Union (Boston: Allen and Unwin, 1980), 160-91. For background on work and everyday problems, see Stephen P. Dunn and Ethel Dunn, "Everyday Life of the Disabled in the USSR," in McCagg and Siegelbaum, The Disabled in the Soviet Union, 199-234; and Bernice W. Madison, "Programs for the Disabled in the USSR," in McCagg and Siegelbaum, The Disabled in the Soviet Union, 167-98.
27. For the theoretical background, achievements, and pecularities of these educational programs, see Andrew Sutton, "Backward Chidren in the USSR: An Unfamiliar Approach to a Familiar Problem," in Jenny Brine, Maureen Perrie, and Andrew Sutton, eds., Home, School, and Leisure in the Soviet Union (Boston: Allen and Unwin, 1980), 160-91. For background on work and everyday problems, see Stephen P. Dunn and Ethel Dunn, "Everyday Life of the Disabled in the USSR," in McCagg and Siegelbaum, The Disabled in the Soviet Union, 199-234; and Bernice W. Madison, "Programs for the Disabled in the USSR," in McCagg and Siegelbaum, The Disabled in the Soviet Union, 167-98.
28. Number of children with disabilities in Volga cities and total in Russian Federation
29. Galina N. Serdjukovskaja, ed., Organizatsiia Meditsinskogo Kontrolia za Razvitiem I Zdoroviem Doshkol'ikov b Shkol'nikov na Osnove Massovyh Skriningtestove I ih Ozdorovlenie v Usloviiah Detskogo Sada, Shkoly (An Arrangement for Medical Supervision of the Development and Health of Pre-school and School Aged Children, and Their Sanitation at Kindergarten, School (Moscow: Association of Preventive Medicine and Ecology ["Promedok"], Ministry of Health Care and Medical Industry of Russian Federation, 1993).
30. For a discussion on the professionalization of social work in Russia in the 1990s, see Elena Iarskaia-Smirnova, "Social Work in Russia: Professional Identity, Culture, and the State," in International Perspectives of Social Work: Social Work and the State, ed. Bogdan Lesnik (Brighton, England: Pavilion Publishing, 1999), 331-44. See also Mary A. Burke, Child Institutionalization and Child Protection in Central and Eastern Europe, Innocenti Occasional Papers, Economic Policy Series, No.52 (Florence, Italy: UNICEF International Child Development Centre, 1993).
31. For a discussion on the professionalization of social work in Russia in the 1990s, see Elena Iarskaia-Smirnova, "Social Work in Russia: Professional Identity, Culture, and the State," in International Perspectives of Social Work: Social Work and the State, ed. Bogdan Lesnik (Brighton, England: Pavilion Publishing, 1999), 331-44. See also Mary A. Burke, Child Institutionalization and Child Protection in Central and Eastern Europe, Innocenti Occasional Papers, Economic Policy Series, No.52 (Florence, Italy: UNICEF International Child Development Centre, 1993).
32. Emmanuel Levinas, "Philosophy and the Idea of Infinite," in Adriaan Peperzak, To the Other: An Introduction to the Philosophy of Emmanuel Levinas (West Lafayette, Indiana.: Purdue University Press, 1993), 39-72.
33. Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (New York: Touchstone, 1986), 4.
34. R. J. Estes, "Education for Social Development: Curricular Issues and Models," Social Development Issues 16:3 (1994): 68-90.
35. Human Rights Watch, "Summary and Recommendations," 7-8.
36. For instance, social work education in Saratov has existed since 1991 at the Department of Social Work at Saratov State Technic University (SSTU). The following programs are offered in the department: Bachelors of Social Work, Masters of Social Work, Graduate Diploma in Social Work (a five-year program), Candidate of Sociology, Doctor of Sociology, and Graduate Diploma in Social Anthropology (a five-year program). The research interests of the faculty are focused on social inequality and social policy, in particular on gender and disability issues. The Department of Social Work collaborates with Saratov social services, rehabilitation centers for children with disabilities, and NGOs, including women's organizations and associations of people with disabilities.