Parenting Children with Disabilities in Russia: Institutions, Discourses and Identities

Abstract

This essay aims to understand how the complex configurations of welfare shape and change the identity of carers, and the conditions and relations in the policy and practice of social care. It is based on the analysis of interviews with mothers of children with disabilities, collected in 2006 and 2008 in Russia, as well as analysis of more recent material in the public sphere (blogs and electronic mass media). In the interviews and blogs, women tell their stories about their experience of social exclusion and choice. The analysis shows how welfare institutions and discourses work to secure the well-being of citizens, to construct social inequality, to define the ways people think about normality and shape their identities and lives.

Notes

¹ For this essay, the database of two previous projects was re-analysed: qualitative interviews with mothers of children with disabilities (n=30) conducted in Saratov in 2006–2007 within a UNDP-financed project of the Institute of Social and Gender Politics ‘Monitoring Women’s Rights in Russian Federation: Thousands of Women’s Stories’, and focus groups with parents of children with disabilities (46 participants in four focus groups) in Kostroma, the Moscow regional town Egorievsk, Saratov and St Petersburg in 2008 within an EU-financed project ‘Rehabilitation System: Services for the Disabled, Russian Federation’. In addition, semi-structured interviews with service providers from the 2008 project have been included in the analysis (n=11). All interviewees were informed about the purposes of the study, and their anonymity, privacy and confidentiality have been ensured at all stages in all cases except those who wanted to appear in the publications with their full names. In addition to the interviews and focus groups, commentaries in internet-forums of service users were included. For the contextualisation of findings, various sources of information have been used, including official statistics, surveys and the mass media.

² ‘O sotsial’noi zashchite invalidov v Rossiiskoi Federatsii’, Federal’nyi zakon ot 24 noyabrya 1995 N 181-FZ, available at: http://www.consultant.ru/document/cons_doc_LAW_8559/, accessed 7 September 2015.

³ Konstitutsiya Rossiiskoi Federatsii, prinyata vsenarodnym golosovaniem 12 dekabrya 1993, available at: https://www.consultant.ru/popular/cons/, accessed 7 September 2015.

⁴ ‘Moskovskii gosudarstvennyi gumanitarno-ekonomicheskii institut’, available at: http://www.mgsgi.ru/index.php?dn=info&pa=about, accessed 1 September 2015.

⁵ Survey on disability and disabled people in four pilot regions. Report on Findings, prepared by the Center for Social Policy and Gender Studies, Saratov for the project ‘Rehabilitation System: Services for the Disabled, Russian Federation’, EU–Russia Cooperation Programme. Research director Pavel Romanov, 2008, unpublished manuscript.

⁶ Calculated by the authors using data from: Sotsial’naya zashchita detei-invalidov v Rossiiskoi Federatsii, available at: http://doorinworld.ru/stati/114-soczialnaya-zashhita-detej-invalidov-v-rossijskoj-federaczii, accessed 20 April 2012; and UNICEF NISP (2011).

⁷ ‘Deti v trudnoi zhiznennoi situatsii: profilaktika neblagopoluchiya’, Fond podderzhki detei nakhodyashchikhsya v trudnoi zhiznennoi situatsii, Moscow, 2013, p. 38, available at: http://www.fond-detyam.ru/, accessed 23 March 2014.

⁸ ‘Deti v trudnoi zhiznennoi situatsii: profilaktika neblagopoluchiya’, Fond podderzhki detei nakhodyashchikhsya v trudnoi zhiznennoi situatsii, Moscow, 2013, p. 49, available at: http://www.fond-detyam.ru/, accessed 23 March 2014.

⁹ Osoboe detstvo, 2004, available at: http://www.osoboedetstvo.ru/rights/ibase/files/aro_04_1.doc, accessed 23 October 2011.

¹⁰ ‘O sotsial’noi zashchite invalidov v Rossiiskoi Federatsii’, Federal’nyi zakon ot 24 noyabrya 1995 N 181-FZ, available at: http://www.consultant.ru/document/cons_doc_LAW_8559/, accessed 7 September 2015; Semeinyi Kodeks Rossiiskoi Federatsii ot 29 dekabrya 1995 N 223-FZ, available at: http://www.consultant.ru/popular/family/, accessed 7 September 2015; ‘Ob obrazovanii v Rossiiskoi Federatsii’, 24 July 2015, available at: http://docs.cntd.ru/document/902389617, accessed 21 September 2015.

¹¹ Svetlana, in a focus group with parents, Kostroma, December 2008.

¹² Svetlana, in a focus group with parents, Kostroma, December 2008.

¹³ Interview with Tatyana, social worker, St Petersburg, November 2008.

¹⁴ Osoboe detstvo, 2004, available at: http://www.osoboedetstvo.ru/rights/ibase/files/aro_04_1.doc, accessed 23 October 2011.

¹⁵ Ministerstvo Zdravookhraneniya i Sotsial’nogo Razvitiya, Prikaz ot 04.08.2008 №379n, available at: http://base.garant.ru/12162205/, accessed 23 October 2011.

¹⁶ Informatsiya o merakh sotsialnoi podderzhki invalidov v Sankt-Peterburge, 2010, available at: http://www.socpolit.ru/pages_77/index.html, accessed 1 September 2015.

¹⁷ Osoboe detstvo, 2004, available at: http://www.osoboedetstvo.ru/rights/ibase/files/aro_04_1.doc, accessed 23 October 2011.

¹⁸ Interview with Lyudmila, Saratov, May 2006.

¹⁹ Interview with Nataliya, St Petersburg, November 2008.

²⁰ Interview with Marina, social worker, Saratov, November 2008.

²¹ Interview with Lyudmila, social worker, St Petersburg, November 2008.

²² Interview with Marina, social worker, Saratov, November 2008.

²³ Interview with Nina, social worker, St Petersburg, November 2008.

²⁴ Margarita, in a focus group with parents, Saratov, December 2008.

²⁵ Evgeniya, in a focus group with parents, Saratov, December 2008.

²⁶ Interview with Lyudmila, Saratov, May 2006.

²⁷ Interview with Lidiya, Saratov, May 2006.

²⁸ Olga, in a focus group with parents, Kostroma, December 2008.

²⁹ Interview with Lyudmila, social worker, Saratov, November 2008.

³⁰ Interview with Ekaterina, social worker, Saratov, November 2008.

³¹ Margarita, in a focus group with parents, Saratov, December 2008.

³² Tatyana, in a focus group with parents, Moscow region, December 2008.

³³ See also, ‘Fedorov: Vsego 4% rossiyan dovol’ny kachestvom medobsluzhivaniya’, VTsIOM, 5 October 2010, available at: http://wciom.ru/index.php?id=238&uid=13868, accessed 23 March 2014.

³⁴ Lyudmila, in a focus group with parents, Moscow region, December 2008.

³⁵ Nataliya, in a focus group with parents, Saratov, December 2008.

³⁶ Interview with Yuliya, Saratov, May 2006.

³⁷ Interview with Lyudmila, Saratov, May 2006.

³⁸ Interview with Nataliya, Saratov, May 2006.

³⁹ Interview with Irina, Saratov, May 2006.

⁴⁰ Osoboe detstvo, 2004, available at: http://www.osoboedetstvo.ru/rights/ibase/files/aro_04_1.doc, accessed 23 October 2011.

⁴¹ Osoboe detstvo, 2003, available at: http://www.osoboedetstvo.ru/ib/doc/ziar/Otkazy.doc, accessed 23 October 2011.

⁴² Interview with Lidiya, Saratov, May 2006.

⁴³ Interview with Galina, Saratov, May 2006.

⁴⁴ Interview with Rosa, Saratov, May 2006.

⁴⁵ ‘Kontseptsiya gosudarstvennoi politiki v otnoshenii molodoi sem’’’, Ministerstvo Obrazovaniya i Nauki Rossiiskoi Federatsii, No. AF-163/06, 2007, available at: http://old.mon.gov.ru/work/vosp/dok/3697,print/, accessed 23 March 2014.

⁴⁶ ‘Kontseptsiya gosudarstvennoi politiki v otnoshenii molodoi sem’’’, Ministerstvo Obrazovaniya i Nauki Rossiiskoi Federatsii, No. AF-163/06, 2007, p. 15, available at: http://old.mon.gov.ru/work/vosp/dok/3697,print/, accessed 23 March 2014.

⁴⁷ ‘Kontseptsiya gosudarstvennoi politiki v otnoshenii molodoi sem’’’, Ministerstvo Obrazovaniya i Nauki Rossiiskoi Federatsii, No. AF-163/06, 2007, p. 16, available at: http://old.mon.gov.ru/work/vosp/dok/3697,print/, accessed 23 March 2014.

⁴⁸ Olga, in a focus group with parents, Kostroma, December 2008.

⁴⁹ Interview with Tatyana, Saratov, May 2006.

⁵⁰ Interview with Galina, Saratov, May 2006.

⁵¹ Interview with Nataliya, Saratov, May 2006.

⁵² In the Russian welfare system there is a problem of long queues, in particular, in health-care centres. Due to the lack of doctors people wait in corridors for hours. Some categories of service users have the right to avoid queueing, for instance, pregnant women, social workers, employees of organisations who need to undergo regular health checks. In fact, there are sometimes queues of those who are exempted from queueing.

⁵³ Interview with Yuliya, Saratov, May 2006.

⁵⁴ ‘Otkrytoe pis’mo roditelei detei-invalidov protiv vyskazyvanii detskogo ombudsmena Pavla Astakhova v programme “Poedinok”, Rossiya-1, 24.01.2013’, Ekho Moskvy, 28 January 2013, available at: http://www.echomsk.spb.ru/blogs/EchoSPB/11445.php, accessed 23 March 2014.

⁵⁵ Interview with Yuliya, Saratov, May 2006.

⁵⁶ ‘Organizatsiya, sozdannaya v gorode na Neve, namerena otstaivat’ prava roditelei’, ntv.ru, 11 August 2011, available at: http://www.ntv.ru/novosti/235961/, accessed 23 October 2011.

⁵⁷ For example, the clip ‘Mother’ (‘Mat’), available at: http://www.pravoslavie.ru/jurnal/29500.htm, accessed 21 September 2015.

⁵⁸ Materinstvo, 13 March 2009, available at: http://forum.materinstvo.ru/lofiversion/index.php/t241210.html, accessed 30 April 2013.

⁵⁹ ‘Massovoi golodovkoi materei v Volgograde ozabotilis’ v Moskve’, news.ru, 26 September 2013, available at: http://newsru.com/russia/26sep2013/volgogolod.html, accessed 21 September 2015.

⁶⁰ ‘Obraz cheloveka-invalida v sovremennykh SMI: pol’za ili vred’, Dislife, 23 October 2009, available at: http://dislife.ru/articles/view/5194, accessed 23 March 2014.

⁶¹ ‘Osobennye deti znamenitykh roditelei’, Dislife, 26 April 2010, available at: http://dislife.ru/articles/view/7962, accessed 23 March 2014.