To Leave a Ghetto: Overcoming the Stigma of Disability

DOI: 10.33876/2311-0546/2021-53-1/36-49

Abstract

There are scholarly discussions about the so-called disability culture / subcultures. However, nobody doubts that there are specific lifestyles of disabled persons determined not only by their illness, dysfunction or disability, but also by the perception of disability as a social and cultural phenomenon in various societies in particular historical and cultural contexts. These lifestyles are also much impacted by the stigmatization of disability which exists in many societies. The author examines problems of the so-called sociocultural “ghetto” for disabled people in Russia. Drawing on her field materials – texts of in-depth interviews and analysis of autobiographies, she demonstrates the process of construction of this subculture in which disabled people often live. This lifestyle is mostly typical for persons with innate disability. The author also investigates life experience of people with acquired disability who try to escape life in the “ghetto” and who experience other problems. E. Nosenko-Stein sees the cause of this “ghetto” construction in the stigmatization of disability, which is profoundly rooted in Russian society and culture.

For Citation: Nosenko-Stein, E. 2021. To Leave a Ghetto: Overcoming the Stigma of Disability. Herald of Anthropology (Vestnik Antropologii) 1 (53): 33–35.

References

• Allport, G.W. 1954. The Nature of Prejudice. London: Addison-Wesley.
• Benedict, R. 1989. The chrysanthemum and the sword: patterns of Japanese culture. New York: Houghton Mifflin.
• Bolt, David. 2014. The Metanarrative of Blindness: A Re-reading of Twentieth-Century Anglophone Writing. Ann Arbor: University of Michigan Press.
• Dobrovolskaya, V Ye. 2018. ‘Mnimaya i realnaya invalidnost’ v russoiy volshebnoy skazke v konterste folklornoy traditsii [Imagined and real disability in Russian fairy tales in folklore tradition context]. Etnograficheskoye ovozrenie 1: 12–28.
• Fieseler, B. 2014. “Soviet-style welfare: the disabled soldiers of the ‘Great Patriotic War’.” In: Rasell, Michal and Elena Iarskaia-Smirnova (Eds.). Disability in Eastern Europe and the Former Soviet Union: History, policy and everyday life. Oxford; New York: Routledge.
• Frolova, A.V. 2018. Antropologia invalidnosti v culture materinstva I detstva (po materialam Arkhangelskogo Severa) [Anthropology of disability in the culture of motherhood and childhood: data of the Arkhangelsk region North of Russia]. Etnograficheskoye obozrenie 1: 28–35.
• Frolova, A.V. 2019. Otnoshenie k rozhdeniyu rebenka-invalida v krestianskoy srede (po materialam Russkogo Severa) [Percepting a Birth of a Disabled Child in the Peasant Surroundings (field Materials of the Russian North)]. Prepodavaniye istorii v shkole, 2: 5–9.
• Garland-Thomson, R. 1997. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press.
• Goffman, E. 1963. “Stigma and Social Identity.” In: Stigma: Notes on the Management of Spoiled Identity, 1–11. Prentice-Hall.
• Iarskaia-Smirnova E. 2001. “Social change and self-empowerment: stories of disabled people in Russia.” In: Pristley M. (Ed.) Disability and the Life Course: Global Perspectives, 101–112. Cambridge: Cambridge University Press.
• Klepikova, A. 2018. Navernoye ye, ia durak.’ Antropologichesky roman [“Perhaps I am foolish: Anthropological novel]. Sankt-Petersburg: European University in Sankt-Petersburg Publishers.
• Lazoukova, Ye.А. and G. Seletkova. 2018. “Zanyatost’ I obrazovanie rossiyskikh invalidov [Employment and education among Russian disabled persons.” In: Invalidy, invalidnost’, invalidizatsiya [Disabled persons, disability, and disabilization], 744–748. Nizhny Novgorod: Nizhegorodsky feleralny universiter. 
• Makarov, V. 2018. “Napravleniya deyatelnosti po trudoustroystvu invalidov kak vazhnogo faktora povyshniya kachestva ikh zhizni” [Some directions in employment of disabled persons as important factor of improvement of their quality of life Pp. 753-757.]. In: Invalidy, invalidnost, inalidizatsia [Disabled persons, disabilities, disabilisation] (Material of conference, September 27-28, 2018). Nizhny Novgorod: NISOTS Publishers.
• Murphy R. F. et al. 1988. Physical disability and social liminality: A study in the rituals of adversity. Social Science & Medicine 26 (2): 235–242.
• Nikonova, A. 2018. “Obschestvennye organizatsii I trudoustroystvo loudiy s invalidonstyu” [Public organizations and problems of employment of people with impairments], 761–764. In: Invalidy, invalidnost, inalidizatsia [Disabled persons, disabilities, disabilisation] (Material of conference, September 27-28, 2018). Nizhny Novgorod: NISOTS Publishers.
• Nosenko-Stein, E. 2017. “They fear us because we are Other”: Attitudes Towards Disabled People in Today’s Russia [“Nos temen porque somos Otro”: actitudes hacia las personas con discapacidad en la Rusia moderna]” Salud Coddtcteva 13 (2): 158–170.
• Nosenko-Stein, E. 2018a. Antropologia invalidnosti: problymy i zadachi [Anthropology of Disability: Problemsand Perspectives]. Etnograficheskoye obozrenie 1: 5–11.
• Nosenko-Stein, E. 2018b. ’Invalidy – a tuda zhe – rabotat’ Nekotorye problem troudoustroistva liudey s ogranichennami vozmozhnostiami zdorovia v Rossii (na primere nizriachikh)” [They are disabled but want to work: Some problems of employment of disabled people in Russia (blind and low vision persons)].” In: Invalidy, invalidnost, invalidizatsia (Proceedings of International conference, September 27-28, 2018), 682–690. Nizhny Novgorod: NISOTS Publishers.
• Nosenko-Stein, E. 2020. “Rokovoy diagnosis kak nachalo obryada perekhoda: stateus invalida i otnoshenie k nemu v sovremennoy Rossii [Fatal diagnosis as a Beginning of Rite of Passage: Disability Status and Its Perception in Contemporary Russia]. Etnograficheskoye obozrenie 5: 149–161.
• Phillips, S.D. 2018. “Parallelny mir [Parallel world]. In: Obratnaia storona Luny, ili chto my ne znaem ob invalidnosti (teoria, reprezentatsia, praktiki) [Back Side of the Moon, or What We do not Know about Disability (Theory, Representation, Practices)], edited by A.S. Kurlenkova and E.E. Nosenko-Stein, 223-274. Moscow: MBA.
• Romanov, P. and E. Iarskaia-Smirnova. 2006. Politika invalidnosti: sotsialnoye grazhdanstvo invalidov v sovremennoy Rossii [Policy dealing with disability: social citizenship of disabled people in contemporary Russia]. Saratov: Nauchnaya kniga.
• Shlyakhtina, N. 2019. Zabota o sirotakh I ubogikh v traditsionnoy russkoy derevne [Care After Orphans and Miserables in a Traditional Russian Village]. Prepodavaniye istorii v shkole 2: 10–14.
• Turner, V. 1983. Simvol i ritual [Symbol and ritual]. Moscow: Vostochnaya literature.
• Voronin l 2018. Dinamika invalidizatsii naselenia postsovetskoy Rossii: po dannym 2003–2016 [Dynamics of disabilization or population in post-Soviet Russia: according to 2003–2016]. In: Invalidy, invalidnost, inalidizatsia [Disabled persons, disabilities, disabilisation] (Material of conference, September 27-28, 2018), 92–97. Nizhny Novgorod: NISOTS Publishers.