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Dossier thématique

“I have always been a white raven and a black sheep”

Autobiographies and life experiences of people with disabilities in contemporary Russia
“J’ai toujours été un merle blanc et un mouton noir”: Autobiographies et expériences de vie des personnes handicapées dans la Russie contemporaine
Elena Nosenko-Stein
p. 77-91


Dans la Russie post-soviétique, on dénombre environ 12 millions de personnes qui vivent en situation de handicap. Cependant, les recherches scientifiques consacrées à ce large segment de la société russe, principalement à propos de la stigmatisation et de l’auto-stigmatisation, sont rares. Les textes autobiographiques écrits par des personnes qui présentent un handicap, entre 1990 et 2010, permettent de mieux comprendre les expériences de ces personnes dans la Russie post-soviétique. Ces textes témoignent notamment des principales stratégies que les personnes qui présentent des incapacités motrices congénitales ou acquises ont adopté afin de s’adapter aux défis de la vie quotidienne. Le diagnostic médical a profondément transformé le statut social et le mode de vie de ces personnes. Cet article examine le diagnostic selon la perspective des théories du “rite de passage” vers un autre monde, le monde des personnes handicapées, leur “bas-monde.” En s’appuyant sur les autobiographies de personnes handicapées, cet article révèle comment les étiquettes et les notions appliquées à l’infirmité au sein de la société russe contemporaine sont enracinées dans la culture russe dans son ensemble et dans les attitudes soviétiques envers le handicap et les personnes handicapées.

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Notes de l’auteur

The research has been done with the support of the Russian Foundation for the Fundamental Research. Grant 20-09-00063 A.

Texte intégral


1Various notions, stereotypes and even fears regarding impairments, physical conditions, and mental disorders, such as blindness, deafness, mental illness, exist in different cultures and are not unique to Russia.

2These impairments have often been perceived as socially undesirable, as manifestations of divine punishment for past sins or even as dangerous (Bolt, 2014; Lūse & Kamerāde, 2014; Dobrovolskaya, 2018; Frolova, 2018; Shlaykhtina, 2019). Such attitudes also reflect the perception of “extraordinary bodies” (Garland-Thompson, 1997: 8). It is necessary to remember that “extraordinary body” and “disability” are not the same; many diseases or disfunctions are not “visible.” At the same time, some features or even ugly peculiarities (which were differently perceived in various cultures and epochs) do not lead to disabilities (see, Mauss, 1932; Eco, 2007). However, in some cases both notions coincided (at least, in mass consciousness), and persons with “visual” disabilities have been perceived as most extraordinary. Over the past 50 years, societal perception of disabilities and notions of disabled persons in different cultures and epochs have been extensively studied by Linton (1998), Gerber (2000), Corker & Shakespeare (2002), Johnstone (2005), Siebers (2008), Bolt (2014), and many others.

3In the Soviet Union, studies of disability were framed by the medical model of disability (Rasell & Iarskaia-Smirnova, 2014). The school of studies, especially in the field of teaching disabled children, which was developed within this model, was called defectology. In post-Soviet Russia, disability studies are still an emergent field of academic enquiry although some interesting works employing the social model of disability have been published. For example, two works by Romanov & Iarskaia-Smirnova (2006) and Naberushkina (2012), and others deal with the social policy, social citizenship and gender aspects of disability.

4At the same time, some notions and stereotypes concerning people with different impairments which are widespread in contemporary Russia are rarely considered by scholars. Thus, in Russia, disabled people are often referred to as “useless persons,” “defective persons,” “a burden on society/family,” etc. Some of these notions stem from traditional Russian culture – as guilt culture (see Benedict, 1989, on guilt cultures and shame cultures). For example, the notion of the mother’s “fault” or responsibility for her child’s impairment or of divine punishment for her past sins (Frolova, 2018; Dobvrovolskaya, 2018).

5Many of these labels emerged in the Soviet era with its cult of physical health, able-bodiedness and strength.

6In the Soviet period a labor was considered as an obligatory duty for everyone; in this perspective disabled persons who could not work were perceived as “useless,” “burden on the society.” Such labels have been recently examined by Fieseler (2014) and Bernstein (2014). These perceptions of disability influence the self-identification of people with disabilities in post-Soviet Russia and are reflected in their oral narratives and autobiographies investigated by Nosenko-Stein (2017) and Stroganov (2018). As many people in post-Soviet Russia share negative stereotypes of disability, they often try to distance themselves from people with impairments as guilty people. In the Former Soviet Union (FSU) countries, there has been little research focusing on stereotypes and labels exhibited by people with disabilities in their autobiographies and oral narratives. In this paper, I examine self-representations written by people with different congenital and sudden disabilities in Russia. Some of them experienced life with disability in the USSR; others became disabled in post-Soviet Russia. Their first-hand accounts provide for a more comprehensive understanding of various notions, constructs and attitudes towards disability in contemporary Russian society.

Sources and method

7Autobiographical writing has been widely and successfully applied in social and cultural anthropology and sociology, especially in studying identities, life styles and behavioral problems, including those of disabled people (e.g., Jolly, 2001; Chamberlayne, Bornat & Wengraf, 2000; Goodson, 2001). In contrast, in Russia this method has been rarely applied in disability studies and contemporary ethnographic research. Autobiographical texts are written without researcher involvement, i.e. without a mediator, by disabled people themselves (as in the oral history and life history methods) and provide unique accounts of personal experience, self-representation, and self-identification, unlike biographies of famous disabled persons – Beethoven, Toulouse-Lautrec, Kepler and others – written by “normal” people and representing a detached point of view.

8I analyzed several selected autobiographies written by people with congenital and acquired disabilities.

9“Notes of a blind person” was written by Anatoly Grafov born in Siberia in 1938. A person with good eyesight, he gradually lost his eyesight as a result of a medical condition when studying at university. This forced him to abandon his studies and sports (weightlifting). For several years after losing his eyesight Grafov was not able to find a job. He occasionally helped his relatives with farm work. After joining the Soviet Association of the Blind (a state-run organization for blind people), he was able to graduate from a correspondence law school and started working at a special enterprise for the blind in the city of Novosibirsk in Siberia. Most of such state-run small enterprises were established in the 1960s-1970s and provided manual work opportunities for blind individuals. They were well funded, exempt from taxes and provided subsidized or free social services to their workers. During his time at the enterprise, Grafov recorded life experiences of many people with visual impairments and presented them in his book (Grafov, 2009).

10Another autobiographical text, Hello, good people!, was written by Tamara Cheremnova, born in the city of Novokuznetsk, Siberia, in 1953. Tamara was born with cerebral paralysis (infantilis cerebralis is a neurological disease which results in musculo-skeletal and sometimes mental impairments). When she was six, her parents sent her to a home for children with disabilities where Tamara was diagnosed with “oligophrenia at the stage of debility,” indicating advanced mental disability, the diagnosis Tamara later called “shameful.” Due to muscle spasms Tamara’s legs and arms twitched and her speech was blurred. The institution officials and doctors concluded that she was unable to study at school. Despite her diagnosis, Tamara learned to read and write and eventually completed the secondary school program on her own. She also became an accomplished author of fairy tales and children’s stories. Her books have been translated into many languages. Currently she lives in a special institution for disabled people in the city of Novokuznetsk. Her diagnosis was withdrawn.

11Ruben Galiego’s “The white on black” (Galiego, 2004) is a series of essays that give a vivid account of everyday life in special homes for children with cerebral palsy and other impairments in the Soviet Union. Ruben David Gonzales Galiego was born in 1968 in Moscow. He was the grandson of an exiled general secretary of the spanish communist party. Because of his condition, Ruben could not move his arms or legs. Neither his parents nor his grandfather wanted to take care of the boy and Ruben was put in a home.

12When he was 15 years old, he was transferred to a similar institution for adult people with disabilities. Galiego writes that many children in such homes, in addition to physical disabilities, were diagnosed with mental disabilities and therefore transferred to special institutions for mentally disabled people. Ruben was exceptionally intelligent, was able to complete school and eventually became a journalist. He now lives in Spain.

13The autobiographical book by Alexander Suvorov, “Deaf-blind in a sighted, hearing world” (Suvorov, 1996), presents the life trajectory, experience, and reflections of a person with deep sensory impairments.

14Suvorov was born in the city of Frunze (now Bishkek), Kyrgyz Soviet Socialist Republic, now Kyrgyzstan, in 1953. When he was four years old, he lost most of his eyesight, and when he was ten he began losing his hearing. His parents put him in a special institution for deaf-blind children in the town of Zagorsk (now Sergiev Posad, Moscow Region). After finishing school Suvorov studied psychology at the prestigious Moscow State University. Suvorov, along with three other deaf-blind students, members of an experimental group, did a postgraduate course under the well-known Soviet psychologist Prof. Mescheryakov. He eventually did a PhD and lectured at a special institution for deaf-blind people. Suvorov also writes poetry and philosophical works.

15Irina Yassina, the author of the acclaimed book “Case history” (Yassina, 2011), was born in 1964. She is the daughter of Russia’s ex-minister for the economy, Yevgeny Yassin, and herself a well-known economist and journalist. At the age of 35, she was diagnosed with multiple sclerosis, an auto-immune disease which results in gradually increasing immobility and other impairments. Despite support from many well-connected and wealthy people (including the then oil oligarch Mikhail Khodorkovsky), her health gradually deteriorated. But Irina continued working. Her book for teenagers “A human with human abilities” is about the trauma and challenges of a sudden disability that no one is immune to (Yassina, 2012).

16Natalia Barkhatova wrote “My dream shows me the way” (Barkhatova, 2007) when she was 28. She was raised by her mother in the city of Yekaterinburg; in the Urals region of Russia, in the 2000s. Natalia suffered from Meniere’s syndrome (a neurological disease that affects the musculo-skeletal system). She refused to be officially registered as a disabled person because she did not want the disability label on her. She is now a well-known rap music composer (under the nickname of Djimbo Di), and has been collaborating with different musical groups and DJs.

17All of these texts were written by people of different ages, life trajectories and social backgrounds. Although they have different impairments (including congenital and acquired disabilities), their accounts are united by the central role that disability has played in shaping their lives.

Home numbers

18Disability and various impairments are defined according to the historical and cultural context of a specific society. In today’s Russia, disability is often thought of as an inability to work, a view that has survived from the soviet era. The number of disabled people in Russia ranges from 11 to 13 million people depending on the criteria used by government agencies. The problem of insufficient statistics, has been a focus of investigation conducted by Russian scholars (see: Ananyin, 2018; Voronin, 2018). According to the Russia state committee for statistics, by 2020, there were about 11,87 million people with various impairments in Russia. These are people who are officially registered as disabled by the bureau of medical and social expertise, a governmental organization which registers people with various impairments. Every year the official number of disabled people decreases by 150 – 300 thousand as a result of disability criteria becoming more stringent. Besides, people who do not get officially registered as disabled, to avoid discrimination in education or job market opportunities, are not included in statistical data.

Loneliness in early life

Lonely and isolated

19People with congenital impairments or impairments acquired early in their lives had markedly different childhoods from those who became disabled later in their lives. One of the most difficult problems disabled children face is a paradoxical combination of overprotective care shown by their relatives and the feeling of intense loneliness. Even those disabled individuals who were raised in families often recollect their childhoods as being intensely lonely and isolated:

20Natalia (Djimbo Di) wrote:

When I was a child, I constantly fought against my family’s overprotectiveness […] When I was 11, my grandmother, who ran our house, died. My mother wanted to forget her sorrows, so she worked very hard, and often went on long business trips. I stayed at home withmy 87-year-old great-grandmother, who was hard of hearing but full of energy, sometimes for 2 or 3 weeks on end and felt very lonely. (Barkhatova, 2007)

21Children who were raised in special institutions for children with disabilities or in orphanages, especially those with mental problems, often recollect the feelings of loneliness, anxiety and uselessness. These feelings are noted by Anna Klepikova in her book documenting her experience of working as a volunteer in such special institutions (Klepikova, 2018). Ruben Galiego writes that they had to constantly struggle with daily difficulties and for human dignity. Ruben Galiego likened these Soviet institutions to Nazi concentration camps: “Life there cripples the bodies and the souls of children who stay there.” He recollects a school reunion: “We are drinking vodka and talking, and I ask one of the former pupils what is probably the most important question: ‘Sasha, are you happy to have had the special home experience in your life?’ ‘No, I became a different person after it, I wish I hadn’t had such experience’.” (Galiego, 2004).

22One of the chapters in Galiego’s book is entitled “I am a hero.” He says that when in the institution he tried his best not to rely on anybody’s help. As he did not have control of his arms and legs, what he did was pull the blanket with his teeth and drop it from his bed onto the floor to crawl all the way to the bathroom. He knew he was alone in his struggle for life. “When I was eight I understood, that I was alone and nobody needed me.” (Galiego, 2004).

Unfairness everywhere

23Tamara Cheremnova described an episode when a doctor in the home she had been put into had proclaimed the “shameful” diagnosis of “oligophrenia at the stage of debility.” She remembers being overwhelmed with the feeling of injustice, loneliness and even self-hatred: “At first I didn’t want to talk to anyone. At night I bit the pillow, I hated myself and my cerebral paralysis, which, in addition to immobilizing my arms and legs, cursed me with this unfair and offensive diagnosis and labeled me mentally defective.” (Cheremnova, 2006).

24These accounts demonstrate that disabled people themselves also stigmatize their own impairments and disability in general. This self-stigmatization emerges in their childhood as a result of prevailing social attitudes and ableism in many spheres. Mentally disabled people are persistently stigmatized in Russia; Tamara especially suffered from the “unfair” diagnosis of “mental retardation.” Galiego compares himself to Quasimodo stressing that his own situation was much worse: “I envied Quasimodo: people looked at him with pity and disgust as they looked at me, but he had arms and legs. He had the whole Notre Dame.” (Galiego, 2004).

25Accounts of school experiences are mostly brief. Most of these people were good students, like Suvorov, Cheremnova and Galiego. This is probably the result of physical and psychological hyper-compensation evident in the case of Tamara Cheremnova who completed the school curriculum on her own. Disabled children raised in families, in addition to feelings of loneliness, experience alienation from other children. Natalia Barkhatova (Djimbo Di) wrote that she felt intense isolation and otherness:

I always understood that at school I was a “white raven” and a “black sheep.” In my childhood, at school, I never spoke to anyone without a serious reason. I relied only on my own strength and didn’t know how to be “like anybody else.” Schoolteachers wanted me out, not for homeschooling, just out. They decided that I was not worth their time and good for nothing anyway. (Barkhatova, 2007)

26Those who were raised in special homes for disabled children often recollect humiliating attitudes exhibited by the staff. Cheremnova and Galiego wrote that such attitudes made their loneliness and feeling of otherness more acute. Their books (especially Galiego’s) triggered a public discussion in the early 2000s regarding special institutions for disabled people in Russia. Encouragingly, attitudes towards people with various impairments (especially mental) have been changing since the Soviet times, as witnessed by Anna Klepikova who worked as a volunteer in such institutions several years ago (Klepikova, 2018).

27As reported in his book by Alexander Suvorov who studied in a special school for deaf-blind children since he was nine years old, one of his teachers was very skeptical about the experiment of helping deaf-blind students to study at Moscow State University:

The Russian state spends a lot of money on those children. But what is the result? […] The state provides them with education and housing. They [disabled individuals] cannot give anything back [to society]. […] Just look at them, how much money was spent on four of those children. And what can they do in order to repay this money? […] How can they live without support? This experiment is false, how can they be scholars, how can they carry out research? (Suvorov, 1996)

28The notions and perceptions of disabled persons as weak, helpless and useless often lead to separation of disabled children from mainstream education and exacerbate their feelings of isolation, inferiority and otherness (Antipyev, 2018; Furlong & Cartmel, 2007; Hodkinson, Hodkinson & Sparkes, 2013; Yarskaya-Smirnova, 2018).

Roots of stigmatization

29These notions are typical of the Russian society and culture (“culture of guilt”) where stigmatization of disabilities is magnified by various wide-spread stereotypes that go back to attitudes formed in the Soviet period. In the USSR, every person was obliged to work; work was considered every citizen’s duty. People who were unable to work (or needed special working conditions) were registered as disabled and considered as “burden on the society” in the guilt culture context. This situation has not changed in post-Soviet Russia, so stereotypes of disabled people as “useless” and “burden on society” are still widespread in mass consciousness.

30To conclude, the accounts found in the autobiographies of disabled people as well as related research call for profound reforms of special education and institutions for disabled children in contemporary Russia. The backward and cruel system which has been persistently violating disabled children’s human rights must give way to alternative forms of providing education and care to disabled children, e.g., various configurations of family-type foster homes and foster families as was described by Klepikova (2018) and Lubiankina (2018) (they consider similar cases but on different materials).

Rite of passage

Entering netherworld

31Those individuals who became disabled as adults had quite a different life experience. Prior to becoming disabled, many got a good education and/or a job, got married, enjoyed hobbies and often attained a desirable social status. For example, A. Grafov was an undergraduate student, a keen traveler and did weightlifting as a sport. I. Yassina was a prominent economist, married with a daughter, and travelled internationally. After becoming disabled, their horizon of opportunities, their habits and status changed dramatically. Such individuals usually divided their lives into two periods – before and after. Grafov described the latter as life beyond the watershed, meaning the irrevocable change that disability brought about (Grafov, 2009).

32The diagnosis of disability often demarcates the life before and after. It often means that the underlying condition cannot be improved by medical treatment, perhaps that study or work will have to be abandoned and that the sufferer will have to get officially registered as a disabled person. Not only does the medical diagnosis name the disease, defect or disfunction, it spells a new economic and social status, possibly, the threat of divorce, thus profoundly changing the quality of life and lifestyle of such individuals.

33Grafov describes his feelings after his diagnosis in the chapter entitled “Beyond the Watershed”:

Acceptance was very difficult. I felt the unbearable weight of the knowledge that I was blind. Acute mental pain and despair filled me and weighed heavy on my heart. The doctor’s words echoed in my ears. [He] said: “I will not lie to you. Be brave. We cannot improve your eyesight. Maybe, sometime in the future, your disease will be possible to cure. In the meantime, I suggest you temporarily quit university, and go through a medical examination to get registered as a disabled person, and join the Soviet Association of the Blind.” (Grafov, 2009)

34Such recommendations by doctors to newly diagnosed disabled patients were common in the soviet era. The Soviet Association of the Blind provided blind and partially sighted people with a vocational education and a job. Although the work was mostly manual, such small enterprises had strong state administrative and financial support; besides, they provided the workers with subsidized or even free social services. Several years later, after getting a correspondence law degree, Grafov followed his doctor’s advice and worked at one of such enterprises. He also left a very informative account of his experience in the institution.

35After the watershed diagnosis people with a sudden disability or disability resulting from a progressing disease, wrong medical treatment or other reasons often think of themselves as different, not belonging to the “normal” world any more. Many of them feel that they are “useless,” “defective,” “unfortunate” thus internalizing negative stereotypes regarding disabled people which are widespread in Russian society. These feelings, fears, and despair are especially prominent in cases of individuals with a sudden disability. Some disabled individuals stick with these negative labels, others develop active life strategies in order to overcome them.

36The moment when a person hears the watershed diagnosis marks the beginning of their rite of passage, except that it is in the opposite direction. A. van Gennep and V. Turner often describe in their classical ethnographic works rites of passage as events marking a person’s ascent to a higher social status in a society or, more appropriately, a person’s transition to a higher level in a social structure (Gennep van, 2001; Turner, 1966). In contrast, the watershed diagnosis means passage to a new status that is much lower, the nether world.

37The passage itself involves collecting documents to confirm his or her disease or defect, income, housing conditions, etc. Then, a person must undergo an expert medical and social examination by an organization that issues official disability certificates. This, in turn, entitles a disabled person to monetary and other disability benefits. The examination and registration period takes from two to four months. It is a kind of a liminality period which, according to V. Turner, is also typical of rites of passage and persons who undergo these rites have to pass this liminal period before moving to the final stage of the rite, the netherworld they will be living in as of that moment (Turner, 1985). Some individuals do not want the disabled person status and corresponding benefits thus trying to keep their existing job. However, after the medical diagnosis leading to the disabled person’s status, most people with impairments do pass to the netherworld with its rules and conditions.

Liminal persons

38After the watershed diagnosis, three psychological and behavioral stages for disabled people in Russia are typical. The first stage is denial of the diagnosis: considering the medical diagnosis an error and often experiencing anxiety and anger. Irina Yassina recalls her first days after she found out about her diagnosis:

When I read the words “incurable disease,” I still had a husband. After several terrible nights of my hysterics and constant questioning “What do we do now?” my husband said he wanted to live alone. He stressed that he would always support me financially. […] My future seemed more terrible than death to me, it meant helplessness, dependency, and loneliness. I feared waking up […] and when I did, I had a vague hope it had just been a bad dream. For six months, I could neither work, nor read, nor talk properly to my family and friends; I lost interest in my work. (Yassina, 2011)

39Irina understood that soon she would be unable to cope with her demanding job, enjoy her hobbies, and her lifestyle would be irrevocably changed. She also understood that her income would soon decrease significantly and that she would have to depend on her family and social workers for daily tasks. The diagnosis of disability was a real watershed moment for her as it marked the beginning of a very different life. At this stage, disabled individuals sometimes try to challenge the “unfair” diagnosis – they visit different doctors and clinics, try various medical treatments, costly surgeries and medication. Irina Yassina describes Mikhail Khodorkovsky’s providing funds for her to purchase expensive medicines and pay for consultations with the best medical specialists. Although disabled individuals cannot radically change their situation, sometimes they manage to get their diagnosis changed. After several years of struggle, Tamara Cheremnova had her “unfair” diagnosis and stigma of “deep mental disability (retardation)” withdrawn.

40At the second stage, disabled individuals often experience severe depression and are prone to self-isolation and self-destructive behavior. Grafov describes widespread alcohol abuse among blind people working at enterprises for the blind. Suicides may also occur at this stage (Grafov, 2009). Suvorov wrote about motives for suicide in his poetry – “I’d like to be free from many things and thoughts but I can’t. Most of all I’d like to be free from the paralysis of yearning. […] When I was 16, I began to comprehend my blindness and deafness as a situation which deprives me of many things, including music and art.” (Suvorov, 1996). The impossibility of listening to music which he loved dearly was especially painful for him; he was later able to listen to music with the help of a hearing aid but in 1974, when he was going through a most acute crisis, it was not possible. This second period of a person’s psychological condition corresponds to the liminal period of the rites of passage described by A. van Gennep and especially by V. Turner.

41The last stage may involve complete self-isolation and marginalization as well as deepening depression, alcoholism, and frustration. The feelings of alienation, stigmatization, and separation from the world of “able-bodied people” also deepen. In other cases, disabled people overcome many difficulties and find inner resources for self-realization. The disabled individuals mentioned in this paper were able to overcome their disability through productive work: Grafov was head of a department at the Soviet (now Russian) Association of the Blind, as well as writing essays; Cheremnova is the author of popular children’s books; Galiego became a prominent journalist; Suvorov is a poet, a scholar and teaches at a special institution for deaf-blind children; Yassina became a journalist and a writer; Natalia Barkhatova (Djimbo Di) composes music.

42Their rite of passage is completed: after the liminal period they finally pass to other levels of existence, to another world, all of them – both those who have overcome negative consequences of their diagnoses and those who were not able to do that – now have to play a new game with new rules. R. Murphy and his colleagues describing very serious physical impairments (e.g. paralysis) referred to disabled people as “liminal individuals” (Murphy et al., 1988). Several decades ago such individuals had no effective assistive technologies and psychological support to help them realize themselves. Some of the authors of the texts above also lived in similar conditions. However, they are not “liminal persons” as they have completed their rites of passage.

Living in the netherworld

43Issues faced by disabled people with an acquired disability equally apply to people with a congenital disability. Those who have innate impairments constantly write about their life in the netherworld filled with despair, humiliation and suicidal thoughts. These emotions are recurring themes in Galiego’s book:

I don’t want to be a burden on the people around me. I won’t be able to have a good job. I just want an injection to end my life. […] I am not fully human; this life is not for me. I will never be a scientist or even a tractor driver. I am only looked after out of pity. (Galiego, 2004)

44This is an example of feeling of being guilty within the framework of guilt culture.

45Adults who became disabled usually encounter many problems which sometimes seem unsolvable to them, such as starting or continuing education, finding or keeping a job. Sometimes they write about new habits, new forms of leisure but mostly about problems of communicating with a wider world. They also have to live with “extra-ordinary bodies” being alien in the world which became alien for them. Grafov had to quit university because in the late 1950s there were no assistive technologies that exist today helping blind people to study. Also, his family could not afford an assistant to help him with continuing his education. Suvorov stresses that the great majority of disabled people cannot even dream of a helper to accompany and assist them. Yassina who was in a more privileged financial position than most people with disabilities in Russia, writes: “All my life magically changed when Niusha, a kind magician of an assistant, came to my life.” (Yassina, 2011).

46Although Grafov had to abandon weightlifting, he was able to resume sports when he joined the Soviet Association of the Blind (it provided its members with some leisure and sports opportunities). After becoming disabled Grafov’s life to a great degree depended on the Soviet Association of the Blind – he was able to study at a special university for people with impairments and later worked at an enterprise for the blind. Suvorov was also able to do his graduate and postgraduate degrees as a member of an experimental education group for deaf-blind students. He later worked at a special home for deaf-blind children. That is how he describes his working life:

Every week, I commute by train from my apartment in Moscow to the town of Zagorsk [Moscow Region] asking an occasional passerby for help. I teach deaf-blind children at a special home. Besides, I carry out my academic research in psychology on “Perceptions among Deaf-Blind Children.” (Suvorov, 1996)

47Yassina was a well-known economist and worked in a Russian bank when she became disabled. She tried to keep her job for as long as possible. She wrote:

For some time, despite serious depression that followed my diagnosis, I was able to work. I had some work thanks to the help of my friends, especially Mikhail Khodorkovsky. One year after learning about my condition I still entertained fantasies about returning to my previous life with its freedom, interesting work, good salary, my beloved daughter, and my previous appearance. (Yassina, 2011)

48People with an acquired impairment especially suffer from losing former social and cultural statuses (Iarskaia-Smirnova, 2001). Those who were raised in special homes for disabled children (Galiego and Cheremnova) finished school but did not study further. Although they were not able to find a job in the formal sector, they managed to forge successful careers as freelancers. Natalia Barkhatova (Djimbo Di) who grew up in her family, also works as a freelancer. As mentioned before, people with an acquired disability often suffer from the feeling of uselessness and loneliness, as well as alienation from their former life, so much so because it happens unexpectedly. Centers for psychological rehabilitation are scant in Russia. None of the authors of the autobiographical texts mention any psychological centers or other forms of mental health assistance. Currently, existing organizations for disabled people do not provide such services. Moreover, the social and cultural “ghetto” for disabled people continues to exist in today’s Russia, and the “wall” around this “ghetto” is constructed equally by people with disabilities and so called “normal” people. Lack of disabled people-friendly urban infrastructure and assistive technologies, continuing stigmatization of disability, forces many Russian people with impairments into a “parallel world” or into creating their own subcultures. Some, however, live in almost total isolation.

Conclusions: Overcoming stigma?

49All of the autobiographical texts discussed in this paper feature individuals trying to overcome limitations posed by various impairments. All of the authors discussed in this paper attempted to escape many societal labels and clichés related to disability in Russia. Those who were raised in special institutions and who had to struggle for survival and dignity proved more capable of overcoming formidable challenges facing disabled people. Suvorov, for example, learnt to walk unassisted in Moscow streets, use public transport and shop with the help of special notebooks containing requests to passersby for help. Other disabled individuals also tried to overcome the stigma of disability and ableism – sometimes on their own, sometimes with the help of their relatives and friends. Of course, all these people have capacities and courage, some of them were lucky to meet other people who could help them. But in general they decided to describe their experiences as they were able to overcome many difficulties drawing mainly on their own forces and wanted to share their personal experiences and reflections.

50Despite their conditions and ableist limitations, these disabled individuals continually attempted to achieve self-realization. Many of them got a good education Cheremnova completed secondary school education on her own, Grafov and Suvorov went to university, Yassina continued in her job and when it became impossible took up journalism and book writing. Still, achieving professional success and financial independence remains a huge challenge for most people with impairments in Russia, and the majority of disabled people fail to make successful careers or become successfully accomplished in their lives in other ways. It was already mentioned that psychological and social rehabilitation for disabled persons is insufficient in Russia, associations for disabled people mostly function as leisure centers, so many people with impairments have to rely on their forces and (not always) on their relatives.

51I have also written that the authors of the autobiographies analyzed above had to overcome difficulties relying on their own strength and could realize themselves in arts, journalism, and in some cases in social work with disabled people. Expectedly, those who were not able to overcome difficulties and ableism usually do not publish their autobiographies. Speaking about that, I remember my talk with one of the informants, Anton (33 years old, with innate visual impairment, totally blind). He succeeded in graduating from the prestigious Moscow State University and now manages a commercial firm connected to manufacturing equipment for blind and low-vision people. He spoke specifically about widespread stereotypes about blind people in Russia (2015) but it is possible to extrapolate his words to disabled people in general: “You know that in this country a blind person is usually pitied, sometimes admired. Sometimes a blind person does earn public admiration.” Anton meant occasional media coverage of disabled people’s achievements, e.g. Paralympic athletes, singers and other successful individuals who are invited to participate in sporting or charity events. At the same time, the public is not interested in the daily life of people with impairments; the mass-media rarely cover their lives and struggles. The system discrimination within the ableist views is a result of a profound stigmatization. The general motif in the autobiographies and oral narratives of disabled people in Russia is societal indifference of the wider world towards their problems (Nosenko-Stein, 2017). Stereotypes about disabled people as helpless, financially dependent, a burden on society, or even beggars, are typical not only of Russia but of other societies as well (Bolt, 2014: 13-4). Sometimes we can see self-stigmatization which is also rather widespread among persons with impairments in Russia (Nosenko-Stein, 2017; Stroganov, 2018). As a result “normal” people prefer to distance themselves from people with disabilities. Suvorov and Djimo Di write that people often want to help a person with an impairment but do not know how to do that, because they perceive such people as living in a “parallel world” (Phillips, 2018) or on the Back side of the moon (Kurlenkova & Nosenko-Stein, 2018).

52Many of these fears, avoidance and prejudicial behavior have their roots in traditional Russian culture, essentially they are fears of otherness. However, these fears are not unique to Russia and are found in many other contemporary societies. In the Soviet and post-Soviet context, such attitudes could also be a product of the concept of social care for disabled people creating the stereotype of them being “a burden on society.” One may feel compassion for those people but wants no contact with them; some even feel better off not seeing them, except for occasions of their “incredible achievements” in sport or art, and other such endeavors. As a result, avoidance and distancing are typical attitudes towards people with disabilities in post-Soviet Russia. Such attitudes impact self-perception and self-representation of disabled people and impede their successful integration into society at large. This situation could be solved by a complex of measures including elaborating new concepts of disabilities in Russia, overcoming stigma of disability in society, and creating new trends in social politics.

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Elena Nosenko-Stein, « “I have always been a white raven and a black sheep” »Alter, 16-2 | 2022, 77-91.

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Elena Nosenko-Stein, « “I have always been a white raven and a black sheep” »Alter [En ligne], 16-2 | 2022, mis en ligne le 29 juin 2022, consulté le 30 novembre 2023. URL :

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Elena Nosenko-Stein

Institute of Oriental Studies, Russian Academy of Sciences

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