© 2019 Elena NOSENKO-SHTEIN
2019 — № 1 (17)
Nosenko-Shtein, E. E. (2019). Duraki iz parallel’nyh mirov [Fools from parallel worlds]. Medicinskaja antropologija i biojetika [Medical anthropology and bioethics], 17 (1).
Keywords: disability, people with disabilities, mental deficiency, special institutions for disabled people
Abstract: The article includes reflections on the issues raised in Anna Klepikova’s book about the life of mentally deficient people in specialized institutions. Those are multiple aspects of disability, specifically of a mental one, such as contacting other body and sexuality aggregates, lack of private space, gender roles, socialization issues, and many more topics raising thoughts, discussions and various interpretations.
Elena Eduardovna Nosenko-Shtein is a Doctor of Historical Sciences and Leading Research Fellow at the Institute of Oriental Studies, Russian Academy of Sciences (Moscow).
* Review of the book by Anna Klepikova Perhaps I am Foolish: An Anthropological Novel. St. Petersburg: European University in St. Petersburg Publishing, 2018. 432 p. ISBN: 978-5-94380-250-8
When people in Russia want to characterize a person whose behavior they consider “abnormal”, they use the words “idiot”, “schizophrenic”, “fool”, etc. In some cases, these words coincide with a medical diagnosis but they usually are only obscene words stemming from mental definitions. There has been a number of studies on stigmatization of disabilities, especially many of them emerged after the publication of the classical works by E. Goffman (Goffman 1963). The book by Anna Klepikova discusses the problems of the most stigmatized group of disabled people – those with mental and multiple disabilities. Anna Klepikova is a well-known expert in the field and wrote a number of articles on different aspects of mental disability in Russia. I would define her book not as an “anthropological novel”, but as a collection of essays summarizing her experience as a researcher and volunteer. (Anna Klepikova worked as a volunteer in a special institution for children and adults with mental and multiple disabilities.) Her experience as a volunteer is peculiar not only as an act of courage and aide to disabled people abandoned by their families but also a very useful anthropological experience of communication with the Others, whose problems are often ignored. Problems of the people with multiple disabilities (e. g., those with hearing, seeing, and other perception problems) who live in “parallel worlds” (definition by S. Phillips: Филипс 2018) were of interest to Klepikova from her childhood. The author emphasized in her work the experience of volunteering in special institutions for people with mental and multiple disabilities, describing her coming up with the idea for the book, her overcoming of negative stereotypes and fears widespread in the Russian mass consciousness. This unique experience is reflected in the book and makes it a most interesting object for a review.
One of the most impressive observations made by Anna Klepikova is on the Others’ bodies, with all their alleged negative and repulsive features. Detailed descriptions of these bodies make Klepikova’s research close to Body Studies, and they are very important in studying problems of people with mental and multiple disabilities who often have different dysfunctions and infections – especially those living in special institutions for disabled persons. As volunteers contact these “abnormal” bodies, they must disregard bodily and facial peculiarities, and not view these people as Others, whether children or adults (p.1o2-108). Others’ bodies are especially impressive among adult mentally disabled people, who often die in these special institutions. When a pretty little girl becomes a member of the special orphanage, all the staff come to look at her in order to admire her face (p. 157-158). This description reminds us that Other bodies are not just socially stigmatized, but that beauty and ugliness are perceived differently in different cultures and epochs. This is also very important for understanding disability not only as a construct but also as a physiological phenomenon which exists in a concrete historical and cultural context. Even people with physical disabilities but mentally “normal” often describe in their autobiographical texts that they felt distanced and even squeamish attitudes of “normal” people (see research about autobiographies written by disabled persons: Nosenko-Stein 2018а). Medical workers are often unprepared to contact Other bodies and psychics, and Anna Klepikova emphasizes that (p. 213-214).
Albeit the author positions herself as a supporter of a social model of disability, these reflections on the Other bodies could be used against the hyper-constructivist approach (see some publications in Russian about different models of disability: Romanov, Iarskaia-Smirnova 2006; Endaltseva 2018; Nosenko-Stein 2018b). Disability begins with the medical diagnosis, and this is something to remember while building any model of disability.
Medical diagnosis means the beginning of the rite of passage “back,” i. e. it differs from classical rites of passage described by A. van Gennep and V. Turner (Turner 1993; van Gennep 1999). While in classical theory a rite of passage marks the passage of a person to a higher social status, medical diagnosis leading to the registration of a person as a disabled one means his or her passage to a lower social, economic and cultural status. The well-known American specialist in Disability Studies, T. Siebers, stressed out the importance of physiological manifestations (pain, physical and emotional tension and discomfort) in the life of a disabled person (Siebers 2008). These observations are of great importance for people with mental and multiple disabilities.
Anna Klepikova also notes that disabled people in special institutions are very neglected in hygienic and pedagogic aspects, and they, especially children, become even more disabled in the mental and learning aspects. This is one of the reasons for permanent conflicts between volunteers and the staff of these institutions who are not interested in good conditions for children and adults and do not want any control over the activities of the staff. Moreover, nurses and other staff of these institutions sometimes do not like volunteers because they are thought to come only occasionally and leave when they want, whereas the staff have to stay and work there constantly.
The nurses have to take care of children and fulfill all the procedures, including such unpleasant ones as hygienic procedures (p.83-91). Their work is very hard and unpleasant in many aspects, however, their attitude to children, obscene names they call disabled people, as well as mocking and humiliations, are enough to question the quality of the staff in these institutions. These attitudes of the staff reflect the stigmatization of “abnormal” bodies as well as the hierarchy of bodies, i. e. the discernment of “clean” and “unclean” bodies. The author notes that this situation leads to negligence for their own appearances among volunteers, with some of them even losing interest in their sexuality (p. 345). The situation aggravates by the lack of financial support for these special institutions and insufficient training of the staff. The work in these institutions is very difficult, salaries and social statuses of the staff are very low, but the Russian government do not want to recognize these problems – to consider people with mental disabilities as individuals, to provide proper special training for people who work with them, and to create good conditions for people who work in these institutions. However, low statuses and salaries do not justify widespread theft and corruption in these institutions which the staff sometimes considers as a kind of “compensation” for low salaries and hard work (p. 43-45). The so-called “education” of children in these institutions often looks like total control, with the functions of the so-called “educators” unclear. They “teach” children once a week for 30 minutes, and within the time that short, it would be impossible to teach the norms of primary socialization even to groups of “normal” children (p.143-145). In the conclusive section, Anna Klepikova describes the changes that have taken place in the special institutions where she worked. Mentally disabled children have become pupils in schools but teachers are not ready to teach Other children.
Anna Klepikova mainly used the method of participant observation and self-observation; other anthropological methods were applied from time to time. Her attempts to conduct in-depth interviews were viewed negatively by the staff and volunteers. The author makes many “portraits” of the staff and especially volunteers who are often religious persons and consider their own work as a kind of social service. And it would be useful for readers to know more about this volunteer community and its ideology and goals at the very beginning of the book.
Anna Klepikova, again and again, writes about the problem of private space in these special institutions, its boundaries are permanently violated, children and adults do not have their own clothes and even toothbrushes, they have to do hygienic procedures in public. This problem is partly settled for the so-called “assistants,” i. e. teenagers and adults who can help the staff to take care of the helpless persons; they have belongings and sometimes get money for their work, however, they are also controlled.
The author raised the problem of general school education and professional education for persons with mental disabilities. She means mainly people with cerebral palsy who often have good intellectual abilities. Their problems have been described in several autobiographical texts; some of them became well-known journalists and writers (Galiego 2004; Cheremnova 2003). A. Klepikova believes that children even with hard forms of cerebral palsy can study in regular schools but children in special institutions for mentally disabled children often do not gain any education at all, and sooner or later become mentally retarded (p.135-137) and are then moved to psycho-neurological institutions where they often die. Klepikova also speaks about the horrible problem is “unfair” diagnoses which are still widespread in these special institutions: such diagnoses often aggravate the statuses of the mentally disabled persons who do not, in fact, have mental retardation. These diagnoses lead to the isolation of children, their mental retardation and desocialization. These children require special conditions that can not be provided in special institutions. This is also relevant for children with psychological problems who need an individual approach. Many of such children do not have either individual support or special conditions in their families, and they become mentally retarded, some of them sooner or later are transferred to special institutions.
Anna Klepikova writes a lot about this retardation – not only mental but also a physical one. The children’s weight and size are lower than those of “normal” children. Many of them have infections; they sooner or later become autistic because of deprivation of emotional contacts, living in a limited space, etc. (p. 60-66). Klepikova’s descriptions are sometimes reminiscent of the so-called “Mowgli children,” i. e. the children who grew up outside a human collective, were not socialized in their early childhood, and cannot play any social roles. The author considers her goal as a volunteer to emotionally connect with the children and adults, giving them a chance to free themselves from the limited space of the special institution. She notes that even with deep mental retardation these persons are neither “animals” nor aliens.
Anna Klepikova stresses out the religious aspect of this problem, meaning that the staff often considers the children “innocent angels” or “those punished by God” (see about such attitudes towards physically disabled children in: Nosenko-Stein 2017).
One of the problems of living with mental disability and Other body is the Other sexuality, which is considered unacceptable and unattractive, especially women’s sexuality, as women’s body is often considered more sexual in its nature. As a result, the sexuality of persons with mental disabilities is barely controlled in the special institutions; it is viewed as something shameful and dangerous because of a possible pregnancy. This control often derives from the Soviet traditions but sometimes takes ugly shapes, such as violation of women and sometimes men; their self-control is often weak and they are unable to either grant consent or renounce a sexual act.
One of the problems described by Klepikova is connected to the notion of “lifelong children,” i. e. people with mental retardation who are considered children. It is often difficult to see boundaries between childish and adult behavior among people with mental disabilities; as a result, they are perceived as either “asexual children,” or “sexually excitable lifelong children.”
In this context, the care after the children’s bodies is perceived as a cultural norm whereas care after adult bodies is much more difficult in the physical and psychological aspects. All these are additional aspects of the Other body problem.
The author also raises the very painful problem of eugenics in many countries in the first half of XX c. In contemporary Russia, some people, even those who declare themselves Christians, appeal for isolation, sterilization, and even elimination of people with mental disabilities. Anna Klepikova emphasizes that “commonplace eugenics” is rather widespread in Russian society. This “politics of popular eugenics” is, in practice, realized in the special institutions for mentally retarded people because of bad conditions, bad medical treatment and bad care after these people.
The author writes separately about the problems of deaf and blind people because they often become mentally retarded due to the lack of the two communication channels. The lives of the well-known deaf and blind persons, such as Hellen Keller, Olga Skorokhodova and Alexander Suvorov, prove they can successfully integrate in general society and become authors, activists or teachers (see about that: Stroganov 2018; Nosenko-Stein 2018а). Blind people were more or less socialized in different cultures, deaf persons could also take their niches on the social stairs, while deaf-and-blind people usually dwell beyond the human realm, i. e. in a specific netherworld. Most of them do not meet talented teachers as the aforementioned “famous deaf and blind persons” did.
As a result, many of such persons, and even persons with visual impairments only, become mentally retarded in these institutions. The author thinks that it is possible to create conditions, i. e. barrier-free environments and assistive technologies, for physically disabled people with good intellectual abilities, in which they could “normally” move, communicate, etc. However, my experience as a researcher dealing with the problems of physical disabilities and as a person with visual impairment allows me to state that physically disabled people are Other everywhere. Even in the Global North, they have a lot of problems with employment, leisure, family life, etc. Mentally disabled persons have problems with making their choices and usually need help in many spheres of life, e. g. in dealing with aggressive people (p. 259-264).
Deep stigmatization of people with mental retardation is not always typical for the Russian traditional culture, in which worship of the village “holy fools” (yurodivye) was widespread, and persons with light mental retardation often worked as shepherds or did some other relatively simple work. The aforementioned stigmatization mostly derives from the Soviet cult of labor and healthy / normal body. The egalitarian ideology often led to nonacceptance of any “abnormality” in behavior, clothes, appearance, sexuality, or body. If a person did not correspond to these notions he or she had to be “corrected.”
Moreover, Anna Klepikova notes that according to the theory of normalization it is necessary to correspond to the norms accepted in the culture; the medical approach also demands to avoid any “abnormality” in behavior and body (p. 236). Taking into account the author’s descriptions of Other bodies and the related problems, it is necessary to remember that it is impossible to keep these “abnormal” bodies in secret because these problems are often exposed in the corresponding medical diagnoses, including aggressive behavior, or in age-related problems. It is sometimes impossible to fully integrate such persons because of the problems with their self-control; however, some of them radically changed in summer camps where they had a personal coach, emotional contacts, and individual approach.
It is impossible to analyze all the problems Anna Klepikova discusses in her book. She mentions that in the last several years we can see some transformations in the sphere of improving quality of life in special institutions for people with mental disabilities, but also notes that these “improvements” are sometimes mere formalities, e.g. a new wheelchair ramp leads straight to a column, which makes it impossible to use (p. 354). This is an impressive detail, conveying a typical attitude to disabled people in Russian society.
Cheremnova, T. (2011) Istorija detskoj pisatel’nicy: obretenie sebja i sila mechty [The story of a children’s writer: finding oneself and the power of dream] (http://www.liveintemet.ru/ users/anna203/post176605681/) (01.04.2019).
Eco, U. (2005) Istoriya krasoty [History of Beauty], Moscow: Slovo Publishers.
Eco, U. (2006) Istoria urodstva [History of Ugliness], Moscow: Slovo Publishers.
Endaltseva, A.S. (2018) Disability Studies I poiski “chistoy” modeli: pro shvy, nevozmozhnost’ I peostranstvo mezhdi “globalnym Yugom” I “globalnym Severom,” [Disability Studies and Search for “Clear” Model: About Stiches, Dis-Ability and Space Between “Global South” and “Clobal North”], Kurlenkova A., Nosenko-Stein E. (eds.) Obratnaya sorona Luny, ili scho my ne znaiem ob invalidnosti [Back Side of the Moon or What We Do Not Know of Disability], Moscow: MBA Publishers, p. 43 – 74.
Galieoo, R.D.G. (2004) Beloye na chernom [White on the Black], Sankt-Petersburg: Limbus Press.
Gennep, A., Van (1999) Obrjady perehoda [Rites of passage], Moscow: Vostochnaya literature RAS.
Goffman, E. (1963) Stigma and Social Identity, Stigma: Notes on the Management of Spoiled Identity, Prentice-Hall.
Nosenko-Stein, E. (2017) Otnosheniye k invalidnosti sredi liudey s ogranichennymi vozmozhnostyami zdorovia v sovremennoy Rossii (predmaritelnye nabluedeniya [Disabled People in Today’s Russia Perceive Disability (Preliminary Results)], Butovskaya M., Fedenok Yu. (Eds.) Chelovek I sotsium: ot konkurentsii k tolerantnosti (probleme sotsialnoy integratsii) [A Person and a Society: From Competition to Tolerant (Problems of Social Integration)], Moscow: IEA RAS, p. 190 – 217.
Nosenko-Stein, E. (2018а) Opyt drugoy zhizni: samoreprezentatsiya liudiy s ogranixhennymi vozmozhnostyami zdorovia v avtobiografiakh [An Experience of Other Life: Self-Representation of People with Disabilities in Their Autobiographies], Kurlenkova A., Nosenko-Stein E. (eds.) Obratnaya sorona Luny, ili scho my ne znaiem ob invalidnosti [Back Side of the Moon or What We Do Not Know of Disability], Moscow: MBA Publishers, p. 95 – 126.
Nosenko-Stein, E. (2018b) Antropologia invalidnosti: problem I zadachi [Anthropology of Disability: Problems and Tasks], Etnograficheskoye obozrenie, N 1, p. 5 – 11.
Nosenko-Stein, E. (2018c) Zhit I rabotat v Izraile: opyt byvshikh sovetskikh immigrantov s narusheniyzmi zrenia [To Live and to Work in Isreal: An Experience of ex-Soviet immigrants with visual impairments], Nosenko-Stein E., Sobolev D. (eds.), Mnogolikij Izrail’: kul’tura, identichnost’, istoricheskaja pamjat’ [Multifacet Israel: Culture, Identity, Historical Memory]. Moscow: Institute of Oriental Studies (in print).
Romanov P. V., Iarskaia-Smirnova, E.R. (2006) Politika invalidnosti: sotsialnoye grazhdanstvo invalicov v soveremennoy Rossii [Polici of Disability: Social Citizenship of disabled people in Contemporary Russia], Saratov: Nauchnaya kniga.
Phillips, S. (2018) Parallelnye miry [ Parallel worlds], Kurlenkova A., Nosenko-Stein E. (eds.), Obratnaya sorona Luny, ili scho my ne znaiem ob invalidnosti [Back Side of the Moon or What We Do Not Know of Disability], Moscow: MBA Publishers, p. 223 – 273.
Siebers, T. (2008) Disability Theory, Boldly Rethinking of the Last Thirty Years from the Vantage Point of Disability Studies, Ann Arbour: University of Michigan Press.
Stroganov, M. (2018) Avtoreprezentatsiya slepoglukhogo cheloveka v literature [Self-Representation of a Blind and Deaf Person in the Literature], Kurlenkova A., Nosenko-Stein E. (eds.), Obratnaya sorona Luny, ili scho my ne znaiem ob invalidnosti [Back Side of the Moon or What We Do Not Know of Disability], Moscow: MBA Publishers, p. 127 – 177.
Turner, V. (1993) Simvol i ritual [Symbol and Ritual], Moscow: Nauka.
Yassina, I. (2011) Istoriya bolezni [A Story of an Illness], Znamya, N 5 (https://magazines.gorky.media/znamia/2011/5/istoriya-bolezni-3.html) (01.04.2019).