This article presents an overview of disability rights issues in the context of state socialism in the former Soviet Union, especially the Russian and Ukrainian Soviet Socialist Republics. The Soviet state's governmentality of disability, and the little-known history of Soviet-era disability rights movements, produced important legacies that shape disability policy and discourses, rights movements, and experiences of disability in the region today. By focusing on Soviet approaches to housing, education, rehabilitation, and work vis-à-vis people with disabilities, and documenting the varied responses of disability communities, this article contributes a missing Soviet chapter to the new disability history. This approach encourages readers to reconsider some assumptions about the evolution of disability rights outside the West. Discussions of Soviet-era state policy are interwoven with descriptions of people's personal experiences to emphasize the ways that people with disabilities in the former Soviet Union have been active agents — if not organized advocates — across the 20th century.
During the 1980 Olympic games in Moscow, a Western journalist inquired whether the Soviet Union would participate in the first Paralympic games, scheduled to take place in Great Britain later that year. The reply from a Soviet representative was swift, firm, and puzzling: "There are no invalids in the USSR!" (Fefelov 1986).1 This apparatchik's denial of the very existence of citizens with disabilities encapsulated the politics of exclusion and social distancing that characterized disability policy under state socialism. Historically throughout the former Soviet bloc, persons with physical and mental disabilities have been stigmatized, hidden from the public, and thus made seemingly invisible (Dunn and Dunn 1989).
More than a quarter century later, still little is known about the experiences of persons with disabilities in the former Soviet Union, who remain in many respects an "unknown population" (Poloziuk 2005).2 The social justice struggles of people with disabilities under the Soviet regime have been even less explored. In this article, I seek to fill these gaps by bringing the former Soviet Union — particularly Russia and Ukraine — into the worldwide "new disability history" (Longmore and Umansky 2001) through historical and ethnographic explorations of disability experience, policy, and rights movements in the former USSR.
This inquiry is rooted in a larger research project on contemporary disability rights movements in Eastern Europe. As a cultural and medical anthropologist, since 1995 I have conducted ethnographic research in Ukraine, which gained its independence from the former Soviet Union in 1991. Previous topics of my research have included the effects of the 1986 Chernobyl nuclear disaster on attitudes and strategies for health (Phillips 2002), and the role played by women in post-Soviet civil society initiatives (Phillips 2008). Since 2002, my research has focused primarily on movements for disability rights in post-Soviet Ukraine. This research centers mainly on people with spinal injuries and others with mobility disabilities.3
Using anthropological research methods, I have undertaken participant observation and interviews with leaders and members of 26 disability-related non-governmental organizations (NGOs) in Ukraine, some of which I have been following for the past six years. In total I have conducted nearly 90 taped personal interviews with persons with disabilities and others with ties to the disability community, including life history interviews with 15 disability rights activists. I am exploring particular aspects of disability experience after socialism, including: intersections of disability and gender formations; changing perceptions of self and personhood; disability, spatial politics, and citizenship; and others. I traveled to Moscow to conduct several interviews in 2006, and also have investigated disability rights issues in Bulgaria, Romania, Croatia, and the Former Yugoslav Republic of Macedonia (Phillips n.d.) In the present article, I rely on the available Russian, Ukrainian, and English-language published sources, as well as my own ethnographic data, particularly life history interviews.
The material presented here offers an important backdrop for understanding the barriers to social inclusion and full citizenship rights that persons with disabilities living in former socialist states continue to face. Although improvements in disability rights have been made in post-Soviet Ukraine and Russia, there are important legacies of the socialist era that have shaped current disability policy, official and popular discourse about disability and disability rights, and the strategies that advocacy groups develop and are able to pursue. Considerable reform has been achieved in disability rights legislation, but many Soviet-era structures, institutions, and practices are still in place either de facto or de jure. Sketching out a Soviet chapter in the new disability history is a first step in contextualizing experiences of, attitudes toward, and the governmentality of disability in contemporary Ukraine and Russia.
I begin with a discussion of disability in the pre-Soviet Russian Empire (circa 1700-1917), where relatively few efforts were made by state authorities to regulate or support the lives of people with disabilities. This is followed by a focus on Soviet-era disability policy, which I characterize as a functional model of disability. Areas of particular concern include the system of institutionalization, the special education system, and Soviet approaches to rehabilitation and work placement. I then examine key moments and figures in the struggle for disability rights in the Soviet Union. In line with my primary research interests, particular emphasis is placed on issues related to mobility disability.4
Disability in the pre-Soviet Era
Little is known about the lives of people with disabilities during pre-modern (pre-18th century) and modern history in the territory that encompassed what is today Ukraine and Russia, since historians and ethnologists have not systematically studied this question. We do know that, in traditional Ukrainian and Russian cultures, those with physical and intellectual disabilities were not socially isolated. Traditional life was village-based and centered on the Orthodox Church (Vovk 1995:122), and individuals with physical and mental disabilities presumably were integrated into their communities.5 They worked alongside others to the extent possible, for example making baskets and fishing nets, sewing, and embroidering (Bondarenko 2005).
Literature on the pre-modern period refers to "wandering minstrels," who often were blind, and "strolling beggars," many of whom were disabled, who solicited charity in and around Orthodox Churches and monasteries. Such persons were often referred to in Russian as ubogi, a term that translates literally as "of God," iurodivye — "God's fools" or "holy fools," and proroki, or "prophets."6 Because of their close association with churches and religious moral culture, these "wanderers" often were respected and revered, but persons thought to be mentally ill were also treated in a dualistic fashion — some manifestations of mental illness were revered, while others were feared (Brown 1989:15-16).
Beginning in the 18th century, the main caregivers for people with disabilities were families, the elites, and the Church, but the tsarist state played an increasingly important role. In the early 1700s, under Tsar Peter I, the Great (1682-1725), for instance, the state began to take a more active role in identifying and regulating the lives of people with disabilities. As part of his efforts to regularize and make compulsory the service obligations of the Russian nobility, Peter required all gentry-persons suspected to have mental disabilities (called duraki — "fools" or "idiots" — a term with more negative connotations than ubogi and iurodivye), to appear before the Senate for certification. This certification allowed individuals to be exempted from state service, and it also limited their property rights and forbade them from marrying (Brown 1989:17). Peter made unsuccessful attempts to exclude the Church from responsibility for caring for persons thought to be mentally ill — in 1723 he decreed that such individuals no longer be sent to monasteries, and several secular institutions were organized in Saint Petersburg — but these efforts were abandoned by Peter's successors.
Catherine II, the Great (1762-96) did, in 1775, establish regional Departments of Public Welfare as part of her reforms of local government. As in many Western societies, this was the "era of madhouses," and these Departments were responsible for building asylums to accommodate the "insane." Julie Brown (1989:19) notes that through the next century, the asylums were viewed with dread and suspicion and for the most part the mentally disabled were supported and cared for by their families.
The position of people with disabilities in pre-Soviet society changed further with urbanization and industrialization in the Russian Empire during the 19th Century. Community support structures for persons with disabilities eroded as more and more people settled in cities. Despite Peter's earlier reforms, support for people with disabilities and others who were socially disadvantaged (the elderly, orphans, the destitute) rested with the Orthodox Church and the elites of society — especially the royal family and intellectuals — in a tradition of patronage and philanthropy known as metsenatstvo. The first school for deaf children, the Murzkina school, was founded in 1807 in Pavlovsk with the personal funds of the Empress Maria Fedorovna; in 1809 the school was moved to Saint Petersburg.7 A school for blind children soon followed. Philanthropists supported various schools, hospitals, and other institutions by donating money and also services (free medical consultations, and pedagogical assistance, for example), and some homes for people with disabilities continued to exist in monasteries.
The latter half of the 19th century and the early 20th century saw a huge increase in institutions for the mentally disabled in the Russian Empire; between 1860 and 1912 the number of asylums nearly quadrupled to include 160 such institutions housing 42,489 persons (Brown 1989:26). Most of those institutionalized were of peasant origin, and it has been suggested that this reflects the erosion of social support structures for peasant families during this post-emancipation period, and also the peasantry's continuing economic hardships (Brown 1989:29-30). The establishment of the psychiatric profession in the 1860s, which increasingly held sway over diagnosis, treatment, and institutionalization, also accounted for the marked growth of the asylum population. Overall, the pre-revolutionary development of policies and attitudes toward people with disabilities was similar to changes in Western countries: increasing state-based interventions, growing networks of institutions to confine and treat individuals, medicalization, and the validation of "expert" knowledge in addressing disability (Brown 1989:33).
Much of what little is known about the life stories of persons considered to be mentally disabled in the 19th Century Russian Empire was reported by Ivan Pryzhov (1827-1885), a civil servant and member of the radical intelligentsia who documented the lives of "social misfits" in Moscow in the mid-1800s.8 Ahead of his time, Pryzhov used methods of cultural anthropology to conduct a social history of the poor; in addition to perusing existing writings on the topic, he gathered stories, did interviews, and conducted participant observation in taverns, markets, churches, and asylums.
Pryzhov focused his studies on two specific categories of people — "prophets and holy fools," and "hysterics" (klikushi).9 Pryzhov's writings are lively and witty, but he takes a decidedly utilitarian view of "holy fooling" (iurodstvo) as a calculated way for the marginalized to make a living. This conclusion is underscored by Pryzhov's frequent use of the verb "to holy fool" (iurodstvovat'), which demarcates the solicitation of alms and "playing the fool" as a profession.10 However, the level of detail provided by Pryzhov as to the personal histories of the "holy fools" and their participation in social life gives a general sense of social attitudes toward difference and disability in the Russian Empire.
In Pryzhov's descriptions of what he calls 26 Moscow Prophets, God's Fools, and Fools (1996), a common theme is the continued association of the iurodivye with the Orthodox Church. This relationship was formalized in some instances, as in the case of "Danilushka Kolomenskyi" (Danil from Kolomen), who was mentored by the leadership of his local church from an early age (Pryzhov 1996:45-48). In turn, Danil contributed his earnings from begging to the church for projects such as building bell towers and painting icons. Pryzhov describes women iurodivye who wore garb approximating that of nuns and priests (black bell-shaped robes with a sash, and black scarves or caps), and who were paid by many Muscovite families for their prayers and participation in weddings, funerals, and other religious services (1996:48-49). Like these women, many of the iurodivye were only unofficially and rather ambiguously tied to the Orthodox Church — church officials often did not recognize them as religious or holy figures, and the iurodivye frequently engaged in practices such as "telling" (predicting the future) and curing that were not sanctioned by the Church.
Overall, Pryzhov's descriptions of iurodivye in Moscow paint a picture of these individuals as part of the social fabric, even local celebrities in some cases, who at a minimum were tolerated by fellow Muscovites. Most of the iurodivye profiled by Pryzhov had come to Moscow from small cities and towns in the Russian provinces, and they continued to travel throughout their lives.11 In Moscow, according to Pryzhov, persons of means, usually merchants, often housed the iurodivye. The iurodivye lived in basements and kitchens, and were looked after by the owners' servants. The iurodivye were closely associated with markets, where they solicited alms. Market traders believed that donating to the iurodivye brought them good luck in business, and those iurodivye who were believed to possess powers to predict the future and heal afflictions were particularly venerated.
The most colorful example of this homage is found in Pryzhov's description of Ivan Yakovlevich, a famous "prophet" who moved to Moscow after living in the forests outside Smolensk, where he had gained a reputation for predicting the future. In Moscow, he was placed in Preobrazhenskoe hospital-asylum, where he lived until he died. According to Pryzhov, the "prophet" lived in squalid conditions, but this did not deter a constant stream of visitors from near and far, many of them nobility, who paid him for his "seeing" and healing services.12 In Pryzhov's description, Ivan Yakovlevich's wake and funeral were attended by huge crowds, and some mourners gathered up his personal effects and even "sand" and "liquids" from his very coffin as valuable relics, which were subsequently sold for ever-increasing sums (1996:41-42).
Like Pryzhov's, most of the scant studies of issues related to disability in the 18th to early 20th century Russian Empire focus on "holy fools" and other "wanderers" (blind minstrels, for example), but little is known about the lives of persons with physical disabilities or sensory disabilities other than blindness.13 Contributing to this lacuna is the fact that, outside asylums and a few special schools for persons with disabilities, there was no real formalized structure for defining, assessing, and addressing disability; disability was not then part of public discourse, and we have few traces of disability experience, social attitudes toward people with disabilities, or institutional interventions. All this changed when the Bolsheviks came to power.
Disability and Governmentality in the Early Soviet Period
If ubogi and iurodivye were labels most commonly used to denote persons thought to have mental disabilities, during the 19th Century the term "invalid" emerged to describe persons with physical disabilities. In the tsarist period the term "invalid" was used primarily in reference to the military and soldiers, and it did not necessarily carry the negative connotation of one who is "less" or, literally, "in-valid" (Hartblay 2006:49-50). Indeed, in his comprehensive dictionary of Russian compiled in the 1800s, Vladimir Dal defined "invalid" as "one who served, revered warrior; unable to serve because of wounds or physical damage — worn out one."14
However, with the Bolshevik Revolution and the establishment of the Soviet state and a formal system of classification and administration of disability, the meaning of "invalid" changed to designate those Soviet citizens who had lost the capacity to work. The definition of disability, or invalidnost', as loss of labor capacity was a cornerstone of disability policy in the workers' state of the Soviet Union (Madison 1989), where citizens were required to engage in paid labor as a "socially useful activity."15 The citizen's social utility was measured in terms of one's potential role in production, and level of disability was assessed according to a scale of labor potential. Therefore, the Soviet state's approach to disability was not really the "individual, tragic" model found in the U.S., Great Britain, and elsewhere and so criticized by disability rights advocates beginning in the 1960s. Rather, the Soviet state employed a functional model of disability, based on a person's perceived "usefulness for society."16
The emphasis on labor capacity as the primary criterion for applying the label of "invalid" to Soviet citizens was reflected in some of the first legal discussions to appear on the heels of the Bolshevik Revolution in 1917. November 1917, for example, saw the publication of a legal directive about the inclusion of all types of loss of work capacity in the state program of social insurance.17 The Statute on Social Protection of Workers, which guaranteed state assistance to those unable to support themselves due to loss of labor capacity, followed in October 1918. Early Soviet disability policy was formulated in a context of numerous armed conflicts — the First World War and the Russian Civil War both produced significant numbers of disabled veterans — which led to a "hypertrophy" of legislation relating to "war invalids" (Shek 2005:380). Indeed, until the mid-1920s only the war injured could be classified as "invalids."
Ol'ga Shilova (2005:106-107) notes that, when the fledgling Soviet state extended support to disabled Red Army veterans of the Russian Civil War (1918-1921), emphasis was placed on "restoring" veterans' lost labor capacity in order to return them to the workforce. They were offered housing and vocational training in shelters, schools, workshops, and "homes for invalids."18 Beginning as early as 1918 the Bolshevik government sorted "invalids" into two broad categories: those who could work or who possessed the potential eventually to return to the labor force; and those "total invalids" who could not (Shilova 2005:107-108). This focus was defined further in 1921 when "invalids' homes" were reorganized and designed to accommodate citizens based not primarily on cause or type of disability, but according to their level of work capacity (Shilova 2005:114). Institutions to house persons with disabilities included three main types: those for persons who had total loss of labor capacity and required constant care (these institutions had a medical-focused mandate); those for " invalids" who had lost most labor capacity but could be trained to do "light, irregular" work "for themselves and for the institution;" and institutions for "supplementary social support" (dopolnitel'nogo sotsial'nogo obespecheniia) for those whose partial loss of labor capacity left them unable to make an independent living. Residents of the latter type of institution were required to work in specialized workshops and factories. Tellingly, a fourth type of "invalids' home" was developed: "exemplary institutions" (pokazatel'nye uchrezhdeniia), exceptional facilities that presumably were used to showcase best practices (Shilova 2005:114).
In 1932 a disability classification was introduced that divided "invalids" into three groups based primarily on a calculation of one's degree of ability to work. These categories are still used to designate disability status in present-day Ukraine and Russia. Group I includes those considered unable to work and deemed to require constant nursing care; group II includes those not perceived to require constant nursing care who have lost some capability to work but may work in special conditions; people in group III are considered the partially disabled who have lost some work capability but may engage in part-time or casual work (Madison 1989:171-172).
Although previous to 1932 doctors conducting examinations of those seeking disability status were required to assess level of disability and the amount of labor capacity the candidate had lost, the new regulations required doctors to determine the candidate's remaining labor capacity (Fieseler 2006). If, in 1941, work was conceded as a "right" for people with disabilities, subsequent regulations posited work as a "duty" and, later, a "compulsory measure" (Fieseler 2006). In this context, being deemed "unable to work" (Rus. nerabotosposobnyi, Ukr. nepratsezdatnyi) had negative connotations, and conferred on the individual a standard set of presumed qualities: social (exile), psychological (a loner fixated on one's own misfortune), work (a low-qualified worker of limited skill and intellect), and economic (dependent, pensioner).19
In a system that is still in place in present-day Russia and Ukraine, in the Soviet Union those categorized as disabled and their dependents were offered several types of material support: pensions for those no longer working due to disability, pensions for survivors of people with disabilities, pension supplements for dependents of unable-to-work individuals, and a range of entitlements such as reduced utility expenses and rent, free or discounted public transportation, and the free provision of technical equipment (i.e. wheelchairs, crutches, hearing aids, specialized vehicles). Pensions were designed to compensate for wages lost, rather than for the physical or mental harm sustained. In general, disability pensions were calculated based on one's disability group, reason for the disability, work history at the onset of disability, and former salary.
"Suffering Victors:" Disability and the Second World War
The post-Second World War period is important for understanding Soviet approaches to assessing, regulating, and compensating for disability, because it was during this time that many of the state's disability policies were formulated and refined. During the late 1920s and 1930s, two main groups constituted the bulk of the population considered "invalids:" the elderly, and disabled veterans of the First World War and the Russian Civil War. However, with the huge numbers of war wounded during the Second World War (1941-1945, called the Great Patriotic War in the former Soviet Union), the ranks of "invalids" in the Soviet Union grew rapidly.
Under Stalin, the Soviet state's approach to dealing with citizens disabled during the war was guided by two main ideas. First, it was thought imperative to provide adequate support to "war invalids," in part to placate them and prevent them from rebelling against the government, as had disabled veterans of the war of 1812. Indeed, the Second World War-wounded returning from the front sometimes were called "neo-Decembrists," in reference to the Decembrist uprising of 1826 (Tchueva 2008:96). At the same time, however, in Stalin's trend of silencing or denying any negative aspects of the Second World War, images of "war invalids" were excluded from the official interpretations of the war experience and representations of post-war life. The war wounded — many of them amputees in wheelchairs, who colloquially were called "samovars" (Gudkov 2005:4) explains that they seemed like "human stumps on little wheels") — were a grim and "superfluous" reminder to the populace of the inhumane traumas of war:
The invalids in the post-war period...were left to the mercy of fate, people were ashamed of them, turned away from them, hid them with an unpleasant feeling of guilt and a sense of the ugliness of life — everything was done to keep them out of the official gala picture of peace-time life. (Gudkov 2005:4)
This dual approach to addressing disability — the provision of state support for the material needs of people with disabilities, but within a culture of stigma and social isolation — was to characterize Soviet disability policy throughout most of the 20th century. Because the problems of "war invalids" was a taboo subject, official statistics were scant, and existing Soviet-era statistics are highly questionable. As a result, we do not know how many disabled war veterans were living in the Soviet Union after the war. Beate Fieseler (2006:46-47) provides a very conservative estimate of nearly 2.6 million, or 7.46 percent of the Soviet Army's 34.5 million, but she concedes that the true number of "war invalids" must have been significantly higher.
In the early 1940s, with disabled veterans already returning from the front, a series of resolutions were passed providing benefits to "war invalids." The earliest of these concentrated on specialized vocational training, job placement, education, and housing. Disabled veterans were trained as clerks, accountants, photographers, beekeepers, cobblers, carpenters, and cheesemakers, and were taught skills such as basketmaking and watch repair. Although the Soviet state advertised these efforts as evidence of its beneficence toward wounded veterans, immediately post-war only a fraction of "war invalids" could take advantage of this training.20
The state's priority was not so much to "rehabilitate" the disabled war veteran per se as to facilitate as robust a work force as possible in the traumatic war and post-war period. Within the Soviet ideology of modernization and industrialization, all citizens, including those with disabilities, were viewed as a potential labor resource. In this context many war veterans with significant disabilities were denied disability status and thus required to work, or were assigned to group III, the category of least severity. This is despite the fact that retraining efforts were unsatisfactory and technical interventions under-developed (Fieseler 2006:48-49). In step with the state's emphasis on labor capacity as the essence of disability policy, during the Second World War, institutions for the war disabled were divided into two main types: "work institutions" (trudovye internaty), and "hospital-type institutions" (internaty bol'nichnogo tipa) (Shilova 2005:123).
Fieseler's (2006:51-52) research has shown that disabled veterans' mobilization into the labor force frequently came at the expense of their previous professional and social status, since "invalids" inevitably were assigned low-skilled and poorly paid work. A coordinated effort was made to channel the war disabled into production work, and disabled workers were monitored and assessed for improvements in health and signs that they were "adapting" to the new work conditions. Thus, notes Fieseler (2006:47), "…the participation in productive work was considered not merely an effective remedy, but a main tool of rehabilitation."
Tchueva (2008:106) further interprets this push to reintegrate disabled workers into the labor force as a reflection of the important mediating and surveillance functions the workplace played in the Soviet Union:
….Work, and more precisely, the Soviet enterprise, was the primary agent of social politics in the USSR, being a key channel of distribution, and a powerful means of control. As a result, for the state, unemployment represented an undesirable complication in procedures of control of the citizen, and for the citizen, it meant lack of access to channels of distribution of resources.
Tchueva's analysis adds to our understanding of the Soviet functional approach: not only did the state emphasize vocational training and employment of the disabled in order to maintain a strong workforce; the policy was enacted to save resources and maintain social control. After all, labor in specialized schools and workshops was the primary channel through which citizens with disabilities received the Soviet socialist ideological indoctrination (Shek 2005:391).
Another cornerstone of Soviet disability policy that was solidified during the war period was the provision of disability pensions. In 1944 a resolution was passed providing pensions to disabled veterans of all ranks (Tchueva 2008:97).21 Disability pensions for veterans were differentiated along three planes: one's salary before being mobilized, military rank, and disability group (degree of disability). This support was chronically inadequate — the pensions paid to group I "invalids" were not enough to live on, and those in groups II and III received even less — and being an "invalid" quickly became synonymous with impoverishment. Disheveled war veterans soliciting alms and seeking to sell their own meager possessions at train stations, markets, and street corners were common after the war, visible evidence that disabled veterans were deprived, "suffering victors" (Fieseler 2005).
The war-wounded also were offered early retirement, expedited access to housing and health trips, specialized medical care, and other benefits.22 Veterans' hospitals were established, but, particularly in the early post-war years, the number of beds was inadequate and conditions were sub-par (Tchueva 2008:104-105). Furthermore, medical services offered to disabled veterans primarily focused on the provision of prosthetic limbs and wheelchairs, which were antiquated in design and in short supply (Fieseler 2006:54; Tchueva 2008:104).
Although the Soviet state did intervene to provide some material support to disabled veterans of the Second World War, the physical manifestations of disability — and the use of techno-medical interventions to address them — were privileged over considerations of psychological trauma of war. In her study of literature in the late- and immediate post-Second World War Soviet Union (1944-1946), Anna Krylova (2001:316) notes that, "Circumscribed within the limits of a physiological paradigm, the [Communist] Party press presented the war legacy as readily remedied by means of reconstructive surgery and high-quality false limbs." Likewise rooted in material explanations for psychological disorders, Soviet psychiatry also located war-related mental trauma in the sufferer's body, and sought physiological bases for veterans' psychological problems. In this context, Soviet writers were assigned the role of "healers of wounded souls" of the war disabled. Writers such as Aleksei Tolstoi, Wanda Wasilewskaia, and Nikolai Pogodin produced newspaper articles, novels, plays, and poetry that constituted what Krylova (2001:321) calls a "Soviet healing literature."23
In the post-war Soviet press and literature, those "invalids" who were able to "overcome" the traumas of war and "rise above" their physical disabilities were glorified as heroes, while the voices of others disabled by war were not represented (Krylova 2001:316). Examples include the canonization in fiction of war heroes such as the fictional Colonel Voropaev (the semi-autobiographical creation of Petr Pavlenko (1950)), and the real-life combat pilot A.P. Meresiev (Polevoi 1946), both of whom were amputees (Dunham 1989:152-153). The pre-war cult of exceptional "invalids" was also revived after the Second World War in this "heroic" genre. One example is the resurrection of Pavel Korchagin, the protagonist of Nikolai Ostrovskii's semi-autobiographical novel How the Steel Was Tempered (1932). Korchagin, who "ends his life in bed, blind and paralyzed" (Krylova 2001:316) after having "found the strength" to live, even when life was unbearable, was invoked by the newspaper Pravda as an example for the country's "invalids" of how to overcome war trauma. The primary message was that, if a war veteran found himself (the voices of women veterans were absent in this literature) unable to "overcome" the trauma of war and the challenge of physical and mental disability, the fault lay not with the state, but with that individual. Parallel to this trend in literature was a comparable strategy used by state functionaries — "the singling out of a few invalids who, styled as heroes of both war and labour, were the recipients of exemplary care and support" (Fieseler 2006:57).
Thus, although a few disabled war heroes were glorified in Soviet literature, the press, and state propaganda, the vast majority of war "invalids" were isolated and left to "heal" in private spaces such as the home, or institutions. Indeed, Krylova (2001:325) describes how, as revealed in the post-war Soviet literature, the private sphere was demarcated as the "healing place" for the war wounded, with women (usually wives and mothers) assigned the role of "social therapists of traumatized male souls." This phenomenon is indicative of another important characteristic of Soviet disability policy just after the Second World War: the state continually shifted the burden of supporting people with disabilities to local government structures and social support networks, including the kolkhoz (collective farm) and the family (Tchueva 2008:103).
This was a problematic "solution," since not all disabled veterans enjoyed family support structures, and the drastic hardships of the post-war period necessitated multiple interventions. Fieseler (2005) notes that, for a time, the tsarist-period tradition of philanthropy was revived in Soviet cities and towns, where citizens were called upon to give charitable donations in support of the needy, many of them "war invalids." But, more often than not, this "volunteerism" was initiated not at the grassroots, but through local Communist Party structures, the Komsomol (Communist Youth Organization), and the trade unions.
There was a much darker side to Soviet policy vis-à-vis disabled veterans, whose continuing need for more support was unwelcome evidence of the Soviet state's inability or unwillingness to adequately provide for all citizens' needs. During the late 1940s and 1950s disabled veterans were dispersed from Moscow and other large cities for forced resettlement in remote areas. According to Fieseler (2006:51), kolkhoz supervisors in rural areas, in order to shed inefficient disabled workers, sometimes turned them in as "parasites;" such workers were then deported, presumably to labor camps.24 Penal camps were established in the Soviet Union for disabled prisoners and disabled veterans of the Russian Civil War and the two World Wars. The most infamous of these is the Spasskaia labor colony near Karaganda, Kazakhstan, to which 15,000 disabled prisoners were sent in the late 1940s and early 1950s (Solzhenitsyn 1985). Similarly, disabled veterans of the Second World War were secretly exiled from Leningrad (now St. Petersburg) and Leningrad oblast' to the Valaam archipelago, in the Republic of Karelia (Russian Federation). Valaam and the fate of those veterans are still shrouded in mystery (Fefelov 1986:51-57).
"All Invalids are Not Created Equal:" Disability and Differentiation
An important characteristic of Soviet approaches to disability classification and compensation was the principle of differentiation. Disability benefits for various "categories" of people with disabilities — whether based on age at onset of disability, cause of disability, extent of disability, and others — were measured and allocated according to different scales.25 As discussed above, within groups of people with disabilities, such as disabled veterans, pensions were differentiated according to certain criteria such as pre-disability salary, military rank, and so on. Similarly, members of some disability categories — in particular persons disabled by war and those disabled on the job — were entitled to more privileges than others. These categories also were accorded a privileged place in official discourse. In official post-Second World War propaganda, for example, the issue of disability figured only as related to disabled veterans and persons disabled on the job, who were singled out and praised for their service to the country (Shek 2005:382).
According to the Soviet functional approach, which privileged work capacity as the primary criterion for citizenship, some persons with disabilities were deemed less "useful" for society (disabled children, and the intellectually and mentally disabled, for example), and thus were offered fewer entitlements (Iarskaia-Smirnova and Romanov 2002:203). In fact, the Soviet state's reliance on work capacity as the sole criterion of disability status meant that children born with congenital disabilities were excluded from the ranks of "invalids" and the concomitant benefits and entitlements (Shek 2005:386). Not until 1967 was all-Union legislation adopted providing benefits to children with disabilities, and the term "child-invalids" (deti-invalidy) emerged only in 1979 after the United Nations declared that year the International Year of the Child.
The Soviet functional model of disability resulted in a hierarchical ranking of "invalids," a situation colorfully described by Lev Indolev, a journalist and key figure in the Russian disability rights movement. Although Indolev (2001:147) was writing about post-Soviet Russia, the roots of the differentiation he describes lie in the Soviet period:
All invalids are not created equal (invalid — invalidu rozn')....At the head of the line stand the all-important invalids of the Second World War. Behind them we find other invalids of military conflict who have similar entitlements, starting with participants in squelching anti-communist protests in Hungary and Czechoslovakia, and ending with those wounded in Afghanistan and Chechnya. Further back [in the line] are invalids of military service, the ministry of internal affairs, the KGB and other "forces." Then invalids of the workplace and those injured "at the hands of others" get their turn. Those accident victims (bytoviki), who are themselves at fault, come in last, along with the congenitally disabled, who have no one at all to blame.
This "ranking" of disability categories caused friction between members of different disability groups, who found unfair the privileging of some groups and some types of disabilities over others. This official categorization produced a pronounced demarcation between disability groups, and persons who experienced different disabilities (e.g. blindness, deafness, mobility disability) did not for the most part develop a shared disability consciousness across the disability spectrum. This lack of common identity was compounded by the competition that the state's strategy of differentiation engendered between groups and individuals. This is despite the fact that, even those categories such as disabled veterans who were entitled to "extras" ("war invalids") were guaranteed a specialized car free or at discount; the right to purchase furniture, carpets, televisions and other deficit goods without waiting in line; and numerous subsidies for telephone and rent) generally remained impoverished and marginalized in the Soviet Union. By no means did the promises of considerable benefits and entitlements for people with disabilities on paper mean that these promises necessarily were fulfilled.
The Soviet state actively choked off or carefully regulated potential outlets of collective consciousness and protest. For instance, for a time after the war small cafes and bars known colloquially as "Blue Danube" served as gathering places and points of information exchange for war veterans, including the war disabled, but these establishments were shut down by state authorities in 1948 (Fieseler 2005). Differentiation also may have served in part as a way to foment competition and resentment between groups, to prevent collective consciousness and collective action against the state. Indeed, in her study of the "claims" or complaints (zhaloby) that disabled war veterans in Saratov (RSFSR) sent to newspapers and local authorities, Ekaterina Tchueva (2008:100-101) notes that such claims were very individualized. The complaints were rooted in the claimant's own life experiences and perceived needs, rather than in a sense of group identity and collective rights of "war invalids." Tchueva argues that the "individualization" of claims, which continued until the "thaw" under Khrushchev (beginning in the mid-1950s), indicates that the state successfully preempted the development of a disability consciousness among disabled veterans of the Second World War, a conclusion that could readily be extended to other disability groups in the Soviet Union. At the same time, a key function of the state's strategy of differentiation and classification was the very grouping of persons with similar types and degrees of disabilities in order to provide them with specific services, including housing.
Separate but (Un)equal: Institutionalization and Education
In the Soviet Union, it was common for citizens with disabilities to be placed in specialized residence institutions called doma-internaty, or "home-internaty."26 There were four main types of internaty: those for the elderly and disabled; for people with disabilities only; for "veterans of work" with especially long and revered work histories; and for persons diagnosed with psycho-neurological problems. Additionally, internaty for children with disabilities served such children until age 16-18, at which time usually they were transferred to internaty for adults. In 1979, there were 1,500 internaty for the elderly and disabled in the Soviet Union, and a network of internaty stretched across the vast territory of the USSR. According to the available Soviet statistics, in 1979 internaty accommodated 360,000 persons, but it is not known how many residents were elderly, disabled, or both (Madison 1989:180). The stated goals of the internaty were as follows: material and practical support of residents and the provision of good, "home-like" living conditions; organized care for residents, including medical care; and measures to ensure the social and vocational rehabilitation of people with disabilities (Iarskaia-Smirnova and Romanov 2002:325). In general, internaty were total institutions, functioning as "medico-social institutions intended for permanent residence of the elderly and disabled who require constant practical and medical assistance" (Iarskaia-Smirnova and Romanov 2002:325).27
Although alternative strategies for organizing rehabilitation and delivering needed services were explored in the Soviet Union, the "home-internat" model became the standard. As detailed above, internaty for disabled veterans and the elderly were established beginning in the 1920s and continued throughout the post-Second World War years. In the context of the Cold War, in the late 1950s and 1960s, the system of internaty to house children and adults with disabilities grew exponentially. Ol'ga Shek (2005:383) attributes this push for institutionalization to two main factors: a perceived need to enhance the perception of the Soviet state as a beneficent force that provided for the basic needs of all its citizens; and the desire to "remove" from view those elements that blemished the carefully-constructed picture of the Soviet Union as a "healthy nation" free from social problems.
Care in internaty was framed as a "right" accorded to vulnerable citizens by the beneficent Soviet state, and the collective care of people with disabilities in institutions designed especially for such purpose was considered optimal for their quality of life. At the same time, placement in internaty could also be a punitive measure. For example, the elderly or disabled who came under suspicion of the Soviet administration for "disrupting social norms" (e.g. begging or "wandering about" without permanent residence) were often forcibly placed in internaty (Iarskaia-Smirnova and Romanov 2002:325). Stephen Dunn and Ethel Dunn (1989:209) note that medical treatment services often were hard to access for persons who refused to be permanently institutionalized.
The Soviet system of institutionalization of citizens with disabilities was closely linked to the philosophy and practice of special education. If the education of children with disabilities was the purview of social elites in the 19th Century Russian Empire, approaches to special education began to change in the early 1900s, when specialized medico-pedagogical approaches to educating exceptional children emerged from the work of intellectuals such as V.P. Kashchenko, I.V. Maliarevskii, A.S. Griboedov, and G.I. Rossolimo. Special education during this period was based on the philosophy of "curative pedagogy" (lechebnaia pedagogika), which received much inspiration from the specifically medicalized form of special education (Heilpädagogik) developed in the later half of the 19th century in Germany (McCagg 1989:46-49). However, Iarskaia-Smirnova and Romanov (2002:370) argue that the curative pedagogy of Kashchenko and his colleagues privileged social and behavioral aspects of development over the medicalized interventions and diagnoses that dominated the German variant.
After the Bolshevik Revolution and the founding of the Soviet Union, where private and religious-based philanthropy were, with a few exceptions during wartime and other crises, forbidden, special education became the purview of the state. Although an outline for special education was developed in 1914, the infrastructure for developing this system was put in place only in the 1930s (Iarskaia-Smirnova and Romanov 2002:369). It was not until the 1960s that adequate state financing was provided for residential school-internaty for children with disabilities, which until then had been in the hands of largely uninterested local administrations. The Soviet system of general education was highly standardized via curricula that did not take into account the needs of exceptional children, whose instruction was undertaken separately from other children.
Special education was formulated according to the science of "defectology," which included elements of disciplines such as pedagogy, psychology, and medicine. Defectology was based on the influential work of L.S. Vygotsky and his concept of the "deficient child" (Iarskaia-Smirnova and Romanov 2007:91), but Vygotsky's ideas, which privileged an integrated and comprehensive approach to physiological, psychological, and social aspects of children's education, were reduced in Soviet defectology to the medical and psychological. Therefore, the more humanistic "curative pedagogy" of earlier years was replaced by the medicalized defectology, a system notable for the high degree of differentiation, categorization, and stratification. As Kate Thomson (2002:35) describes, "Categorization of children was rooted in an essentially clinical and pathological understanding of the nature of learning difficulties." This reductionism "facilitated the medicalization of special education discourse, turning it into a pedagogy for defective, anomalous, sick children in need of correction" (Iarskaia-Smirnova and Romanov 2002:371).
As described by Andrew Sutton (1988), who evaluated the Soviet system of special education rather positively during the late 1980s, in the Soviet Union special schools were provided for the deaf, the hard-of-hearing, the blind, those with visual problems, and the motor impaired, as well as children with scoliosis, heart conditions and rheumatism, a range of cognitive disabilities, and others. Sutton notes that "the system provides clear limits for what is possible in curricular terms," and that some categories of children (the severely mentally handicapped, children with multiple disabilities, children with severe problems of movement or continence, and children with diagnoses such as autism) who, in the West would be offered special education programs, were considered "uneducable" and thus were excluded from the Soviet special education system (1988:78-79).28 As Sutton (1988:79) writes:
Thus the social role of the Minpros [Ministry of Education] special-education system is not to provide education for all, however handicapped, adapted to the needs of the individual child, however deviant or limited. Rather it is to provide a common training, education and socialization to everyone in the younger generation who could conceivably benefit, leaving the residuum to be catered for elsewhere.
This "elsewhere" might be an institution where only basic, practical instruction was offered, or, more rarely, the child could be left in the care of the family without any state-provided special education.
There was intense pressure from the state, and particularly from the medical establishment, for parents of children with disabilities to place them in internaty, most of which offered residential special education programs. During interviews with parents of children with disabilities in post-Soviet Ukraine, I was frequently told of their struggles to resist institutionalization of their children during the Soviet period (and after). In the absence of available resources to assist parents in caring for their children in the home setting, many parents indeed were compelled to place these children in internaty. Those who refused were criticized, since the choice to raise an exceptional child in the home was seen by many medical professionals, social workers, and the general public as irresponsible and unwise. As Mykola Swarnyk (2005:1), a founder of the parents' movement in Ukraine, described,
We all had rights on paper, but the [Soviet] state, where everyone was happy and was joyfully building communism, did not foresee special needs. Therefore, for these children [with disabilities] they built internaty outside of towns, which many consider a perfectly normal, rational way to deal with the problem of disability.
The conditions in internaty for children with disabilities varied dramatically, and persons who lived in Soviet internaty report some positive assessments of their experience but also voice pointed critiques. There were some exemplary internaty with exceptional staff whose achievements in educating young people with disabilities were truly remarkable, given the limitations of the Soviet model. One such institution was the Tsiurupyns'kyi school-internat in Khersons'ka oblast of the Ukrainian SSR. Ihor Rasiuk, a man with cerebral palsy who lived at Tsiurupyns'kyi beginning in the mid-1970s, provides valuable first-hand accounts of life there (Rasiuk 2002a, 2002b).
The Tsiurupyns'kyi school-internat was founded in 1968, and housed 200 children with group I disability status. As was typical, the internat was built "in the middle of a desert, far from human eyes," but within ten years the staff and students had turned the grounds into a green space (Rasiuk 2002a:24). Rasiuk praises the dedication of the home's teaching staff, and notes that Tsiurupyns'kyi was unique for the emphasis placed on educating children with disabilities, rather than "treating" or "healing" them. Despite a low teacher student ratio (just two teachers worked with each group of 20-25 students), a surprisingly high number of Tsiurupyns'kyi's students enrolled in institutions of higher education — around sixty percent in the 1980s. This is remarkable given that, as Rasiuk (2002a:24) notes, in the USSR there was a secret directive of the Ministry of Education that blocked persons with significant disabilities (i.e. members of group I disability category) from higher education. Rasiuk himself undertook graduate study in Ukrainian literature at the Kyiv National University of Shevchenko. Thus, in many ways, the Tsiurupyns'kyi children's home may be an example of the internat system working well to provide children with disabilities a quality education.
At the same time, Rasiuk is frank about the internat's shortcomings, especially its remote location, which isolated the students and precluded their interaction with "the rest of the world." He writes that, "In those [Soviet] times the state tried to hide invalids. When children were taken beyond the confines of the [internat] gates, people wrote angry letters to the director" (Rasiuk 2002b:23). Aware of this problem, the teachers invited guests, took the children on field trips, and sought other ways to facilitate social interaction. Nevertheless, Rasiuk admits, the social isolation of children with disabilities, even in excellent institutions such as the Tsiurupyns'kyi school-internat, was not the ideal solution. In general, parents rarely visited their children in internaty, and for many students family relations became strained or severed. This made it unlikely that children in internaty would ever leave the system. Rasiuk states, "Understand me, I am against internaty for invalids (it is a type of reservation); I would prefer that invalids study and live amongst other people. But today's reality is such that society is not ready to accept invalids, so for now we still need school-internaty" (Rasiuk 2002a:26).
In Rasiuk's writings, his relatively positive assessment of the Tsiurupyns'kyi school-internat diverges markedly from his experiences at the "home-internat for the elderly and disabled" to which he was transferred at the age of 18. In his autobiographical story "Zalyshytysia liudynoiu" (Ukr. Remaining human), Rasiuk (2002c) details his first few days at an institution on the edge of Kyiv. Referring to himself as "Iunak," or "the Youth," Rasiuk describes how he was moved to the internat after being refused entrance into a regular school. Upon arrival, he was not welcomed by staff, who immediately ushered him into "quarantine," a "room with tiled walls, like a morgue…a horrific room devoid of hope" (Rasiuk 2002c:25). Rasiuk goes on to describe the overcrowded, chaotic conditions of the internat, where the elderly and people with physical and mental disabilities slept in corridors, and sounds of screaming and "barking" emanated from the rooms. Residents lived two to four to a room, with just two aides (Ukr. sanitarky) per 32 residents. This was a place, he concludes, not for "living," but for "existing" (Rasiuk 2002c:26).29
Ruben Gallego articulates a more critical judgment of Soviet internaty in his remarkable semi-autobiographical book, White on Black (2006).30 Gallego, who was born with cerebral palsy and grew up in various internaty in the RSFSR beginning in the late 1960s, describes the inhumane treatment he and other residents endured — squalid conditions, inadequate food, and indifferent "nannies" (attendants). These are hardly softened by his memories of warm holidays, and some kind, caring attendants, many of them religious "believers." Like Rasiuk, Gallego emphasizes the dramatic contrast between many school-internaty for children, and the dreaded "old folks' homes," where "everyone who couldn't walk ended up…not for any particular reason, just because" (2006:120).
The mixed assessments of Soviet internaty that Rasiuk and Gallego provide underline shortcomings in the Soviet system of institutionalization — the quality of internaty varied widely, and appropriate provisions were not made for long-term care of youth and young adults with disabilities who had been educated and brought up in school-internaty. Furthermore, the behemoth internat system, which was dependent on the ever-strapped state budget, has proven unable to withstand the economic crises that rocked the former Soviet Union in the 1990s. Tragically, during 1995-1996, 38 children died of hunger and cold at the very "exemplary" Tsiurupyns'kyi school-internat under discussion (Rasiuk 2002b:24). If, as Rasiuk indicates, Tsiurupyns'kyi was a model school-internat, the fate of other such institutions has undoubtedly been even worse.
Overall, then, the internat system produced mixed effects. In the context of the Soviet system of social policy, medicine, and housing, for some the internat arrangement was preferable to the main alternative — life in a family but with few or no community or state resources to draw on. In internaty, citizens with disabilities were provided with at least basic material and social protection, albeit on the state's terms (Shek 2005:393). Still, residents of internaty were made to feel guilty for surviving at the expense of the state, and were taught to be grateful for the state's care. When Gallego asked one nanny, for example, why he should study, if as an "invalid" he was presumed to be without a future (Gallego expected to be left to die as a teen in an "old folks' home") she replied, "You have to study because you're being fed for free" (Gallego 2006:35).
Former internat residents speak about some of the advantages of living in "invalids' collectives," where a certain disability culture could flourish, within measure. And it is important to note that the Soviet-era disability rights activism that emerged beginning in the 1960s came out of internaty (see Indolev 1998). This is evidence that, despite their many shortcomings, the internaty had a beneficial if unintended side effect: the close proximity of people with similar experiences, concerns, and grievances allowed a disability rights consciousness to foment. At the same time, however, the tight state control on internaty meant that the rights movements were also squelched there, because the state could easily move people from internat to internat to disrupt social networks (see the case of Gennadi Gus'kov, below). In the end, the social isolation of people with disabilities allowed other members of Soviet society to forget about them, and "facilitated the production of their second-class citizenship" (Shek 2005:375).
In the Soviet Union, persons with disabilities who sought to further their education beyond the secondary level were compelled either to study in specialized (sometimes residential) vocational or technical schools, or to enroll in training courses designed especially for people with disabilities. And, as noted above, a secret directive of the Ministry of Education prohibited those classified as "group I invalids" from pursuing a university education (Rasiuk 2002a:24). Presumably, the rationale behind this restriction was that persons with severe disabilities would be unlikely to secure work requiring an advanced degree — manual, unskilled labor was deemed more "appropriate" for persons with disabilities — and thus should be prevented from draining resources from the state-funded system of university education. Obviously, this discriminatory system placed citizens with disabilities at a disadvantage socially and economically, creating a permanent underclass of "invalids." During a 2006 interview, Yaroslav Hrybalskyy, a wheelchair user and disability rights activist in the western Ukrainian city of L'viv, reflected back on the 1970s and 1980s: "There were very few intellectuals among invalids. We did a survey, and no one on our list was doing intellectual work — they were all blue-collar workers, without any meaningful education."
Through great effort and social support, some individuals were able to obtain a higher education at university, but such cases were rare. Oleg Poloziuk, for example, became a tetraplegic after a childhood diving accident. He studied law in the Ukrainian SSR the late 1980s and writes of this experience: "On the basis of personal experience I can say that only the psychological, material, and physical support of my family members allowed me to receive an education in the law faculty of Kyiv National University of Shevchenko, where the law building has four floors without an elevator" (Poloziuk 2005:9). Poloziuk relied primarily on correspondence courses to complete his degree, since he could not access lecture rooms in a wheelchair. Others, I learned in personal interviews, skirted the de facto ban on higher education by arranging to have their disability status "reduced" to group II or III. This made it easier to enter university studies, but with reduced disability benefits, which caused increased financial hardship.
Rehabilitation and Work
During the years of the New Economic Policy (NEP) (1921-1929), when some restrictions on private enterprise were relaxed, disability communities formed several large collectives as a grassroots strategy for economic empowerment. The most well-known, powerful, and long-lasting of these were the All-Russian Association of the Blind (VOS), the All-Russian Organization for the Deaf (VOG), and the All-Russian Production-Consumption Union of Invalids (VIKO, also called the Promkooperatsiia), founded in 1925, 1926, and 1921, respectively. Through these societies, which had analogues in other Soviet republics, the labor of people with disabilities was consolidated in segregated work collectives called "artels" or "RabFaks" ("work faculties"), which functioned as "enclosed factory-educational facilities" where people who were blind, deaf, or had other disabilities received training and worked (Burch 2000:396). Promoted as an "oasis" to protect people with disabilities from cruelty and prejudice, the artel functioned as a sort of closed mini-city with its own infrastructure, enterprises, and culture. In the VIKO cooperatives, workers produced clothing and other goods and provided services such as shoe repair, hair styling, photography services, and others. By the end of the 1950s, in the Soviet Union there were nearly 220,000 persons working in over 4,000 artels for people with disabilities (Indolev 1998:22-26).
Typically, the state administration directed its economic and administrative support to organizations such as artels, and did not contribute resources to more open and integrative mechanisms of vocational rehabilitation and employment. Although state enterprises were, by law, required to reserve two percent of work places for workers with disabilities, the quota was not enforced. VOS and VOG were regulated by the Ministry of Social Services, and thus were subject to Party control; likewise, VIKO gradually came increasingly under the authority of the Russian Soviet of Ministers. Various industrial ministries appropriated the VIKO enterprises during 1956-1960, and the organization was liquidated. The reasons for the take-over are still unclear, but White (1999:45) notes that, "It was claimed that the enterprises were economically inefficient and that the state could deal with all disabled people's problems." It is possible that VIKO was perceived as a threat on several fronts: workers with disabilities were empowering themselves economically, independent from the state; work cooperatives could contribute to collective consciousness and protest; and the VIKO enterprises put people with disabilities in contact with the "healthy" population. In any case, in the Soviet Union after 1960 only the Organizations of the Blind and the Deaf had large artels.
Although the segregation of workers with disabilities from the rest of the work force was a problematic "solution" to unemployment, the benefits should not be overlooked. In a context where integrated employment was considered impossible, and later (1968, see below) was even forbidden, artels provided people with disabilities the opportunity to make a living and take part in a peer collective. Susan Burch (2000) for example, has detailed the relative advantages the VOG imparted to deaf and hard-of-hearing Russians. Thanks to the VOG, which enjoyed the approval of Party functionaries, deaf people were able to nurture a deaf culture and improve the social standing of people with disabilities as highly productive workers.
The VOS and VOG were allowed to carry on, but work opportunities for people with disabilities other than deafness or blindness enjoyed only limited work opportunities after 1960. Given the functional approach to disability in the Soviet Union, rehabilitation methods tended to focus on issues of vocational retraining, work, and social contribution.31 Overall, those perceived as able to work were not trained with an eye to their integration into the general work force, and manual, unskilled labor was the norm. Sometimes, people with disabilities were trained for unskilled piecework at home. As Hrybalskyy described:
Usually, if [people with disabilities] worked at all, they worked at home, making handicrafts (Ukr. kustarna robota), for example. I worked for many years at home myself, making nets and belts. I knew only a few people — one in Georgia, and a couple of guys in Dnipropetrovs'k — who were also wheelchair users and worked regular jobs, outside the home.32
People with disabilities who lived in institutions may have been trained and provided with work, depending on the "profile" of the institution and the individual's disability status. In some cases, a patronage-like relationship existed between internaty for the elderly and disabled and various state enterprises. Soviet work collectives, required by the Law on State Enterprises to contribute to solving social problems, often participated in building internaty; they also provided these institutions with assistance in the form of tangible materials and financing. In turn, residents of internaty were provided "opportunities" and special conditions in which to work for the enterprises. Work for residents of internaty often was sporadic, and at times coercive. In her analysis of written correspondence between internat residents from the 1960s to the 1980s, Anne White (1999:37) reports that, "Directors seem sometimes to have regarded residents as slave labour…and tried 'come what may to squeeze the last drops of their capacity to labour out of disabled people.'" If, until 1968 internat residents were allowed to pursue work opportunities outside the institution, this right was rescinded that year, a decision apparently made on the basis of "administrative convenience" (White 1999:37). Paradoxically, although vocational retraining and employment for "invalids" was a cornerstone of Soviet disability discourse, in reality the majority of persons with disabilities were unemployed, particularly those in groups I and II. By 1988, about thirty percent of people with disabilities were employed. Most of the employed were "group III invalids," and only approximately one in thirty-five "group I invalids" had jobs (White 1999:35).
Rumblings of Dissent: Soviet-Era Rights Movements
After the state appropriated the artels in the 1950s, some individuals and nascent groups began to protest Soviet policies towards people with disabilities. As Lev Indolev told me, "There were a few groups, rather informal, self-made groups, for the most part led by a group of enthusiasts, or even one activist working alone. To varying degrees they were either loyal to the authorities, or aligned themselves with the dissident movements."33 These activists tended to be Russians who were mobility disabled and had grown up in state institutions.
Throughout the 1960s, and more actively in the 1970s, these individuals agitated for more rights for persons with disabilities, particularly in the areas of education, housing, and work. Some of the early Soviet disability rights activists sought to forward their agendas within the framework of the state's focus on labor issues. Gennadii Gus'kov, for example, was a polio survivor who sought in the 1960s and 1970s to found an All-Union Invalids' Society. Working from the internat where he resided in Voronezh (Russian SSR), Gus'kov established a workshop where, he hoped, citizens with profound physical disabilities could earn a living for themselves and improve their material and cultural situation. Initially, Gus'kov had some success working with state authorities, but after he began to associate with notorious dissidents, he was put under constant surveillance and was forcibly moved from internat to internat as the state sought to curb his influence.34
Although much of the dissident activity took place in Moscow and other cities in the RSFSR, rumblings of dissatisfaction were audible in other areas of the Soviet Union. Two of the most important sanatoriums for the mobility disabled in the Soviet Union were located in the Ukrainian SSR — in Saki (the Crimea) and Slavinsk (Donets'k oblast') — and these were major sites of networking and exchange of information and ideas between persons taking advantage of "health trips" provided by the Soviet state. Yaroslav Hrybalskyy recalled the following incident in Saki in the 1970s:
The dissident movement played a role in disability issues as well. I remember an incident from the 1970s — I went to the Crimea regularly, to Saki, which was practically the only city where you could get around freely in a wheelchair, so Saki was like an entire city of invalids. Just then the government was discussing the new Brezhnev Constitution, and suddenly all the [wheelchair] ramps (Ukr. pandusy) were removed. We gathered at the sanitorium and wrote a letter to General Secretary Leonid Brezhnev: "Dear Leonid Il'ich, please make an exception in this city, where many invalids visit," and so on…And later, everyone who signed the letter was hounded by the KGB. They questioned us, did searches, asked who the initiator was. So I'll tell you, in the fight for disability rights, for human rights, there were no political motives, no one was seeking a political coup, they just wanted favorable conditions — for example so invalids could visit some small city in the Soviet Union [like Saki]. But it was interpreted as some kind of insubordination and those who brought up these issues were treated like dissidents. So extreme measures were taken against them — they were shut up in special internaty so their protests would go no further.35
Concerted attempts to mobilize people with disabilities to political action were promptly squelched. Iurii Kiselev, for example, founded in 1978 the Action Group to Defend the Rights of people with disabilities in the USSR (see Raymond 1989; White 1999). The group published a samizdat publication called the Information Bulletin, which criticized Soviet disability policy, provided readers with needed information, and related personal accounts of abuse. Kiselev was committed to working in opposition to the Soviet state, and he allied himself with prominent dissidents such as Andrei Sakharov and members of the Moscow Helsinki Group, a risky strategy that caused other activists to distance themselves from him. However, he did have some allies, and the Action Group announced itself to the world by appealing to several foreign governments and advocacy organizations.
The group's leadership was hounded by the KGB, especially Valerii Fefelov and his wife Ol'ga Zaitseva. Associating with the Action Group's leaders subjected others to similar surveillance. One of my interviewees in Kyiv, Ukraine, Valentina (a pseudonym), remembered meeting Fefelov in the 1970s when he traveled to the Ukrainian Soviet Republic. Authorities learned of their meeting, Valentina's apartment was searched, and she was warned by KGB agents to cut off all ties with Fefelov and his colleagues. She did so, and carefully hid evidence of their meeting, including several photographs Fefelov had given her of fellow disability rights activists. After being harassed continuously for their activities and threatened with arrest and trial, Fefelev and Zaitseva fled the Soviet Union for West Germany in 1982. With their departure, the Action Group's activities all but ground to a halt.
In this context, some would-be activists sought to improve their lives in ways that state authorities would not perceive as threatening. One such avenue was disability sports. Developing disability sports was in line with the socialist state's focus on "physical culture" and the perceived benefits of sports for health and discipline among the citizenry (Brownell 1995). Also, basing one's disability-related activities on sports was one of the only ways to officially register a civic organization with state authorities (Indolev 1998:97).
Other organizations that were tolerated beginning in the 1970s included several networking-oriented groups. Examples are organizations founded in the Russian SSR such as Prometheus (Prometei) and Korchaginets. The major goals of these groups were to facilitate written correspondence between people with disabilities, many of whom lived in isolation; to publish informational materials (bulletins, journals); and to put pressure on the state to provide support for specific disabled persons in need. Some of these groups had branches throughout the Soviet republics, and thus they engendered a sense of common experience among members. However, the organizations did not raise controversial issues or stand in opposition to the state's disability policy, and publications and even content of personal letters were self-censored and void of potentially objectionable political content.
Gus'kov, Kiselev, and other disability rights activists had launched their activities with the goal of founding a united All-Russian Organization for Invalids (VOI) similar to those that had long existed for certain categories of disabled — the deaf and the blind. This goal was realized only in 1988, made possible by Gorbachev's policies of reform. By autumn 1991, around one quarter of all people registered as disabled in Russia had joined VOI, which had 1,100,000 members (White 1999:13). Two parallel but contradictory processes shaped the VOI's formation. On the one hand, the movement came from the grassroots, as people with disabilities created their own organizations and formulated goals for action and revising legislation. On the other hand, it also was a top-down affair, since the Cabinet of Ministers of the Russian SSR coordinated the actual formation of the VOI, and the group's leadership included Party functionaries. In its early years the main achievements of the VOI were the adoption of far-reaching disability-related legislation, which provided for improved "social protection" and increases in pensions, and the return of more than 300 state enterprises from the state to work collectives of people with disabilities.
This overview of disability policies and experiences in the Soviet Union has revealed several important trends that shaped the lives of people living with disabilities in Soviet Russia, Ukraine, and other Soviet republics. The state's two-pronged policy of care and control was applied unevenly across space and time, and produced myriad contradictions. People with disabilities sometimes suffered from too little state attention and intervention; they also suffered from too much. The material presented here has illustrated many of the harsh realities of Soviet disability policy, which produced constraints on people's lives and denied many Soviet citizens a common humanity. At the same time, in light of the numerous challenges that market reforms and the collapse and revamping of social policy pose for people with disabilities in the former Soviet Union today, it is difficult to discount some of the relative benefits of the former system. Despite the many injustices, the Soviet state did provide some citizens with disabilities with the basic necessities for life, albeit in exchange for political complacency.
At the same time, the many disconnects between state rhetoric and state action is striking. I have considered here many examples of how Soviet official discourse and policy vis-à-vis disability often held little relation to on-the-ground, lived realities. This gap is indicative of the Soviet culture of pokazukha, or "window-dressing;" in the case of disability policy, representatives of the state made many declarations, trotted out a few "exemplary institutions," and groomed a handful of "heroes" and "shining examples" of the state's beneficence toward "invalids." But the high rates of institutionalization, the relative lack of education and employment opportunities, and the low economic status of most persons with disabilities — problems that only came to light after Gorbachev's policies of glasnost (openness) and perestroika (restructuring) — speak volumes about the state's inability or unwillingness to ensure equal rights to people with disabilities.
The Soviet state's continuous emphasis on work capacity as the key disability criterion, and on labor as a primary mechanism of rehabilitation and empowerment, is particularly interesting. In the early post-Second World War years, with millions of Soviet citizens killed in the war, returning people with disabilities to the work force was seen as necessary for the Soviet state's huge push to modernize and industrialize. This often was accomplished coercively, by withholding recognition of individuals' disability status and refusing adequate social support. When, however, through groups such as the VIKO, people with disabilities actively sought to affirm and assert the labor potential of the disabled population, such initiatives were squelched. Equally contradictory, although official state discourse touted the benefits and necessity of labor for citizens with disabilities, at no point did the state take adequate measures to empower people with disabilities to "compete" with other workers. Education was withheld, vocational training was often lackluster, and quotas for hiring workers with disabilities in state enterprises were not enforced.
All this is evidence of how, in the Soviet system, the needs, rights, and potential avenues of empowerment for people with disabilities were defined exclusively in the state's terms. The state defined what "social contributions" citizens with disabilities would be allowed to make, set the parameters of education and work possibilities for this population, and closely regulated the development of disability consciousness. The extent to which people with disabilities were kept unaware of developments in the worldwide disability movement, and of human rights struggles in other countries, is striking. In the Soviet Union, people with disabilities were considered subjects to be cared for and controlled, not active agents or stakeholders. Even grassroots self-help initiatives that likely would have benefited the state economically and administratively — the organization of work collectives, for example — usually were curtailed by the state. Overall, Soviet disability policy was a rigid system quite incapable of adapting to changing circumstances.
Even so, as I have shown here, throughout the 20th century people with disabilities were — to the extent that it was possible in the confines of the Soviet state — actively challenging the system and chinking away at injustices. Throughout the 1960s and 1970s in particular, small steps were made that paved the way for the establishment of a VOI and thousands of smaller disability rights organizations once restrictions were relaxed during perestroika beginning in the mid-1980s. Because they had been so insulated, it was not until the late 1980s and early 1990s that disability rights activists in the (former) Soviet Union were able to tap into international advocacy discourse and rights movements. The Soviet chapter in the new disability history has not quite concluded, since institutional structures, discourses and attitudes, and other legacies of the past continue to shape disability policies and experiences in the region today.
* I am grateful to those friends and colleagues in Russia and Ukraine who agreed to be interviewed for this article, especially Yaroslav Hrybalskyy, Lev Indolev, Oleg Poloziuk, and "Valentina." For their generous comments on previous drafts I thank Brenda Brueggemann, Susan Burch, Lev Indolev, and an anonymous reviewer for DSQ. An earlier version of this paper was presented at the University of North Carolina at Chapel Hill School of Public Health's speaker series in Health and Human Rights, where I received valuable feedback.
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People with disabilities were usually called invalidy (Rus. and Ukr. "invalids") in the Soviet Union, and this terminology is still common in present-day Ukraine and Russia. Some disability rights activists advocate that the Russian and Ukrainian terms for "persons with limited physical capabilities" or "persons with special needs" be used. This terminology gradually is making its way into legislation, official discussions of disability, and popular media accounts in the region.
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Major Russian language sources include Fefelov (1986), Iarskaia-Smirnova and Romanov (2002), and Indolev (1998, 2001). English-language works include Burch (2000), Fieseler (2006), Gitlits (1984), Gallego (2006), Iarskaia-Smirnova (2001), Kikkas (2001), McCagg and Siegelbaum (1989), Riordan (1988, 1990), White (1999), and others.
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This population is particularly visible within post-Soviet Ukraine's nascent disability rights movement. This is due to the efforts of key political and civil society actors, and also because this population has been targeted by some important international interventions in recent years. It is estimated that around 32,000 persons in Ukraine are living with spinal injuries, but no official statistical information has been gathered on this population.
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Important research has been carried out on other facets of disabilities experience in the region; for example, Susan Burch (2000) examines deaf culture in the Soviet Union, and Adriana Petryna (2002) has focused on disability related to the 1986 Chernobyl nuclear disaster. For an early discussion of Soviet approaches to treatment and care for persons with mental disabilities, see Field (1960).
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For example, none of the most thorough and respected historical accounts of Ukrainian traditional culture and folklore (Naulko 1993, Voropai 1993,Vovk 1995) mention persons with disabilities. This indicates either a broad disregard for questions of disability in the Ukrainian ethnographic tradition, or is evidence of the social integration of disabled persons in their local communities.
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I use the Library of Congress system for transliteration. Here, "Ukr." designates transliterations from the Ukrainian, and "Rus." indicates transliterations from the Russian. No designation indicates that the transliteration is from the Russian. Unless otherwise noted, all translations from the Russian and Ukrainian are my own.
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See Burch (2000) for further details on education of the deaf in pre-revolutionary and Soviet Russia.
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Pryzhov was an independent scholar, having been dismissed from Moscow University in 1850. The life of Moscow's impoverished and marginalized citizens was not considered a worthy topic of study, and Pryzhov, who was a minor civil servant, was unable to make a living with his writing. He published mainly in newspapers, and for his manuscript 26 Moscow Prophets, God's Fools, and Fools, and Other Works on Russian History and Ethnography (1996) he did not even receive an honorarium. The impoverished and disillusioned Pryzhov, who joined the secret revolutionary anarchist group Narodnaia Rasprava (People's Reprisal) founded by Sergei Nechayev, was involved in the murder of the student Ivanov, an incident that was later fictionalized by Fyodor Dostoyevsky in his book The Possessed. Pryzhov was sentenced to twelve years hard labor and eternal exile in Siberia, where he died in 1885 (Lur'e 1996).
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Klikushi were women believed to be "possessed" by the devil or evil forces, who had the capability of bringing (or "calling," from the verb klikat') misfortune upon others.
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Indeed, Pryzhov's "Nishchie na Sviatoi Rusi," originally published in 1862, was intended as an expose of what he considered the deceitful nature of most begging; he sought to deter his fellow Muscovites from offering the "casual dole" (Lindenmeyr 1996:137).
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Traveling was not necessarily a solitary undertaking. For example, in the late 1850s or early 1860s (no date is given), Pryzhov himself participated in a pilgrimage from Moscow to Kyiv, organized and financed by a nun named Mother Matrena Makarevna. The goal of the pilgrimage is not clear, but Pryzhov reports somewhat cynically that, "for the sake of a livelier trip," Makarevna took with her "an entire group of various iurodivye and strange men and women (stranniki and strannitsi), people from the poorhouse (bogadelki) and beggars (prizhivalki)." According to Pryzhov, Makarevna began with an entourage of one hundred, but by the time she reached Kyiv three hundred persons accompanied her. The pilgrims were not allowed into Kyiv proper, and instead set up camp in a forest outside the city limits. Pryzhov does not detail further what happened to Makarevna and her companions, but he does indicate that the group collected donations from bystanders during their journey from Moscow to Kyiv.
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Ivan Iakovlevich performed services of prediction via written correspondence with some clients. Some of these exchanges are recorded in Pryzhov (1996:36-39).
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One notable personage is Vasilii Eroshenko, a blind musician, writer, and devotee of the Esperanto movement who traveled and taught widely in Europe and Asia. Born in 1890 in the village of Obukhovka (Kurskaia Gubernaia), Eroshenko entered a Moscow school for the blind at the age of nine. With the support of Anna Sharapova, the sister of writer Lev Tolstoy, Eroshenko enrolled in the Royal London Academy for the Blind, and later studied in Tokyo. After living and working in Thailand (Siam), India, and Burma, Eroshenko, having learned of the Bolshevik revolution, set off for Russia but was arrested as a "Bolshevik agent" and subsequently fled to China. Eroshenko later founded a school for blind children in Turkmenistan; he died in Obukhovka in 1952 (Katrychenko 2005). Eroshenko's writings and biographical details are available at http://eroshenko.1gb.ru/, accessed November 7, 2008.
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The English translation is Cassandra Hartblay's (2006:22).
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Article 18 of the Law of the USSR "On state pensions," from 14 July, 1956.
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This could be called a "social model" of disability, but a very different one than that advocated by many scholars and disability rights activists in the West (Oliver 1990, Tregaskis 2002).
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There was a pre-Soviet precedent here, since the first attempt to address the concerns of workers facing disability was initiated in the Russian Empire in 1903 with the passage of a law introducing workplace insurance for those injured on the job (Iarskaia-Smirnova and Romanov 2002:322).
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The many problems that plagued early Soviet efforts in the Samara region (RSFSR) to provide social assistance to people with disabilities, particularly disabled veterans, are described in Shilova (2005).
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Indeed, the Comprehensive Ukrainian-English Dictionary (Popov and Balla 2005:327) defines nepratsezdatnist' as "disablement, disability, incapacity to work."
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In Saratov oblast' in 1945, for example, there were more than 30,000 "invalids" of the Second World War registered. Of these, only around 1,500 received vocational training (Tchueva 2008:105).
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These resolutions are discussed by Ekaterina Tchueva (2008:97). The 1944 (January 31) resolution was Soviet of the People's Commissariat of the USSR No. 101 "On affirming the Instructions on measures of assigning and paying the disability pension to veterans of private, sergeant, and sergeant-major ranks."
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The disability benefits offered to war veterans is detailed further in Madison (1989:185-188).
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For a similarly insightful analysis of disability in German cultural history, with a particular focus on wartime, see Carol Poore's (2007) remarkable book, Disability in Twentieth-Century German Culture.
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In Soviet discourse, the "social parasite" or tuneiadets, was one who refused to do socially-useful labor, and lived off the work of others.
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Differentiation between "invalids" in the early Soviet era was also class-based. As noted by Shek (2005:381), "class enemies" (disabled White Army veterans, kulaks (former landowners), former factory owners, tsarist officers, and others) were excluded from programs to educate and provide employment for "invalids" in the 1930s.
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Bernice Madison provides case studies of several internaty based on her research in the RSFSR and the Uzbek Republic in the early 1960s (1968:243-250). Although I write about internaty in the past tense here, it must be stressed that the system of internaty for people with disabilities is still intact in postsocialist countries. To varying degrees in different countries, strategies for deinstitutionalizing people with disabilities are being pursued. Such efforts are accelerated somewhat in the new European Union countries like Bulgaria, Romania, Croatia, and Former Yugoslav Republic of Macedonia, but progress is very slow (see Phillips n.d.). For ethnographic studies of present-day internaty in Russia, see Iarskaia-Smirnova and Romanov (2002).
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Anne White (1999:32) correlates Soviet internaty with prisons and labor camps. She writes, "Homes were regarded by many administrators as closed institutions, with frequent searches and confiscations of property, and residents' letters to one another compared the regime to that of a prison." White also notes that at least one internat was sited in a former labor camp.
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See also Grigorenko (1998), Korkunov et al. (1998), Malofeev (1998), and Thomson (2002).
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According to a report of the Ministry of Social Policy of the RSFSR, as of 1977, of the 876 internaty for the elderly and disabled in what today is the Privolzhsky Federal District, 57 had no running water. Worse, only 51 of the 876 internaty had indoor toilets (Shilova 2005:125).
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Ruben David Gonzalez Gallego has a fascinating personal history. As he learned only as a teenager, he is the maternal grandson of Ignacio Gallego, the secretary general of the Spanish Communist Party in the 1960s, whose daughter Aurora (Ruben's mother) was sent by her father to Moscow for "re-education," where she married a Venezuelan student and gave birth to twins. The other baby died, and Ruben was placed in an internat at his grandfather's request; Aurora was told that her son had died. Ruben Gallego's reunion with his mother is chronicled in two documentaries, the Italian film "Siluro rosso: La straordinara storia di Rubén Gallego" (Red Torpedo), and the Russian film, "Pis'mo materi" (Letter to Mother).
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See Shek (2005:388-394) for a description of life in a professional-technical school for persons with disabilities in the RSFSR in the 1960s and 1970s, based on personal interviews and archival research.
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Interview, October 2, 2006, L'viv, Ukraine.
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Interview, October 10, 2006, Moscow, Russia.
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Gus'kov's case is detailed in Indolev (1998) and White (1999).
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Interview, October 2, 2006, L'viv, Ukraine.
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