Abstract

In the wake of COVID-19, non-profit organizations that focus on providing social support services in Russia consolidated their efforts to take proactive measures to change internaty 1, the system of institutions for people with physical, mental, and intellectual disabilities. As a result of advocacy efforts by the non-profit organizations, 26 people from these institutions were evacuated and provided with temporary assisted housing. The decision to act proactively to prevent the spread of the virus among the residents of the institutions is indicative of the galvanized efforts of the non-profit sector to advocate for deinstitutionalization and assisted living. COVID-19 served as an opportunity for the non-profit organizations to emphasize the need for expediting deinstitutionalization reform. Drawing on media sources, the literature on disability and advocacy in Russia, and the conceptual framework of citizenship, this paper will provide an overview of the internaty system, analyze the legislative context of disability and COVID-19, and discuss the context of deinstitutionalization advocacy in Russia.


Introduction

According to WHO (2020), persons with disabilities are at greater risk of developing more severe health conditions and dying from COVID-19. They have greater health requirements and poorer health outcomes. The barriers to accessing healthcare are further exacerbated during the COVID-19 crisis, making timely and appropriate care difficult for persons with disabilities. One of the most serious outcomes of hospitalization of people with disabilities with COVID-19 are the triage protocols, or the guidelines that healthcare professionals rely on to prioritize care for those who have the best chance of recovery (Chen & McNamara, 2020; Kendall et al., 2020; Lebrasseur et al., 2021), effectively designating the lives of people with disabilities as lives not worth living (Akerkar, 2020). The situation of people with disabilities in institutions, psychiatric facilities, and prisons is particularly grave, given the high risk of contamination and the lack of external oversight, aggravated by the use of emergency powers for health reasons (OHCHR, 2020). In response to reports from other countries about the increasing number of COVID-19 cases in institutions, a number of non-profit organizations in Russia launched an initiative they call Evacuation, with the goal of relocating people living in institutions, mostly located on the outskirts of the cities, to apartments in residential apartment blocks in the city 2.

The Center for Advanced Governance (CAG) in Russia identified the key vulnerable groups in the context of COVID-19, including individuals living in closed institutional facilities (Vakhrusheva et al., 2020). The official statistics underreported the number of deaths in psycho-neurological facilities for people with disabilities (from now on institutions, or internaty) (Allenova, 2020). It was also reported that staff in the hospitals are not trained to work with people with intellectual disabilities whose treatment in the event of COVID-19 is jeopardized. New visitation policies in the hospitals restrict the access of relatives and volunteers. In addition to this initiative reflecting a rapid and timely response by the non-profit sector despite its limited scope, it cannot be analyzed separately from the ongoing advocacy in support of deinstitutionalization in Russia in general and in St. Petersburg specifically.

It is estimated that there are about 523 internaty in the country with more than 157,000 people living there (Allenova, 2019). The system of internaty is managed by the Ministry of Social Protection and brings together people who are deprived of their legal capacity due to psychiatric disability and people whose caretakers passed away or can no longer care for them due to lack of support. The residents of the institutions for children with disabilities are transferred to the institutions for adults when they turn 18. People with dementia often end up in the institutions as well (Kuzina, 2020). Russia has engaged in discussions about reforming the system of institutions since 2016 when the Ministry of Labour created a working group composed of government officials, non-profit leaders, and other relevant stakeholders. However, the construction of new internaty has continued. In fact, the public social media campaign stopпни (#stoppni) highlighted the contradictions between the rhetoric of legislators and local examples of new institutions being built (Takie Dela, 2019). The reforms, mostly driven by the non-profit organizations, focus on both the introduction of assisted living alternatives and the overhaul of the guardianship mechanism that currently appoints the institutions and their directors as the sole guardian of an individual living in the institution. The European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment (CPT, 2019) conducted visits to several institutions in Russia in 2019 and concluded that residents tended to be accommodated in larger dormitories, some of which were overcrowded. In all the visited facilities, the delegation received numerous detailed allegations of the use of restraint (mainly strapping patients to beds) and seclusion rooms used for "calming-down" purposes. The volunteers of the Russian non-profit organizations, who are slowly being allowed into institutions to provide additional support to staff and working individually with the residents, have provided detailed and nuanced accounts of their experiences (see, for example, Klepikova, 2018).

The challenges of deeply seated stigmatization and lack of community supports have resulted in a mandate to isolate those with intellectual disabilities in big residential care institutions. The governments' lack of political will to start the reforms contributed to a slow progress of deinstitutionalization. Persons with intellectual disabilities continue to find themselves stuck between the Soviet tradition of exclusion and simulated superficial reforms (Gevorgianiene & Sumskiene, 2017). Additional challenges include a closed system that does not let people other than staff into the institutions; the denial of the right to leave the institution under pretense of protecting the residents; the court system's ability to easily deprive an individual of a legal capacity; institutions' conflict of interests; institutions serving as the only guardian of the residents. The need for reform is recognized among people working in the system, however, as Shek and Pietilä (2016) demonstrate, the tone of the medical professionals' comments on deinstitutionalization turn out to be more negative when they consider such reforms in their concrete social environment.

This article explores how the pandemic galvanized the efforts of the NGOs in convincing the officials that deinstitutionalization is not just a desirable outcome but the only choice for residents of the institutions to survive. The rapid and timely response of the non-profit sector with the Evacuation project is the direct result of ongoing advocacy in support of deinstitutionalization and recent shifts in political orientation of disability NGOs in Russia. The challenges of moving the deinstitutionalization reform forward, coupled with the impact of COVID-19 on people with disabilities, especially people living in the institutions, made Evacuation possible. By managing to relocate a few people from the institutions, and by demonstrating that institutionalization does kill, the NGOs expanded the domain of citizenship for people with disabilities. This article provides an overview of the institution system in Russia, discusses the role of NGOs in driving reform, articulates a need for change to the authorities, and situates Evacuation in the discussion about citizenship of people with disabilities. The article argues that COVID-19 was an impetus for accelerating the discussion about deinstitutionalization and the need to expand the presence of assisted living in Russia.

The contours of citizenship

The framework of citizenship has been used extensively in research on post-Soviet space (Battalova, 2019; Petryna, 2003; Phillips, 2010). For this very reason the traditional definitions of citizenship have been exclusive. The research from outside the Global North redefined the contours of citizenship and shifted the discussion from the traditional scope of rights and responsibilities to the lived citizenship enacted through different manifestations of membership and belonging that would not have been visible if viewed through the lens of human rights. Because citizenship is not only a status but also a practice (Lister, 2003), we can avoid the exclusionary limits of citizenship that characterized most of its history. Citizenship provides the language for bringing forward the injustices and exclusion in specific spaces, for example, through denial of the right to the city and urban spaces for people with disabilities (Bezmez, 2013). Given that most institutions in Russia are located on the outskirts of the cities, the citizenship of their residents is not imagined as part of the city landscape. Rather, it is relegated to the spaces where disability cannot be seen.

Citizenship is typically seen as a legal status in which one either has access to rights or not, yet this approach to citizenship fails to adequately explain the history of rights for people with intellectual disabilities. Human rights approaches might not only be problematic in the context of the former Soviet Union (Katsui, 2014), but also the very settings that can become potential points of exercising these rights are characterized by tremendous power imbalances. For example, Russia's report on the implementation of the UN Convention on the Rights of Persons with Disabilities (UN CRPD) (2015) said

[Russia] acknowledges the equal right of all persons with disabilities to live independently and be included in the community in accordance with article 130 of the Constitution and Federal Act No. 131-FZ of 6 October 2003 on General Principles for Organizing Local Government in the Russian Federation.

In practice, though, segregated facilities, such as internaty, assume a power structure in which staff members have all the decision-making power, while residents exercise little control over their daily lives. Within this context, it may be nearly impossible to assert one's rights. Instead, citizenship of people with intellectual disabilities can be viewed as a relational practice, that is structured by the different types of relationships surrounding people with intellectual disabilities.

When people are embedded in settings that support their inferior position and their exclusion from other settings, including family, educational and vocational opportunities, relational citizenship, when it can be exercised and demonstrated, becomes a way to expand the binary thinking about people with mental and intellectual disabilities. The relational approach argues that rights are practiced in relationship with other people and the practice of rights is socially mediated for all citizens. As well, the lack of material resources could undercut an individual's ability to effectively use her rights. Systems of segregation are costly to maintain, and a tension emerges between the desire to exclude this population and the recognition that they can contribute to their self-care and to society (Carey, 2009). Institutions isolate people with disabilities from the rest of society, which is one reason why many people might not even know that institutions still exist. This isolation is another reason institutions are so dangerous: if people with disabilities are neglected or abused in institutions, there may be no way for others to know about it.

Methods

The analysis is informed by a critical review of the media coverage of psycho-neurological institutions in Russia. Among the media sources that focus on this issue is Kommersant and Takie Dela. Kommersant is one of the top business newspapers that started uncovering the cases of forced abortions and sterilization in institutions (Allenova& Tsvetkova, 2016) and resulted in increased oversight and discussions about reforming the system. Takie Dela is a social media platform embedded in a larger project Nuzhna Pomosch (Help is needed) intended to raise awareness about social problems and support the social services sector in Russia by soliciting donations on its website. Takie Dela is a form of narrative journalism that usually tells a personal story and situates this story in a larger sociopolitical context, specifically highlighting the role of non-profit organization(s) involved in addressing the issue. Both of these media sources regularly cover the efforts around deinstitutionalization and civic society's involvement in these efforts. In addition to media sources, the news sections of NGOs' websites were also reviewed.

The history of institutions in Russia

The system of residential institutions for people with intellectual and developmental disabilities is largely based on institutional care (Shek & Pietilä, 2016). A nationwide system of specialized residential institutions is meant to provide the 'right' environment for impaired individuals in order to ensure their rehabilitation (Fröhlich, 2012). Before the 18th century, the care of children with disabilities was under the purview of the church (Mosin, 2010). The network of psychiatric hospitals started expanding in the 1880s with the development of the field of medicine in provincial parts of Russia. New facilities were built according to the most progressive Western models. The main arguments for constructing hospitals in the country were tranquility, space, and close contact with nature. The work therapy that residents were expected to engage in emphasized the healing powers of cultivating the soil and looking after domestic animals. The work therapy was supposed to imitate a patriarchal and communal life; the image of a "colony," a socialist commune (Sirotkina & Kokorina, 2015).

During Soviet times, the idea of labor having healing potential solidified. The mandate to overcome the intellectual and mental disabilities had to be achieved through labor. The Soviet field of defectology associated labor with promotion of all possible tools that can foster normal social activity (McCagg, 1989). This idea was promoted through differentiation within special education depending on the type of disability, and the idea of internat, a term also used to refer to special schools for children with disabilities, is reflective of the rehabilitative focus of training children to become useful and active participants in society (Knox & Kozulin, 1989). Despite the differences between these types of institutions, the logic of differentiated citizenship, or lack thereof, for people with disabilities was a common thread.

Besides inherited material infrastructures, the segregation and confinement of disabled people in postsocialist countries is also perpetuated by legal capacity provisions. Many 'inmates' are kept in institutions against their will through guardianship arrangements 'whereby a court removes, or restricts, the legal capacity of individuals (so that they are not recognized in law as being able act on their own behalf, such as entering into contracts, getting married, or voting in parliamentary elections) (Mladenov & Petri, 2020). In the context of modern institutions, vocational therapy changed its meaning and mostly refers to unofficial ways the residents are engaged in menial activities inside the institution (Sirotkina & Kokorina, 2015).

Deinstitutionalization advocacy

NGOs have been at the forefront of deinstitutionalization in Russia. Perspektivy, one of the organizations that participated in Evacuation, has been advocating for making the institutions more transparent since 1996.The organization was built by volunteers from Europe who started visiting the institutions in Russia. The current model of the organization continues the tradition of volunteer work. Volunteers provide help to the staff, take people for walks, attend museums, and explain what rights they have. Additionally, they serve as a monitoring mechanism of the closed system.

Simultaneously, Perspektivy's psychologists, educators, and lawyers held seminars for the institutions' employees that introduced a non-medicalized approach to disability with a focus on people with disabilities as recipients of social services rather than patients. The volunteer year program expected volunteers to commit 35 hours a week through out the year to working at a specific institution. The ultimate goal was to train a cohort of young people who will not have any fear of and biases against people with disabilities (Allenova & Tsvetkova, 2016). Notably, the self-advocacy movement in Russia is in its early stages, and most of the discussions around deinstitutionalization are led by the non-disabled NGO professionals.

Perspektivy and other organizations have been conducting regular monitoring visits to the institutions throughout the years. After exposing violations, including sexual assault, at one of the institutions in the Moscow region, the public monitoring group developed a list of recommendations and emphasized that some of these issues are systemic (Allenova & Tsvetkova, 2015) and cannot be resolved by painting the walls inside the facilities or bringing in an educator into an otherwise repressive environment. There has been growing consideration of the impact of "everyday risks" and "everyday disasters" that refer to small-scale shocks and stresses experienced by populations. When aggregated, these risks account for a surprisingly high proportion of losses at a local level (Gibson et al., 2019). The everyday risks that NGOs keep bringing up cumulatively result in institutional violence (Rossiter & Rinaldi, 2018) that has existed for years. Such violence includes all practices of humiliation, degradation, neglect, and abuse inflicted upon institutional residents, regardless of intention or circumstances. The very existence of the institutions predetermined the institutional violence, and COVID-19 has made this violence more visible. Up until the pandemic, the NGOs have been focusing their efforts on advocating for assisted living and implementing changes to the guardianship system as a way to transform the system using the political means available to them.

Assisted living and supported decision-making

As part of the process to revamp the system of institutions for people diagnosed with psycho-neurological disabilities, the advocates and NGOs are pushing for legislative changes that would make the system of assisted living and supported decision-making possible in Russia. The system of assisted living will allow people with disabilities who currently live in institutions to have the option to live in a regular residential unit, usually apartment, with a help of a volunteer. There are a few dozen assisted living projects throughout Russia (Altukhova, 2018; Burakova, 2019). Besides NGOs, parents' associations and churches initiate the projects with support from the local municipality. Supported decision-making challenges the current system that: a) deprives people living in institutions of their legal capacity, denying them the rights to make decisions about their lives; b) transfers that capacity to the institution, or the director of that institution, who becomes the legal guardian of people living in institutions and who has the legal authority to deliver, or not deliver, services within these institutions, who can control the residents' income that mostly comes from the monthly government pensions, etc. What makes this system intrinsically corrupt is the lack of oversight. The institution is the only service provider, its own oversight body and the only guardian of the residents with authority to make any decision on their behalf.

One of the components of deinstitutionalization advocacy is the overhaul of guardianship. Guardianship refers to the legal process where a court appoints someone the power to make all or some decisions for another who has been determined to lack total or partial capacity to make everyday living decisions. Guardianship is closely connected to supported decision-making advanced in international law, such as the UN CRPD as the preferred response when a person's decision-making ability is brought into question due to impairment or disability (Gooding, 2013). The key determinant of the decision-making in the Russia law is one's legal capacity. The legal capacity, as defined in the Civil Code, refers to the citizen's ability to gain and exercise her civil rights and fulfill her civil responsibilities. Full capacity includes ability to exercise commercial transactions, deal with property, get married, vote, etc.. Compared to other countries where restrictions in legal capacity are only applied to specific areas or on a temporary basis, the legal capacity in Russia is totalizing, and it is very difficult to get that legal capacity back. Once the individual is placed in an institution, it is nearly impossible to leave it (Klepikova, 2013).

Internaty file a court request to deprive an individual of legal capacity, and the courts tend to automatically approve these requests. The people who manage to retain their legal capacity within the institutions have the right to leave the building and manage their own money. Despite the seemingly unified model of legal incapacity, in practice institutions apply a differentiated model of capacity depending on the residents' diagnosis, their personal qualities, and their communication skills. In the autoethnographic novel about the experiences of volunteers in institutions, Klepikova (2018) describes the hierarchy that exists among the residents. For example, one of the residents can have access to keys to certain rooms which reflects the special status of the resident and their certain privileges. The so-called "people with conditional capacity" is a category that does not exist in legal discourse but something that is practiced in institutions as a privilege, usually granted to people who do not have a severe intellectual disability.

Currently, there is no differentiation between guardianship function and caring function. Internaty are expected to fulfill both (Fedorova, 2020). In the absence of any other support, many aging parents with children with disabilities who simply cannot take care of them have to give up their children to institutions. If the parents' circumstances change and they want to take their children back, it is very challenging to restore guardianship that is largely related to stigma of being an irresponsible parent and giving up their child instead of blaming the system.

The models of NGOs' work

In working towards the changes, NGOs have relied on several mechanisms, including volunteering, awareness raising, and legislative efforts. However, this work is embedded in the current context of how NGOs' role is defined by the state. The "Concept of the Long-term Social and Economic Development in Russia until 2020" stipulates that public services should be partly implemented by NGOs through outsourcing mechanisms in priority spheres such as support for disabled people and vulnerable families. In compliance with the concept, the Federal Law "On Non-profit Organizations" supports the outsourcing of certain social responsibilities to non-profit organizations. It introduces the notion of "socially oriented" NGOs (SO NGOs) delivering services alongside public providers. Compared to human rights and environmental organizations that the officials perceive with suspicion, the SO NGOs have a much more favorable status (Toepler et al., 2019).

In the early 2010s, the reconsolidation of federal control was underway, and funding for non-profit organizations primarily consisted of government sources (Hartblay, 2020). Flikke (2016) argues that laws introduced in 2012 and 2014 stigmatized those NGOs that receive foreign funds and performed allegedly "political" functions, as well as foregrounded the central role of the Civic Chamber 3 in overseeing the public control functions of NGOs. As a result of these measures, the NGO sector experienced tighter control and decreased funding as well as the consequences of a stigmatized status of a "foreign agent", even though the work of NGOs is aimed at improving conditions in Russia. This has a severely antagonistic effect on NGOs and activists (Flikke, 2016).

Given these constraints, NGOs had to develop a strategy of working with the authorities that would be more sustainable for organizational advocacy efforts. In doing so, the organizations started applying collaborative, rather than confrontational, tactics. Such collaborative tactics usually focus on a specific range of issues and their scope (e.g., insufficient implementation of the state's legal obligations towards people with disabilities). Furthermore, NGOs are providing education to clients about their legal rights and assisting them in their dealings with state agencies and bureaucrats. They use law implementation as an instrument to overcome social exclusion of people with disabilities by arguing directly with state bureaucrats over the meaning of legal formulations and regulations (Toepler & Fröhlich, 2020). At the policy level, professional organizations have advocated and run demonstration projects for inclusive education and equal employment programs for people with disabilities, but this has mainly been possible because these organizations typically maintain close ties to officials. The designated advocacy space in the Civic Chamber provides them with the opportunity to potentially influence power holders in order to advance the causes and social movements they represent (Ljubownikow & Crotty, 2017). They frame their human rights approach as a focus on social support for citizens, which is generally in the interest of government officials, and as concrete activities designed to change the situation of people with disabilities at the micro-level of everyday life (Toepler & Fröhlich, 2020).

Institutionalized access points are not primarily opportunities to influence but opportunities to build or maintain personal relationships to facilitate organizational maintenance or case/client advocacy. In the Russian settings, with constricted societal space for non-profit activity, NGOs have to refer to institutionalized insider advocacy tactics that is conditioned by the ability of nonprofits to directly access ruling and governing elites (Ljubownikow & Crotty, 2016). Such insider advocacy tactics allow for a limited but timely response of the authorities to the NGOs' requests. These organizations combine case advocacy – by focusing on helping specific individuals solve their problems with policy advocacy. Constrained by the advocacy strategies that can be used, NGOs had to make a decision about how to balance both case advocacy and structural change advocacy. Evacuation is a case study of how this was implemented in practice. Both assisted living and guardianship are examples of how deinstitutionalization is framed by NGOs in terms of legal and care system solutions. Given a large number of institutions and the ongoing construction of new ones, NGOs opt for pragmatic solutions that can be perceived as acceptable by the policymakers.

Evacuation

The initiative that was launched in April of 2020, right after the first reported cases of COVID-19 in institutions, allowed NGOs to demonstrate how preventive measures can save lives. The Federal ministries of Labor, Health, and Education recommended that the institutions let the guardians' relatives take the residents of the institutions home. The letter from the four ministries allowed a temporary relocation of the residents of the institutions with their consent. The Evacuation initiative has become an example of consolidated efforts of several non-profit organizations - "Perspektivy", "Anton is right here", St. Peterburg Association of Parents with Disabilities. All three organizations provide services for people with intellectual and developmental disabilities, including training apartments (apartments used to emulate the experience of independent living run by NGOs and used by the residents of the institutions during the day), social habilitation, education centers, and case law that protects the rights of individuals with disabilities. The organizations represent either grassroots or professional organizations that emerged in the 1990s to follow Western organizational practices (Toepler & Fröhlich, 2020). They combine both service delivery and advocacy work. However, the government regulation of the work of non-profit organizations limits their work through the laws discussed above. Organizations that rely on foreign funding are forced to register as "foreign agents", which carries negative connotations of being an entity that operates against the interests of Russia. Therefore, if NGOs decide to step outside institutional structures and attempt to disrupt them, they may become exposed through losing legitimacy, for example, by restrictions of their activities, multiple investigations, and other repressive acts. For example, one of the recent cases involved a palliative care centre for children with disabilities that was charged with drug trafficking, a charge that is believed to be an attack on the work of the organization and its founder (Krasotkina, 2020). NGOs are grappling with how they can make a change charting a course between engaging with institutional structures and risking co-option or standing outside them and risking disconnection.

During COVID-19, these NGOs had an opportunity to demonstrate how the model of assisted living they have been advocating for since 1996 can work in practice. COVID-19 brought the issue of institutionalization to the forefront. Twenty-six (26) people with disabilities (23 adults and 3 children) were moved from institutions that had seen at least 100 of its residents die of COVID-19. When it was time for some people who were evacuated to return to the internaty, one of the arguments put forward by the NGOs was that such return could be avoided if the shared guardianship law was in place. The law would allow NGOs to be one of the guardians of the individuals keeping them outside the institutions (Allenova, 2020).

In the coverage of the lives of the "evacuated" (Bulatova, 2020), their daily routine is described as following:

During the morning circle, all of us are planning the day. The chores are distributed according to individual preferences and abilities, and they can include things like setting a table, making a dinner, doing the dishes, or vacuuming. These activities resemble those of a regular family. Leisure activities are diverse and can include listening to someone reading, playing the dominoes, doing a puzzle, watching moving. After some of the COVID restrictions had been lifted, we could go for walks to local parks, where we could organize a picnic, play by the lake and feed the birds.

This description of seemingly simple activities and lifestyle is intended to juxtapose the familial spaces of the assisted living with the carceral logic of the institutions where any of these activities that emphasize the agency of people with disabilities is unimaginable. Such descriptions can be perceived of as naïve, but given the specific deinstitutionalization goals and the early stages of this work, Evacuation demonstrates the ingenuity and renegotiation of socio-spatial citizenship (Imrie, 2014) of people with disabilities. One of the ethical issues that the Evacuation organizers faced was around the long-term plan for these individuals who needed to go back to institutions if no additional housing was provided. For Six (6) out of 26 evacuees permanent housing was found. The solution was mostly secured through donations from a bank and other people and organizations.

Expanding the contours of citizenship

The social practices of disablement, that constitute the basis of disabled people's citizenship, are influenced by where they take place, that is, their particular geographical or spatial contexts. Disablement, as a political ideology and practice towards disabled people, is not impervious to the locales or places in which disabled people lead their lives. The system of institutions demonstrates how the social and the spatial are constituted in and through particular place-based social structures that seek to devalue particular bodily dispositions, capacities, and experiences.

The political economy of institutionalization that has long been used to justify segregating people with disabilities and denying them access to homes outside of institutions, need to be confronted in order to encourage new ways of thinking about, and building houses that cultivate, rather than stifle, access to home and community for people with disabilities (Marcum, 2017). In the analysis of disability and domesticity as it relates to home, Tauke and Smith (2017) argue that the expectation around what it means to have a life worth living (work, marriage, children) that some people with disabilities will not be able to live up to is linked to both ableism and the central features of the built environment. By demonstrating that life outside institutions is possible, the NGOs are expanding the scope of citizenship to include alternative living arrangements. No place has more cultural meanings than home, which holds immediate and emotion-laden meanings (Tauke & Smith, 2017). Mckearney (2017) demonstrates how housing for people with intellectual disabilities has the potential to create a sociality in which dependence on others is not an obstacle to, but the vehicle through which people with intellectual disabilities can achieve belonging by reconfiguring domestic space so as to offer different relational possibilities.

Paradoxically, the training apartments that many NGOs in Russia rent in regular residential housing blocs are not necessarily associated with community belonging for people with disabilities. The infrastructural heritage of Soviet housing blocs, that are for the most part inaccessible, produce a kind of material separation of people with disabilities from one another and from the central spaces of the city in a way perpetuating "confinement" and social segregation. However, Hartblay (2019) cautions against applying a blanket generalization of marginalization to disability in post-Soviet space - in spite of material separation, digital platforms enable channels of communication for people with mobility disabilities (Hartblay, 2019). People are isolated in the physical "cells" of their apartments, yet at the same time embedded and enlivened in networks that produce meaning-making interactions. This spatial logic of integration of marginalized subjects in post-Soviet Russia is complicated by the historical context in which public space is not necessarily democratic space and in which citizenship is tied to discourses around productivity and worth. Indeed, by relocating people who lived in institutions to apartments, the NGOs, or the relatives of people with disabilities, might not be completely resolving the issue of isolation. For example, some residents of the apartment building where the people from institutions were relocated expressed hostility toward the volunteers and the disabled residents, which is indicative of the deep fear and ableism of the community (Miloserdie, 2020). The cultural assumptions, social expectations, and attitudinal barriers must be accounted for, confronted, and challenged. We then need to think of Evacuation and these new spaces of community living not only as an opportunity to reimagine home, but also view it as a site of relational citizenship in which the idea of home is contingent on the volunteers and the staff of NGOs involved in this work and on the continued efforts to improve the physical accessibility of residential and other urban spaces.

Conclusion

This article provided an overview of the institution system in Russia and discussed the role of NGOs in driving deinstitutionalization in the context of a post-Soviet environment and legislative landscape. The complexities of articulating the need for reform, coupled with a slow pace of change, resulted in COVID-19 becoming an impetus for accelerating the discussion about deinstitutionalization and the need to expand the presence of assisted living in Russia. By connecting the Evacuation initiative to the history of institutionalization and the sociopolitical context of the NGO sector in Russia, the article demonstrated that despite the devastating impact of COVID-19, it allowed the NGOs to shift the discourse and challenge the normalization of institutional violence focusing instead on expanding the spaces people with disabilities can occupy.

In describing the logic of institutionalization in Russia, the lawyer of Perspektivy compares the experience of going to the store just to learn that it is closed earlier than usual and trying to go for a walk in the institution and not being able to do so because the elevator attendant has left (because they are paid to work only until 4 pm on a weekend). The difference between the two is that the former example still provides some options (e.g., going to a different store), whereas the second example leaves no such choice for someone who uses a wheelchair. The lawyer writes that violations of rights in the institutions are not perceived as extraordinary. The decisions to limit the person's right to mobility, right to file a complaint are seen through a lens of "rationalization of activities", when convenience for anybody but the resident of the institutions is what is driving the continuous violations of rights (Perspektivy, 2021). The discourses around dehumanization clash with a neoliberal logic of rationalization.

Ben-Moshe (2020) expressed concerns about the ways in which the calls to close carceral enclosures because they are disabling can be used by the state as a strategy to "improve" or extend carceral locales. This could look like, for example, stopping the debilitating conditions of confinement by providing better health care in sites of incarceration or even releasing those with debilitating conditions, but not others— all of which will result in increasing the net scope of carcerality and state violence. Similarly, a notion of transinstitutionalization (Leblanc & Jones, 2020) speaks to the ways in which institutions have shifted across various cultural sites and shapes, carried from our past to the present through social policy, care work, education, and incarceration.

When describing her experience of coming back as a volunteer to the institution that she volunteered at six years ago, Klepikova (2018) noted the changes – from the check point that was built to replace a fence with a hole as an entry point, to the organized educational activities that are now provided for children – all of which can be seen through a lens of carceral ableism. The emerging research on the system of assisted living in Russia demonstrates that "normalization of life" in the context of ongoing "improvements" in the institutions, and even in the context of assisted living, does not automatically result in de-medicalization of how people are treated (Altukhova, 2018). Neither does it dismantle institutions, or their logic, completely. These cautionary tales are important to keep in mind when imagining and re-imagining the lives of people with disabilities outside institutions in Russia.

References

Endnotes

  1. Internaty and institutions will be used interchangeably.
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  2. Evacuation was held in St. Petersburg.
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  3. The Civic Chamber is an advisory body of 126 prominent individuals from different segments of Russian society, whose task, according to the legislation, was to "bring citizens and social organizations into the realization of state policy" and to "secure the coordination [soglasovanie]" of state and societal actors in important matters of public policy (Richter, 2009). In other words, Civic Chamber is providing an institutionalized setting for NPOs (Should this be NGO's?) to raise concerns and represent the interest of their constituencies or clients or hold the state to account. This specific Russian context makes vertical ties increasingly important to NPOs for both obtaining legitimacy and their day-to-day activities (i.e. service provision) (Ljubownikow & Crotty, 2017).
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