1“I CAN DO IT MYSELF”The Politics of Disability Politics, 1990–2008

The End of an Era: Closing the Weekend School

In the summer of 2012, I arrived in Petrozavodsk for a long stint of fieldwork. Settling into a rented apartment on a wide boulevard at the edge of the city's downtown center, I was excited to rekindle relationships that I had fostered during preliminary research two years before. You don’t foster a person, you foster a relationship. I had a spreadsheet of research contacts—email addresses and phone numbers for NGO organizers, parent activists, and special education professionals in the city. Before arriving, I had reached out to just a few by email, so, on a sunny day during an unusually warm July, having just arrived in town, I crossed the busy intersection to the new shopping mall near my apartment to purchase a Russian SIM card for my iPhone (an upgrade from the minimalist cellphone I had carried on previous trips to the field). The mall's exterior was an architectural conversation starter: following a new trend to use brightly colored siding, it looked like a Tetris brick, with bold green and purple blocks protruding from the wall. Inside, the mall looked like any sleek commercial interior, and only the Cyrillic script and fellow shoppers placed the space as Russian. Yet, there were few foreigners in town, aside from the usual smattering of Finnish tourists en route to lake vacations or looking for a cheap drinking holiday; when the twenty-something employee dressed in a yellow and black uniform shirt at the cellphone service provider store requested my documents to register a new plan, he was amiably surprised when I offered a US passport and local address. Back in my apartment, SIM card activated and internet working, dust from the road still clinging to my legs in the heat, I sat down to call Felix. He was out of town at the dacha but told me to call back on Saturday.¹ Sure enough, when I called back Saturday afternoon, I was invited to visit Felix and his wife Masha in their apartment at the opposite end of the downtown. I walked over, picking up snacks along the way, before spending more than two hours catching up.

I hoped that connecting with Felix and Masha would be the gateway to the vibrant disability community that I remembered from two years prior, but I was in for a surprise. Sitting in Felix and Masha's apartment again, instead of inviting me to join in at the Weekend School the following week, they invited me to help them move. The Weekend School, they explained, was moving. Or, more accurately, it was being ejected from the space it had occupied and that I remembered from my last visit. Several years prior, the organization had been granted space on the first floor of an old wooden building near the former city hospital, which it had happily used for a number of years, with no expectation of the arrangement changing. Earlier in the summer, however, city administration representatives had informed Felix, in his capacity as official director of the nonprofit organization, that the group would need to vacate the premises of the building. According to Felix, when they inquired as to the reason, they were informed that the building was a fire risk. Yet, Felix and Masha pointed out, raising their eyebrows meaningfully, many such buildings in the city continued to operate without questions. I asked if they meant to imply that they were being forced out on purpose, and if they had any chance of being relocated to a new space. They shrugged, pessimistically.

Later that week, I arrived at the Weekend School with my colleague, a historian visiting from Moscow and curious for a taste of life in Petrozavodsk, in tow. It was hot and sunny, and we had taken two buses to reach the Weekend School, but once we arrived, Felix and the others explained that they had already cleared everything out that morning. They were leaving to bring the items to a space that an acquaintance had offered for temporary storage. We were ushered into the car of one of the project members and found ourselves being ferried back across town where we had just come from, wending our way through traffic and arriving in a dusty courtyard ringed with slight birch trees behind a building that I had never visited before.

Near a garage in the parking area, we found several of the other Weekend School contributors, including Aina, who I had met two years before, and greeted amiably. Others were obviously friends or acquainted with Aina, all in their twenties, of varying unknowable disability designations and ambulatory to varying degrees. Given the day's task at hand, the group was feeling surly, from spending the morning moving in the heat, and feeling the dejection of knowing that the center was closing with no current hope of reopening. They were on smoke break as we arrived, and while we were being introduced, I quickly forgot the names of those I was meeting as I did not have a chance to write them down. One of them, tossing dark-dyed bangs out of his eyes, gallantly offered us cigarettes, which we accepted with thanks but smoked with the half-hearted motions of nonsmokers attempting to assimilate. The group grumpily bantered over subjects too far along for me to follow for the remainder of their cigarettes. They inquired about my colleague and I clarified that we worked at the same university when someone incorrectly assumed that he must be a fiancé. Then, reluctantly turning back to the unsavory task at hand, the crew appraised me and my colleague favorably, as two sets of fresh arms and legs capable of carrying haphazardly packed items, ranging from wheelchairs to boxes of musical instruments, up several flights stairs.

Before long, my colleague and I found ourselves on the stairwell leg of the moving relay, passing each other as we went up and down, accepting items from a group in the parking lot and handing them off to another group in the upper hallway or the room allotted to Felix for storage. The building was a late-Soviet construction in a state of semidisrepair, such that some rooms were in use, neatly outfitted and furnished with recently purchased office equipment and Chinese-manufactured furniture, and others were utterly unused and evidently had been for some time, with chipped paint and dusty floors. Most notably, the elevator did not work. The belongings of the Weekend School that we ferried up the stairs were stacked in one of the empty rooms with some manner of organization determined by Felix who received the boxes. I wondered why the school couldn’t simply operate out of one of these empty rooms, and Felix explained that they weren’t renovated, and the building's elevator was broken so Weekend School participants wouldn’t be able to reach the third floor. In addition, the space hadn’t been officially allocated and was lent only temporarily for storage on a personal and unofficial basis. Once the boxes were stacked and piled to satisfaction, Felix reluctantly closed the door. Those of us standing by took one last sad look before he shut and locked it, and then walked off slowly to return the key

In the moment, I was taken with the bustling activity of the day, topped off with a hearty meal of fish and potatoes and several rounds of vodka shots in Felix's apartment. But as time went on, I realized that the afternoon's move amounted not just to a temporary setback, but, seemingly, a final shuttering of the Weekend School and the end of an era in Petrozavodsk disability services and the life of my interlocutors. The camaraderie of the moving day was a moment of togetherness that—in spite of hopes stored in that dusty room—never again materialized for the Weekend School cohort during my fieldwork. I visited the vocational center several times for other meetings or activities organized by other disability activists, but I never again saw the inside of that locked room with the Weekend School's materials.

A few weeks later, after my colleague left and I was alone again in my rented apartment, I found myself feeling a little stuck. I had been planning to base a significant portion of my fieldwork around the Weekend School, based largely on the warm introductions and initial interviews that I had recorded with Felix, Aina, and others two years before. I found myself spinning as the “thing” I had been planning to study was literally no longer there. The Weekend School's furniture, toys, books, and instruments were packed away in the dusty unused wing of the vocational center. The box containing the Weekend School's dishes—the same dishes that had appeared in a promotional pamphlet that Felix had given me about the Weekend School, featuring a child with cerebral palsy washing dishes with the assertion “I can do it myself”—was packed up, out of commission. That afternoon, I felt like I was hitting a dead end: Without the Weekend School, there was no there when it came to independent disability advocacy in the city.

I set up a meeting with Svetlana, a sociologist and advocate who had introduced me to findings from her qualitative research on adults with disabilities in the region, and described the lay of the land in terms of disability organizations. She had promised to introduce me to other NGO directors, and we had made tentative plans to find a way to work together. But, at our first meeting that summer, she revealed that she was planning to move abroad, having fallen in love with a foreigner she met online. Her two daughters were already grown and in university. Then, Katya, a woman whose daughter had cerebral palsy, who had been instrumental in an earlier movement to assert the right for disabled children to attend general education schools in the city, explained hurriedly in an email that she was out of town on summer vacation; and, she went on, although the lawsuit she had described with a spark of excitement and possibility in 2010 had been won, her daughter still went to the internat, or specialized school, and there was not really much going on in terms of activism.

Typing up my fieldnotes, I wondered how exactly I would research disability advocacy organizations, when, it seemed, the organizations I was planning to work with no longer existed. I did not understand why Felix and the others were not relaunching the Weekend School; why Katya had shifted her activism from trying to take on the state to trying to work within it; or why Svetlana was leaving. Sitting in my rented apartment, feeling quite alone, I realized that it would not be enough to understand what people were doing, I would need to understand the backstory to understand what they were not doing. And, I would need to understand what larger political forces were at work that had led disability advocates, service providers, and NGOs in the city to change so dramatically in just two years.

The Russian Foreign Agent Law

On July 2012, the same month that I arrived in the field, and just a few weeks before I found myself schlepping boxes up and down the stairs with Felix and the cohort from the Weekend School, a new bill was introduced to Russian legislature by Vladimir Putin's United Russia Party and became law. Commonly known as the “foreign agent law,” Federal Law No. 121 of the Russian Federation discourages Russian organizations from receiving funding from international sources (Human Rights Watch 2013b). “The law,” asserts one policy study, “is designed to regulate the activities of NGOs (described as non-commercial organizations in Russian) that receive money from foreign sources and engage in political activity” (Tysiachniouk, Tulaeva, and Henry 2018). Although I had not heard of the law as I was preparing for fieldwork, it soon became major international news, and by the time I returned home to the United States, it was a major point of conversation in considerations of US-Russia relations.

This unfolded in the context of Putin's return to the presidency through a loophole in Russian federal law that allowed him to serve no more than two consecutive terms, but did not prevent him from reelection after another president served. I had conceived of this project and conducted my preliminary fieldwork during the preceding years of the Medvedev presidency. This interim between Putin's first two terms and his return to the presidency were widely considered to be an era of liberalization characterized by more openness in civil society and a strong economy. Putin's return to the presidency saw a reconsolidation of federal power on several fronts, including Law No. 121.

The foreign agent law offered a means for the Russian government to control the ways in which foreign organizations—from US Agency for International Development (USAID) to the Open Society Foundation (founded by George Soros)—incentivized particular kinds of civil society activity through grant-making programs. The late 1990s and early 2000s created a vibrant atmosphere of NGO-ization in Russia, but within certain sectors of the Russian government, these programs were emblematic of foreign soft power extending into Russia and thereby violating Russian sovereignty. The 2012 law followed previous efforts to increase regulation and transparency in the NGO sphere (Benevolenski and Toepler 2017). As scholars have shown, foreign-funded programs played a significant role in shaping social mores in Russia in the early 2000s (Hemment 2004, 2007; Kulmala 2011; Bernal and Grewal 2014). Yet, in the years following the passing of the foreign agent law, NGOs with diverse orientations—feminist scholarship, labor organizing, LGBTQ advocacy, and more—were either slowly starved of foreign funds or were subjected to invasive and intimidating investigation under the charge of acting as foreign agents. For instance, a 2013 Human Rights Watch report, researched during the same period as my fieldwork, describes the rise and enforcement of the law, and observes that the law had the most significant impact on those NGOs deemed advocacy organizations—that is, those groups that are intentionally seeking to shift public opinion (2013b, 2). From the perspective of the United Russia Party, the NGO-era was a symptom of the Russia Federation's comparatively weakened geopolitical standing during the late 1990s and early 2000s. Scholars have observed that post-Soviet bureaucratic power is entwined with therapeutic and psychiatric power, and the reconsolidation of state authority was in part expressed through a reconsolidation of medical and rehabilitation services (Raikhel 2016, 8–9). As Putin's political machine sought a future for Russia as a major world power, free of the need for foreign assistance, and unbeholden to the influence of cultural norms from abroad. Expelling foreign funders in the nongovernmental sector paved the way for Russia to reassert itself as a world power in its own right.

From the vantage point of North America, the foreign agent law came to be perceived as one part of a “government crackdown” with Putin's return to the presidency, and a harbinger of worsening diplomatic relations between Russia and the West. For instance, in September 2012, USAID, the arm of the US government providing aid abroad, received a cease-and-desist order from the Russia government, closed its Russia office, and terminated activities in the country. The BBC reported: “The expulsion follows a government crackdown on pro-democracy groups. ‘The decision was taken mainly because the work of the agency's officials far from always responded to the stated goals of development and humanitarian cooperation. We are talking about attempts to influence political processes through its grants,’ the foreign ministry said in a statement” (Rosenberg 2012).

The foreign agent law was not the only element marking a shift in governance domestically. Russia-watchers and Russian liberal media bemoaned draconian legal response to the 2011–2013 protests for fair elections (sparked by the announcement that Putin would run for another term), the prosecution of Pussy Riot following their performance in a Moscow church, and other anti-US legislation, including a ban on adoption of Russian children by foreigners. These actions seemed to signal to the Euroamerican international community a break from so-called “reset” era politics, and a new unwillingness to bend to human rights demands coming from foreign governments. Some might say that, in retrospect, these domestic actions were precursors to the subsequent invasion of Eastern Ukraine. In Russian official media and popular understanding, they were a reasonable reaction to US imperialism and chronic overstepping of North Atlantic Treaty Organization. Yet, from the point of view of my interlocutors, Putin's return to the presidency was characterized by a reconsolidation of federal power over regional and local government, and, over the implementation of social services and civic agendas.

Were my interlocutors really at risk of being branded foreign agents by continuing to work with foreign funders? But what, then was “foreign” cultural logic at work in disability NGOs in Petrozavodsk in the late 1990s and early 2000s?² How did Euroamerican ideology influence the disability services and advocacy in the city during that time period? What did disability access and inclusion have to do with democratization and transition, and what traces did those paradigms leave on disability culture and lexicons of access in Petrozavodsk?

Democratization and Disability Services: Talking About Disability and Access in NGO-Speak

My first introduction to the story of disability services in Petrozavodsk in the 1990s were stories I heard from Felix, the director of the Weekend School. I was first introduced to Felix and his wife Masha in 2010, through mutual acquaintances. To my delight, when I visited them in their apartment near the center of the city that summer, I was treated like an old friend, perhaps a cousin or niece, and welcomed into an apartment bursting at the seams with memorabilia, handicrafts, tchotchkes including doilies and tiny glass animals, decades of magazines and newspapers, and other family keepsakes stuffed into dark wooden bookshelves. Lush green houseplants wound their way around the shelves, over stand lamps, and on and onto or away from the windowsill of a set of large south-facing windows that opened over the busy boulevard four stories below. Like many of us when we start trying to tell the story of something that has been central to our lives for many years, Felix and Masha started somewhere in the middle of the story and worked their way out, often talking over one another, redirecting from one element of the story to another, or jumping to a seemingly unrelated detail. I was delighted watching their interactions, and felt like I was witnessing a comedy routine about an aging couple.

As the contours of their story emerged, I began to understand that Felix and Masha had somewhat unexpectedly found themselves in the midst of an emergent effort from the late 1990s onward to shift the way that children with disabilities in Petrozavodsk understood themselves and their role in society. This effort was driven in large part by the emergence in the late 1990s of a democratization paradigm that sought to build civil society in Russia, which included the translation of current disability rights discourses from Western Europe and North America. I watched Felix's voluptuous gray mustache bounce merrily as he talked, and furiously took notes, sipping my tea with cherry jam and honey, and furtively checked that my digital audio recorder was still working.

Felix and Masha's concept of disability inclusion and rights was premised on the idea that disabled children and teenagers ought to have the chance to pursue their goals and to recognize themselves and be recognized by others as capable, independent citizens. As Felix put it, the programming the nonprofit he came to run was devised to show that teenagers with disabilities “are also people, just like everyone else” (chto oni takie zhe liudi, kak i vse). A slide show that he prepared as part of grant reporting to funders included one slide that showed a child with an apparent disability (perhaps DTsP, similar to the English cerebral palsy) washing dishes with the assertion “I can do it myself!” under the image. This paradigm of independence echoed with strains of 1990s disability advocacy in the West, drawn from the independent living movement and the rise of new accessibility legislation that centered on the civil rights of the individual disabled person, which was quite contrary to Soviet paradigms of collective political futures.

During that first visit, Felix and Masha insisted that I try local Karelian specialties, including a tea made from an herb that grows in the region and two types of bal’zam, a herbaceous alcoholic beverage typically taken as a digestif shot. In this merry hospitality, I recognized that the couple was well practiced in welcoming Americans, and they knew quite well which local foodstuffs would be novel and interesting to me. They also insisted that I call them by their first names, no patronymics, per US custom (an aberration in Russian, as polite address to elders outside of one's own family would have me call them by first name and patronymic). Indeed, as I read back over the transcripts from Felix and Masha, I was struck by just how in touch with foreigners the Petrozavodsk disability community I encountered had been throughout the 1990s and first decade of the 2000s. Another woman, about the same age as Felix and Masha who ran a different NGO in Petrozavodsk, focused on democratization and civil society with a few disability-inclusion projects. She told me that she had so much ongoing contact with her US collaborator that two years after their last project she still had a suitcase of his winter clothes in her closet, stored for him should they get another project funded so that he could return.

Felix explained in our first interview that he started out working as any other afterschool or enrichment teacher at the city's palace of culture (a Soviet-era institution that ran programs for children). In the 1990s, he found himself working with children with disabilities in that context rather by chance. A state-department-funded citizen exchange program brought US citizens from Vermont to Petrozavodsk, and one of the legacies of that exchange was a new computer for the Palace of Culture. As part of a civil society initiative, it was proposed to Felix to begin a magazine authored by the disabled kids, and for several years they ran a magazine, with the kids writing and producing. The magazine project taught disabled children technical skills—computer use—and was formulated according to the principle that self-expression was good for disabled children, and interest-group citizen journalism was good for Russian society. Eventually, however, that project petered out as the participants grew up and the group lost cohesion. At one point, they had ambitions to develop the project into a permanent fixture by creating a print shop that would both produce the magazine and be a collective where the kids could work to fund the magazine; they had an idea for a radio program. By the time I was conducting the research for this book, the only remaining legacy of the magazine was in the stories I heard from those who participated, and the influence that its production had on several of the participants, including Aina and Vakas (who continues to write poetry).

NGO Publications: An Archive of Disability and Democratization Projects

Felix and Masha weren’t the only ones taking part in the shifting field of disability services: Disability NGOs continued to grow and build power in the region throughout the first decade of the 2000s. Evidence of the array of disability NGOs in Petrozavodsk in this time can be found in the vibrant and plentiful publications put out by these organizations—from pamphlets to seminar reports to project summaries. I always collected these NGO publications while I was in the field, returning home with a folder full of colorful leaflets, CD-ROMs, and booklets with covers bearing the names of organizations and their projects in Russian and the logos of national and international funders. Perusing and cataloging their contents later, I found names I recognized from my time in Petrozavodsk, along with many names of people I had never met, including local government officials, visitors from other parts of Russia, and people from other countries, especially Finland, Sweden, and the United States. Over time, I had amassed ten folders—a full file box—of NGO materials.

One booklet that I received during a meeting with the municipal NGO incubator memorialized a Republic-wide seminar hosted in 2009, organized by an NGO run by parent advocates. The seminar was funded by a grant from the Karelian Republc, with materials for the seminar developed through a project funded by a federal grant (while the organization was also partially supported by foreign grants). The participants included members of different government bodies, centers of social service, and public organizations as well as youth with disabilities, parents, and teachers. The seminar covered forms of support available to young people with developmental and emotional disorders, the types of support activities, an interdisciplinary approach to the system of support, and fundraising to support developmental activities. The organizations sought to influence how the regional government responded to the needs of people with disabilities and their families and to demonstrate the need for further services. The report asserts, “At the basis of life activity of young people between 18–35 lies the need for work (trud) as the means for financial wellness and self-realization. The studies of inclusive education conducted by [the hosting NGO] in 2007 among young invalidy, showed that almost all participants seek to achieve an independent life. To realize this goal, it is necessary to have a profession and a job as a means to independence” (Osobaia Sem’ia 2009, 8). Overall, the seminar stressed establishing and strengthening partnerships among various government institutions and organizations.

“In the end, all actions from government bodies, municipalities, and society have to lead to the main goal—return of people with disabilities to active life, destroying of a reformed understanding of people with disabilities as dependents (izhdiventsy), disposable people” (Osobaia Sem’ia 2009, 27). The booklet creates an extensive comparison between European Union (EU) countries and Russia, suggesting that the Russian state should become more like EU countries in furthering state-NGO partnerships to further the provision of social services supporting social inclusion.

A 2011–2012 pamphlet for the Weekend School, put out in association with partner NGOs that also supported parents of children with disabilities and a rehabilitation center, drew on the same phrasing that Felix had used in a presentation to foreign funders in 2010. It described the space as an “Inclusive Educational Center for Children” that “creates conditions for including children with limited health abilities in collective educational and cultural life.” This formulation emphasized inclusion, significant in that the predominant model for special education supported by the state was either segregated “specialized” schools or at-home education. The pamphlet features the phrase “I Can Do Everything Myself” as a motto for the school. The center is described as bringing together youth leaders with disabilities, volunteer students, and “specialized social workers” for activities. The activities of the center are described as broadening the socialization of children with limited abilities and their families; mutual adaptation of society and family with children with limited abilities; social-pedagogic rehabilitation of children through creative and leisure activity; and development of creative abilities of children.

Pamphlets for other organizations from 2012 onward, however, took a rather different tone. Although they exhibited the same interchangeability of translated foreign terminology and existing Russophone phrasing, in contrast to the foreign-funded projects that mentioned and oriented themselves to shifting society, subsequent projects focused only on disabled children, people, and their families. Any mention of the need to alter society, or social attitudes of the broader population, had been abandoned in favor of services for disabled people, which were presented in terms of social rehabilitation using phrasing drawn from social work concepts that apply psychological discourse to social problems. These projects, funded by state actors—municipal and regional government agencies—were therefore distinct from the civic-minded projects from 2010 and earlier that emphasized the need to change society.

Although there was very little overt discussion of the foreign-agent law during my fieldwork, its effects reverberated through the landscape of how disability services professionals oriented their labor. As I conducted fieldwork, I interviewed numerous leaders of disability organizations throughout the fall of 2012 reckoning with this change and wondering if they would find themselves closing their doors, having existed for a decade on funds from USAID, United Nations Children's Fund (UNICEF), Soros, and other international donors.

In my archive of brochures and documents, as well as in my experience in the field, there was a sudden surge in 2012 of art therapy projects—or projects for people with disabilities described as art-terapiia (a new paradigm for the community). This initiative was supported, in part, by an earlier project to provide exchange between Finnish and Swedish NGOs and Petrozavodsk groups. Art therapy was described as an important tool for “overcoming social deprivation” experienced by disabled children and adults. Several articles based on nearly a decade of cooperation were published in a locally distributed brochure in 2011, and numerous projects appeared in this model in 2012, including one that I attended for a few sessions for mothers of children with disabilities. During this weekly project, the participants simply made small craft projects and chatted with other mothers. Most of these programs, however, were hosted by social service agencies, rather than NGOs.³ Another such project, hosted by an organization otherwise not involved in disability advocacy, created a theater project. A pamphlet describing the project asserted that art therapy was needed for children with disabilities and their parents because they were physically isolated as a result of “disability barriers” (bar’ery invalidnosti). This mistranslation of the concept of barriers to social inclusion reattributes social barriers to the disabled people, thereby reinscribing disability as a property of disabled bodies. This mistranslation also demonstrates how local incentives to create art therapy projects become drivers of global access friction, with ideas about disability inclusion at once proliferating and taking on different inflections and meanings.

The shift is otherwise seen in the transformation of partnerships with Finnish donors from partnerships with independent NGOS to partnerships with state agencies. For instance, a 2012 document describing an event dubbed as a “Learning Lab” for accessibility in the built environment indicated that the lab was supported by several Karelian and Finnish Universities, as well as by Saint Petersburg Region state rehabilitation groups. The project was targeted at building long-term partnerships with Finnish organizations and companies to improve accessibility, comfort, and quality in the built environment through the use of “accessibility solutions and technologies.” In this new iteration, these partnerships were not being formed between foreign funders and community nonprofits, but rather between foreign funders and state agencies. Although the project targeted accessibility in the built environment, it was not focused on building awareness and power among disabled self-advocates. Instead, it focused on building competency in a domain of international standards—accessibility in the built environment—among professionals and practitioners. In this way, professionalization of disability services was relocated to the domain of state agencies and accessibility was appropriated not as the purview of grassroots advocacy (e.g., Sarah Phillips's work in Ukraine in the early 2000s), but as the business of the state.

The New Generation: From NGO to Municipal Project

This shifting array of services for people with disabilities in the city since the 1990s was well understood by professionals working in disability services in Petrozavodsk in 2012. In an interview with Nastya, a psychologist and assistant director of a municipal early intervention center that I call Elements, she helped me to conceptualize these changes. Elements started out as an informal parent organization, then became an official nonprofit, and finally, was a municipal agency. Throughout this time, it provided a similar array of services for children with disabilities and their parents, with a consistent staff and leadership. Nastya described the shifts in attitudes toward disability in the city between the 1990s and 2012:

Little by little the awareness of the parents and the understanding that they have to accept such a child, and not be ashamed, but usher him into life, to give him as much as possible whatever services are available, so that he would develop and could be integrated into society. The active (aktivnye) parents of such children got together and mounted a lawsuit so that their children should go to kindergarten, but while it was being deliberated, the children already outgrew the pre-school age, and they went to school. That is these parents appeared who decided to move forward and assert their rights. And now, today, when parents come to us, it seems to me that their mindset (psikhologiia), and their understanding of the situation has changed a little. And having worked here for so many years, I can see that there are already a lot more children who you can catch sight of in the sandbox or out for a walk in their strollers/wheelchairs. But before that kind of thing happened very rarely, that is they [the parents] really felt ashamed and were isolated. Now parents are really actively involved with these kind of children, they understand that a child needs to live and to be integrated. The paradigm has changed.

In this sense, for Nastya, this shift to a more municipal- and state-run array of services was a natural progression of building a new paradigm in the post-Soviet era and a legitimate process of professionalization of disability services as a sphere.

The shift to municipal services from more independent family-based nonprofit organizing also came up in interviews with parents of disabled children engaged in advocacy in the city. One important indicator and result of the changing NGO landscapes appeared in the form of a conflict between two generations of NGO parents. The generation who had children in the 1990s preferred independent NGOs that carry out projects based on limited-term grants from international organizations. These parents (that is, mothers) all fell into a group that social scientists have categorized as “professional NGO workers” (Hemment 2007). Younger parents, with children now in elementary school, had a different focus: Instead of relying on foreign grants, they shifted their attention to taking on as much power as possible in government organizations.

Lena was from the older generation of parents. Throughout the 1990s and early 2000, she was the director of a small, independent nonprofit serving families of children with disabilities in Petrozavodsk and around Karelia. Indeed, Lena was having difficulty finding funding following USAID's exit from the city. She felt frustrated that a younger generation of parents, rather than joining her group, had taken on other modes of advocacy, which, in a sense, was related to the competition for funds. Lena's son was now grown up, and her practice of receiving funding to carry out projects or support international actors had dwindled since 2008. A large project on inclusive education resulted in the publication of a professionally researched policy volume in 2007, yet in 2012, her organization was without a major project. They still maintained their two-room office space with desks, computers, and files, and continued to serve those families that had worked with them for years, but they had no grant funding for programming.

In contrast, younger parents, observing this shift, had begun to take a different strategy: to import models of inclusion from abroad and to fund their implementation through Russian state agencies. Considering the trajectory of the Elements NGO, now an office of the city's department of education, this seemed to be a sound strategy. For instance, recall Katya, the organizer whose daughter had severe DTsP. Leaving behind her earlier strategy of working informally with other parents to organize and pursue legal court cases, Katya shifted her strategy to obtain a position within a state institution that she might then help shape in the future. Katya worked to insert herself into the work of the state office for labor rehabilitation, another center in the city, which had long languished under a disinterested director. When that director finally left, Katya and another colleague were appointed to take over the functioning of the center. Although they had little money, and the building was badly in disrepair, the position of the center as a state agency afforded Katya a degree of security in building programming that she felt would be safe from intervention and stable over the long term. Because Katya's daughter will likely rely on adult day services to lead a full life after high school, the stakes of what kinds of programming this languishing state office can provide were high. By investing the caliber of state services, Katya was laying the groundwork for a program that she hoped would be in effect when her daughter became an adult.

I was privy to a degree of tension between Lena and Katya, who, if I spoke about either one to the other, would respond with an air of frustration. Mutual miscommunications seemed to be the status quo; each seemed to think the other was missing something crucial in her approach to the problem of how to work toward creating the best possible services for children with disabilities in the city. Lena, in particular, was distressed by what she perceived to be the younger parent-advocates’ insouciance: Katya and her ilk seemed oblivious to the level of work that Lena felt she was able to conduct with international funding. Moreover, they did not look to Lena as a mentor, but instead they struck out in different directions, as if starting from scratch. Katya was aware of this dynamic, but she unsure of how to smooth things over. During our interviews in 2012, Lena reacted to any mention of Katya and her projects with timbre of someone whose feelings were hurt by a professional rebuff. This standoff may partially have been the result of a difference of opinion or framework about how to coordinate services between informal parents groups, internationally funded NGOs, and state agencies. Lena had long sustained her NGO on foreign grants that supported an array of short- and long-term projects. Therefore, she considered the institution of the NGO and the freedom and flexibility and independence it provided to hold great value. This approach was shaped by the conditions of the second phase of post-Soviet NGO culture. Meanwhile, Katya's orientation was based on an assessment of what could be possible in this third-wave NGO culture, in which, under Putin's foreign agent law, it was nearly impossible to receive consistent foreign grant funding, as it had been throughout the second half of the 1990s and the early 2000s. But how did the disabled children who came of age during these transition years—the Weekend School generation—understand these conflicts and shifts?

Always a Guinea Pig: The First Post-Soviet Generation's Experience

For my research participants who included children with disabilities growing up in Petrozavodsk in the 1990s, this turn to art therapy and similar paradigms, and the appearance of new practitioners of this new method in the disability services scene, was not surprising. For this core group of interlocutors, the one constant in their experiences of disability services was persistent change and instability. Projects started and stopped on the whims of foreign funders, the energy of NGO professionals, and the caprices of relationships among the various actors.

When telling stories about their childhoods, this cohort rarely reflected on inaccess. Rather, they reflected on the shifting paradigms of disability services built on different models of social inclusion. Each model of social inclusion suggested a different set of stakes for disability access. In this way, the inaccess stories of childhood were stories about the instability and precarity of institutions providing disability services, and the lack of continuity that this provided. At the same time, these stories functioned in the course of interviews with my interlocutors as coming-of-age narratives in which my interlocutors shared their personal histories of coming to disability politics.

Sergei's cohort was part of the first generation of children to attend a preschool program for children with disabilities. They spent their childhoods attending a special education school in a remote region of the city. Mainstream education would not be introduced to Petrozavodsk until 2006; in the early 1990s, however, changes were unfolding in the way that Petrozavodsk social attitudes and social services infrastructure related to people with disabilities. Sergei recalled:

S: So it was, right away—after I finished kindergarten, which was also a special program for children with disabilities, so—um, that kindergarten, I was in the first class that we had. And I, in general, I feel like throughout my whole life, we’ve been doing experiments on me—I am always surviving experiments!

C: (laughs) Ahh, you’re from the very first group that went to the kindergarten?!

S: Yes, yes. So this kindergarten—this kindergarten had just opened, the special education one. So. I—I went there. And when the special kindergarten had a graduating class, it graduated the children to the specialized school. So. To the internat. […] everyone from the kindergarten was designated [by the PMPK (the Psychologo-Medical-Pedagogical Commission, the official entity responsible for evaluation of disability status)] to go to the internat. So. Then there was the first nonprofit organization (obshchestvennaia organizatsiia) also, not long after it was started. So, it was ongoing. Everywhere everyone was doing experiments on me.

Sergei attended an internat, a boarding school for children with motor impairments in Petrozavodsk. Because he was from one of the “city” families, he was able to go home each afternoon, a fifteen-minute bus ride from his house, whereas those children whose parents lived outside of the city often saw their families only at holiday recess.

C: So, were there ever moments during your childhood when you asked, why do I go to the internat? As in, “the neighbors go to the neighborhood school, but, I go to the internat.” Did you ask about it?

S: (immediately) No. I mean, there somehow wasn’t—there wasn’t [not sure how to put it]—it was just considered normal [laughs, a little embarrassed]. Actually, it was the opposite—I thought it was good that I got to go to school. And so what if I go to the internat, it's still a school!

Sergei's mom perceived the possibility to attend school at all as a positive opportunity, and she instilled this understanding in Sergei as well. Although the internat was a segregated educational setting for disabled children, it was a new option in the 1990s, distinct from total institutions that preceded it.

Although Sergei was happy as a student at the internat, other interlocutors, especially those whose families lived far from Petrozavodsk, disliked it and wondered why they were not allowed to attend their neighborhood schools. Policy toward the education of children with disabilities continued to evolve throughout the 1990s, and by the early 2000s, a new push by parent activists began to pave the way for mainstream schooling.

Because of the changing landscape of disability services and the resulting difference in experiences and social identity as invalidy, subsequent generations (and even people just a few years younger) have had vastly different experiences than my core cohort who were in their early thirties when I was conducting my fieldwork. Sergei explained:

If before, there was a tendency, if you had invalidnost’, then you go to the internat, like everyone else with invalidnost’. Because before, the thinking was that it would be difficult for such people to adapt to a general school environment, because they are not like everyone else. So that's what they thought previously. And so they sent everyone right to the internat, so that there wouldn’t be any questions or problems. But now—it's come around to a situation where, if you communicate well (khorosho razgovarivaesh’), regardless of whether or not you have difficulty getting around (plokho peredvigaesh’sia), the important thing is that you can hold a conversation (obshchat’sia) and get on with people. Then, in that case, you can attend the general education school. And those kinds of kids—now they’re assigning to the regular schools.

And so the internat, then is left for those kids who, due to their illness/affliction (zabolevanie), can’t communicate, and don’t understand, for example, if you try asking them a question. These kids are the ones that have started going to the internat. Of course—everything's different. Everything's totally changed.

Note that Sergei was also trying out a new grammatical construction—that is, a person s invalidnost’iu, which translates to a person “with a disability.” Although this usage had started circulating in the activist literature, it was still unfamiliar to him. Sergei articulated the changing paradigm in this way:

There are different opinions. Because some people think that it's good when a person with special needs (s osobennostiami), um, well, with invalidnost’, yes with invalidnost’, when they send him to the mainstream school. And then he more or less adapts. It might be hard for him, or, maybe—well, he has to adapt somehow. And then there are those people who really take that perspective. But then some parents really are of the opinion that—what for? Because they think that, here in Russia (u nas), with our government (gosudarstvo), um … people have hardly seen people with invalidnost’, right? In our time it was even embarrassing to talk about it (stydno) [literally: stigmatic, shameful]. Um, they more or less didn’t talk about it. So, for that reason, well, parents have different opinions.

For himself, he felt most comfortable in these protected environments.

A person s invalidnost’iu—so say they take him in the mainstream school, right? And at that point, maybe they’re not even thinking about the fact that it might be really hard for him there. Um, because u nas, we, in the first place—well, we don’t hate people s invalidnost’iu, they don’t hate them, but they are somehow hidden away from society. So, because of that, it will only be with difficulty that they accept him at the … mainstream school.

[At the internat] there was a sense of stability. Yeah…. It didn’t seem like—for us it was joyful, life was interesting. We celebrated New Years together, and—um, there were holidays—creative projects, crafts, different kinds of concerts, dancing. Everything. We really had a full and satisfying life.

Sergei recalled his childhood at the internat fondly. He felt conflicted about the changing landscape of educational inclusion practices in Petrozavodsk. On the one hand, he recognized that his segregated school experience led him to identify as an invalid, separate from his broader peer group, but he could not imagine another way. On the other hand, in spite of all of the experimental programming, he had not succeeded in finding work as an adult, and he still lived with his parents with no plans to leave or marry.

Following high school, both Sergei and Alina participated in the first class of students to enroll in a charter initiative to establish the first inclusive course for people with disabilities at the local teacher's college. Sergei recalled:

And now, after high school, in 2007, right, in college they also organized an experimental group—of people with disabilities who participated in the coursework at Petrozavodsk Pedagogical College. And I ended up there, again, as part of the very first group, and it turned out that once again, it was an experimental situation, “What happens if people with disabilities get higher education?” And then after I graduated, the whole program was free for me, only of course, without the grant money, without the support for the project, of some kind. Because, [pause] in the college, the classroom was renovated for us, Schnitz, right, I think, a philanthropic something or other, from Germany, I think. So, they renovated, and then, from that point on, it just continued, only without support. There was—the college had invited specialized workers, they invited social workers, and—individual professionals who work in that sphere, with invalidy. And … they still work there. So, we still meet up, even after finishing college. We meet up every now and then, like three times a year. […] So … I went three years full time to college.

Sergei, Alina, and a few others in their group again took on the role of experimental subjects. The international support was provided by a Swiss grant-making organization that made it possible to renovate the first floor of the school and launch the program, which appeared to be a prestigious and progressive opportunity. For the students who went to the college as the first class of invalidy, however, the experience was challenging, socially strenuous, and offered mediocre results. Sergei's description, in particular, emphasizes the ways in which the move to offer degrees to people with disabilities was one of mandated desegregation. Sergei recalled the timbre of social interactions with peers as being stressful.

I asked Sergei about his thoughts regarding mainstreaming. He had talked with me previously about his conflicted feelings about the changes to the education system since he was in high school. Today, students with disabilities like his might go to a mainstream school, or more likely, complete high school through a distance learning program. Sergei's thoughts about attending a mainstream school were colored by the expectation that he would have been socially excluded if he had done so. He presented this information as a matter of fact, rather than as supposition, or as a reason for pity or self-pity. His perception was informed not only by dominant narratives but also largely by his experience attending college with nondisabled peers.

S: I haven’t had that experience, of going to the mainstream school, of getting tossed into the crowd (vlivat’sia v kollektiv). The only example I have is that in college, we had our cohort, and—I went to class with a group that—besides me, there were, I think three people s invalidnost’iu, and all the rest—we had thirty people—all the rest were zdorovye (normal/healthy).

So … I wouldn’t say that we had a friendly relationship. With these people. But, you could say that we were neutral in our attitudes towards one another. That is, people weren’t cruel, there wasn’t a sense of cruelty, there wasn’t really anything, and it also wasn’t friendly. It was just like a meeting. […] Maybe it's just that people when—I was already old enough to know what was going on, that you don’t necessarily have to have friendship, or else some kind of really close relationship. For me, what's really important is that—we are fine with one another (my adekvatno drug k drugu) … like, maybe we asked one another for advice on something, or once or twice called each other on New Years. Wished each other a happy holiday. But all the same, if it's nothing more than that, it's not the end of the world. Or—or else maybe it was just that all we had was three years together, and so, maybe if we had gone to school together for twelve years, then maybe, of course—wee-e-e would have gotten to know each other better. But this, just three years, it didn’t work out that way. But it's not too bad. The main thing is that—everyone acted more or less fine towards me.

C: [sad laugh]

S: Yeah…. And then, not everyone will be nice, you know? As much as they put up with you, it's pretty much certain that someone won’t like you for some reason…. so. But going to school [at the internat], I have good memories of that.

After university, Sergei took part in yet another experimental program with the Bureau of Employment. Incentives were offered to employers willing to take on an employee with a disability for a new position for a period of six months. The position was subsidized, so that the disabled worker was paid, at no expense to the hosting organization. Sergei did two such placements, and still has continued to work occasionally from home on projects for one of those organizations. He described the project:

I—I, well, like I said already, I am a subject for experiments. They’re doing experiments on me all the time. [laughs] So, this time, I ended up in this program. That at first I was with the employment agency (sluzhba zaniatosti), after I went to my studies at the college, the employment bureau ran a project (provodila aktsiiu), “Finding work for qualified young people” (trudoustroistvo dlia molodykh spetsialistov). After finishing my degree, for the period of a year, I think it was, I was supposed to find a job. During this time the employment bureau paid your wages. So […] the money came from the employment bureau, to that employer, and then to you. […] they were thinking about it in the sense that the employers would, after that first half year, start to pay your salary themselves. You see? After half a year they would begin to pay the invalidy money themselves. But—well, as it worked out, it didn’t work.

This project offered interesting possibilities. It allowed a government agency to subsidize NGOs and for-profit institutions if they applied to host a disabled worker. It helped Sergei and others gain valuable work experience. It failed, however, to result in meaningful employment: Although Sergei continued to do piecemeal work from home for one employer, he has not been employed full time or been able to work on site. Sergei asserted that he was glad he participated in the program; however, he was also clear that the program had not delivered all that it promised.

Sergei's narrative tell us several things. First, the segregated approach to primary and secondary education that this group, unlike younger generations, experienced has resulted in a situation in which they are unprepared to build friendships with their nondisabled peers, or their nondisabled peers are unprepared to build friendships with them. Second, the continually shifting profile of social services and climate of NGO culture left this group feeling like guinea pigs. The programming and practitioners were temporary, and efforts to create innovative programming in a shifting cultural field resulted in promises that never materialized. That is, the segregation of people with disabilities in school and in the workplace has continued to result in discriminatory practice.

These narratives also reveal important stories about the on-the-ground consequences of this third wave of post-Soviet NGO culture, characterized by the Russian government's crackdown on civil society and its reconsolidation of authority under the auspices of the state. How have and how will the efforts of the Russian government to limit the influence of foreign funders (specifically in democratization efforts) change the ways that people with disabilities receive services? NGOs across Russia have developed since the 1990s to support the civic needs and provision of social services to Russians with disabilities. As Meri Kulmala (2011) has observed, the boundaries between nonprofit and governmental projects in these kinds of local-level organizations have always been thin. Now, however, with less international funding available, nonprofits may be faced with fewer options other than merging or joining forces with government services.

When I met this group of interlocutors in 2012, they were taking part in a municipal art therapy group run by social workers. Unlike Felix's foreign-funded programs, the social workers tasked with running the art therapy group were not acquainted with independence discourse that placed primacy on doing simple tasks for oneself: As mentioned in the introduction, I was once even tut-tutted for suggesting that Vakas could take off his coat and mittens by himself. Instead, social workers were focused on encouraging the group participants to develop self-actualization (samorealizatsiia) and socially appropriate behavior (kul’turnost’), psychological markers of self-confidence and individual agency.⁴ This approach was based on sociologist Svetlana's findings that many young adults with disabilities were isolated and therefore lacked social interaction because of disability stigma. Svetlana had advocated for the city to take up programming to encourage social rehabilitation.

Sustaining Disability Politics Amidst Authoritarian Reconsolidation

The history of disability services during the immediate post-Soviet era created a particular kind of disability consciousness among the young people who frequented the Weekend School and their age-mates in Petrozavodsk. The framework of civil democracy and skills for self-advocacy proffered by internationally funded NGO projects in the early 2000s was coming to an end at the time of fieldwork for this book in the 2010s. Even as Putin's reconsolidation reshaped the landscape of disability services in Russian Karelia, the social imaginary of disabled interlocutors in the first post-Soviet generation was still being profoundly shaped by the frameworks of the earlier era.

As Sergei's narrative use of “guinea pig” or “subject of experiments” so vividly captures, the actual effect of the NGO culture in the 1990s and 2000s, while dynamic, in some ways resulted in instability. Sergei, Alina, Aina, and Vakas are part of a generation that came of age on the vanguard of the democratization and civil society wave. Thus, they often were offered the chance to be the first to utilize a given service or participate in a new program, which frequently were funded by and inspired by international organizations and models. In one sense, this put them in a privileged position—they were afforded opportunities to participate in society, to have active social lives, and to move through the city and attend college in ways that previous generations were not. Conversely, it also put them in a position that many other Russians would recognize from this period—that is, they were constantly participating in programs that then closed as funding dried up or they were promised results that failed to materialize as pilot project worked out the kinks. Frequently, when discussing the problems facing people with disabilities, my interlocutors, including people with disabilities as well as parents, social workers, and advocates, wished above all for a different kind of government.

As Sergei put it, when discussing a documentary he had seen about government support for jobs for adults with disabilities in the United States: “The [US] government has made that possible. And I had to sort of come to terms with that, that in principle, if people like that are able to hold a job, then I realized that to an extent I could [… but,] I’d have to find my way to a different government, because there I certainly would be able to find work. According to my strengths.”

At that moment in 2012, some interlocutors felt cautiously optimistic about the move on the part of the Russian government toward reconsolidation, imagining the strengthening of state social services as a legitimate response to a call from the citizens for a more functional government. This view was starkly different from standard Western readings of reconsolidation as a geopolitical power grab, and from diasporic leftist Russophone critiques of the so-called verticalization of power (variations on the phrase vertical’ vlasti is a widely popular way to refer in Russian to Putin's hierarchical centralization of power). Not all of my interlocutors experienced the 2012 changes hopefully. Putin's reconsolidation resulted in yet another shift in disability service provision and in the underlying politics of disability politics. As new state institutions launched art therapy pilot programs premised on the concept of social rehabilitation, Sergei and his cohort once again found themselves in this position as guinea pigs, this time at the mercy of the social workers instead of the NGO workers running disability programming. Civil rights and independence discourses were supplanted with self-confidence and self-actualization rhetoric, training disabled citizens to make personal psychological change rather than public political claims. In this way, the notion of what, precisely, disabled young people should understand from the phrase “I can do it myself” was reinterpreted: Rather than imagining themselves as democratic citizens making minority claims, they became neoliberal citizens, working on themselves.

Concepts of disability inclusion discourse moved into Petrozavodsk in the immediate post-Soviet period through democratization development projects, and it subsequently collided with the verticalization of Putin's reconsolidation of power. There was another important legacy of the Soviet era shaping the way that my interlocutors experienced daily life in the 2010s: the enduring infrastructure of the built environment and the codes and policies that shaped them. In the next two chapters, I turn to the inaccess stories that my interlocutors shared about public space and private homes.

In chapter 2, I explore the downtown center of Petrozavodsk as a built environment through the lived experience of disabled interlocutors and local civil engineers. For people with mobility impairments, especially wheelchair users, access to public space has been a major concern. Access ramps, with a gentle slope and handles, symbolize and facilitate wheelchair access. I consider how wheelchair ramps, as an architectural design element, move in friction as a global technology.