RICE UNIVERSITY

Needed Subjects: An Ethnography of the Formation of the Inclusion Complex in Russia

By

Svetlana Borodina

A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE

Doctor of Philosophy

APPROVED, THESIS COMMITTEE

James Faubion James Faubion (Apr 13, 2020) James D. Faubion Dominic Boyer Professor of Anthropology Professor of Anthropology

ZOë H Wool ZOë H Wool (Apr 13, 2020) Zoe Wool

Assistant Professor of Anthropology

Lida Oukaderova (Apr 13, 2020) Lida Oukaderova Lida Oukaderova

Associate Professor of Art History

HOUSTON, TEXAS May 2020 Table of Contents

ACKNOWLEDGEMENTS ...... 4 GLOSSARY ...... 7 DISABILITY-RELATED TERMINOLOGY ...... 7 RUSSIA-RELATED TERMINOLOGY...... 13 INTRODUCTION ...... 16 DISSERTATION OUTLINE ...... 16 RESEARCH METHODS ...... 21 MY POSITIONALITY ...... 24 UNIQUENESS OF BLINDNESS AS A FORM OF SOMATIC DIFFERENCE ...... 27 BRIEF HISTORY OF BLINDNESS IN RUSSIA ...... 33 BRIEF HISTORY OF DISABILITY IN RUSSIA ...... 41 DISABILITY TODAY, INCLUSION TODAY ...... 50 Oleg ...... 51 Misha...... 53 Volodya ...... 54 Zhenya ...... 54 Stepan ...... 55 Tania ...... 56 Masha ...... 56 CONTRIBUTION TO ANTHROPOLOGICAL CONVERSATIONS ...... 58 PART I THE INCLUSION COMPLEX ...... 64 CHAPTER 1 A POSTSOCIALIST JOURNEY OF INCLUSION ...... 65 INTRODUCTION: WHEN INCLUSION TRAVELS ...... 65 INCLUSION AS ACADEMICS KNOW IT ...... 74 DISABILITY INCLUSION ...... 82 INCLUSION’S POSTSOCIALIST HOME ...... 90 SOCIAL INCLUSION OF PEOPLE WITH DISABILITIES IN RUSSIA ...... 99 CONCLUSION ...... 101 CHAPTER 2 INCLUSION PHANTASMAGORY ...... 102 DISABILITY AND FAILED SCANDAL ...... 107 AESTHETICS OF DISABILITY REPRESENTATION ...... 115 SOVIET AND POST-SOVIET REPRESENTATIONS OF DISABILITY ...... 121 Horror ...... 122 Neglect ...... 127 Sorrow ...... 128 Internaty ...... 131 Post-Soviet Forms of Rejection ...... 135 AESTHETICS OF INCLUSION ...... 138 INCLUSION PLOTS ...... 146 HOW FAR DOES INCLUSION TRAVEL? ...... 161 CONCLUSION ...... 165 CHAPTER 3 THE INCLUSION COMPLEX ...... 167 INTRODUCTION ...... 167 VALUE CIRCULATION AND VALUE CONVERSION ...... 171 THE COMPLEX: DIFFERENT ACTORS ...... 175 The state ...... 175 Private business ...... 182 Nonprofit organizations ...... 189

2 Volunteers ...... 193 Researchers ...... 197 THE INCLUSION COMPLEX ...... 197 Military-industrial complex ...... 198 Medical-industrial complex ...... 199 Prison-industrial complex ...... 200 Nonprofit-industrial complex ...... 202 Inclusion complex ...... 203 CONCLUSION ...... 206 PART II WHITE CANE ...... 207 CHAPTER 4 NEEDEDNESS: THE CULTURE OF INCLUSION ...... 209 IT IS NOT ABOUT POLITICS, IT IS ABOUT CULTURE ...... 210 SCENE 1 ...... 216 SCENE 2 ...... 220 SCENE 3 ...... 223 VALENCES OF NEEDEDNESS ...... 227 CONCLUSION ...... 234 CHAPTER 5 HARD FEELINGS ...... 239 INTRODUCTION ...... 239 HARD FEELINGS ...... 244 FEELING ‘IT’ ...... 251 INCLUDE YOURSELF ...... 258 REFIGURING AFFECT ...... 260 ROUND TABLE ...... 264 HOW TO CHANGE PEOPLE? ...... 269 CONCLUSION ...... 278 CHAPTER 6. TRUST ISSUES ...... 280 WAYS TO CREATE PROBLEMS ...... 282 TRUST IN ACADEMIC LITERATURE ...... 289 PHENOMENOLOGICAL APPROACHES TO TRUST ...... 291 EMBODIED DIS/TRUST ...... 294 FALLING INTO TRUST ...... 297 HISTORIES OF TRUST ...... 302 EXPERTS OF TRUST ...... 303 CONCLUSION ...... 305 CHAPTER 7 ON LIVELINESS ...... 307 INTRODUCTION ...... 307 CONCEPTUAL FRAMEWORK ...... 308 THE OVERMEDICALIZATION OF BLINDNESS ...... 310 FORMS OF LIVELINESS ...... 324 CONTAGIOUS LIVELINESS ...... 343 LIVELINESS THROUGH DWELLING ...... 349 BROADER CLIMATE OF POLITICAL AND CIVIC PARTICIPATION ...... 355 CONCLUSION ...... 363 CONCLUSION ...... 364 BIBLIOGRAPHY ...... 368

3 Acknowledgements

This research wouldn’t have been possible without my interlocutors in the field who welcomed me into their lives and helped me explore the forms inclusion takes and fails to take in Russia. They showed me the embodied need for inclusion and its urgency, as well as its constant failure and yet energizing impulse. For their generous and open hospitality, I cannot thank them enough. This project has received generous support from multiple sources, namely, the Mellon/ACLS Dissertation Completion Fellowship, the Wenner-Gren Foundation, the Social Science Research Council, Rice University’s Center for the Study of Women, Gender and Sexuality, the Center for Critical and Cultural Theory, the Social Sciences Research Institute, and the Department of Anthropology, for which I am ever so grateful. I am greatly indebted to the faculty members of Rice’s Department of Anthropology for guiding me through what initially felt like a completely alien and foreign field of cultural anthropology in U.S. academia. They taught me what ethnographic imagination and anthropological curiosity are. From them, I learned that academic endeavors take commitment, rigor, gargantuan patience, and an open heart and mind. And most importantly, they never made me feel small. In particular, I would like to express my heartfelt gratitude to the members of my dissertation committee. To James Faubion, whose generosity, kindness, and unfathomable breadth of knowledge and depth of thought guided me through the moments of scholarly confusion and uncertainty, from the early beginning to the very end. To Zoë Wool, whose sharpness and dedication to students helped me become a better scholar, academic, and teacher. I thank her for her invaluable advice and feedback that oriented me in the confusing world of new scholarly fields and the ruthless academic job market. To Dominic Boyer, whose professionalism, reliability, patience, and immense help made me a better writer and thinker, whose willingness to read over and comment on tons of applications helped me understand how much work goes into even the shortest form of academic expression. To Lida Oukaderova, who agreed to serve on this committee and expressed support of this project with generosity and openness. To Tomas Matza, whose work taught me a lot about caring and subtle forms of engagement with emotionally complex, analytically challenging, and politically inscrutable moments in and about Russia. Although she is not a member of my committee, I express my gratitude to the Department’s Chair Nia Georges, whose warmth, generosity, and support helped me move forward with this project and my studies as a graduate student at Rice; who showed me that care, kindness, collegiality, and generosity are fundamental. I also thank the Department’s staff—Altha Rodgers and Addison Verger—for their reliability and kind guidance through the bureaucratic mazes and the complexity of life in general. In particular, I want to express my gratitude to Altha Rodgers, who demonstrated to me what professionalism, competence, and kindness look like in their purest form. I am forever indebted to my fellow graduate students, friends, and my community here in Houston and Austin and other parts of the world. Graduate school has not been easy, but all of them made me love it fiercely. They were and are my family on the North American continent. They have been there for me in the moments of laughter, boredom, stuckness, pain, tears, insecurity, mental struggle, victories, (repeated) rejection, even the pandemic. Without them, I would not have finished. They helped me move on, move in, move out, and move, in general. To Than Vlachos and Rachel Schneider, the first people who greeted me in Houston in 2013 as an applicant to the program and who welcomed me in their home; who briefed me, a

4 foreigner with limited knowledge about U.S. academic rituals, on the fundamentals of an introvert’s survival of the interview weekend extravaganza. To Jing Wang, my first roommate and dear friend in Houston, who challenged my worldview and astonished me with great elegance of thinking and being more times than I would ever be able to count. To Víctor Giménez Aliaga, for every moment of support he gave me. To Ellie Vainker, for lending me a hand always, for acknowledging every bit of work that goes into faring through graduate school, for being a настоящий друг whose impact on my life is impossible to overestimate. To Ashley Mog, a dear friend and roommate-at-some-point, who taught me early on that resilience, hard work, and care take one far, whose ideas and actions regarding disability and difference taught me more than mountains of books. To Helena Zeweri, for her exemplary work ethic and fascinating analytical abilities, for serving as an exemplar, for pushing me to chase the impossibly high bar she set by her example for our department and the discipline of anthropology altogether. To Baird Campbell, for being there for me at all times, for sharing the walk along the post- field path, in particular, and for building my vocabulary. For being that friend with whom, as my favorite Soviet cartoon goes, it is always interesting and never too cramped on the narrowest path. To Victor Ancheta, for welcoming me post-fieldwork in his home, as I was only half-able to speak English and rusty in American courtesy rituals, for making my transition back to writing smooth and enjoyable, for moments of warmth and support, for never judging. To Charlie, Jenny, and Ruby Lotterman, friends who welcomed me in their home amid the pandemic, who were there for me in Austin before and after the challenging times, whose warmth and maturity kept striking me all along. To Charlie, in particular, for reminding me about the joy that good writing and unconventional ideas can bring. To Magnús Örn Sigurðsson, for helping me deal with more problems, prejudices, and insecurities, academic and personal, than I would ever acknowledge. For talking through messy and unformulated thoughts and helping me make sense of things that seemed impossible. For making a choice between baking a basketball-shaped cake and spending more time on assignments a no-brainer. To Sólveig Ásta Sigurðardóttir, for stimulating my critical thinking and never settling on easy solutions, for the immense power and brilliance hard-earned and so elegantly carried, for a deep commitment to justice in the biggest and smallest things, and for checking in, when things were horrible and when I felt I was soaring high. To Yifan Wang, for her sincere, sharp, and generous engagement, intellectually and personally, for standing her ground strong and teaching me what the commitment to excellent scholarship and uncompromising integrity is, for speaking her truth and making me think deeper. To Katie Ulrich, for consistent support when times were lonely and writing was painful, for allowing me to witness the piercing power of good ideas and the labor that goes into making them such, for remining me that everything is under control, however messy it may feel. To Mel Ford, for persistence in moving forward and for her fascinating ability to be built anew. To Gebby Keny, whose uncontainable creativity, passion for novelty, and analytical nuance, as well as expertise in running, prevented me from staying within the lazy comforts of the known and familiar. For shared moments of existential angst and unstoppable laughter, in both the glass prison and the place where phoenixes are reborn.

5 To Tim Quinn, for bearing the lightness and weight of being with fascinating commitment and utmost respect, for wild stories, for laughs and venting, for the talent to make even the most challenging projects seem feasible. To Konstantin Georgiev, for proving me wrong, for following up, for sticking to his word, for genuine curiosity, for letting me feel that somebody’s got my back day and night, no matter how far apart we are. To Laurin Baumgardt, for revitalizing my interest and curiosity in other people’s thought, in the midst of my intellectual exhaustion, for incredible hospitality and warmth, for the courage of driving into Texas’ darkest skies and heaviest rain with a loosely attached bike on the rack toward a new city and a new life. To Mark Vardy, for showing what life before and after the Ph.D. can be, for generosity and commitment, in the face of challenges, inconveniences, and struggle. To Evgeniya Mikryukova, for leading me by example, through all these years, with no interruption, from different continents and time zones, for tolerating my crumbled thoughts and fast judgments, for immense dignity, for making me sure that we will remain friends until the very- very-end. To Alize Arıcan and Simon Wiener, for filling my last year of writing with joy and appreciation of life, for pulling me out of deep wells of misery, multiple times. To Alize, in particular, for showing me what brilliance and resilience are; for her generosity and startling ability to build thriving social worlds and make anthropological scholarship matter. Finally, last but certainly not least, I owe a debt that is impossible to ever repay to my family in Russia, especially to my mother and my sister. For their strength and support. For their ability to live half a world apart and remain closer than anyone else. For being my role models. Without their sacrifices, resilience, and unconditional love, I would not have arrived here or anywhere even remotely close. I know what unconditional love is because of them. To every one of you, thank you.

6 Glossary

Disability-related terminology

In disability-focused research, labels matter. Thus, in this section, I provide a brief overview of conceptual differences pertinent to disability in the field of anthropology of disability and disability studies. In addition to providing my readers with a fuller understanding of the stakes and terms of the conversation, I also seek to identify my commitments and justify my terminological choices.

In anthropological research, disability marks a socially and culturally constructed category of otherness (Kasnitz and Shuttleworth 2001a) that is tightly connected to culturally-specific metrics of somatic and psychic normalcy (Ginsburg and Rapp 2013). As Lennard Davis contended,

“the idea of a norm is less a condition of human nature than it is a feature of a certain kind of society” (L. Davis 1995, 24), that arose at a particular historical moment. The hegemony of normalcy, statistics, and the belief in the power of rationalized governance created multiple effects, among which are eugenics, exploitation of pathologized subjects, their socially and politically justified abandonment, exacerbated forms of racism, colonialism, sexism, ableism, and other forms of systemic discrimination.

One of the foundational distinctions in matters regarding disability—that has been substantially critiqued by now—is the distinction between impairment and disability, as it emerged from the social model of disability. In 1976, the Union of the Physically Impaired Against

Segregation (UPIAS) in the UK published Fundamental Principles of Disability, where this distinction was clearly drawn: “in our view, it is society which disables physically impaired people.

Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society” (UPIAS 1976, 3). The social model of

7 disability that grew out of disability activism in the UK and then spread globally to become a powerful tool of disability activism operates with the concept of disablement, which stands for the effects of environmental failure to support some bodies. If impairments, in this lexicon, reside in individual bodies as injuries, marked bodily differences, or functional variations, disability is squarely located in exclusionary social attitudes, designs of the built environment, and institutional failure to accommodate a broad range of human bodies and mentalities (Kasnitz and Shuttleworth

2001b; Kulick and Rydström 2015; Rusch, Pfeiffer, and Devlieger 2003). Practically speaking, the social model of disability prompts researchers to focus on socioeconomic inequalities and unequal distribution of resources in society, to explain the exclusion of people with disabilities and their diminished social opportunities. In this vein, such an approach calls for an intervention into social institutions, built environment, and cultural context, to improve the wellbeing of people with disabilities.

Although it was acknowledged that the social model of disability has brought about substantial political changes and has challenged the tendency to anchor the problem in individuals with disabilities (Shakespeare and Watson 1997), it also received sharp critique. First, scholars argued that academic scholarship should take corporeality (Csordas 1993) and somatic experiences of pain and impairment more seriously as not all disablement is located in the social (Jones 2016;

Honkasalo 2001; Patsavas 2014; Price 2015; Wendell 2001), some impairments do bring about functional limitations and unpleasant experiences that can hardly serve as a source of value and community. Second, given that medical categories and markers of bodily difference are not objective or independent of researchers’ cultural, socioeconomic, or political biases (Martin 1991), it becomes hard to sustain the clear-cut distinction between the socially constructed disability and the allegedly biologically rooted impairment (Ginsburg and Rapp 2013). Additionally, social attitudes and societal factors often can exacerbate existing impairments or create new ones

8 (Shakespeare 2004), which makes the distinction between them even more blurry. Third, scholars have also called into question the clear-cut distinction between “disabled” and “nondisabled”

(Shakespeare and Watson 1997). As a result of historical developments, disability has grown to become a source of identity. Put differently, “disabled person” often stands for owning one’s disability and making it the core of one’s political identity and organizing. The problem emerges on several fronts, here: (1) not all people with disabilities identify as disabled, preferring not to center disability in their lives; (2) disability is a profoundly relational and context-dependent category (Garland-Thomson 2011; Ginsburg and Rapp 2013; Kulick and Rydström 2015), which does not necessarily materialize in a similar fashion across extended periods—in other words, some people may feel disabled at one moment and feel differently later.

Such conceptual baggage prompted some scholars to elect a different central category for their analysis that would capture body and mental vulnerability in the face of their environment— the category of debility (Livingston 2005; D. T. Mitchell and Snyder 2015; Puar 2017). Julie

Livingston used debility as a marker of “the frailties associated with chronic illness and aging and as the impairments underlying the word disability” (Livingston 2005, 6). Her research focused in particular on physical impairments that are understood to be a misfortune, without making an argument that all bodily differences are such. For her, debility is an umbrella concept that embraces both impairment and disability, a concept that embraces both the somatic and the sociocultural aspects of such experiences. Additionally, she points at the conceptual baggage that the concept of disability carries and cautions the reader to be careful not to smuggle alien meanings to contexts of different histories and social textures.

Deriving inspiration from the work of Gilles Deleuze and Félix Guattari, Jasbir Puar (2017) urges her readers to think about disability and debility in the framework of imperial and capitalist expansion. She unearths layers of privilege that have produced the concept of disability in the

9 Northwest as a potential source of pride and value and counterposes it to the concept of debilitation. She writes, “the biopolitical distribution between disability as an exceptional accident or misfortune, and the proliferation of debilitation as war, as imperialism, as durational death, is largely maintained through disability rights frameworks” (Puar 2017, 66)—those frameworks depoliticize injuries and isolate them from the deadly operations of global war and work machines that directly cause these injuries in the first place. Additionally, Puar vehemently refuses to interpret injuries as rooted in ontological contingency. Such a perspective, according to Puar, ignores systematic, massive, and insidious ways in which the politics of debilitation “[renders] some populations as definitively unworthy of health and targeted for injury” (Puar 2017, 68-69).

Thus, when thinking about disability and debilitation, it is imperative to account for the forces of colonialism, racism, poverty, war, imperialism, sexism. Such an account would avoid the privatization of injury and offer a systemic critique of extractive and exploitative complexes that intentionally produce injury in some and provide spectacularized support to others.

A comment must be made regarding the different constructs— “people with disabilities” and “disabled people”—which I use interchangeably here. In English, “people with disabilities” is an example of the person-first language which does not attribute definitive significance to disability and instead seeks to emphasize the similarity between people with and without disabilities. In essence, they are first and foremost persons. “Disabled person,” on the contrary, connotes the fundamental significance of disability as a definitive framework, as a formative experience, and as a source of identity, pride, and community in one’s life. Additionally, it points to the fact that disability is an environmental effect, a result of an action of disablement. Here, disability is not located in individual bodies but instead is caused by the inability of the built environment to support nonnormative bodies. Among my interlocutors, this distinction did not emerge as salient. Hence, I choose to use both labels interchangeably.

10 During fieldwork, I came across several labels that, in different ways, connoted a person with disabilities. Although below I translate them, I acknowledge that it is only an approximate translation as the semantic and affective profiles of these concepts do not overlap entirely.

Russian terms for people with disabilities are diverse. There are various ways to refer to a person with disabilities, each charged with its own history and each carrying its own set of connotations. One of the most neutral and, at the same time, clear way to refer to a person with disabilities is to use chelovek s invalidnost’yu [a human/a person with a disability]. Although any

English-speaker would notice an obvious connection to the English word “invalidity,” Russian invalidnost’ cannot be translated as invalidity, for it does not carry similar derogatory overtones.

Instead, invalidnost’ is more closely aligned with the semantic and affective cluster associated with

“disability.”

There are several other options of politically correct labels—chelovek s ogranichennymi vozmozhnostyami zdorov’ya [a human/a person with limited opportunities of/possibilities of health] or its shortened but slightly different in meaning spinoff chelovek s ogranichennymi vozmozhnostyami [a human/a person with limited opportunities/possibilities]. These labels appear formulaic, long, and confusing. They are mostly used in official contexts and by people particularly careful to avoid the word invalid’nost’ [disability] altogether, by which they only reproduce the stigma (Goffman 1963) associated with disability. Some people feel comfortable using osobennye or osobye [both words stand for ‘special’], especially if they are talking about children with disabilities. In my fieldwork and further writing, I avoided the use of special and people with limited opportunities/possibilities for I find them euphemistic and entrenching negative connotations associated with disability. When I speak in Russian about people with disabilities, I default to chelovek s invalidnost’yu for its reasonable clarity and direct engagement with disability.

11 A shorter term, invalid, was in circulation and frequent use among my blind interlocutors, for they found it more concise and did not subscribe to the negative value system underlying this term. They used it in a way similar to how crip theory (McRuer 2006) reappropriates the previously derogatory term crip (or cripple) (see also Linton 1998). Nondisabled people would seldom use this term unless they intentionally used it as a derogatory term. Although there are other derogatory terms regarding people with disabilities—kaleka [cripple], for example—I did not come across them during fieldwork. Throughout this dissertation, it is safe to assume that in place of “a person with disabilities” or “a disabled person” my protagonists used chelovek s invalidnost’yu or chelovek s ogranichennymi vozmozhnostya’mi zdorov’ya or chelovek s ogranvhennyami vozmosnostyami. These choices signaled to me their careful attitude concerning their use of language and labels. If another term was used, I point out which one it was, what the conditions of this contextual use were, and what effects this use produced.

If in English, “blind” is an acceptable word that is close to an affirmation of a positive identity associated with blindness, its Russian analog slepoy or slepaya does bear stigmatizing connotations. A more neutral way to refer to blind people was nezryachiy (blind, male) or nezryachaya (blind, female), which stands for non-seeing. The use of these labels depended on the context, the person who was using them, their intention, and their audiences. The majority of my blind interlocutors used slepoy or slepaya [blind] without attributing it derogatory overtones. The simplicity of the word and its straightforward reference to blindness appealed to them. As a sighted person, I would avoid using slepoy or slepaya, especially in formal settings or with unfamiliar people, trying to avoid reproducing the hegemonic symbolic system that devalues their form of embodiment. More careful language users may sometimes choose to use chelovek s ogranichennymi vozmozhnostyami po zreniyu [a human/a person with limited opportunities of/possibilities for vision] or chelovek s invalidnost’yu po zreniyu [a human/a person with a visual

12 disability]. While many people cringed at these labels because of their length and seemingly unnecessary sonic and semantic complexity, others used these labels exclusively to avoid the pitfalls of the dangerous language through which users reproduced internalized ableism. On the other hand, with the development of the inclusion complex in Russia, new experts emerged who policed the language and the use of labels deemed appropriate or not.

Russia-related terminology

In this dissertation, I use various qualifiers to characterize the historical moment in Russia after the dissolution of the USSR on December 26, 1991. Depending on the aspect I need to emphasize, I juggle between several terms: post-Soviet, postsocialist, Putin-era, or contemporary.

These terms are not interchangeable, and thus their choice warrants an explanation.

One of the fifteen republics of the USSR, Russia had the first-hand experience of being part and parcel of the Soviet identity and Soviet legacy. This positionality often justifies the use of

“post-Soviet” in place of postsocialist, which, in turn, is more commonly applied to contexts that have been part of the socialist world more broadly. The usefulness of “postsocialist,” however, has been contested as the very analytical power and value of this term have been widely debated.

Nancy Fraser (1997) used postsocialism to capture the condition of the world “after socialism.” In her rendering, the collapse of state socialism had a dramatic effect globally—it immobilized and temporarily prevented the possibility of socialist critique of capitalist systems and also partially led to the diminished significance of socioeconomic analysis of structural inequalities, for the benefit of cultural analysis of diverse symbolic forms. The postsocialist condition, for Fraser, is “an absence of any credible overarching emancipatory project despite the proliferation of fronts of struggle; a general decoupling of the cultural politics of recognition from the social politics of redistribution; and a decentering of claims for equality in the face of aggressive marketization and sharply rising material inequality” (Fraser 1997, 3). Postsocialism

13 thus configured is not particularly anchored in specific geographic contexts but instead manifests itself as the weakened presence of progressivist critique, the shift of attention to cultural analysis, and the impossibility of collective claims.

Martin Müller (2019) does not share Fraser’s assumption about postsocialism’s planetary significance—here, he agrees with Tajana Thelen (2011), who claimed that anthropological analysis of postsocialism had little impact on broader conversations in the discipline. Instead,

Müller bids adieu to postsocialism as a concept as he sees low value in its use—the concept lost its efficacy and needs to be abandoned. Müller identifies five problems with the concept: (1) postsocialism refers to a vanishing object—that historical period to which it was referring to is passé; (2) it privileges one event—the dissolution of the USSR—as the primordial rupture of elevated and unprecedented significance; (3) postsocialism falls into a territorial trap—the concept was tightly connected to certain territories—those of the countries of the former socialist bloc; (4) it is a Western concept that has little purchase in the contexts it tries to analyze; (5) it constraints options of political futures (can we have socialism after postsocialism?).

Other scholars expressed their resonant critiques. Douglas Rogers (2010) remarks the incongruence between the contemporary complexity of the world and the territory-bound concept of postsocialism (here, Müller’s point 3 is close to Rogers’s argument). Rogers suggests moving away from the transition studies’ anchoring of postsocialism and instead, rework postsocialism to address issues and contexts beyond the imagined borders of the former socialist bloc.

Sharad Chari and Katherine Verdery (2009) have explored the relationships between postsocialism and postcolonialism. Compared to postcolonialism, they defined postsocialism as first and foremost a temporal marker: “‘Postsocialism’ referred to whatever would follow once the means of production were privatized and the Party's political monopoly disestablished” (Chari and

Verdery 2009, 10–11). To salvage the concept’s utility and power, they suggest that the critical

14 potential of postsocialism is in tracing social and spatial reverberations of the Cold War in configurations of power and knowledge, without falling into arresting critique of possible socialist futures and socialist pasts.

I use post-Soviet and postsocialist in this sense. If post-Soviet is mostly a temporal (post-

1991 in particular) marker in my narrative, postsocialist refers to issues that transcend the temporality and geography of Russia’s presence. I use it to speak about matters potentially resonant with contexts that have had an experience of state socialism in one way or another.

In writing about post-2000 Russia, some scholars (Lemon 2008; Hemment 2015) use a reference to President Vladimir Putin to capture a significant feature of the contemporary moment of Russian history. Such a marking shifts the reader’s attention to the significance of the figure of

Russia’s President, who has become fetishized domestically and internationally. One of the goals of this dissertation is to show a way of understanding Russia more complex and nuanced than determined by the rule of President Putin. Although I do define the contemporary regime as authoritarian neoliberalism, I seek to distance my work from the obsessions over the figure of the

Russian President and instead show the internal complexity and multifaceted agency of various actors involved in the formation of the inclusion complex.

Finally, some authors use contemporary or new as a qualifier (Bernstein 2016; Henderson

2003; Höjdestrand 2009; Caldwell 2004). This choice demonstrates their focus on the ruptures and new forms of sociality and sociopolitical organization, as opposed to attention to the reverberations of the Soviet and socialist projects in the present moment. I use either of these qualifiers to connote principally new forms of life and in situations when I emphasize the unique political, sociocultural, and economic constellations within the bounds of Russia.

15 Introduction

Dissertation outline

I grew up in a neighborhood of Yekaterinburg (my main field-site) marked with the signs

“Caution, blind person in area.” In the twenty-one years that I spent there, I had never seen a person with a white cane on the street. Not once. I passed by their sheltered workshop and dorms almost every day on my way to and from my primary, middle, and then high school. My music school, which I attended five days a week for at least nine years, was located two blocks away from the special library for the blind.

Fig. 1, special library for the blind in Yekaterinburg, https://images.app.goo.gl/nSKbMokdpPr8QUKZA

I used the sonic traffic light at the major intersection by their sheltered workshop and dorms every day, multiple times a day, as I would go to my music school and return home from there. Still, I had not seen one person I would visually identify as blind. My understanding of blind people was based on these ghostly presences (see also Navaro-Yashin 2012)—I saw the marks of the old infrastructure laid out for them in this part of town, watched films and cartoons that featured blind characters as beggars or tricksters, read stories and novels about the tragedy of blindness and the

16 nondisabled people’s obsessive fantasies about extrasensory abilities that blind people allegedly possessed. I also heard about the Soviet mastodon All-Russia Society of the Blind1. But I never had a chance to share a space or interact with a real blind person.

This dissertation is about the social liveliness of blind people in Russia and the efforts of a group of blind people to cultivate this liveliness—of blind and differently disabled people— in

Yekaterinburg and other urban areas in Russia. When I returned to my hometown to conduct fieldwork, I saw a few blind people on the city streets going somewhere by themselves. Not in my neighborhood, which still was the location of the special library and one of their workshops, however. By the end of fieldwork, I knew the majority of those who walked in the city with a white cane. Not because I was such a prolific fieldworker (which I hope I was), but because although there were relatively more blind pedestrians on the streets, they were still too few. The limited number of independent blind walkers was connected to inadequate training accessible to blind citizens, low cultural expectations for blind people to travel independently, and substantial problems with the accessibility of my hometown. Those independent travelers that I got to know— men and women from sixteen to sixty-seven years old living in different parts of town and out of town—were united by a strong desire and ability to pull themselves up by their bootstraps from the otherwise probable progression to a range of zones of social abandonment (Biehl 2005). These people became my guides into the emerging ideologies and practices of inclusion as they

1 Here and throughout this dissertation I translate the biggest organization of the blind in Russia – Vserossiyskoe Obshchestvo Slephykh – as All-Russia Society of the Blind. On various occasions, I have come across a different translation – All-Russia Society for the Blind. The Russian phrasing signals belonging to whom and being composed of whom. To be able to be translated as “for the Blind” there needs to be an additional preposition – dlya [for] – which is absent in the name of the society in Russia. Using ‘for’ would change the meaning, too: Of the blind means that it is a society composed of blind members and a society that belongs to blind members; for the blind would mean that it is a society that functions for the benefit of this social group, yet no information would be given who is the subject in providing this good. VOS’s historical documents and my conversations during fieldwork demonstrate that the society’s pride and self-concept emanates from the ability of its blind members to take control and develop a significant infrastructure that would enable them to contribute to society. Thus, I am inclined to emphasize that it is the society of the blind, rather than the society for the blind.

17 mushroomed in Russia after its ratified the United Nations’ Convention on the Rights of Persons with Disabilities in 2012.

The development of the social inclusion of people with disabilities has become my blind interlocutors’ professional goal and ethical commitment. It is through their interest in changing cultural ideas and social practices around disability that I turned my attention to the emerging domain of inclusion. In different kinds of disabilities, including blindness, they saw a source of high resilience and specific skills that develop as a result of ongoing adjustments to live well in a world built by the nondisabled for the nondisabled. I witnessed support, indifference, resistance, partial commitment, and ambivalent disapproval that my blind interlocutors and their sighted allies encountered as they sparred with the deeply ingrained cultural idea that disability means inability, failure, poverty, suffering, and immobility. In a sense, this dissertation documents the struggles and victories of an attempted social and cultural change—away from the segregationist politics of disability based on the assumed incompatibility of social life and disability toward an inclusionist orientation directed to the liveliness of people with various kinds of differences, some of which, including disability, have historically been pathologized.

This dissertation argues that the arrival of the international mandate of inclusivity to Russia has been immensely productive. I capture its productivity with the concept of the inclusion complex. In other words, I argue that the adoption of the vocabulary of inclusivity and the implementation of the respective legal changes went hand in hand with the production of a domain of knowledge and subjectivities as well as channels for value circulation. Within this new domain, new forms of expertise emerged, new figures and new relationships were cultivated. In addition to observing inclusion’s productivity, I also found how inclusion morphs and spills out, challenging any attempts to have it compartmentalized and contained within the domain of a “good disability policy.” Although in Russia, inclusion is most prominently and straightforwardly understood and

18 dealt with as the social inclusion of people with disabilities (not any other minority group), I show how it nevertheless operates at the broader level of social ontology and axiology. By employing actors from diverse and divergent backgrounds and commitments, the inclusion complex affects the performance and formation of state-owned corporations, international connections, religious experiences, moral lives, practices of self-formation, healing regimes, work cultures, educational standards, and protocols of care for the self and others. Even though it is presented as being about disability, the work of the inclusion complex reconfigures the social fabric altogether, changing its distinct domains and fundamental terms.

To make this argument, I organize this dissertation as follows. The introduction provides some context that I hope will further facilitate my readers’ comprehension of the broader environment in which the inclusion complex has been growing as well as my positionality as a researcher of Russia’s inclusion complex. Specifically, I provide a brief overview of the histories of disability and blindness in Soviet and post-Soviet Russia, situate blindness as a form of embodiment within the broader spectrum of bodymind conditions that fall under the category disability, and critically reflect on my observational and analytical positionality. Finally, I situate this project within broader anthropological conversations, to highlight its disciplinary and more general significance.

Chapter One outlines inclusion’s spread in Russia, the beginning of which I connect with

Russia’s ratification of the United Nations’ Convention on the Rights of Persons with Disabilities.

Without a fixed definition or a manual, in the form of a moral imperative, disability inclusion landed in an already complex ecosystem where different ideas about disability and community circulated. Additionally, I review existing critical scholarship on inclusion, intending to show the internal complexity of this concept and familiarize the reader with inclusion as it emerged as an object of critical scholarly inquiry.

19 Chapter Two explores two aesthetic configurations, counterposed to each other—the phantasmagory of disability as scandal and the phantasmagory of inclusion. I argue that the inclusion complex that has been in formation in Russia since the early 2010s is driven by the desire to dissociate itself from the phantasmagoric representation of disability as a proxy for scandal or social disruption, which has congealed historically with the help of various aesthetic tropes and recurrent plots that have stuck to disability over the years. I show the material reality that underlies the phantasmagory of disability as scandal and how these material conditions come to be ignored, thus further entrenching the identification between disability and social disruption. Then, I explore how my interlocutors in the field took the emergence of inclusion as a prompt to create a new phantasmagory, whereby disability would be configured instead as compatible with the labor market and nondisruptive—the phantasmagory of inclusion. I call this aesthetic complex a phantasmagory because of its mixed fictional and nonfictional elements and because of the work of hiding the conditions that make these images of successful and included people with disabilities possible. The phantasmagory of inclusion drives the operations of the inclusion complex as a hardly-ever-achievable ideal.

Chapter Three takes a closer examination of the heterogeneous actors recruited within the inclusion complex. Driven by different agendas, they generate and circulate different kinds of values associated with inclusion. It is through this circulation that the inclusion complex maintains itself, despite its ultimate failure to deliver the materialization of the inclusive world as it has been imagined and desired. This chapter shows the reader the plurality of agential forms and positions involved in managing inclusion, exposing the groundlessness of the assumption about the utmost importance of the state in the lives of people with disabilities in Russia.

Chapters Four, Five, Six, and Seven zoom into a conceptual and practical formation within the inclusion complex—the one organized by and around White Cane, a network of my primary

20 interlocutors. Among other participants of the inclusion complex, they have served as theorists and practitioners of inclusion, engaging diverse social groups and dialogically improving and reconceptualizing inclusion. Their understanding of inclusivity and inclusion is unique, and I outline the four fundamental concepts pivotal to their work in these four chapters: being needed

(chapter four), vkluchenie (chapter five), trust (chapter six), and extrabilities (chapter seven).

Together, they present a distinctive social ontology, postsocialist in its nature and expression.

Observing the example of my interlocutors’ conceptual and practical work with the concept of inclusion, I demonstrate how inclusion morphs from inclusion as the social inclusion of people with disabilities into inclusion as an appreciation of difference that bypasses the liberal values and ideologies of disability rights, equality, and individualism.

Research methods

I collected materials that inform this dissertation between 2014 and 2019. I conducted two preliminary trips to Yekaterinburg, Moscow, and Saint-Petersburg in the summers of 2014 and

2015. My major fieldwork took place between September 2016 and January 2018. Throughout

2018 and 2019, I stayed connected to some of my key interlocutors—friends, really—through

WhatsApp, email, and Facebook. I visited them during my follow-up trips in 2018 and 2019.

Fig. 2. Yekaterinburg, Russia

21 My major fieldsite was located in Yekaterinburg, the fifth-largest urban center in Russia and the capital of the Sverdlovsk region. In 20172, 272.074 people with disabilities registered in the Sverdlovsk region, 15% of which had group 13, 42% qualified for group 2, and 43% for group

3. The overwhelming majority of this number—62%—were people older than 60 years old. The gender distribution was as follows (granted that this binary division was the only available metric for identification): 55% identified as women, 45% as men. 84,6% developed their disability as a result of an illness; 11.7% were disabled since childhood; 1.2% were disabled as a result of an injury acquired at work; 0.7% at military service; 0.6% at war; and the remaining 1.1% listed the cause of their disability as “other.”

In 20134, the Sverdlovsk branch of All-Russia Society of the Blind (hereafter, VOS) had

7091 registered members, which does not necessarily neatly correspond with the number of people with registered sight-related impairments (membership at VOS is voluntary). And yet, of the registered VOS members, 46% had group 1, 41,7% had group 2, 5,6% group 3, the remaining

6,7% were either sighted members or legal guardians of blind members. Sverdlovsk region hosted two special schools for the blind, four sheltered workshops (two of which were in Yekaterinburg), a subsidized program in the regional medical college for medical massage, a branch of the Russian

Social University offered subsidized places for blind applicants to follow the BA track of social

2 Data provided by the Federal Registry of the Disabled (https://sfri.ru/), accessed on March 7, 2020 3 The Order of the Ministry of Labor and Social Protection of the Russian Federation of December 17, 2015 N1024н established criteria for determining disability status that one is entitled to. Depending on the evaluated degree of functional limitation and the limitations of the individual’s ability for independent life, they are assigned a disability group. Individuals younger than 18 years old receive the category “child with disabilities.” Group 1 is given to adults older than 18 years old who demonstrate permanent bodily or mental dysfunction (quantified as falling within the spectrum between 90% and 100% of compromised abilities) caused by an injury or an illness. Adults older than 18 years old receive group 2, if they show stable bodily or mental dysfunction that amounts to 70-80% of compromised abilities. Finally, group 3 is given to adults older than 18 years old who demonstrate 40-60% of compromised bodily and mental abilities. 4 This is the most recent statistic available from the regional chapter of VOS, accessed at http://www.soovos.ru/about/ on March 7, 2020

22 work. Compared to other regions I have visited during fieldwork, the Sverdlovsk region stood out as it hosted a vibrant network of blind individuals.

During the period of my primary fieldwork, I worked with a nonprofit organization called

White Cane. They helped me cultivate nuanced knowledge of the disability scene in the city, region, and country. I served as part of the bureau of the First World Congress for Persons with

Disabilities, an international event that gathered 700+ attendees with and without disabilities from

30 countries in Yekaterinburg in September 2017. I participated in two inclusive sailing expeditions in the Baltic Sea, along the shores of Sweden, Lithuania, Latvia, and Russia. I organized and helped implement a series of seminars that White Cane members led in nine cities and towns along the Trans-Siberian Railway, beginning in Novosibirsk and ending in Vladivostok.

I traveled with my blind interlocutors to Israel and Kazakhstan to participate in international conferences on inclusion. Together with my interlocutors, I toured eleven regions in the European part of Russia for networking and holding seminars. I participated in grant writing to support initiatives proposed by White Cane affiliates and the development of the curriculum of a continued education program in inclusive communication. Finally, I participated in the design and development of a program designed specifically for staff of medical clinics and hospitals to learn how to communicate and interact with people with disabilities.

The primary method I utilized was participant observation, which allowed me to develop rapport with my interlocutors and track short-term and long-term developments in the field. As points of view, life conditions, resources, ideas, stories, and feelings changed, as people changed jobs and social statuses, as projects emerged and faded away, I was able to capture this texture of the everyday, ephemeral at times and stubbornly inert at other moments, track and map it, juxtapose its bits and engage with them over the course of four years. Although I conducted 112 semi-structured interviews with corporate managers, entrepreneurs, volunteers, educators,

23 professionals, students, parents, siblings, and inclusion-allies from sixteen Russian regions, I found informal conversations as well as working collaboratively on projects to be most helpful and productive. Through these ad hoc conversations, rants, tea sessions, and impromptu debates, I had the privilege of witnessing and engaging with my interlocutors as they dwelled in their communities and steered them toward inclusivity.

My positionality

The ideas presented in this text come out of my dialogue with my blind interlocutors, a handful of wheelchair users (associated with spinal cord injuries), three deaf adults, as well as their nondisabled allies with whom I worked in Russia. The knowledge I generated as a result of this research must be appropriately situated, to understand my positionality as a scholar of inclusivity, disability, and blindness in Russia.

I identify as a sighted nondisabled ally to my blind and other disabled friends and interlocutors. During fieldwork, the vulnerability of my own physical and mental condition had always fallen within the scope of those that are within the bell curve of the “normal.” This privilege marked the majority of my interactions and connections during fieldwork.

Although this has not surfaced in my interactions with my interlocutors, my experience with the medicalized management of eyesight preceded fieldwork and the scope of this research.

Besides living in the neighborhood that used to be called mikrorayon slepyh [micro-district of the blind], as a child and an adolescent, I also spent years in the regional eye micro-surgery clinic. A child with quickly deteriorating eyesight who eventually went through numerous treatments and several eye surgeries, I had been under ongoing treatment at the regional medical institution—a place for “special” children, as my family used to say. No “average” child would be admitted there without a referral of a local ophthalmologist who, after a series of attempts, failed to offer workable solutions to the problems with the child’s eyesight they identified. My problem was my weakening

24 eye muscles, which would not hold my growing eyes in the shape that the world in which I lived counted as “normal.” I had implants inserted in both of my eyes to prevent further flattening of my eyeballs, although the procedure turned out to be useless and would overall fail to deliver the desired result. I had my retinas laser-burned to prevent their further thinning and rupture. I spent hours commuting between and taking treatments at various “eye centers” that promised a quick and effective fix for my problems. I stared at various machines and followed moving objects, read through lenses of different acuity to “train” my eyes, studiously followed a popular self- hypnotizing technique that promised to give me 100%-eyesight in precisely 36 days, wore colored and perforated glasses, completed a course of acupuncture, and together with my mother, for years

I sought new eye specialists in town—all in an attempt to “strengthen” my weakening eye muscles.

Eventually, the treatments I received allowed me to remain within the range of those who could identify as sighted—despite my poor vision, I could correct it to a good degree with the help of special glasses or contact lenses, and I would need no other equipment or support to be able to fit in the world designed by the sighted for the sighted. Eyesight was not something I took for granted.

Yet, still, it did not pose any significant challenges in my life.

On the one hand, my experience made me familiar with the medicalization of one’s fluctuating ability to see, with the feeling of helplessness and inability to exert any control over the eyesight that kept getting worse. I am equally familiar with how fast doctors jump into conclusions about the mental inability of an individual—in my case, a seven-year-old child— with poor sight and how hard it is sometimes to convince them otherwise. I am familiar with the emotional intensity and anxiety associated with a risk of losing one’s ability to see. I experienced this anxiety myself and observed my family members every time we would receive news that I scored even worse than the previous time. I am familiar with the navigation of bureaucratic mazes and medical hallways to collect state-provided benefits that a child with my vision condition could

25 enjoy—I was allowed to pass fewer exams and skip PE classes in school. I am familiar with how the performance of my eyes in eye clinics, at school, and in everyday life served as a target for bully and ridicule. And I am quite familiar with the inertia of the sighted and the world built by the sighted to make adjustments to those who do not score well on eyesight tests.

On the other hand, I have never felt or identified as having a disability or being disabled.

At the very beginning of my long-term fieldwork, my eyesight trajectory took a turn that drove me further away from the domain of ever-calculating risks and eyesight checkups. Just a month into fieldwork, I went through a surgery that ultimately fixed my eyesight. I was nervous about sharing this decision with my interlocutors. I imagined that they would be overwhelmed by my unearned luck in having a good chance of adjusting my eyesight to the conventional 100%. I feared that by sharing my decision with them, I would trigger them to relive the trauma of their blindness. In reality, the reaction that I received was two-fold: endless giggles and jokes about repairing my optical system for the good of the blind community and a sigh that I wasn’t wise enough to consult with them in advance, before arranging everything with the clinic. Apparently, they were well- connected with the city’s best ophthalmologists, and they would have tried to negotiate a good discount for me. What warrants attention in this situation is my assumptions about blindness and medical fixes that I had at the beginning of fieldwork. I took it for granted that my interlocutors experience their blindness as a lack, as an ongoing injury and trauma, as something they would want to have fixed at any cost while being unable to do so. In other words, I came to this project well-versed in ableism’s tropes, emotions, and judgments. It took me months of working with my blind interlocutors, meeting with them for coffee, taking freediving classes with them, traveling with them, organizing and running events with them, to comprehend the simple truth that the idea that blindness is a source of trauma and tragedy is a cultural belief and that people can experience and live it otherwise.

26 My experience of growing up in the place of my fieldwork helped me immensely, on the one hand, and posed particular challenges, on the other. I benefited strongly from my preexisting network—it is through a friend from my undergraduate studies that I connected to White Cane, my key interlocutors. My ability to introduce myself as someone “from here,” to speak Russian fluently, and to know well the regional history and references served me well in establishing rapport with my interlocutors.

On the other hand, the feeling of comfort about “knowing the environment” posed additional risks of glossing over the experiences of people who came from different backgrounds and lived in different socioeconomic and cultural positions. Although I grew up in Yekaterinburg, my socioeconomic background, my family history, my mental and physical abilities, my gender, and my legal status as a Russian citizen conditioned my experiences of the 1990s and the 2000s, the time when I lived there. My experience and knowledge correlated with the social position I had occupied, leaving me with false confidence that I know what it is to grow up in Russia after the dissolution of the Soviet Union. Thus, working with a group of people who, in some ways, were less privileged than me but, in other ways, had access to more resources, challenged me to situate my perspective and account for the unacknowledged bias.

I write this dissertation as a person who has had those experiences listed above. My exposure to these experiences, as well as my work primarily with blind individuals, as opposed to people with other kinds of disabilities, shaped my ideas about inclusion and ableism in Russia.

Uniqueness of blindness as a form of somatic difference

Although I am not interested in playing oppression Olympics and determining which disability is more challenging or less so, I find it is necessary to reflect on how being blind in post-

Soviet Russia affects the epistemic and ontological positionality of blind people and their allies as they theorize inclusivity and ableism. Given that disability is an umbrella category for a vast array

27 of human bodymind (Clare 2017; Price 2015; Schalk 2018) experiences and variations, it is imperative to acknowledge the partiality of any conceptualization. Feminist standpoint theorists such as Donna Haraway (1988) and Sandra Harding (1991) argued that knowledge is situated;

Kimberlee Crenshaw (1991) contended that differently positioned people may have profoundly different experiences and that no one experience is central or superior to others. With this in mind—taking my interlocutors’ knowledge-making endeavors as only some of many other conceptualizations of inclusion— I proceed by providing the reader with more information about my interlocutors. As theoreticians of inclusion, my blind interlocutors prioritized sociality and relationships, at the expense of accessibility and provision of structural support in the form of legal entitlement, for example. In what follows, the conditions that affected these preferences and orientations would become more explicit.

The majority of my interlocutors with disabilities fall under the category healthy disabled, which Susan Wendell defines as “people whose physical conditions and functional limitations are relatively stable and predictable for the foreseeable future” (2001, 19). The overwhelming number of them are blind. Importantly, their blindness does not affect their health practices and regimes— they are not expected to live shorter lives, manage chronic pain, or have other comorbid conditions.

Even within the population of blind people, this is significant, given the overwhelming numbers of age-related blindness and blindness associated with diabetes.

Although my blind interlocutors exhibited a spectrum of diverse mobility strategies, in general, their attitude to accessibility [dostupnost’] was heavily influenced by the ability of their ambulatory bodies to travel, given that they can identify the direction of their movement. And yet, despite the popular belief, blind people’s mobility is not entirely dependent on the presence of conventional accommodations to the built environment. The absence of well-laid-out accessible mobility infrastructure—in the shape of tactile tiles, traffic signals with sonic elements, or

28 affordable social taxi services—can slow down my blind interlocutors, it can pose additional risks and complications. It can trigger feelings of insecurity and lack of self-confidence—as Catherine

Kudlick writes, urban navigation with a white cane may be a highly masculinist endeavor (Kudlick

2005). And yet, unlike some wheelchair users whose social lives may depend entirely on their ability to access assistive technology to leave their apartments and reach their intended destination points, and enter those locations, the minimum system of enablement that a white cane user needs is simply a white cane and a skill to use it. State agencies provide white canes or reimburse the costs one spent on acquiring one. The scope and scale of accommodations and technology that they need are much closer to what a nondisabled person uses in their mobility. Free voice-over technology embedded in smartphones and open-source voice-over software that vocalizes information enable their access to the Internet and digital information. Although many complained about the quality of mobility training that blind people receive in special rehabilitation centers

(trips to which are subsidized by the state), they managed to develop excellent mobility skills with the help of their peers or by themselves, through trial and error.

Further, cultural ideas and tropes associated with blindness in Russia expose blind people to a particular range of affects and values. For the moment, it is sufficient to say that blindness in post-Soviet Russia is a condition that can be in some situations rebranded as a source of exciting and interesting sensory experience (for other contexts whereby sensory impairments have been turned into an asset see Friedner 2015; Hammer 2018), although this does not exhaust the range of sentiments and perceptions associated with blindness. Such rebranding would not mean that all other patterns of thinking, judgment, and perception would subside—those that associate blindness with begging, dirt, scare, trickery, and misery—yet it did offer an avenue through which my interlocutors would be able to diversify the semiotic and emotional palette of the sighted and the nondisabled in general.

29 At the same time, blindness is often taken to be one of the most challenging kinds of disability. Again, I am not interested in how close to reality such an assessment is. Instead, I note how easily this link between blindness and disablement is made in the popular imagination in

Russia. Blindness is perhaps the second form of disability that came to mind to my friends and acquaintances when I said that I did fieldwork with people with disabilities. The first was wheelchair users. Not only is blindness popularly labeled as a kind of disability, but it is also perceived to be one of the most severe. During fieldwork, I heard different explanations of why blindness is such a severe disability, among all others. One opinion had it that blindness threatens one’s social life. Another trope reiterated that blind people could not be independent at any level: be it professional life, financial matters, everyday life, family life, intimate relationships, or friendship. According to yet another opinion, blindness dramatically affects one’s ability to learn and develop intellectually, for blind people do not have access to visual information, from which

“humans get 90% of all information,” as they know. All these assumptions have ocularcentric roots

(Brennan and Jay 1996; Hirschkind 2009) as they prioritize vision at the expense of other sensory engagements. They are deeply problematic and misleading. They reproduce misconceptions about blind people instead of carrying any productive knowledge about learning patterns of humans with diverse sensorial toolkits. To sum up, in addition to having an opportunity to be branded as an

“interesting” or “unique” sensorial form of engagement, blindness is also squarely connected to stigmatizing tropes and ideas.

Finally, I would like to acknowledge internal differences within the population of blind and partially sighted people. First of all, there are simply too many different conditions that qualify one to acquire the status of blindness. The 10th revision of the World Health Organization’s

International Statistical Classification of Diseases defines blindness as “visual acuity of less than

3/60, or a corresponding visual field loss to less than 10o” (WHO 2007, 1). Among my interlocutors

30 were people who had tunnel vision and thus could see perfectly well what is right in front of them but would struggle with identifying objects with their peripheral vision; people who had their eyeballs removed and wore prosthetic eyes; people who had enough residual eyesight to move around easily during the day but who would always need a white cane at twilight and night; people who could see colorful spots; people who did not know what color as a parameter is. All of them were blind. But all of them had different sensory experiences, and all of them had blindness affect their social networks and everyday life in different ways. United they were by occupying a position of blind people in Russian cultural, socioeconomic, and political climate of the mid-2010s.

Many parameters factor into one’s experience of their blindness. It matters whether they lost their sight later in life or late enough to remember how to perceive and process visual information, whether they lost it in early childhood or were born blind. It matters what degree of incapacitation social workers and medical experts attribute to the individual, as they evaluate the gravity of their eyesight deterioration—the more incapacitated one is considered to be, the larger their state-provided pension will be. It matters how much a person can see and which factors affect this ability on a daily basis: the amount of light, the level of stress, the angle of vision, time of the day, other comorbid conditions. It matters if a person has access to resources that would enable them to minimize the resistance they meet as they learn to adjust to living as a blind person in the world of the sighted. Their age, gender, sexuality, class, ethnicity, race, religious affiliation, citizenship status, other disabilities, social safety net, financial security, housing situation, and sense of belonging have a direct impact on how blindness comes to matter in individual lives. I have seen that people who became blind as a result of diabetes take a completely different journey to learn to live as blind persons, compared to children who were born blind, or people who acquired blindness as a result of an explosion or other forms of experienced violence, or people who lost their eyesight due to old age. There is preventable and unavoidable blindness. With this in mind, I

31 make no claims about “blindness in Russia.” My story has been generated with an input of a group of blind people—who were among themselves quite diverse. I attempt to strike a balance and avoid ungrounded generalizations, on the one hand, and parochialisms, on the other. I use the experiences and ideas of those blind people who have afforded me their time and trusted me with their ideas to generate questions and open up conversations.

Across biographies and works of blind authors—such as John Hull (1990), Rod Michalko

(1998a; 1998b), Georgina Kleege (1999), Beth Omansky (2011), Stephen Kuusisto (1998),

Vladimir Vaskevich (2018), Martin Milligan (1996)—there are a few recurrent tropes that resonate, despite their authors’ differences. These authors would agree that blindness adds a new texture and thickness to the person’s social connections—sensorial positioning of oneself vis-à- vis others prompts new experiences of loneliness and being-together. Further, in the contexts of ocularcentric environments, blind people work with information differently. In essence, the ways and kinds of information they process and generate, together with their ability to focus and manage large quantities of heterogeneous data, distinguish them from their sighted colleagues. Finally, the permanent or long-term nature of blindness challenges them to train necessary skills and techniques of adaptation every day, precipitating in their bodies, with or against their will, with or without enthusiasm. This everyday enskillment of living in an ableist and ocularcentric world happens with alternating success: if on some days, it is okay if the bartender mistakes a blind person for a drunk person; on other days, it annoys or provokes considering making life-changing decisions (Michalko 2002; 2017).

Given the vast scope of disability as a category, it is impossible to theorize disability inclusion from nowhere, without prioritizing or taking for granted at least some features of the world. My blind interlocutors go through their everyday lives as blind people, not as wheelchair users, not as people with learning disabilities, not as people who experience chronic pain, to give

32 but a few examples. Without proposing that having one form of impairment prevents another, I am suggesting that one’s familiarity with the world is deeply corporeally rooted (see also Grosz

1994). Thus, a conceptualization of inclusion I engage with here owes much to the everyday experiences of its blind authors.

Brief history of blindness in Russia

So far, I have given preliminary comments about blindness, and yet I have talked about blindness as if it is an acontextual form of embodiment, as if blindness in Russia, Chad, and

Tajikistan were the same. As if blindness in Moscow, provincial urban Russia, rural Russia, among indigenous people in Russia were the same. Such a presentation would undoubtedly be misleading for it would disregard environmental, socioeconomic, political, and cultural factors that directly shape the form of embodiment and the kind of blindness one has, as well as life opportunities one may enjoy. Below I give a brief historical account on the developments of life for blind people in

Russia and then provide an additional historical narrative regarding affairs that pivot around the category of disability in Russia. My goal is not to provide a comprehensive overview of the conditions of life of blind people and people with disabilities throughout the history of the Russian state, Soviet, and post-Soviet. Instead, I would like to identify key features of the history of the categories of blindness and disability as well as experiences of blind people and people with disabilities. Understanding this history will allow me to track the genealogy of lingering affects, cultural ideas, and patterns of sociality that blind people and people with disabilities in general in contemporary Russia reproduce and/or challenge. These historical narratives were constructed based on archival materials5 I gathered information on museum tours, research conducted by other

5 I conducted archival research at the State Archive of Sverdlovsk Region where I accessed Soviet materials from the regional branch of VOS and regional and city-level departments of social protection, tasked with working with the disabled population of the region.

33 scholars, and historical narratives of the All-Russian Society of the Blind and the All-Russian

Society of the Disabled.

I begin my story6 in the last decades of the nineteenth century with the figure of Konstantin

Karlovich Grot, who created the system of guardianship institutions for blind people in Imperial

Russia. In 1881, he opened the first guardianship to care for visually impaired veterans injured during the Russian-Turkish war. It was a charity institution financed by private donations, church collections, and sales of the goods produced by its blind workers. Soon after its opening, it became clear that the demand for its services exceeded the group of blind veterans—the Russian blind population too requested access to educational and vocational resources. The focus of this institution was on the preparation of its blind students to live independently and perform paid labor.

Male blind students learned to make brushes and baskets; female blind students learned crafts.

Together with educational institutions, Grot opened workshops for blind workers, where they could be further employed. Despite these measures, the overwhelming majority of blind people did not have access to education and vocational training, let alone paid work—as they resided in the countryside.

With the death of Konstantin Karlovich Grot, the system lost its steadfast leader. Grot’s successors did not align with his views about the abilities of blind individuals and the commitment of improving their lives through generating opportunities for paid labor for them. Soon after his death, workshops created under Grot turned into barracks where blind people would eat, pray, work, and sleep. It was discussed if blind people were allowed to marry. Eventually, they did, but with the permission of guardianship.

6 This brief history is based on the stories, excursions, tours, and documents published by VOS (online) and in their museums. My visits to VOS branches in Saint-Petersburg (2015) and Moscow (2016) supplied the bulk of information. Another source I used is the official history of VOS provided at http://voi.social.tomsk.gov.ru/files/invainfo/history_vos.pdf

34 Unsatisfied with the increasing dependence of blind people on guardianship, in 1908, a religious organization, Bratstvo Khrista Spasitelya [Brotherhood of Christ the Savior], opened an artel for blind workers. Their approach was unique in that they did not treat blind people as helpless recipients of care, but as individuals capable of independent work and self-expression. In this artel, blind people could learn different vocations, those beyond making brushes and baskets—massage, keyboard tuning, reading religious hymns for the dead, rewriting notes for the blind.

The first organization founded by blind people themselves opened during World War I, in

1916, under the leadership of blind artist Vasiliy Ivanovich Nechaev. The Civil War interrupted the activity of this organization from 1918 to 1922 (although there are debates about the years of its beginning and its ending). As the Soviet Union was emerging from the civil war, the government implemented the so-called New Economic Policy (NEP, novaya ekonomicheskaya politika, 1921-1928 [de facto] /1931 de jure]), pressured by the necessity to address the severe economic crisis that the country had been facing as a result of the revolution and the civil war.

Within the NEP framework, some market mechanisms were introduced to the Soviet economic system, which encouraged entrepreneurial activities of cooperatives and other self-organized collectives. It is in this climate that people with disabilities in the Soviet Union organized in self- governing societies. One of the first “societies” of people with disabilities—VKOI (Vserossiyskoye

Kooperativnoye Obshchestvo Invalidov) or All-Russia Cooperative Society of the Disabled—was established at the beginning of the 1920s. The All-Russia Society of the Blind (VOS) and the All-

Russia Society of the Deaf (VOG) followed soon in 1925 and 1926, respectively. In regard to

VOS, it was created under the mandate of the Party’s Central Committee—despite wide-spread belief, it was not a story of self-organized blind people who initiated the creation of the society.

Boris Petrovich Mavromati, himself blind, following the Bolshevik party’s request, recruited first participants of the society. The organization of such societies aligned with the state’s goal of fast

35 industrialization, urbanization, and reconstruction (Danilova 2009). It also enabled the cultivation of subjects loyal to the state (Romanov and Iarskaia-Smirnova 2006).

As an organization, VOS was designed to solve the pressing problem of illiteracy and unemployment among blind people. Before the Great Patriotic War (1941-1945; Russian name for the period of the World War II whereby the USSR took an active part), they opened several factories, workshops, and artels. The society advocated for the expansion of the list of professions available to blind persons: for example, in 1937, metalwork as a professional domain was opened for blind people. Yet still, despite emerging opportunities, many remained unemployed.

During the war, VOS workshops and factories were moved inland and had to repurpose their production. These enterprises supplied mine boxes, bread molds for field bakeries, stoves for dugouts, camouflaging materials, and felt shoes for soldiers. During the siege of Leningrad (1941-

1944), a long-term military blockade, around 300 blind individuals remained in the city. As the city endured severe hunger and lack of supplies, those blind adults who had energy worked in artels: they produced equipment for cleaning gun barrels and camouflage materials. Several blind persons served in the Red Army as listeners [slukhachi]—they used their trained hearing to detect the sound of approaching airplanes and identify the distance at which these airplanes were.

After the war, many veterans who lost their sight at war joined VOS and sought employment through its factories and workshops. In 1944, VOS opened fifty-eight additional factories to accommodate the increased demand in employment. In 1946, the Council of Ministers lifted the requirement for VOS enterprises to pay sales taxes, which allowed them to spend funds on rebuilding destroyed facilities and reinvesting their revenue in the construction of more factories, housing, and infrastructure for the members of the Society. In 1950, the Council of

Ministers decreed to build thirty more factories for the blind.

36 The war changed not only the numbers of blind people in the country but also the quality of the welfare that the blind population received and expected to receive from the state—recently blinded soldiers, iconic figures of heroism and productivity, arrived at the Society with higher expectations and demands. As more blinded veterans came to power in branches of VOS and factories, they advocated for the improvement of working conditions, rendering them less toxic and more enabling for blind workers.

With tax exemption and planned economy whereby VOS factories never had to coordinate supply and demand, VOS was gradually becoming a bigger and wealthier organization. In 1951,

VOS refused to accept state funding and instead contributed 25% of its profits to the state budget— which served as a point of pride in many accounts I heard. By the 1960s, the society was flourishing. Blind workers received high salaries at VOS factories. The society built multiple housing complexes and cultural centers for its members. VOS opened an official school of massage, typewriting courses, agricultural schools, a guide-dog training facility, rehabilitation schools in Biysk and Cheboksary, sanatoria. They issued regular magazines and journals. VOS factories developed cooperation frameworks with the major Soviet factories: Red Dawn [Krasnaya

Zarya] and Perm Factory, both of which were large industrial factories. This period of economic success, together with the society’s spectacular ability to successfully plug blind workers into broader economic circuits of the industrial economy, was remembered by many with great enthusiasm and appreciation.

By the end of the Soviet era, VOS was a wealthy and robust organization that not only provided employment opportunities for blind people but also ensured access to extracurricular opportunities such as athletic facilities, music performances, clubs, and hobbies. Yet this strength and wealth were tightly connected to the ways in which the planned Soviet economy worked, as well as the very definition of success heavily predicated on the value of productivity and

37 employment. VOS was perceived to be a successful organization because it seemed that it managed to solve the main problem, which had been defining blind people as a “problem population”— namely, the problem of their unemployment. Being able to publicly demonstrate their ability to solve the pressing issue of unemployment among the blind was dependent on the fact that VOS factories always had orders, coordinated within the framework of the planned economy; they never had to worry about selling their products or competing with others. Within the protected limits of the Soviet economy, VOS offered plentiful resources for blind individuals to have employment, housing, community, and extra-employment life. The collectivist ideology also provided tools to conceptualize their place in Soviet society—as valued contributors, as fellow laborers. The dissolution of the Soviet Union—and its planned economy—made a dramatic impact on the society and on the resources the blind community had.

In the 1990s and the 2000s, many VOS enterprises went bankrupt. In the new state, they did not receive any state support in the form of organized orders. Now, in the conditions of the market economy, they had to compete not only domestically, but globally. They failed to update their equipment or innovate their production lines and were unable to conduct market research and negotiate contracts, all of which led to sometimes catastrophic consequences. After the collapse of the USSR, VOS factories ceased to provide their employees with competitive salaries. By word of mouth, during fieldwork, I heard that the factory in Yekaterinburg paid 5000 rubles (about 80

USD) per month to their workers. This exploitation was supplemented by derogatory statements that work at these factories provided blind people with a social world, which they would otherwise not have. None of the blind interlocutors whom I met during fieldwork worked at VOS factories, considering this job opportunity undignified. Due to their unprofitability, VOS factories and VOS buildings that used to serve as community centers are now rented out, generating profit to the branch that owns the building. Such a rentier activity prevents the formation of a positive identity

38 of VOS and among VOS members. Without viable opportunities for employment or community life, the younger generation sees little opportunity in their membership in the society. The society’s branches, led by younger people who offer training in project management to their branch members, figure out employment opportunities available to blind people in the region and offer training in job-related soft skills, are, instead, an exception to the rule.

With the society having lost its power and now remaining dependent on the meager budget allocated by the state, VOS offers its members a nostalgic memory of past glory without providing a community, opportunities for employment or self-actualization in the present. As Svetlana Boym

(2002; see also Boyer 2006) has written, nostalgic memories are as much projective as they are retrospective—nostalgia brings together the past, the present, and the future, as does the phenomenological conception of temporality. From the present experiences and longing for what is imagined to be the past and how it is imagined to feel, this fully bodily and mental experience of nostalgia orients toward certain futures that have never come to materialize.

My historical narrative is composed out of bits of other narratives and voices that seem to be decidedly functionalist—in various ways, they all emphasize stories of economic successes and failures, as well as instances of independent abilities to contribute something for the benefit of someone else, to fit in into a broader whole. The nostalgic longing for the wellbeing of people with disabilities, in this sense, is strongly associated with the functionalist pattern of inclusion where the rich complexity of everyday life is refracted through the lens of labor and ability.

The nostalgic memories of VOS’s past grandeur are not individual—especially among those who have never lived in the Soviet Union. It is a collective feeling, production and maintenance of sticky emotions (Ahmed 2004a) that draw one in regardless of their experience or lack thereof. During fieldwork, I came across both types of nostalgic remembering identified by

Boym—restorative and reflexive nostalgia. She defined restorative nostalgia as a determination to

39 reconstruct the home for which one longs. This form of remembering and self-conceptualization is strikingly similar to memory practices of those persons in VOS who call for the restoration of the society’s glory and might maintaining the commitment to providing opportunities for manual labor in industrial settings. They see the society, its blind members, and the state to be part of the same contract that existed during the Soviet period and bound to stay in the cycle of fulfilling obligations toward each other. If during the Soviet era, VOS “was helping the state,” in this logic, it becomes apparent that now it is the state’s turn to lend a hand to VOS and its members. Within such a plot, the state, the society, and its members are all implicated into the operation of an economy of mutual indebtedness and the moral obligation to repay acquired debts, whether their repayment is possible or not (for accounts on the economy of debt related to war see Açiksöz 2019;

Kaganovsky 2008; MacLeish 2013; Wool 2015).

Among those who care to remember or engage in listening to someone else remember, there is another group—who learned from VOS’s members’ efforts and work, not its results. This is close to what Boym calls reflexive nostalgia. A form of nostalgia that does not plan on actually coming home or rebuilding home as it is remembered, it cherishes the longing but does not seek to resolve it. These people tell stories of the post-War performance of the society yet haste to add that today this strategy would be and is, as we observe, defunct. Today, in the new world, in the new economy, in the new political system, in the new cultural context, we need to find new solutions to how blind persons can be conceptualized as participants of the social, not its outcasts.

Some realize their projects and ideas within the framework of VOS. Others choose to loosen their ties with the society and, instead, carve their trajectories in the “open market” independently or with the support of other NPOs and tutors. Yet, without a doubt, the majority of all nostalgic people—those engaged in restorative or reflexive forms of nostalgia—do not break free from associating economic prosperity with individual and social worth.

40 Brief history of disability in Russia

Similar to Sarah Phillips’s (2010) interlocutors, who strategically identified with different models of disability and different discourses to ensure access to best possible opportunities—what she captures with the concept of mobile citizenship—my interlocutors strategically used a variety of identities available to them. Sometimes, it would be blind, on other occasions, disabled, and yet on others, another human being, “just like you” [takoy zhe (chelovek) kak ty]. Navigating the maze of these three identities enabled them to not only carve their pathways through the ableist physical and social environment but also to generate a rich and dynamic self-concept that was never one and set in stone. My interlocutors—although they could not see well enough to claim a sighted identity—were at the same time blind and not blind, disabled and nondisabled, average and exceptional humans. In what follows, I give more historical background information about the figure of the disabled person in Soviet and post-Soviet Russia. This will give the reader an idea about an alternative discourse through which my interlocutors could find meaningful identification, source of community, and frustrations. Just the same as the identity of the blind, but different.

The ways in which the history of blind people in Russia has been documented and narrated show to me that work productivity has served as the primary framing device in generating historical narratives that feature both blindness and disability and that inform conversations, concerns, and forms of intervention. Here, work productivity and the ability to contribute to the wellbeing of the collective through labor had fundamental significance for all—blind and disabled people alike. The very category of disability during the USSR was constituted as indicative of one’s inability to participate in the formal labor force, according to Sarah Phillips (2010), which was not exceptional or unique to the USSR—as it was the transition to industrial capitalism in general that constituted disabled people as primarily unproductive (Rose 2017).

41 And yet, in Russia’s history of disability, there is not nearly as much fanfare as is in the triumphally-framed and progress-oriented history of VOS (and the blind, by proxy). The temporalization of experiences and historical occurrences that pivot around the category of disability in Soviet and post-Soviet Russia works through a fundamentally different aesthetics and affect—that of abandonment and failure, instead of glorified independence and demonstrated worth.

On November 13, 1917, the Committee of People’s Commissars decided to institute the system of social insurance (Nagornova and Makarova 2014, 29). This decision committed the government to produce decrees that would provide sustenance to poor people and those people who lost their ability to work (including due to illness or impairment). In 1919, as a result of the increased number of people with impairments affected by the First World War and the Civil War, a new regulation “about the social provision of disabled Red-Army veterans and their families” entitled war veterans to state pensions. In 1921, all employed persons obtained access to a pension if they were accorded disability status.

As I mentioned before, the first organization of the disabled—VKOI (Vserossiyskoye kooperativnoye obshchestvo invalidov, which stands for All-Russia Cooperative Society of the

Disabled)—emerged in the early 1920s, as part of the deployment of the new economic policy and the loosening up of Soviet economy. In addition to VKOI, 1920 saw the establishment of peasant mutual assistance committees, the creation of which was sanctioned by a decree of the Council of

People’s Commissars. These committees provided labor and financial support to people with disabilities (Nagornova and Makarova 2014). In 1925, a new regulation, “provision on peasant mutual help committees,” obligated them to “provide social provision to people with disabilities and the poorest strata of the village and ‘help out’ state organs in equipping, maintaining, and supplying institutions of disabled people, located on their territory” (Nagornova and Makarova

42 2014, 30). In the 1930s, these committees transformed into peasant collectives that provided financial assistance to their members. In 1932, these entities were legally obligated to take care of the employment of locally based people with disabilities.

In Soviet society, from its early beginning until the very end, labor and employment served as a value, responsibility, right, and access point for other goods and infrastructures. As Danilova

(2009) suggests, following Sheila Fitzpatrick, Soviet social policy toward diverse social groups, including people with disabilities, was focused on generating opportunities for employment through which they could gain access to other social services and infrastructures. The iconic Soviet definition of disability as the inability to labor (Shek 2005)—what Sarah Phillips (2010) calls the functional model of disability—was adopted in 1932. From that moment on, one’s ability or inability to labor was determined by an expert body—VTEK (vrachebno-trudovaya ekspertnaya komissiya or Medical-Labor Expert Committee)—which assessed the applicant’s documents and physical form, to decide whether to allocate the status of disability at all and if so, to what group one would belong (for an account on bureaucratic rendering of disability in China see Kohrman

2005). Of the three groups of disability (before they were six), group one was designated to those who lost any ability to work and needed external care. People who lost their ability to labor in any professional domain but who did not depend on externally provided support qualified for group two. Finally, group three was assigned to those individuals who proved to be unable to work under regular conditions but who retained a residual ability to work that may be applied irregularly, with a shortened workday, or in another profession with a significant diminishment of qualification.

This new system was based on the stratification of the population of people with disabilities by introducing a hierarchy within the category (Danilova 2009). On the top of this hierarchy were war veterans, then people who acquired disability at work, then agricultural workers, then people with

43 congenital disabilities who have never participated in the labor force and did not have the ability ever to join it.

The USSR’s participation in the Second World War—which was vernacularly called the

Great Patriotic War (1941-1945)—resulted in a significant increase in numbers of injured and wounded veterans who returned to their civilian lives disabled. As Mark Edele (2009, 6) writes, the Soviet official statistics showed that fewer than three million people returned from the war permanently injured. Yet Edele cautions his reader to “safely assume that many millions more suffered from the physical, mental, and social consequences of this horrible slaughter” (2009, 6).

Veterans’ demobilization was accompanied by bombast, yet soon after their return, they found that

“instead of the good postwar life, [they] were treated to the routine hassles of a malfunctioning bureaucratic machine” (Edele 2009, 15). Veterans were expected to join the country’s labor force and repeat their heroic achievements, now domestically, in rebuilding a country devastated by war.

“Insufficient state aid, scarce and poor-quality artificial limbs and wheelchairs, the perceived need to mobilize any able (and not so able) body into the workforce, institutional underdevelopment, and a general preoccupation with idealized supermen rather than with the problems of real people of flesh, bone, and blood all combined to make life miserable for many invalids throughout the postwar period” (Edele 2009, 81).

Although war veterans were the most privileged in the hierarchy of people with disabilities—their pensions were the highest, they enjoyed access to the most benefits than other veterans or other people with disabilities—they too found life principally inaccessible and devoid of prospects. One of the few effective tactics of inciting change and gaining access to necessary equipment was writing complaints (Chueva 2008; Fieseler 2005). Many people with disabilities ended up begging and engaging in small-scale trade to procure minimal livelihood to supplement their meager pensions (Danilova 2009). After the war, veterans were not allowed to establish new

44 societies or nongovernmental organizations. Their affairs had to be managed through the already existing societies of the disabled (VKOI), of the blind (VOS), and of the deaf (VOG), which left many unsatisfied and feeling unheard (Danilova 2009).

The years soon after the war became the time in which the policy of hiding people with disabilities reached its peak. Under the banner of the fight against poverty and social parasitism, the police and representatives of social welfare agencies started “cleaning the streets” (for an account on analogous “ugly laws” in the U.S. see Schweik 2010)—people whose livelihood depended on informal labor and begging, including large numbers of people with disabilities, were sent to special Houses of the Disabled by War and Labor [Doma Invalidov Voyny i Truda] or

Corrective-Labor Colonies [Ispravitel’no-Trudovye Kolonii] for the disabled (Danilova 2009, 67).

Additionally, some disabled veterans were persecuted for being former prisoners of war. An entitlement group at first (a movement of atomized individuals who expressed individualized sentiments of entitlement to due treatment and respect [Edele 2009, 12]), disabled and nondisabled veterans were able to organize and be properly recognized by 1978 when their status was institutionalized by law.

With Stalin’s death in 1953 and Khrushchev’s coming to office, domestic policies and repression were relaxed. In 1956, war veterans were allowed to establish their own organization

Soviet Committee of War Veterans (SKVV; Sovetskiy Komitet Veteranov Voyny). Initially, the purpose of SKVV was “international propaganda in the global veterans’ movement, not domestic representation of former soldiers” (Edele 2009, 11). The Soviet marshal Alexandr Vasilevsky became its chairman; the Soviet pilot Aleksey Maresyev became its responsible secretary. This choice was not accidental—both Vasilevsky and Maresyev were glorified virile figures, war heroes who epitomized the tropes of perseverance, drive to move forward, dedication, overcoming, and willpower. Aleksandr Vasilevsky was one of the most prominent and recognized military figures

45 under Stalin—during World War II, he planned and coordinated major military offensives.

Aleksey Maresyev, a double amputee who returned to the war front nonetheless, was awarded the title Hero of the Soviet Union and served as a symbol of the particularly Soviet type of determination and maimed masculinity (Kaganovsky 2008). As Danilova points out,

the story of the achievement of the USSR’s hero Maresyev became canonical and determined the attitude of the official state to disabled war veterans [Durham 1989]. Disability was identified as a weakness and something that shouldn’t exist as such. Theoretically, a disabled person had to turn into a “healthy” person or, at least, not remind the others about their illness (Danilova 2009, 68).

It was precisely what Maresyev did—after he was severely injured at war and his legs were amputated above his knees, he trained himself to use his prosthetic legs, returned to the front lines, and continued his military service until the end of the war. He made sure that he was not identified as disabled by anyone. With Maresyev serving as the emblem of SKVV, war injuries, impairments, and other forms of disablement faced even greater challenges of converting oneself into a supercrip

(P. D. Howe 2011; Kama 2005; Schalk 2016), a figure possessing extraordinary abilities to

“overcome” his disability and achieve unrealistic results. This ideology underlaid the strategy of placing unemployable people with disabilities in special institutions, removed from the public eye—the image of Soviet society as a society of “healthy” and productive citizens featured in

Soviet propaganda (Fefelov 1986; Shek 2005).

At the same time, a new 1956 law—the law on state pensions of 07/14/1956—improved the system of state pensions (doubled them) for people with disabilities, students, soldiers, members of families with a deceased breadwinner. It offered a sophisticated hierarchical system of pension allocation where the size of disability pension one would receive was determined by the type of their previous work, their work experience, the severity of their disability, and military/civilian status. From the mid-1970s, unemployable people with disabilities obtained access to a system of at-home social services such as grocery and food delivery, laundry of bed

46 sheets, home cleaning, delivery of prescribed medications, delivery of soiled clothes to the laundry, payment of utilities bills (Nagornova and Makarova 2014). Part of this at-home social services system was social work that allowed people with disabilities who lived solo and had severe kinds of disabilities to receive such services as self-hygiene, daily post-office related errands, help with receiving medical assistance, help with burial services, in case this person passed away

(Nagornova and Makarova 2014).

The USSR’s social policy was paternalistic, exclusionary, and isolationist regarding people with disabilities (Shek 2005, 375). Paternalistic state care [zabota gosudatstva] consisted of addressing people with disabilities as an object of care and through that, reproducing the status of people with disabilities as second-tier citizens. Such a system “presupposed the dependence of a person with disabilities on expert decisions and the power of the ‘helper’ to manage the life of the

‘recipient of help’” (Shek 2005, 385; see also Verdery 1996). Care thus configured (still) operates as a system of resource distribution regulated by designated professionals. These professionals assess the degree to which one’s bodily or mental condition is disabling. They decide as well on the list of professions and jobs that this person is allowed to do. Individual features, characteristics, abilities, and interests are disregarded under the classifying gaze of experts. Through such a system, experts created disability as an overdetermining lens through which individual lives came to be evaluated. Through such a system, the importance of disability overrode the importance of the person (for similar examples of anonymous care in Canada see Stevenson 2014).

The stigmatization of disability in the Soviet era emerged as an effect of configuring persons with disabilities as non-contributing members of society (the solely recognized forms of

“contribution” was productive labor (for a critique of productivism see Ferguson 2015) who were the recipients of benevolent paternalistic state care—they lived off the pensions provided to them by the state; they enjoyed access to resources that the state benevolently allocated to them free of

47 charge; they lived “on state provision” in special institutions funded by the state. They were the recipients of what Lisa Stevenson has called anonymous care (Stevenson 2014), the state’s biopolitical determination to keep its citizens’ alive, regardless of the qualities and textures of these lives.

As Ol’ga Shek (2005, 387) argues, the reciprocity of such a care structure was based on the cultivated feeling of guilt and gratitude toward the state. As Valeriy Fefelov writes: “a person, especially a person with disabilities, had to feel guilty that through receiving their pension, they

‘steal’ from the state” (Fefelov 1986, 101). Through this feeling and subjectivation the state configured their disabled subjects as indebted and submissive. The minimal amount of support left disabled people appreciative of and grateful for any little improvement in the state’s social support that the state would make.

As Dimenshtein and Larikova (2009b, 207) point out, in the early 1990s, Russia committed to the humanization of society in regards to disabled children, as it signed and ratified several international conventions that ensure children’s rights to education, development, and social welfare. The 1992 law “On Education” and the 1995 law “On Social Protection of People with

Disabilities” created novel mechanisms of integrating children with disabilities into society.

Although these laws proclaimed the right of persons with disabilities to education as well as established subsidized quotas in universities for applicants with disabilities, they did not bring about substantial changes in practice. By 2009, the time of publication of their work, Dimenshtein and Larikova (2009b) suggest, that despite the presence of the necessary legal base, in real life their implementation met significant resistance in the form of cultural assumptions that people with disabilities “have no prospects in life” and are, instead, burdens on the federal budget. Such assumptions are strong among the lay public and in different bureaucratic and executive governmental agencies. Prejudice held by the latter is particularly harmful, given that it prevents

48 quality control of how these laws come to be implemented. It also fuels the production of discriminatory local-level disability legislature, which contradicts the legal terms of the federal law. With this in mind, Dimenshtein and Larikova (2009b) diagnose contemporary legislature— federal and regional—as contradictory and ineffective.

They highlight that in this climate, the work of contemporary disability NGOs is particularly detrimental. They criticize the strategy of exerting care toward individuals with disabilities—such as providing them with individually accessed resources—to undergo treatment in state-sponsored sanatoria, or getting access to individual assistive technology, or offering them entertainment and funds to cover parties at their community centers. Instead, Dimenshtein and

Larikova (2009b) suggest, NGOs, as the mediums between the state and individual people with disabilities, should be focused on advocating for a systemic change; they should serve as “social advocates.” Specially trained personnel, fluent in legal and bureaucratic knowledge, must serve as an agent to push forward systemic changes and provide the necessary support for people on the ground to be able to claim their rights, existing de jure and nonexisting de facto.

Thus, the cluster of ideas, affordances, and affects associated with disability is distinct from the one related to blindness. The Soviet and post-Soviet history of disability has been the history of carving out a bureaucratic category that would enable citizens with impairments to survive in a society that values human lives based on their productive performances. This history was fraught and full of suffering, false promises, bureaucratic failures, hard-won victories, relentless survival, and forgotten and silenced struggles. Defined as the inability to meet the standard criterion of productivity and, in general, ontologically fraught—very much an instance of negative ontology

(F. K. A. Campbell 2005)—disability became simultaneously stigmatized and rendered an object of state benevolence. Without a well-developed system of production sites and places of employment, disability organizations did not enjoy having an opportunity to capitalize on the

49 existing system’s privileging of productive bodies capable of seamlessly plugging into the existent cycles of production. Finally, a strong association between disablement and bodily impairments squarely rooted disability in individual bodies and left little opportunities for systemic critique. In this climate, only one source of positive identity among people with disabilities remained—the one associated with society’s indebtedness to veterans with disabilities who were imagined to have made a sacrifice for their country. However, this positive identity was also predicated on the fundamental devaluation of disability.

Disability today, inclusion today

In the Soviet era, VOS dominated the scene of the actors who could affect the wellbeing of people with visual impairments—VOS negotiated with the state, organized workplaces, provided housing. Today, VOS has lost its primary role of the mediator between blind citizens and the state, or blind citizens and their community. Instead of a single-centered social field where resources gravitate toward one center, today, larger urban centers, such as Yekaterinburg, offer a more pluralized and multicentered field. In Yekaterinburg, the fifth largest city in Russia, according to the federal statistical agency Rosstat7, various actors provided resources and activities to blind people, besides the regional and the city branch of VOS. During fieldwork, the city’s scene of organizations and initiatives carried out with the participation of blind people hosted the following actors: NPO White Cane, a commercial project of tours in the dark, individual blind entrepreneurs, guides, and tutors, as well as several inclusive drama and performance arts collectives. They were all distinct from VOS, however, in that none of them was focused on the well-being of persons with visual impairments per se. All of them were coalitional projects—to different degrees, however. For example, White Cane worked with people with visual

7 https://gks.ru/compendium/document/13282

50 impairments, deaf people, wheelchair users, people with drug and alcohol addiction, as well as nondisabled allies. Inclusive theaters and performance art collectives had troops that were composed of people with different disabilities as well as nondisabled people. Individual tutors and entrepreneurs offered their services to broader audiences. They had no interest in containing their for-profit and not-for-profit activities within the framework of “for the blind.” Those of my interlocutors who would fit into this category were not interested in doing what they called “social work,” or direct services for blind persons realized within the broader state-mediated moralized economy of debt and obligation.

Despite my interlocutors’ desire and determination to build their lives within the broader society, they came up against ableist prejudice regularly. In this sense, they often needed to acquire supported access to the resources that could propel them further in their professional careers or individual lives. Among such resources were discounted educational programs (in project management, in life coaching in private and public institutions) and discounted social projects

(such as inclusive sailing, for example, or an inclusive swimming club in a local swimming pool).

Before I go any further, I would like to introduce my readers to my principal interlocutors, those theorists and practitioners of inclusion who welcomed me in their lives and helped me develop a deeper and more nuanced understanding of how inclusion matters and how it can matter in experiences of different people. Due to limitations in space, I only choose a handful, yet I believe that they reflect the heterogeneous quality of my interlocutor pool.

Oleg

Oleg was the first blind person I contacted and met when I went to the field. He was and still remains my main interlocutor—the amount of time and attention he offered to me and my research was unprecedented. With him, I traveled across regional and national borders, reached

Russia’s western and eastern limits, and talked about inclusion for hours on end. He is also an

51 excellent cook and ice-skater. From him, I learned what it takes to dedicate oneself fully to inclusion. Oleg lost his sight completely in the early 1990s, as a result of an explosion. A person who came of age at the turbulent time of shifting political regimes and economic restructuring, he grew up close to the networks of city administration and business. He learned how to walk independently with the help of a white cane only a decade into being blind—during the first decade he had access to a driver and family members who accompanied him in his daily travels. He learned how to move around by himself from Misha, a blind massage therapist, whom Oleg met by accident. Together with Misha, Oleg founded White Cane around 2010, when they began organizing social projects and city festivals. Oleg’s life mission, since he came to terms with his blindness and learned how to appreciate it, became to cultivate inclusion and broaden popular imagination of how people with disabilities could be well-integrated and well-included in the fabric of the social. Today, Oleg dedicates all his time to the work of White Cane, serving as its president and leader of its broader nonformalized network. Oleg knows how to network, and he also knows that networks are of utmost importance in his work and life, as they are in the work and life of any other disabled person. His networks are incredibly heterogeneous and open to anyone interested in inclusion—be they a manager of a large company, or a student of the special school. Oleg is charismatic and incredibly inquisitive—of all my interlocutors he is the only one who devoured Michel Foucault’s oeuvre faster and with greater enthusiasm than a graduate student on a deadline. Without a proper higher education degree, he possesses encyclopedic knowledge as well as exceptional analytical and synthetic abilities. More importantly, he always puts his new ideas to practice, to test and improve them. He has authored and designed many White Cane projects, including inclusive sailing, inclusive communication workshops, and activities in the dark. During fieldwork, I would communicate with him almost every day. He is currently writing

52 a book on the concept he developed—extrability—in hopes that the spread of this concept could potentially change the ways in which people with and without disabilities think about disability.

Misha

In a way, Misha was the beginning of it all, as stories tell me—of White Cane, of movements, of things that started happening. Misha was the one who taught Oleg how to use a white cane and to do so with joy. A person with deep passion and curiosity for life, Misha always has stories to tell. Misha introduced me to freediving, connected me with a running coach, organized classes of English and Spanish, attended yoga classes, seminars, lectures, and events, participated in city-level events. He always had (and I believe he still has) a new coffee shop for me to recommend. Misha lost his sight gradually, over several years, having gone through a crisis when he realized that vision was not coming back. Today, he doesn’t distinguish between day and night. Although he wanted to be a mathematician, he is a blind massage therapist with a wide clientele. He had been working in massage therapy for several decades by the time I met him and managed to develop a network the size and diversity of which would only compete with Oleg’s. I attended a few massage sessions with him, referred several friends and family members to him.

Misha says that blindness helps him in many ways. It is his competitive advantage on the market with other massage therapists, for it helps him establish trustful relationships with his clients quicker and easier. He participates in White Cane’s programs as much as time permits—juggling his professional, family, and personal responsibilities, and somehow, he still manages to find time for brainstorming sessions, events, and seminars. He also lives in a different town and commutes to work every day for an hour and a half, back and forth. Above all, he always finds time to meet with a person who needs his help—be they a person who has recently lost their sight, a person who would like to learn how to walk with a white cane, someone who seeks advice about a challenging life situation, or an anthropologist who keeps asking questions.

53 Volodya

Volodya has been blind since early childhood. He lost his sight so early that he doesn’t remember what light and color are. Originally from a different region, he relocated to

Yekaterinburg to go to its special school for blind children, famous for the quality of education it provides to its students. For out-of-region students, this school functioned as a boarding school— students lived and studied there. At school, Volodya was a competitive athlete in goalball (a team sport for athletes with visual impairments). It is also at school that he met Oleg and Misha, at the time the only members of White Cane—they came to his school to give a presentation. After that talk, which at the time struck Volodya and moved him to develop connections with these two active blind men, Volodya began to collaborate with them for various initiatives and projects in and out of town—it was Volodya who originally designed and organized Business City, a simulation game for high-school students that I discuss Chapter Seven. Volodya may be called a blind entrepreneur for he uses his blindness as a competitive advantage: he is a traveler and a hitch- hiker, a city guide and a massage therapist, a writer and a presenter. He is also an aspiring life- coach. In 2018, he published a book about his life story and all his adventures. By the time when my fieldwork was approaching its end, Volodya had completed a Master’s degree in an IT-related field, married, and got a job with the conference Russia’s Pedagogues, for which he regularly travels to deliver seminars and lectures on inclusive education.

Zhenya

Zhenya is an active member of White Cane, although she lives in Moscow. A historian by education and an infinitely curious soul, Zhenya has many facets to her life. Before we met, she worked as a guide at a sizeable historical center located in one of Russia’s islands in the north, traveled to Spain, freelanced as a journalist, and briefly worked at a center for the deafblind. During fieldwork, she worked as a blind guide at the exhibition in the dark (an entertainment project

54 located in a large shopping mall for the consumption of an ordinary consumer audience), a teacher at a special school for visually impaired children and briefly, a specialist of the disability resource center at a university. Together, we participated in inclusive sailing voyages (with a crew made up of people with and without disabilities) in the Baltic and Russia’s domestic waters. She graduated from a life-coaching program and was logging in hours to qualify for an internationally recognized credential. Zhenya and I are of the same age, and so we became friends very quickly—she stayed with me during her visits to Yekaterinburg and on other travels. Like the majority of my other blind interlocutors, Zhenya was and continues to be an explorer and a discoverer—of what is possible for blind persons to do, given that almost everywhere she goes, she happens to be the first blind person they encounter and have to welcome.

Stepan

Stepan lost his eyesight relatively recently—he was a truck driver for the most of his life.

Stepan is married and has a child with eyesight-related impairments. He relies on his pension and a salary to provide for his family—his wife and his child. Now he works at a university in a lab of inclusive interaction that his colleagues and he helped set up. This lab unites scholars, students, activists, and volunteers who design and implement ludic and interactive forms of inclusive practices. They also generate online content to provide definitions and explanations of key inclusion-related phenomena. On vk.com (a Russian social network analogous to Facebook),

Stepan adds content to the Lab’s group and to the Inclusion Dictionary [Spravochnik po inkluzii8], where visitors can find short and informative posts about extrability, inclusion tutors, volunteering for inclusion in education, inclusion itself, masters of inclusion, inclusive sailing, inclusive services, inclusive social projects, United Nations’ Convention on the Rights of Persons with

8 https://vk.com/dictionary_by_inclusion, accessed on March 8, 2020

55 Disabilities, inclusive volunteering, inclusive education, and inclusion opportunities in his hometown. Through his online and in-person work (holding game-based inclusion trainings, participating in research on inclusion, presenting and talking about inclusion, participating in in- class instruction at his university, researching ludic forms of inclusion), Stepan acts as one of the most hard-working institutors of inclusion, giving inclusion thus understood saliency and presence.

Tania

I called Tania for moral support more times than I care to remember. A practical and direct person, she is always honest about her opinions but also kind and generous. Tania met Oleg and other White Caners when they visited her hometown with a presentation of their program on inclusive sailing. That moment, she always says, was a turning point in her life, after which she found a job at a local library, won a cooking contest, completed courses on project management and pedagogy, and built a life-coaching program in her hometown. After several years of unstructured collaborations with White Cane, she opened a branch of White Cane in her hometown, organizing events and big projects by herself. She frequently goes back to the moment that moved her—that one encounter years back when she learned from White Caners that blindness could be experienced otherwise. Tania is married, employed at the library, and well-connected in her city, thanks to the projects she had organized and collaborations she had facilitated.

Masha

I knew Masha in college as a sighted student actor in the same student theater we both joined during our first year. We lost contact over the years, which explained my immense surprise when I saw her come to White Cane’s office to meet with Oleg and discuss with him the intricacies of her new life—now, as a blind person. Masha is a traveler, a dedicated environmental activist, and a communal living practitioner. New to blindness, she was eager to learn a lot and fast about

56 how to skip the period of reduced physical and social mobility that often happens to people with recently acquired blindness. She ventured to learn how to use a white cane on the fly, the same day when Oleg held his first lesson with her, on the same first day when she stepped into White

Cane’s office without a cane but with the help of a friend she had just made. She would always volunteer at any event we would invite her to—a series of workshops at a medical college, the

Inclusive Youth Games, city festivals, and sailing training. She would always come, full of enthusiasm and energy to learn and give. At the time of my fieldwork, Masha was not formally employed, so she depended entirely on her state-provided disability pension. Her interest in inclusion was more often an interest in an eventful life, new connections, skills, interaction, and communication with others.

For the purposes of this dissertation, it is essential to acknowledge that except a couple persons, socioeconomically all other blind interlocutors I met during fieldwork would be considered to be lower-middle-class, sometimes living in conditions and with an income of working poor (given that they often provide income for their families). They would be experts of distributive labor (Ferguson 2015), as a result of years of serving as nodes of tight networks of neededness. Projects and programs under the banner of inclusion served to many of them as an access point to resources and activities they would not otherwise be able to afford.

The inclusion complex in the formation of which they participated enabled them to acquire new forms of expertise, take up new career opportunities, connect with people and organizations that would otherwise hardly ever be interested in collaborating with a blind person, and build a strong network where knowledge, resources, ideas, and projects are shared. During fieldwork, I observed how inclusion-themed initiatives driven by these people (and many others) grew in scale, scope, and funding, transforming from low-key local practices to federally recognized and well-

57 funded initiatives that would span regions and evoke respect and admiration among various audiences. Their everyday work created the aesthetic and conceptual appeal of inclusion that would effectively recruit new allies in local governments, businesses, schools, and communities.

They cultivated themselves as inclusion experts, too, by completing educational programs, carrying out complex social projects, giving public lectures, collaborating on multi-sited inclusion- themed initiatives, and investing in their public appearance and presence. Products of the long histories of blindness and disability in Russia, unsatisfied with the state of disability affairs outside of the scope of the inclusion complex, they tirelessly work until this present moment to make inclusion I discuss in the second part of this dissertation matter.

Contribution to anthropological conversations

This dissertation research is situated at the intersection of the anthropology of disability, critical research on inclusion, and political anthropology, as it scrutinizes the emergence of new forms of belonging that mandate responsible and collective participation by both the disabled and the abled in the building of the world of inclusion.

Subjects with disabilities have long been conceived of in anthropology as facing the challenge of negotiating the stigma and marginalization caused by their embodied difference

(Ablon 1988; Edgerton 1993; Gwaltney 1970; Deshen 1992). As anthropologists Rasell and

Iarskaia-Smirnova (2013) argue, stigmatization of disability is an inherent feature of modernity but has different faces around the world (Eide and Ingstad 2011; Ingstad and Whyte 2007). With an aim to explore the ways in which people with disabilities negotiate their belonging, anthropologists have researched the techniques of citizenship practiced by disabled subjects across various cultural and national contexts (Estroff 1985; Frank 2000; Hartblay 2015; Livingston 2005;

Pols 2006; Rapp and Ginsburg 2011). In the biopolitical state, with its twin focus on productive ability and care, new populations of “disabled” subjectivities and citizens have arisen (Açiksöz

58 2019; E. A. Davis 2012; Kohrman 2005; Matza 2018; Petryna 2002; Phillips 2010). The repertoire of the ways in which people with disabilities engage with the state has inspired such concepts as biological citizenship (Petryna 2002) and mobile citizenship (Phillips 2010); anthropologists have also explored the multiple economies of debt that implicate the state and its disabled and injured subjects in flows of the mutual constitution (Açiksöz 2019; MacLeish 2013; Wool 2015). In addition to the state, organized communities—both state-sponsored and non-governmental—have been understood as loci where identities and socialities are cultivated (Friedner 2015; Nakamura

2006; 2013; Phillips 2010; Shaw 2017). Patrick McKearney (2017; 2018b; 2018a) and Tyler

Zoanni (2018b; 2019) further raise questions about the limits of liberal citizenship and recognized forms of belonging through researching associational forms and practices of belonging formed in communities of care for people with learning disabilities in the UK and Uganda respectively. Das and Addlakha’s (2001) concept of domestic citizenship, however, challenges the theoretical move to base citizenship exclusively on one’s belonging to an associational community. My project follows this lead to question the forms of citizenship and belonging that disability engages, with special attention to the possibilities that are allowed by the domain of inclusion. Informed by

Martha Lampland’s (2002), Loïc Wacquant’s (2012), and Douglas Rogers’s (2015) argument that the state and the market are always entangled and mutually constitutive, I examine the ways in which belonging becomes constituted through the relationship between the individual, the state, lateral connections, and business. In so doing, I build on Michele Friedner’s (2015) research, which shows how deafness becomes enfolded in the processes of value extraction in India as well as

Cassandra Hartblay’s (2014; 2015; 2019a; 2019b; 2017) work on the performative enactment of disability and citizenship through making use of in/accessible infrastructures in Russia. My research adds insight to our understanding of disability by exploring how disabled individuals in

59 Russia take up the task of contributing to the formation of the inclusion complex and how this work creates new forms of belonging and valuation of disability.

Furthermore, inclusive projects are a recent object of academic inquiry. David Mitchell and

Sharon Snyder (2015), as well as Jasbir Puar (2017), offer critiques of neoliberal inclusionism, showing how it celebrates the normalization of some disabilities while further excluding those subjects with disabilities who resist capitalism’s drive to extract value from them. Sara Ahmed

(2012) provided a detailed critical account of attempts to institutionalize racial inclusion in higher education in the liberal world. Similarly, sociologist Ellen Berrey (2015) addresses matters of racial inclusion and diversity in the contexts of the college admission process, housing and recruitment in the U.S. Although Michele Friedner et al. (2015) have contributed a comparative analysis of the categories of ‘diversity’ and ‘inclusion,’ scarce information exists about the forms that projects of inclusion take outside of North-Atlantic liberal contexts. My research offers an account of cultural variability in inclusion forms from postsocialist Russia. By addressing inclusion as a tool of domestic governance shaped by global forces, I present Russian grassroots- driven inclusive initiatives as part of the contemporary global condition. Additionally, my research provides an unprecedented examination of the ways in which inclusion as an organizational principle has been conceptualized from the standpoint of blind citizens.

My research also builds upon recent studies in political anthropology that explore strategies of state care (Gupta 2012; Fassin 2012; Feldman and Ticktin 2010; Nading 2014; Stevenson 2014), in particular the strategies of postsocialist state care and governance (Humphrey 2002; Ledeneva

1998; 2006; 2013; Rasell and Iarskaia-Smirnova 2013; Romanov and Iarskaia-Smirnova 2006;

Verdery 1996). Stephen Collier (2011), for example, examined post-Soviet biopolitical modernity by exploring the institutional and infrastructural reprogramming guided, as he argues, by a neoliberal style of reasoning. In the neoliberal era, Bockman (2012) argues, governance occurs

60 through situated collaborations of state actors, corporations, NGOs, and individual subjects. In mapping out different loci of governance, anthropologists of Russia have explored a number of contexts: changing property relations (Humphrey 2002; Lampland 2002; Verdery 1996) and urban material structures (Grant 2014; Hartblay 2017; Zavisca 2012), social and cultural effects of the coalitions between the petrostate and oil corporations (Etkind 2018; Rogers 2015), transnational aid (Caldwell 2004; Hemment 2007; Henderson 2003), forms of civic action (Beumers et al. 2018;

Hemment 2015), transformations in gender relations (Gal and Kligman 2000; Rivkin-Fish 2005;

2013), residential schooling (Bloch 2003), forms and channels of sentiments (Lemon 2000; 2008;

2009), and practices of remembering (Borneman 2004; Boym 2002; Oushakine 2009) and self- formation (Matza 2018; Zigon 2010), among others. They tend to agree in describing the postsocialist Russian regime as a hybrid of socialist and neoliberal features. A substantial body of anthropological scholarship has approached the systemic reorganization of the system of state welfare prompted by the transition as having been at odds with the “pregiven future” of “textbook capitalism” (Burawoy and Verdery 1999). Instead of a smooth transition to the “promised world of capitalism” (Buyandelgeriyn 2008), it created cracks (E. Dunn 2000; Field and Twigg 2000) and ontological insecurities (Shevchenko 2009) that have been managed by informal support networks (Caldwell 2004; 2016; M. A. Parsons 2014) and increasingly precarious forms of sociality (Höjdestrand 2009; Humphrey 2002). Although substantial research has been done on the everyday experience of governed socialist (Yurchak 2006) and postsocialist subjects (Patico 2008;

Pesmen 2000; Ries 1997), little research has been done on coalitional formations between businesses, governors, and the governed in creating social programs and adjusting their effects.

My research addresses this gap by tracking the development of the formation of the inclusion complex in Russia.

61 Russia’s attempts to institute a culture of inclusivity developed in response to Russia’s ratification of the UN’s Convention on the Rights of Persons with Disabilities and the policy changes triggered by this ratification. By tracing coalition-making efforts between policymakers and grassroots activists, this research contributes to the contemporary scholarship on well-meaning public policy. It considers the economic and ethical concerns of the governed subjects in tandem with the materially framed utopian scenarios of the governors, thus adding insight into postsocialist tactics of distributing agency in policymaking and implementation. Building on and expanding the critical scholarship of moral and political collateral effects of well-meaning state care policies and regulations (Gupta 2012; Povinelli 2002), this study serves as a vantage point from which to better understand the strategies and tactics of a postsocialist state that co-opts (Nakamura 2002) civic initiatives into coalitional projects of social redress.

My ethnographic project offers a critical account of social inclusion. The value of social inclusion as a principle of social organization has been naturalized at the global and national levels.

My research provides insight into the cultural variability of such categories as inclusion, disability, and dignity by unpacking the genealogies of culturally specific interpretations of these categories in the context of postsocialist Russia. I examine local postsocialist micro-processes of interpreting and deploying the internationally recognized inclusion mandate to reveal how liberal hegemonic devices of political critique and social change—such as inclusion—cease to serve as tools of liberalization. I argue that they instead become domesticated and produce alternative concepts of social justice, dignity, and disability. In this sense, my work critically interrogates inclusion’s universalized moral value and documents the social effects produced by different, sometimes contradictory, interpretations of inclusion, which populate the contemporary Russian landscape of governmental and civic initiatives of social betterment. My interlocutors, the largest part of whom are blind, offer a postsocialist inflection of inclusion that challenges liberal ideals of independence,

62 liberty, and obligation to the self, others, and the state. This inflection of inclusion offers insight into the strategies and tactics a postsocialist state uses to co-opt businesses and civic initiatives into coalitional projects of social redress.

63 Part I THE INCLUSION COMPLEX

64 Chapter 1 A postsocialist journey of inclusion

Introduction: When inclusion travels

“Everybody knows about inclusion, everybody knows that we have to be inclusive, and yet nobody knows how to do it,” Lilya told me, sighing. A head of a regional medical college, she remembered how the new educational standards had started—they were designed to make Russia’s schools inclusive. Beginning on September 1, 2013, federal law 273-FZ “On Education” established new terms of inclusive education and effected a movement among institutions known as ‘special (corrective) schools’—they now had to turn into ‘schools of general education’9 by

2016, which was designed to stimulate the mainstreaming of students with disabilities into regular schools. Although by 2017, there were both special schools which could accommodate the needs of students with disabilities (blind, deaf, deafblind pupils, pupils with severe learning and psychiatric disabilities, etc.) and mainstream schools where children with and without disabilities would study side by side, the number of disabled attendees of inclusive schools increased by 18%, constituting close to 60% of the overall number of disabled school students (Minobrnauki.rf 2017).

Instead of celebrating changes toward a more progressive politics in relation to individuals with disabilities, educators at various levels were in panic. They were limited in time and resources to teach mixed classrooms, had no skills and had received no instruction on how to work in mixed classrooms; they also feared failing audits and checkups and thus facing financial, moral and/or professional punishment. As a result, many were reluctant to be a part of this reformation. On my

9 In fact, the closure of corrective schools meant that part of students—those who whose needs may be accommodated in mainstream schools—were channeled to mainstream schools while others stayed in special schools that provide special training and care, if such are needed. Thus, the system reached more complexity. Some institutions lost the status of schools and became educational centers that have a right to issue matriculation documents equal to the ones from a regular school. Others changed the full name of their institution, from ‘corrective’ to ‘carrying out adapted general curriculum’ which was primarily a bureaucratic intervention. And yet some schools were shut down (which was read as a sign of the governmental decision to cut the funds spent on education).

65 first week in the field, I met a mainstream primary-school teacher who exclaimed to me, “So tell me, how do I do it?! It’s a disaster! I have a student with mental disabilities in my class and [this situation] is ruining everything, [this situation] slows everybody down and doesn’t benefit the disabled child. How can anyone think this is a good solution?!” She was unhappy and disoriented, sincerely hoping to get an answer from me on how to make a mixed classroom that was labeled

‘inclusive’ work well. Having to submit to the top-down imperative of becoming inclusive, parents, teachers and school administrators were not all uniformly enthusiastic—with no proper infrastructure in place, no idea of how to make mixed classrooms work well, and no understanding of why they should do so. This disbelief in, and disillusionment with, discourses approved by large international bodies such as the UN, and the reluctance to keep trying to make these discourses work, show that inclusion—here, inclusive education—was (and still is) a complex and controversial public object.

Although the first international document that codified the commitment to inclusion of people with disabilities (the UNESCO Salamanca Statement 1994) concerned the domain of education, my inquiry goes beyond the boundaries of the system of education. Instead, I am interested in the social inclusion of people with disabilities across various domains of life.

Specifically, my inquiry is driven by the questions What processes drive the cultural change toward inclusivity at the everyday level? How and why do people—disabled and nondisabled— value or refuse inclusion and how do they learn to do so? And what material forms does the social inclusion of people with disabilities take in Russia?

In 2012, the Russian Federation ratified the United Nations’ Convention on the Rights of

Persons with Disabilities (UNCRPD), which served as a powerful tool to institutionalize inclusion in the domains of education, work, and employment, habilitation and rehabilitation, as well as

66 international programming.10 The ratification of the UNCRPD in 2012 was long awaited (for a report on the rallies of people with disabilities for the ratification of the UNCRPD see Novikov

2008). It became a consequential action for Russia internationally and domestically, as it helped the country claim its status as a modern state that provides sufficient support to its underprivileged citizens, at the moment when the international community was critiquing the soon-to-be Host of the Winter Olympics and Paralympics (Russia hosted the Olympics and Paralympics in 2014) for its mistreatment of the rights of sexual minorities (for example see Clarke 2013; Flood and Walker

2014; Leslie and Tilley 2014). Taken together with the Human Rights Watch reports (2013; 2015) that discussed a series of severe violations of disabled persons’ rights in Russia, the country’s ratification of the UNCPRD and the subsequent changes in the legislature, undertaken to make the legal system congruent with the UNCRPD’s terms, present a complex situation with regards to disability matters in the country.

I do not mean to imply that the UNCRPD as a document caused radical changes in the

Russian disability climate. The relation between Russia’s ratification of the UNCRPD and the development of what I call the inclusion complex is one of correlation, at most. The terms and ideological orientation of the UNCRPD were not uncritically adopted in Russia. Yet various

Russian inclusion practitioners I met during fieldwork developed their interpretations of inclusion

10 These are the domains in which inclusion is supposed to be established, according to the UNCRPD. And yet, in practice, the Russian domains of inclusion didn’t align neatly with the domains identified in the UNCRPD. If initially in the early 2010s one would hear ‘inclusive education’, in 2017, ‘social inclusion,’ ‘inclusive tourism,’ ‘inclusive practices,’ ‘inclusive theater,’ ‘inclusive groups,’ and ‘inclusive economy’ would also surface in public discourse. Interestingly, these labels connoted practices in which inclusion was configured differently. For example, ‘inclusive tourism’ meant tourism organized exclusively for the disabled. ‘Inclusive practices’ mostly stood for practices organized either exclusively for the disabled or with the participation of the disabled; sometimes just the presence of one disabled individual would render a practice inclusive. ‘Inclusive theater’ meant theater performances that are staffed by disabled actors only, or, more rarely, troops contained a minority of the nondisabled. ‘Inclusive economy,’ on the contrary, stood for economic practices in which disabled and nondisabled individuals worked together. In general, the Russian language permits qualifying many nouns with the adjective ‘inclusive’ yet in practice the abovementioned contexts were the most common. ‘Social inclusion’ was mostly discussed in theory, for there have been no established mechanism to check if mainstream practices in the society are organized and undertaken as inclusive.

67 as a result of grappling with the UNCRPD. As Gaymon Bennett (2016) has pointed out regarding the case with the UN Commission on Human Rights, despite its ineffectuality as a regulatory document, the conceptual basis of the Universal Declaration of Human Rights—and in particular, the figure of the human—offered operational concepts that various actors and institutions used as a given. I observed a similar process among my disabled and nondisabled interlocutors—NPO workers, governmental officials, volunteers, and activists with disabilities referred to the ideas of inclusion embedded in the UNCRPD as a social fact to be adapted to the reality of Russian life.

As anthropologists Michael Rasell and Elena Iarskaia-Smirnova note (2013, 8), such formal changes (ratification and the subsequent legal changes) did not materialize in their original form, morphing and mutating under the pressure of local contexts and forces.

Through the ratification of the UNCRPD and collaborations with international donors and

NPOs, the inclusion mandate traveled to Russia’s complex domain of disability politics, thus becoming a part of the broader system of social provisions and social policies. Today, the inclusion mandate not only coexists with some exclusionary laws (such as the prohibition to adopt children for group 111 people with disabilities) that produce disabled subjects as ontologically different and unequal (see more on legislating negative ontologies of disability in F. K. Campbell 2005). It also coexists with other, pre-existing, organizational principles governed by entirely different cultural logics: those of charity, pity, and segregation in relation to people with disabilities. Poet Grigoriy

Dashevskiy, who was a leg-amputee, wrote about the invisible segregation that worked insidiously in Russian urban spaces: “[the invisible segregation] is so strong that it long ago put people into a

11 In Russia, disability status is attributed as either group 1, or group 2, or group 3. Membership in these groups is designed to reflect the degree to which an individual is deemed to be capable of functioning independently. Group 1 is attributed to those who exhibit signs of complete incapacitation and dependence on others in sustaining their lives. Group 2 is attributed to those who can live a social life with the help of others. Group 3 is given to individuals who may live a relatively independent life with the help of assistive technologies. Many of my blind interlocutors, who work and live independently, have group 1 disability, despite their capacity to function independently.

68 ghetto from which they do not [even try to] get out” (Dashevskiy 2008, translation mine). Anton

Borisov went as far as to claim that people with disabilities in Russia were

citizens not of a great oil-nuclear, space state, like the rest of the population. No, Russian people with disabilities [were] citizens of another—poor, exhausted, undignified—state that is ignored by the oil-and-gas arrogant beauty [of the strong oil-state], despite the fact that the population of the discarded one is… about 15-17 millions (Borisov 2008, translation mine).

Finally, some initiatives that used the argument of shared sociality as a tool of rehabilitation—an argument similar to the one often encountered in contemporary inclusion-inspired discourse—in reality, produced unexpected and harmful effects. As Molchanova wrote: “Bureaucrats motivated the [principle of] shared cohabitation by saying it is a rehabilitation event: “an exchange of life experience” between elderly citizens and younger people with disabilities. What life experience do they mean? Of loneliness, drunkenness, etc.? And they burn out together too” (2008, translation mine). Even after the ratification of the UNCRPD, many people with learning disabilities are still in internats12, with many stories of human rights violations and mistreatment circulating about them (for example, Vinogradova 2015). Many disabled students are homeschooled because mainstream schools do not provide sufficient infrastructures and present an unwelcoming climate, although some social reform has taken place to create sufficient and operational social services

(Allenova and Tsvetkova 2016). In other words, the adoption of the inclusion mandate did not unify the cultures and politics of disability and ableism; instead, it further complicated and diversified an already complex field.

Although inclusion is listed among one of the principles of the UNCRPD—“[f]ull and effective participation and inclusion in society” (Article 3, (c) p.5)—in the document, it is not defined. There, it is used as a self-explanatory concept and a qualifier—inclusion as an

12 An institution that serves as a home for persons with severe developmental, intellectual and psychiatric disabilities; people with physical disabilities who need substantial assistance and who cannot secure an in-home care also may be found among residents of an internat.

69 organizational principle, inclusive as bearing qualities that pertain to inclusion— in articles on

Education, Habilitation and Rehabilitation, Work and Employment, International cooperation13. A key concept and a fundamental part of the document designed to produce changes in relation to the wellbeing of persons with disabilities globally, without a definition, inclusion becomes a naturalized “self-evident” term that hinders any critical endeavor. To critique inclusion becomes equal to critiquing the idea of social progress.

Else Øyen (1997) went as far as to argue that social inclusion and social exclusion are not analytic concepts but political ones, created not to nuance and deepen our understanding of social problems but instead to direct the attention of politicians elsewhere. Didier Fassin’s work may help us resolve this tension by paying attention to the epistemic and political effects that the circulation of this concept produces. Inclusion here becomes part of what he called humanitarian government, a feature of contemporary political systems in which “moral sentiments have become generalized as a frame of reference in political life” (2012, 247). Questioning such government becomes risky—due to the strong emotional and moral appeal of the value of inclusion, a critical engagement with inclusion may be perceived to be an instance of relativism or cynicism (Fassin

2012, 244). It this situation, practitioners and critics find themselves in a position where they cannot evaluate, challenge, and question inclusion because of its highly normative quality despite its conceptual and cognitive shortcomings. In other words, all we know about inclusion is that it

13 (1) the states that ratified the Convention shall take measures “to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community” (p. 13, Article 19 on Living independently and being included in the community, (2) Article 24 Education: “States Parties shall ensure an inclusive education system at all levels and lifelong learning directed to”(p.16); (3) Article 26 Habilitation and rehabilitation: “States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.” (p.19) (4) Article 27 Work and Employment: “States Parties recognize the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.” (5) Article 32 International cooperation: “Ensuring that international cooperation, including international development programmes, is inclusive of and accessible to persons with disabilities;” (p. 24).

70 is good, but we do not really know how to do it or what makes a context inclusive. In an analogous way—as a norm without spelled-out rules or practical criteria—it traveled to Russia.

The talk about inclusion began in Russia after the ratification of the UNCRPD when the country was preparing to host the Winter Olympics and Paralympics in Sochi 2014. This was

Russia’s first time hosting the Paralympic Games, which were organized in 2014 against the backdrop of the USSR’s previous refusal to host the Paralympics in 1980, motivated by Soviet officials’ statement that “Moscow’s stadiums and athletic facilities were not adapted for athletes on wheelchairs” (Fefelov 1986, 116, translation mine). Thus, by committing to be bound to the

UNCRPD, Russia committed to the morally prescriptive vocabulary of the document that “takes to a new height the movement from viewing persons with disabilities as “objects” of charity, medical treatment, and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent, as well as being active members of society” (UN, Department of

Economic and Social Affairs, Division for Inclusive Social Development n.d.). Such high-level acknowledgment of the disability rights discourse was unprecedented and launched a series of reforms in Russia (legal regulation of education, social protection, welfare, employment).

With the adoption of the new policy, Russian scholars and practitioners started producing analytical and instructional texts describing what they thought inclusion was (Alyokhina 2013;

Suntsova 2013), what values it is based on, and how it is different from other organizational principles (Ahmetova 2013), as well as capturing the experiences of inclusive classrooms

(Belogurov, Bulanova, and Polikasheva 2015; Guseva 2010). Although lacking a substantial definition and clear pragmatic form, sometimes causing panic and disdain among practitioners, for academics, lay public, and governors, inclusion as an aspiration ideal overall had been naturalized as morally good and progressive. As flows of public and private capital were channeled toward

71 creating inclusive spaces and practices, little regulation or monitoring of this process was put in place. As a consequence, this arrangement led to the diversification of different ways to practice inclusion, where self-proclaimed inclusion practitioners capitalized on inclusion’s social value: insufficient clarity on how to do inclusion fueled the proliferation of ways to do inclusion. Thus, the concept’s vagueness (Durbin 2015) turned out to be productive—on the ground, it supported a great variety of interpretations of what qualified as “real” inclusion.

What unites all these interpretations of inclusion is their target population, which is persons with disabilities. If in North America and the UK, inclusion may refer to racial matters (Ahmed

2012), gender (Stalker and Prentice 1998), or migration (De Genova 2013; Sainsbury 2012), inclusion in Russia is strongly associated with disability. Perceived by nondisabled people as a nonthreatening minority and a token of feel-good diversity (Friedner 2017), the disabled population becomes an object (and thus the spectacle) of paternalistic bureaucratic and state care

(see also Gupta 2012; Stevenson 2014; Povinelli 2002). As opposed to the more conservative state governance of sexual difference (Essig 1999), immigration and national belonging (Grafova 2016) and racial and ethnic differences (Zakharov 2014), the state’s proclamation of disability rights and the strategies of biopolitical management of disability launched after the ratification of the

UNCRPD made the state, which had been previously accused of passing intolerant and backward legislation, look modern and good (Kohrman 2005; D. T. Mitchell and Snyder 2015).

Part I of this dissertation discusses the broader formation that I call the inclusion complex.

The three chapters of Part I engage with the broader domain of inclusion and the multitude of actors whose work and life are implicated in the operations of the inclusion complex. Chapter One provides an analysis of the concept of inclusion, as it emerged, has been conceptualized, and transplanted into Russian contexts. I offer various models of inclusion that I have observed being put in practice during fieldwork, to illustrate the scope of difference in various interpretations of

72 inclusion. My goal, however, is not to provide an exhaustive catalog of ways to practice and understand inclusion in Russia. Russia’s size and the diversity of actors and situations in which inclusivity lands prevents the possibility of any such undertaking by any one anthropologist. My interpretation is one of a segment of the inclusion complex; the segment I had the privilege to observe and partake in. Observing and comprehending how things, ideas, feeling, values, and people move around within that segment of the inclusion complex allowed me to get a glimpse into the forces that constitute what inclusion is, what it can be, and how it affects others. There are other segments that have remained inaccessible to me and my research. I have tried to provide the most nuanced and careful analysis that my ethical, epistemic, professional, and personal commitments have allowed. As a result, my account strives to contribute to an understanding of inclusion as a portable, yet politically and morally charged tool. I seek to defamiliarize inclusion and show that there is nothing obvious about addressing ableism, which in itself is a global phenomenon despite its different local shapes (Rasell and Iarskaia-Smirnova 2013).

Thus, Chapter One is organized as follows. I begin with an overview of academic engagements with inclusion, which in the majority have provided a critique of inclusion initiatives in liberal societies. Then, I zoom into conceptualizations of disability inclusion, in particular, to introduce the existing critiques and appreciation of inclusion when it targets the category of bodily and mental difference specifically. As I begin my exploration of postsocialist inclusion, which has so far received very little scholarly attention, I offer a brief overview of the first three decades of

Russia’s development after the collapse of the Soviet Union, to highlight the patterns and habits of civic activism and concerns which would often be applied to or challenged by the imperative to become inclusive. It is in this climate and environment that the inclusion mandate was inserted.

Finally, I provide a broader commentary on how the inclusion mandate was plugged into Russia’s broader sociopolitical system—what processes and habits of action it aligned with and how this

73 alignment produced no impulse to reorganize the society infrastructurally and produce new systems of accountability to address endemic ableism. I do so by describing the three models of inclusion that I observed during fieldwork—although diverse in their strategies, tactics, and understandings of disability inclusion, all of them are united by the lack of structural critique their reliance on the figure of the disabled as a subject to be cared for and a subject to provoke morally- motivated action. By the end of this chapter, the reader will have developed a more nuanced understanding of how liberal tools of social progress, such as inclusion, travel to and become domesticated in a postsocialist society such as Russia.

Inclusion as academics know it

The history of social inclusion is rooted in civil rights movements outside of Russia. The concept emerged in the 1970s in France, as a response to the social problems of les exclus: the disabled, single parents, and the uninsured unemployed (Buckmaster and Thomas 2009, 2). A sign of broken social solidarity, social exclusion (an imagined binary pair of social inclusion) served as a symptom to be remedied by a series of governmental interventions. “This term is used to point to a lack of opportunities (due to factors such as disability and poverty) to participate in social, economic and political life in mainstream society due to the absence of resources, rights, goods, and services. Inclusion policies by governments and institutions to improve the health, employment, and housing opportunities of people affected by social exclusion (Buckmaster and

Thomas 2009) were schemes to tackle social exclusion” (Friedner et al. 2015, 15). Social inclusion thus spoke of those who were excluded from national safety nets and protections and worked as a governmental tool to reform and reorganize the social system in terms of the rights of citizens to have equal access to nationally provided resources. In this light, social exclusion and its subsequent remedy—social inclusion—emerged within liberal contexts and relied heavily on the values that underlay liberal political systems. Based on the idea of equality for all citizens regardless of their

74 social statuses, and their political right of self-determination and self-actualization, inclusion was and still is closely tied to the discourses of civil rights and the history connected to their development.

A crucial international document that features the concept of inclusion is the World Bank’s

2013 Inclusion Matters: The Foundation For Shared Prosperity, a 253-page major report on social inclusion in development. This document presents an interpretation of inclusion as a principle of social organization that is based on the intended engagement of a plethora of marginalized communities (which is distinct from the Salamanca Statement, the UNCRPD, and the Russian concept of inkluziya, all of which target one such social group—people with disabilities).

Inclusivity discussed in this report is a political tool of ensuring that all marginalized groups enjoy similar access to publicly distributed goods and opportunities.

The report provides a two-fold definition of social inclusion. One definition is offered to policymakers, with the intention that it would guide them in their work: “the process of improving the terms for individuals and groups to take part in society”(World Bank 2013, 3). Here, inclusion becomes inherently connected to the concept of participation in society. The second definition—

“the process of improving the ability, opportunity, and dignity of people, disadvantaged based on their identity, to take part in society” (World Bank 2013, 4)—spells out what may lie within the spectrum of “the terms of individuals and groups to take part in society.” In particular, these terms include “the ability, opportunity, and dignity of people.” Inclusion thus becomes an intentional measure to ensure the equality of participation in society.

The authors make further conceptual distinctions: inclusion is neither synonymous with equality nor is inclusion the absence of poverty (for eradicating poverty does not always lead to social inclusion). They interpret social exclusion—the inability to participate in society equally— as a compound effect of multiple forces—poverty, here, may be only one of them or none at all.

75 Sexism, ableism, classism, religious discrimination, discrimination based on citizenship status, linguistic particularities, ageism, and other forms of discrimination may contribute to creating conditions in which individuals and entire social groups are prevented from participating in designing and maintaining the social. Addressing the problem of social exclusion calls for careful intersectional analysis, not for the application of a portable standardized solution, the report argues.

This report also explains why inclusion matters. The reasons provided by the report range from ideological to economic:

Social inclusion matters for itself. But it also matters because it is the foundation for shared prosperity and because social exclusion is simply too costly. There are substantial costs—social, political, and economic—to not addressing the exclusion of entire groups of people (World Bank 2013, 2).

Exclusion has deleterious consequences for human capital development as well. For instance, a recent report finds that children with disabilities are less likely to start school than children without disabilities and have lower rates of staying in school (WHO and World Bank 2011). Similarly, women in India who experience spousal violence are less likely to receive antenatal care and more likely to have a terminated pregnancy or still birth, and their children are more likely to be stunted than are children of mothers who have not been abused (World Bank 2011a).

It begins by claiming the inherent value of inclusion—similar to a moral value, inclusion does not have an external source. Yet soon enough—in the second sentence—the report’s line of reasoning shifts: instead of relying on the ideological persuasion of inclusion’s inherent value, the report refers to an economic mode of justification, aligning inclusion in status to other expenses that society has. It is of no surprise that such a justification is presented in this document, given that it presents inclusion as a matter of development. Within this conceptual configuration, society is imagined to be a pool of resources that have to be managed well. Due to the imperfections of social and political systems, some of these resources remain untapped or wasted. The economic loss from not allowing these resources to be plugged into the economy materializes as wasted opportunities for further development, a strain of public welfare (as a result of not training social members to sustain themselves independently) and the reconstruction expenses that society pays after protests

76 and uprisings of the marginalized groups. The message here becomes that exclusion is expensive, and societies are at a loss for allowing exclusion to take place. As rational calculating subjects, readers of the report must agree that it is simply costly—hence, irrational—to keep societies exclusive.

As stated earlier, in Anglophone scholarly literature, to this day, inclusion as a mechanism of belonging surfaces in contexts pertaining to various marginalized populations, people with disabilities being just one particular case. Who constitutes the polity, and by extension, the national body politic—and who does not get to be included as a valued member—has been part of discussions in political philosophy and the philosophy of the state for centuries. Political philosophers—John Stuart Mill, John Locke, Immanuel Kant, Georg Wilhelm Friedrich Hegel,

John Rawls, Martha Nussbaum, among others— developed various theories of justice that tackled how the rights of the citizen should be distributed and organized in a polity. By delineating who belongs to the liberal polity—who counts as a rational subject capable of self-determination— these philosophers included some and excluded others (sometimes women, children, “savages,” the “feeble-minded” and other nonnormative subjects). Among other political theories of justice, the capabilities approach has offered a revision of liberal theories of justice to include people with physical and mental disabilities and nonhuman animals in the considerations about the ‘just’ ways of distribution and organization of the political world (see Nussbaum 2007). Multicultural critique responded to liberalism’s “[imposed] false universality that discriminates against minorities of all kinds” (Barry 1997, 3), by shifting the understanding of the rights-bearing subject from individuals onto groups (Friedner et al. 2015). Yet the very idea of inclusion as a mechanism of belonging remained the same.

77 Feminist scholars have provided supple critique to the feel-good discourses of diversity and inclusion14 (Ahmed 2012; Alexander 2006; Mohanty 2003; Puar 2017; Puwar 2004). Their analysis has traced how discourses of diversity and inclusion discourses often reproduce existing power structures instead of redesigning them. Specifically, Chandra Talpade Mohanty (2003) argues that diversity is a discourse of history-less “empty pluralism.” Diversity and inclusion configure different social groups15 as contained entities, naturally existing as culturally distinct and equally positioned. Such a construal disregards the broader historical forces of the systemic level that group people together and unequally distribute resources and values among them. In other words, groups are created unequal. Further, this interpretation conceals retrenched violent and abusive tensions that emerge as a result of such a grouping. Mohanty writes, “[t]he central issue, then, is not one of merely ‘acknowledging’ difference; rather, the most difficult question concerns the kind of difference that is acknowledged and engaged” (Mohanty 2003, 193). In accord with Mohanty, I wish to raise an additional question concerning the material forms that this engagement takes.

M. Jacki Alexander (2006) has offered a powerful critique of institutional diversity, a terrain of complex power relations concealed behind the banner of glorified politics. She writes,

“[d]iscourses, which on the surface appear benign, become quite aggressive in the context of an ideological struggle to transform the relations of representation, for the institution would want its definitions to stand as the only legitimate claims relating to the subjects of whom diversity is ostensibly about” (Alexander 2006, 152). She tracks how documents, produced and issued at an appropriate pace, create an impression of flourishing inclusivity and diversity: “they constitute the ideological work of representing representation” (Alexander 2006, 154). She reviews programs,

14 In these texts, the authors use diversity and inclusion interchangeably. 15 Mohanty is focused on ethnic and racial differences, in particular, but I content that her argument may be extended to different groups, including people with disabilities.

78 brochures, documents, positions, and their representations, to discover a substantial gap between the represented image and the lived reality. Against the spectacularized image of racial differences sharing the same university, people of color were often left to navigate this space without any proper infrastructure. Thus organized, the field of relationships connected to this discourse offers individualized diversity—without acknowledging the historical process of producing entire populations as disenfranchised, abused, robbed, and excluded—and here, Alexander’s argument is close to the one of Jasbir Puar (2017).

Turning to a different aspect of inclusion—spatiality—Nirmal Puwar (2004) takes up a critical examination of the coupling of spaces and bodies. More specifically, she examines what happens when women and racialized minorities enter spaces that were designed and constructed for as well as inhabited by white men. She introduces the concept of the somatic norm to denote

“[s]ome bodies [that] are deemed as having the right to belong” (2004, 8). Those who have systemically and systematically been imagined as “out of place” are those considered to be outsiders, or what she calls space invaders:

Some bodies are deemed as having the right to belong, while others are marked out as trespassers, who are, in accordance with how both spaces and bodies are imagined (politically, historically and conceptually), circumscribed as being ‘out of place’. Not being the somatic norm, they are space invaders. The coupling of particular spaces with specific types of bodies is no doubt subject to change; this usually, however, is not without consequence as it often breaks with how bodies have been placed (Puwar 2004, 8).

Both are heuristic categories because they only gesture at analytical constructions. The real-life experiences fall within the spectrum in between the two poles—that of the somatic norm and the space invader.

In her book On Being Included, Sara Ahmed (2012) speaks of inclusion in institutional, particularly, academic, settings:

Inclusion could be read as a technology of governance: not only as a way of bringing those who have been recognized as strangers into the nation but also of making strangers into subjects, those who in being included are also willing to consent to the terms of inclusion. A national project can

79 also be understood as a project of inclusion—a way others as would-be citizens are asked to submit to and agree with the task of reproducing that nation (2012, 163).

Her argument is close to Goodin’s (1996) critique that contends that measures and actions justified by inclusion policies often do not produce systemic solutions and instead, perpetuate the exclusionary—and often harmful—normative logic of the social system, merely allowing another class of subjects to be co-opted, or, in words of Jasbir Puar (2007, xii, 24, 35, 36 cited in Ahmed

2012, 163), “folded into life.” Finally, Ahmed (2012) critiques inclusion as a technology of happiness. In the public imagination, it serves as a ‘solution’ that bears the hope of righting the wrong. In this sense, it comes packaged with a certain progressivist temporality (unidirectional, linear) in which the timeline becomes one of evolution, fixing, and the inevitable advent of a bright and happy future (see also Edelman 2004; Kafer 2013). Most importantly, it comes with the hope that there will be a moment in which everybody will be included, in which happiness and justice arrive. This hope for and valorization of the future often come in handy for justifying the disregard of the ways in which the past resurfaces in the present, in which ableism and disablement stubbornly return and resist erasure.

Much more scholarship exists on social inclusion’s binary twin—the concept of social exclusion (Buckmaster and Thomas 2009). Critical accounts offer examinations of the ways social exclusion unfolds: through spatialization (Low 2011; Naberushkina 2012; Rattray 2013), through the cascading of chronic challenges (Manderson and Warren 2016; Reid 2009), through the debilitation of the subject’s social agency altogether (Saraví and Makowski 2011), among others.

Social inclusion policies adopted in the EU, the UK, Australia, and other countries, in turn, often do not function as intended and instead produce a series of collateral, sometimes negative

(DeCuyper 2005), effects on their target populations. Despite the proclaimed well-meaning intentions motivating policies of social inclusion around the world, substantial critiques have

80 targeted the concept (Buckmaster and Thomas 2009): it is ill-defined and thus takes too many diverse and divergent meanings and forms (Silver 1994); it stands for a governmental attempt to bring subjects on the labor market without questioning the terms and organization of the latter and downplaying the significance of unpaid labor and other forms of societal contribution (S. Taylor

2004); it rests on the assumption that inclusion is a top-down imperative which produces a one- sided image of the excluded as victimized and passive (Goodin 1996); it attributes default value to the dominant society and does not leave room for the critique of the broader system (Ahmed 2012,

163).

Anthropologists Gonzalo Saraví and Sara Makowski (2011) contribute a conceptualization of social exclusion as a form of neglected citizenship. This neglected citizenship manifests itself as “the fragility of the links between the individual and society in some vulnerable social groups; in fact, the term exclusion refers to an incomplete or broken process of social integration” (Saraví and Makowski 2011, 316). The social abandonment that their unemployed interlocutors in Buenos

Aires and Mexico City experience takes place in the form of the (projected into the future) inability to secure any employment and the past family and institutional abuse. The authors' valuable contribution to the existing conversations about social exclusion is their concept of perforated subjectivities, that is, “social” pathologies of the self. They argue that it is both the structural conditions and the individuals affected and shaped by these conditions as having perforated subjectivities that further deepen the exclusion. The problem with social exclusion becomes that it produces individuals who cannot be fixed and included in existing social systems; they have no future there. The unique approach of these authors is that they take into account the subjects themselves: “these subjects of exclusion who appear deprived of social containment are unable to develop social networks, to assume a more active role in their own biographies and to break through the vicious circles that are formed between social abandonment and individual self-

81 development” (Saraví and Makowski 2011, 331). By identifying the unfixable mismatch between exclusive social systems and subjects that fail to meet these systems’ imposed yet naturalized requirements of valued membership, Saraví and Makowski identify the limits of depoliticized inclusion.

Finally, Nicolas de Genova (De Genova 2002; 2013) introduces the concept of inclusion through exclusion. He analyzes the inclusion of labor migrants who become included into the US national contexts through the subordination of their labor. He concludes that the contemporary system of border policing and immigration law is laid out in a way that permits the inclusion of labor migrants (under horrendous conditions) covering this inclusion through the serial production of spectacles of exclusion.

Disability Inclusion

At the same time, in both liberal and multicultural theories, the citizen-subject—individual or a member of a group—has mostly been imagined as able-bodied and in control of their body, which neglected to acknowledge citizens’ corporeality (Mol 2008). Moreover, as Fiona Kumari

Campbell (2005) argues, disability with its strong association with coalitions of interdependency is antithetical to the project of Western liberalism, which prioritizes freedom in the form of autonomy and independence. The only model of inclusion that liberalism has to offer is inclusion through assimilation, which presupposes that people with disabilities make all the effort to progress toward autonomy or will do so when an opportunity arises. This happens because, in the liberal political corpus, disability exists as negative ontology, that is, as something that is per se unthinkable, fundamentally undesirable, and devalued.

The limits of liberal inclusion have been tested by multiple marginalized communities and subjects whose corporeal practices have been deemed incommensurable with the liberal moral project (Povinelli 2002). The subject of the liberal nation is often imagined to be able-bodied and

82 able-minded, which is captured by Snyder and Mitchell’s (2010) concept of ablenationalism defined as “the degree to which treating people with disabilities as an exception valorized able- bodied norms of inclusion as the naturalized qualification of citizenship” (Snyder and Mitchell

2010, 113). According to this logic, the population of exceptional subjects—people with disabilities—is configured in liberal societies as a biopolitical category whose worth is continuously under threat and in need of justification, in order to be considered an equal member in the distribution of national resources, privilege, and care according to its operative hierarchies of citizens’ worth. The disabled population in the logic of ablenationalism becomes the population of the ‘deserving poor’ that becomes implicated in the relationships of charity.

To this conceptualization of disability as negative ontology, Robert McRuer (2006) adds that neoliberalism as a socioeconomic system summons the production of flexible subjects—those who can be rehabilitated, transformed, whose difference should exist contained within the delineated spectrum. These subjects serve the purpose of being spectacularly tolerated—by those able-bodied, heterosexual benevolent individuals. Neoliberalism, McRuer’s crip theory has it, does not create conditions where difference thrives; instead, it creates conditions within which some expressions of difference are contained and tamed, to further glorify those who remain in the position of privilege and decision making. Neither liberalism nor neoliberalism offers anything beyond the concealment of compulsory able-bodiedness and compulsory heterosexuality.

In his book The Difference That Disability Makes, Rod Michalko writes:

One way to explicate the connection between disability and contemporary society is to frame it, at least for the moment, within the paradigm of a “struggle.” The struggle is not about whether or not disability should be included in society, for where else can it be? Rather, the struggle is over how disability should be included. Inclusion, however, has taken on a very specific meaning in contemporary understandings of disability; it is posed as the ultimate solution to the problem of exclusion. Disability is conceived of instrumentally insofar as it represents an “abnormalcy” in relation to the body understood in functional terms. The “natural body,” as functional, comes equipped with the organic and mechanical predisposition to develop such functions as walking, hearing, seeing, and the rest. The “disabled body” is posited as lacking one or more of these

83 functions. Both disability and nondisability can thus be framed within this instrumental conception of the body (Michalko 2002, 144).

A blind scholar based in Canada and writing with Canadian contexts in mind, Rod Michalko argues that inclusion relies on the instrumental conception of the body and provides assimilationist solutions to the perceived problem of the dysfunctional body and mind. This conception presents the body and mind as an assembly of functions and abilities. Those whose bodies do not do what the majority of other bodies and minds can do are labeled disabled and considered exceptional or abnormal. When different subjects reach an ability to do the same or similar scopes of actions and tasks, inclusion may be considered to be achieved. According to this conception, included bodies are those that stop being exceptional and become, instead, ordinary by performing everyday tasks

(Michalko 2002, 153).

Approached from a different angle, disability inclusion has been conceptualized through a triangulation of inclusion—the social model of disability—the disability rights movement. This conceptual constellation distances itself from the assimilationist account. Instead of focusing on individual abilities to perform specific tasks and activities, the social model of disability locates disability at the juncture between the socially constructed environment and the individual. The social model of disability configures disability as an effect of disabling environments, built to support only some bodies and minds. Equal citizens, people with disabilities have claimed their right to access similar resources and opportunities distributed in society and participate in the decision-making process directly related to their wellbeing, which served as the conceptual backbone of the disability rights movement (for historical narratives about the disability rights movement in the U.S. see Charlton 2000; Shapiro 1994). Importantly, the legal call for full and equal participation of persons with disabilities in society was voiced as early as 1966 (TenBroek

1966).

84 Inclusion has served as a mighty tool in political debates, yet many inclusion practices have brought about problematic outcomes. Disability studies scholars have critiqued inclusion and the ways it has been executed around the world: for channeling Deaf students into hearing classrooms

“in a totally exclusionary program called inclusion” thus excluding them from receiving quality education (Lane 1995, 182); for problematic normalizing representations that underpin the movement toward political inclusion (Minich 2010); for basing inclusion on neoliberal principles of prioritizing market productivity (Gibilisco 2011); and for treating disability as a biomedical condition as opposed to a socially produced condition (Nguyen 2015). Carol Thomas (2014) has concluded that regardless of the theoretical position one adopts—material feminism or postmodern feminism—scholars agree that people with disabilities have not benefited from the lauded inclusion, diversity, and equality policies around the world. She reviews the works of

Marxist/materialist feminists and contends that “encouraging self-management and independent living among disabled people has suited politicians’ calls to curtail state welfare provision and to free-up market mechanisms; disabled people have thus been instructed to consolidate their

‘individual responsibilities’ by coming off benefits and joining the ranks of the employed”

(Thomas 2014, 48; see also Roulstone 2012). Postmodern feminists, in turn, critiqued inclusion policies for further entrenching disability as a category of abnormality and aberrance in the cultural imaginary (see also Infante and Matus 2009).

Because of its political purchase and its life in activist communities, disability inclusion has been configured and used as a device of happiness (Ahmed 2010)—its use promises resolution of problems of political injustice and moral wrongdoing. The power of inclusion as a device of happiness relies on what Jasbir Puar (2012) labels differential inclusion (for which (Chaudhry

2018) provides ethnographic material on disability microfinance projects of the World Bank in

India), a concept that captures social inclusion’s exclusiveness—only privileged disabled subjects

85 who can, in principle, be capacitated in neoliberal settings get to become included (see also

McRuer 2006). It is by looking at and showcasing these subjects that inclusion becomes reinforced and confirmed as a tool of happiness. These privileged subjects often serve as poster-children who support and justify political projects of inclusion which often produce ‘able-disabled’ subjects,

“those who exceed their disability limitations through forms of administrative ‘creaming’ or hyper- prostheticization but leave the vast majority of disabled people behind” (D. T. Mitchell and Snyder

2015, 12). The production of able-disabled persons and the circulation of the able-disabled figure on global sites of representation only further exacerbate the marginalization of persons who do not have resources, means or desires to ‘overcome’ their disability and thus be included (Puar 2017).

In sum, neoliberal inclusionism is profoundly contradictory: on the one hand, it has created more participation and visibility for some disabled subjects, on the other, it has only served those bodies who had resources and willingness to approximate what counts as ‘normal’ (D. T. Mitchell and

Snyder 2015). This results in the production of what they call ‘peripheral embodiments,’ that is, embodied subject positions of those who become even more marginalized under neoliberal inclusionism, given that they missed the chance of becoming included through those policies designed to do so.

Disability inclusion is very often narrowed down to the domain of inclusive education, due to the 1994 UNESCO’s Salamanca Statement on Principles, Policy and Practice in Special Needs

Education, which was the first international statement that endorsed inclusive schooling. In article

2, it was proclaimed that

regular schools with this inclusive orientation are the most effective means of combating discriminatory attitudes, creating welcoming communities, building an inclusive society and achieving education for all; moreover, they provide an effective education to the majority of children and improve the efficiency and ultimately the cost-effectiveness of the entire education system [https://unesdoc.unesco.org/ark:/48223/pf0000098427, accessed on 12/21/2019].

86 The first disciplinary space one typically inhabits in the course of their life (Foucault 1995), schools were imagined to serve as incubators of less discriminatory and more welcoming communities in the future. It was believed that by virtue of sharing educational spaces and practices, children with and without disabilities would grow up to be skilled citizens of an inclusive society. Such an assumption relied on the basic statement that regardless of their “attributes”

(abilities, race, class, religious affiliation, gender, sexuality, and so on), all children shared the same essence, they were equal before the law, and they were equally entitled to quality education.

Having been produced as a result of international negotiations, this statement, with an ideology embedded in it, from the very beginning was created to be universally portable and morally authoritative. The signatories urged all governments to “adopt as a matter of law or policy the principle of inclusive education, enrolling all children in regular schools, unless there are compelling reasons for doing otherwise.”16

The conceptualization of inclusion in the Salamanca Statement was in its incipient stages— not clearly defined, which is exemplified in the absence of any clear-cut distinction between integration and inclusion in this document, as well as in the Framework For Action On Special

Needs Education. If later in Russia and abroad, integration and inclusion would be defined as distinct organizational principles, in the Salamanca Statement they were used interchangeably

(with participation serving as a synonym, too):

The trend in social policy during the past two decades has been to promote integration and participation and to combat exclusion. Inclusion and participation are essential to human dignity and to the enjoyment and exercise of human rights. (11)

Experience in many countries demonstrates that the integration of children and youth with special educational needs is best achieved within inclusive schools that serve all children within a community. It is within this context that those with special educational needs can achieve the fullest educational progress and social integration (11).

16 https://unesdoc.unesco.org/ark:/48223/pf0000098427, accessed on 12/21/2019

87 Integrated education and community-based rehabilitation represent complementary and mutually supportive approaches to serving those with special needs. Both are based upon the principles of inclusion, integration and participation, and represent well-tested and cost-effective approaches to promoting equality of access for those with special educational needs as part of a nationwide strategy aimed at achieving education for all. (17)

Disability studies scholar Julie Allan’s (2005) position is distinct, as she makes a clear differentiation between integration and inclusion. She explains that unlike integration,

inclusion starts with the premise that an individual has a right to belong to society and its institutions, which therefore implies that others have obligations to ensure that this happens. In particular, inclusion necessitates the removal of barriers that may prevent individuals from belonging. These barriers may deny individuals access to buildings or material or cultural resources, or may convey messages to individuals according to which they do not really belong. Removing these barriers implies major structural and attitudinal changes and a fundamental shift away from the deficit-oriented thinking that has for so long driven educational practices (Allan 2005, 282, italics mine).

In other words, one of the first and most prominent differences Allan identified is the comprehensive nature of inclusion—it requires collective action and collective responsibility. It is the responsibility of everyone involved to make sure that barriers are removed or minimized as much as possible. She goes on to emphasize that the comprehensiveness of inclusion implies a structural change that is connected to patterns of thinking and relating to each other. Because inclusion in Allan’s rendering is a process but not an event, it requires commitments and ongoing work on the self from each participant, be they teachers, students, parents, researchers, or administrators. Importantly, Allan’s conceptualization of inclusion highlights that inclusion is not a temporally and spatially contained event that disabled students go through; instead, inclusion is a process that involves multiple coordinated stakeholders who routinely collaborate to figure out situationally optimal and most fruitful ways of removing barriers that prevent children with disabilities from accessing quality education. In this rendering, inclusion as a project has no end and is fundamentally self-critical and self-improving in its orientation.

Russian inclusion practitioners and educators Roman Dimenshtein and Irina Larikova

(2009a) offer a unique take on integration and inclusion as they offer a linguistic analysis of the

88 semantic clusters associated with Russian terms inkluziya [inclusion] and integratsiya

[integration]. This is a bold analytical move worthy of attention, given Russian scholars’ prevalent tendency to turn to English-language resources to find the “real meaning” of inclusion. According to them, integration is realized as a building of a sequence of environments, the levels of the complexity of which gradually increases. They contend that through exposure to such a sequence of environments, the child develops an ability to realize their full potential. Below I quote their paragraph on inclusion:

But unlike integration, “inclusion” is even a narrower term. As follows from the dictionary analysis of this term17, inclusion is a one-way process, representing the “introduction” of someone somewhere (an obvious violent connotation [the Russian word vnedrenie that they used does have violent connotations]), the result of which is the presence in a certain environment of a foreign body. So, in mineralogy, inclusion (vkluchenie [this does not work in English but it does work in Russian]) is “extraneous solid, liquid, and gaseous bodies captured by minerals during growth and enclosed within crystals”. In biology, these are “vklucheniya (inclusions) of plants, spiders, ticks and insects in amber”, etc. Comments, as they say, are not needed. Therefore, inclusion is questionable and, as a result, “included” does not become a natural part of the general friendly environment in this process (Dimenshtein and Larikova 2009a, 143).

By drawing analogies and inspiration from the local semantic cluster (although I see this interpretation perhaps too original and not so obvious), they flip the relationship between inclusion and integration. They critique inclusion for failing to ensure thicker embeddedness and connections between the hosting environment and the included subject. Without falling into the discourse of normalization or minimization of difference, Dimenshtein and Larikova propose to address the problem of exclusion by generating gradual cultivation of neededness and mutual appreciation, by developing connections among different elements of the given environment and gradually populating this environment with more and more complexity.

17 They use a Russian dictionary to define inclusion and integration, terms that are recent transplants to the Russian language yet that have acquired a life of their own in Russian disability scene

89 Inclusion’s postsocialist home

Terms travel globally, and through this traveling, they morph (Appadurai 1990). An ethnographic approach with its focus on everyday operations and practices is exceptionally well- equipped to register such changes as they unfold in culturally and nationally distinct hosting environments. With Russia’s complex postsocialist neoliberal environment, which is also centered around the figures of a strong leader and a strong state, it is not a surprise that the liberal or multicultural ideas of inclusion based on the values of individual autonomy and group self- determination changed. To better understand the shape the domain of inclusion and inclusion work has taken, I take a closer look at Russian social and political environment into which inclusion came at the beginning of the 2010s. Specifically, I sketch a context of competing mandates for civic action and participation, among which the inclusion mandate unfolded.

Ethnographic research on subjectivities and the sociocultural climate of postsocialist

Russia has demonstrated an intricate entanglement of still persistent socialist legacies with the proliferation of neoliberal desires and drives. The collapse of the Soviet state and the subsequent reorganization of the Russian political system produced numerous contradictory effects. On the one hand, ethnographic research has documented that economic hardships and political instability nurtured a perennial feeling and a default expectation of crisis present throughout the 1990s

(Shevchenko 2009) when stability and the maintenance of personal informal networks of ‘being needed’—be they those of blat (Ledeneva 1998), professional networks or other social support networks (Höjdestrand 2009)—ensured not only one’s wellbeing but at times even survival (M.

A. Parsons 2014). Being left out of informal safety nets often meant being denied access to the vital resources and the status of personhood altogether (Höjdestrand 2009), in the face of the collapsing infrastructures of social provision and social welfare (E. Dunn 2000; Field and Twigg

2000). Especially in the conditions of unstable socio-economic and political changes that did not

90 follow the anticipated plan of transition to capitalist democracy (Burawoy and Verdery 1999;

Humphrey 2002), when building sociality through relations of being needed has worked as an established strategy familiar to people of various subject positions and statuses in Russia. Such relationships would be fueled by actions as diverse as facilitating debt economy (borrowing money from one friend to lend it to another, for example), providing mental and social support through conversations over shared tea, picking up a friend’s child from kindergarten, lending food and resources when needed, bartering goods (often, workers received their pay in the form of the organization’s products—candy, nails, etc.), tutoring a friend’s child or providing them with a job opportunity, to give but a few examples. With formal infrastructures failing, such relationship- driven networks, spanning laterally and vertically through friends-of-friends, made it possible to find individual solutions to systemic problems (see also Rivkin-Fish 2005).

The remaking of the political and socio-economic system in postsocialist states created a mass of ‘dispossessed’ people, understood as those “who have been deprived of property, work, and entitlements, but [also] as people who are themselves no longer possessed” (Humphrey 2002,

21). Those dispossessed of their membership in socioeconomically and politically significant communities and networks—by way of dissolving the communities and networks themselves— found themselves struggling to remake their social worlds. Some managed to successfully rekindle their entrepreneurial skills nurtured in late-socialist Russia (Yurchak 2002) to become those who profited from the remaking of Russia’s socioeconomic and political system; many others did not

(Matza 2018). Those who did not readily adopt the new neoliberally-minded entrepreneurial ethic and lifestyle (Yurchak 2003) and those who experienced a lack of support on the part of their family, kin, and friends—the elderly, expats, and spouses of international professionals working in Russia, exchange students, among others—turned to charities and aid agencies, to tap into the social circuits of provision and mutual care organized around those initiatives (Caldwell 2004;

91 2016). Across social circumstances and historical conditions in Russia, remaking one’s membership in networks of being needed has served as a device to stabilize and sustain life.

Renegotiating terms of membership and communities of support provoked the remaking of “individual and collective identities, modes of social exchange, and forms of symbolization”

(Oushakine 2009, 1). In the 1990s and the 2000s, the deregulated field of popular culture played host to a massive influx of images and representations of excessive violence, sex, and marginality without restraint (Borenstein 2007), which lost their effectiveness as moral critiques and instead served as a means to manifest social anxieties and experiences of precarity (see also Butler 2010;

Shevchenko 2009). At the same time, the influx of funding from international aid agencies fueled the growth of non-governmental organizations, many of which were women’s NGOs (Hemment

2007; Henderson 2003), that did not immediately democratize the society but instead functioned as agents to serve foreign donors’ agendas and audit reports, on the one hand, and contribute to the complex redefinition of gender roles, often in a way that only further exacerbated the gendering of the domains of life and work (Verdery 1996).

After the 1990s, the decade of bespredel—a vernacular term that signified “a lack of any visible obstacles or limits but also an absence of any shared rules or laws” (Oushakine 2009, 1)— came the 2000s and the 2010s, the decades of the strengthening of the state and the centralization of power. On the one hand, the figure of the strong president, Vladimir Putin, has steadily gained the support of the overwhelming majority of the Russian population (Frye et al. 2017). Against the backdrop of experienced poverty, precarity, and massive economic hardship, as well as Russia’s perceived loss of political authority in the 1990s, the ideologically-produced images of order in domestic affairs, positive economic dynamics (connected to consistently high oil prices) and the international recognition of Russia’s legitimacy as a geopolitical actor triggered popular support of increasingly conservative domestic policies (Hutcheson and Petersson 2016; Treisman 2014;

92 White and Mcallister 2008), at least in the late 2000s. The perceived promise of order, stability, and economic development went hand-in-hand with the emergence of conservative policies and discourses (Chebankova 2013): pronatalist policies (Rivkin-Fish 2010), the discourse of traditional family values (Wilkinson 2014), anti-foreigner sentiments (Gorodzeisky, Glikman, and

Maskileyson 2015), among others. The moralizing turn that domestic politics took (Sharafutdinova

2014; Makarychev and Medvedev 2015) contributed to the making of individual ethics and morals a part of their national identity and a public matter. In 2016 and 2017, the time when the major part of my fieldwork took place, it was not rare to encounter overtly moral judgments—about what is morally right and what is wrong— being mobilized as argumentation devices in parliament and other platforms of public debate.

The moralization of public discourse is not exclusively a feature of Russia’s postsocialist conservative turn; it is also integral to the unfolding of neoliberalism in Russia and beyond (Fassin

2012). Ethnographic research has demonstrated that economic reform goes hand in hand with the reformation of the domain of morality. Anthropologist Daromir Rudnyckyj (2010) argues that the neoliberalization of Indonesia took place as both the production of good workers and the production of good believers and practitioners of Islam. Jarett Zigon (2010) contends that in neoliberal Russia, therapeutic and rehabilitative protocols for the excluded and stigmatized persons

(his case study is with people with drug and alcohol addiction) intervene in their ethical practice and entice their responsibilization. Tomas Matza examined the cultivation of elite and working- class children as classed subjects with diverse ethical skills and orientations to further reproduced

“a democracy infused and shaped by neoliberalism and promoted as such” (Matza 2018, 17).

In looking at the discourse and practices of volunteering in the North-Italian context, anthropologist Andrea Muehlebach writes that neoliberalism “at its very core entails a moral authoritarianism that idealizes the family, the nation, God, or, in the US especially, right-to-life

93 issues” (Muehlebach 2012, 6). In the 2010s in Russia, we see the institutionalization of the volunteer movement where volunteering activities become configured as revelatory of a person’s character and potential professional qualities: all volunteering experience is captured in a volunteer’s book, the content of which may add points to an applicant when applying to universities and jobs; legislative suggestions were made to count volunteer experience as work experience, thus translating volunteer experience into monetary bonuses for retirement and social security payments. Interestingly, 2017 was proclaimed as the year of volunteering in the

Sverdlovsk region, the region of my main fieldsite; subsequently, 2018 became the year of volunteering at the federal level. In practice, this meant that governmental bodies at the regional and federal levels respectively have been channeling resources into the establishment of the public culture of volunteering. In opening speeches and advertisement messages, volunteering has been spoken about as a valued practice from the socialist past that could be revived in the present moment. Several times I heard volunteering connected to the moral revival of the nation, against the backdrop of the turbulent years of the 1990s and the 2000s. What remains distinct in these efforts is that there has been a marked effort to diversify the body of volunteers, inviting elderly persons and persons with disabilities to become volunteers in the framework of so-called “silver volunteering” and “inclusive volunteering,” respectively. In sum, the inclusion mandate operated alongside and often together with other mandates for intensified civic activities governed by morally recognized values of mutual support, responsibility, and care for others.

And yet, the population of disabled persons in Russia has had its idiosyncratic history, given that matters of in/accessibility of public spaces, information, and practices have only received public attention and action within the past decade. An organizing category of biopolitical management (Kohrman 2005; D. T. Mitchell and Snyder 2015; Tremain 2005), disability transitioned from Soviet social policies into Russia’s postsocialist policies. Anthropological

94 research on practices of citizenship available to disabled individuals in postsocialist Russia argues that people with disabilities face significant barriers that hinder their social and political participation (Hartblay 2015; Naberushkina 2012; Romanov and Iarskaia-Smirnova 2006). On an everyday basis, people with disabilities encounter inaccessible spaces, services, and information that are paired with judgmental public attitudes. This challenge to generate ad hoc solutions of access, failing to do so, and trying again often triggers lay able-bodied public to metonymically identify people with disabilities with problems they experience and constant disruptions of the everyday (see also French 1999; Michalko 1998b). As a result, people with disabilities inhabit the materially resistant environment, the climate of ableist judgment and able people’s resistance to learn more about the root cause of those everyday disruptions. In these conditions, as is the case in Ukraine, Russian adults with disabilities cultivate the skill to creatively juggle between various understandings and affect associated with disability to achieve access to fuller citizenship, which

Sarah Phillips calls strategies of mobile citizenship (Phillips 2010). During my fieldwork, the feeling of betrayal and abandonment by the state surfaced among not only demobilized war veterans (Edele 2009; Oushakine 2009) but also among other individuals with disabilities who felt that the political and social system was not providing them with sufficient levels of support to realize their civic abilities and aspirations accessible to their able-bodied peers, thus forcing them to rely on their traumas, conditions, and injuries as the only source of state-provided livelihood

(Petryna 2002). And yet, the injured Russian citizens were not alone in their sentiments of abandonment and lack of support.

Various minority groups—LGBTQA+ folks, nonbinary people, people with addiction, religious minorities (Jehovah’s witnesses, for instance), migrant laborers, women, racial and ethnic minorities—found themselves unprotected by this figure of the strong caring state that broadcasted messages of its international power and domestic care on federal TV channels and their media

95 platforms. Unlike the Soviet rhetoric of the state’s fundamental multiculturalism and multiethnicity (for an account on Soviet multiculturalism see Zakharov 2014), contemporary official and nonofficial discourses do not prioritize diversity and equity as primary political values.

Anti-gay propaganda law, decriminalization of domestic violence, ongoing debates about criminalizing abortion, persecution of political critics and journalists, all contributed to the increasing conservatism of the political system and social environment. It must be acknowledged, however, that despite these homogenizing processes and increasingly conservative moral conceptions that float around, various groups have managed to cultivate heterotopias that host communities and collectives that do not support or fit in the official policies and discourses

(Beumers et al. 2018; Gabowitsch 2018; Kondakov 2017).

Alexander Etkind (2018) identifies another significant factor that affected the state of domestic policies and civil society development—Russia’s “oil curse.” An economy dependent on oil does not necessarily lead to oligarchy and mass disenfranchisement, he mentions. Still, it puts less pressure on the ruling elite to ensure the wellbeing of the ruled. He elaborates:

Since this state does not depend on taxes, but relies mostly on direct profits from exporting its resources, democratic representation in such a state is either underdeveloped or bogus. Since trade requires little labour, the workers lack the power to strike. In such a state, the wealth of the nation does not depend on the labour and the knowledge of its people. Healthcare, education, and the sociability of the population all become irrelevant to the national economy. Rather than being the source of the nation’s wealth, people depend upon the charity of the state. In this environment, human capital decays in a vicious circle: the more the state relies on its natural resources, the less it invests in human capital, and the lower its development, the more resource-bound the state becomes (Etkind 2018, 5).

Etkind sees a direct link between Russia’s defunded and deteriorating social, educational, and medical sphere, on the one hand, and the state’s dependence on oil and gas, on the other. For the matters of this dissertation, Etkind’s argument provides an explanatory frame through which one can contextualize the lack of pressure on legislators and governors to use inclusion’s potential to dramatically redesign the social. Inclusion, in this light, becomes a handy tool of spectacularized

96 care that does not, in reality, change the textures of everyday life. Having inclusion- and accessibility-focused programs becomes enough. Hence, the disruptive potential of inclusion as a pressure point to address embedded ableism systemically and reorganize the entire social structure, starting from law to civic attitudes and everyday interactions, was not galvanized. Instead, inclusion became detached from the rhetoric of difference and systemic change, having been transformed into a tool of tamed improvement (and not an infrastructural change) that became predicated on people’s values, not on their resources, patterns of interaction, and privileges they enjoy. With the support of state-controlled media that reproduce images of the orderly domestic sphere and the hostile international environment, there has been an emergence of conservative politics with an emphasis on finding Russia’s uniqueness, which seems to be predicated on the preoccupation with the nation’s morals. The morally good nation was imagined to organically adopt inclusivity overnight, without suffering any feeling of loss and transformation. Among people with disabilities themselves, the inclusion mandate enhanced the position of those who had access, even if indirectly, to nonprofit organizations that could receive funds to support inclusive activities and projects.

Cassandra Hartblay (2019a) problematizes the spatial metaphor of marginalization that has dominated contemporary scholarship on social exclusion. Instead, Hartblay proposes an alternative metaphor—pixelization—to capture more accurately the experiences of segregation of her Russian interlocutors with mobility and speech impairments. Pixelization’s double-meaning—of grid-like organization and of digitalization—models the spatiality of segregation of people with mobility and speech impairments in their apartments (due to inaccessibility of built environment and their apartment complexes, in the first place), on the one hand, and the thickened online sociality through which they include themselves into civic life.

97 Instead of banking on the value of diversity, the hegemonic descriptions of Russia prioritized the unity and unitedness of the nation. Galina Oustinovs-Stejpanovic (2019) writes about the concept of edinstvo [unity, oneness] and its political purchase in Russia. Besides reproducing the imagined coherence of a nation as large as Russia, the idea of edinvtso is used to impede individual expressions of disagreement and dissent. In the end, this prevalent framework only encourages apathy and civic disengagement among Russians.

Some actors contribute to the depoliticization of inclusion in Russia by seeking its roots in supposedly universal and timeless moral values. One such example is sociologist Afonkina Yu.A.

(2015), who links inclusion’s rise to prominence in Russia (in the discourse authored and authorized by the state as well as in civil society initiatives) to “the strengthening of genuine human relations and the experience of belonging to the universal culture in all social practices” (Afonkina

2015, 150). The discourse around inclusion—with its ideas, values, and practices—serves to her as an indication of “the development of the spiritual and moral potential of society” (Afonkina

2015, 150).

As a term that was imported to Russia and appropriated by those already in power, inclusion as inkluziya (инклюзия) or vkluchenie (включение)—these are used as synonyms— have become public objects of knowledge that I connect to specific practices and subjects that have been profoundly moralized and depoliticized. Like sexuality since the seventeenth century in

France (Foucault 1990a), inclusion as a set of meanings and practices grew into a domain that gathered practitioners and academics, policymakers and governors, bureaucrats and clerks, educators and employers, funders and sponsors, a system of representation, inclusion experts, tutors, people with disabilities, their families, loved ones, friends and kin, activists and self- identified disability allies, all of whom were trying to devise a system that was perceived not to need a political reformation.

98 Social inclusion of people with disabilities in Russia

Without a fixed and clear definition of what inclusion is—a spatial arrangement, a mode of relationality, a form of etiquette, a temporal intervention, a legally prescribed obligation, an overdue debt to people with disabilities, a value, an economically imperative measure?—diverse interpretations and practice of inclusion emerged in Russia. These interpretations offered scripts of communication and protocols of action that are based on different principles.

One such interpretation of inclusion—the model of targeted provisions, quite often encountered at all levels—is the model of inclusion where inclusive activities turn out to be masked service-provision measures (concerts, medical retreats, hobby-related meetings for people with disabilities exclusively). In practice, such a model labels any activity provided for the disabled by the nondisabled inclusive. This model operates on pre-assigned subject positions, where people with disabilities are placed in the position of the object of care. In contrast, nondisabled people occupy the position of care-providers. Those who do experience the need of such services often depend on them substantially, as they often bring access to healthcare support, prosthetic and assistive technology, and create spaces of sociality. Those people with disabilities who experience their disability as needing less specialized and targeted interventions approach such a model as unnecessary and segregationist. This model underserves such demographic.

Another model of inclusion—check-mark inclusion, one of the most common models—is the one that labels any context with at least one disabled person in attendance—with or without quality interaction between disabled and nondisabled actors—as inclusive. This model operates under the assumption that interaction and communication between and among people with and without disability take place naturally once they merely come together to share spaces. Such a model plays down the significance of personal orientations toward or away from people with disabilities, cultural habits, thinking patterns, naturalized discrimination, and internalized ableism

99 that had previously led to segregation and lack of support in the first place. Without addressing the problem of systemic ableism, this model manifests itself in reports where the number of people with disabilities in attendance serves as a reliable indicator of the project’s inclusivity.

The third model—inspirational inclusion—configures inclusion as a tool to affect the nondisabled: to improve their wellbeing and develop their selves. Inclusion thus configured does not require the presence of a person with disabilities or any significant change for them; what matters is how the nondisabled individuals react to disability. Taking courses or a seminar through which nondisabled people learn about the rules of communication and etiquette regarding peers with disabilities is one typical example of such a model. Another example of this model is the ways in which people without disabilities testify about the profound changes that occur to them as a result of encountering a person with disabilities in their everyday life or encountering disability in any capacity. I have heard multiple iterations of this inspirational and moving narrative—the nondisabled “become kinder,” “reconsider their life values,” “are inspired to deal with their problems,” etc. This reading of inclusion that does not attribute any agency to people with disabilities and does not account for the internal heterogeneity of the category of disability. Instead, it focuses on the nondisabled, reproduces the privilege that has produced the problem of exclusion in the first place, and renders disabled individuals an object lesson and a tool that constitutes the other—nondisabled, benevolent—subject. In addition, it also appropriates the labor of the disabled participant in figuring out ways to engage meaningfully with the nondisabled in an ableist world.

All these three models expect different results from inclusion; they locate inclusion in various aspects of the disabled-nondisabled interaction. Yet none of these models challenges the underlying hierarchy whereby people with disabilities become symbolically, politically, and economically subordinated to the nondisabled; none of them frame disability inclusion as a political project which would require new infrastructures to be put in place and new systems of

100 accountability to be introduced. A moralized domain instead, disability inclusion has materialized as multiple programs, initiatives, and actions that configure inclusion as an imperative for a personal intervention or cultural intervention, not a political one that would require a reform of all involved parties. People with disabilities, in this logic, are perceived to be apolitical subjects, injured or suffering fellow humans (Ticktin 2011)—as a result of their overmedicalization and ableist perceptions of their unthreatening status (Friedner 2017). A telling example of such depoliticization was the ability of disability NPOs to receive and use foreign funding in their work, without receiving the foreign agent label (which is exceptional among other NPOs whose work with foreign funding has been routinely closely supervised). Exempt from intense state surveillance and receiving a stigmatizing status of nonpatriots, disability NPOs with which I collaborated enjoyed an unusual and beneficial diversity of public and private resources channeled toward inkluziya.

Conclusion

In academic literature, liberal inclusion has received substantial critique. Imagined initially as a tool to bring about a more justly organized heterogeneous society and wellbeing to groups that have been disenfranchised, so far, it has raised more questions than provided answers. What is inclusion, exactly, beyond the proclaimed fantasy of a better society? Is it a technology of participation (Knight 2015; World Bank 2013), of belonging (Allan 2005), or of appearance

(Zoanni 2019)? An effective instrument to address the relational precarity of life and the feeling of being homeless in the world (Allison 2013) or a tool of political recognition (McKearney 2017)?

The answer always depends on the specific context that takes up the challenge to implement inclusion—and thus, to attempt to understand it.

Although in liberal contexts, inclusion has not been attached to any one particular form of difference, in Russia, it has been—to the minority of people with disabilities. To this end, I have

101 engaged with academic works that engage with problems of including people with marked bodily and mental differences in the broader polity and society. Among the most prominent problems of liberal disability inclusion, one finds that attempted and celebrated projects of disability inclusion have mostly been profoundly exclusionary—as they would only benefit those people with disabilities whose inclusion could be solved by a cosmetic fix and a targeted provision of accessible technology. Additionally, neoliberal inclusion would work while concealing its underbelly—how capitalism and imperialism produce damaging impact on populations they render available for injury and further exclusion.

When such a tool travels from liberal contexts to a postsocialist setting, such as Russia, one can expect a different form of its deployment. The inclusion mandate plugged into the historically entrenched forms of privatized action and apathy of collective endeavors, which provoked different degrees of enthusiasm among different actors. To some, it would deliver the capital of being modern; to others, it would add anxiety and frustrations, in the face of absent, but promised, infrastructures of a different, more inclusive society. In the following chapters, I delve deeper into the operations of what I call the inclusion complex—a conglomerate of actors recruited and mobilized to make Russia inclusive to people with disabilities.

Chapter 2 Inclusion Phantasmagory

In February 2017, several months before the First World Congress for Persons with

Disabilities (a major international event organized with the participation of my interlocutors) that was scheduled to take place in September 2017 in Yekaterinburg, the key Yekaterinburg-based online news-outlet posted an article with a provocative title: Of disabled people who were invited to the World Congress in Yekaterinburg, they asked 15 thousand rubles for participation, and the

102 subtitle Police officers suspected the organizers of fraud (e1.ru18). The article communicated the frustration of locally-based persons with disabilities with the participation fee for the Congress and reiterated the familiar sentiment—that of scandal. The opening sentence of the article went as follows:

Human rights activists advocating for the interests of disabled people were outraged with the fact that the organizers of the World Congress for People with Disabilities, which will be held in September in Yekaterinburg, are asking for money for participation (emphasis mine).

Several organizations and individuals found the existence of the participation fee for people with disabilities to be a sign of fraud, a violation of their rights, and power abuse [proizvol]. They submitted appeals to the chairman of the UN, the Russian prosecutor general, and the local police department, where they argued that such participation fee is degrading and provokes feelings of fear and inferiority in people with disabilities. Such treatment violated the laws of the European

Court of Human Rights, they argued.

The local police department, in turn, issued an official response19, which was also published in this news article. The acting head of the police department N7 of the Office of the

Ministry of Internal Affairs of the Russian Federation for the city of Yekaterinburg responded with the following statement:

I inform you that your appeal in the interests of the All-Russian Society of Persons with Disabilities has been considered. The audit found that in 2017 in Yekaterinburg the first World Congress of People with Disabilities will be held. To participate in this congress, you must register on the site http://www.kongress2017.ru. When registering, the organizers of the congress are requesting [the applicant] to pay a participation fee ranging from 7,500 rubles to 15,000 rubles. In this case, there are signs of a crime under Article 159 of the Criminal Code of the Russian Federation “Fraud” In the context of Art. 143 of the Code of Criminal Procedure of the Russian Federation on this fact, the verification material is allocated to a separate production and registered in KUSP-2011 from 01/30/2017 … (emphasis mine).

18 https://www.e1.ru/news/spool/news_id-461408.html 19 N26/7-3/177700230546/5 from 12 January 2017

103 In his response, the acting head of the responsible police department acknowledged receipt of the appeal and provided a description of the work they have done regarding this case. They inquired about the event, confirmed that it involves people with disabilities, reviewed the registration procedure, confirmed that the applicants were indeed charged with a registration fee, and stated that based on this collected evidence, it was indeed possible to open an investigation on fraud and crime. Further investigation did not find sufficient evidence that could support the claim that charging a participation fee was an instance of fraud, abuse of power, or a degrading action. Even though this case did not bring anyone to court and the participants of the Congress indeed paid the participation fee, this controversy served as an illustration of the climate within which some people with disabilities perceived charging people with disabilities a substantial participation fee (~260

USD) as offensive to their dignity and the local police department perceived it as a plausible case of fraud.

The significance of this controversy lies in how vividly it reproduces the dominant discourse within which it becomes unthinkable and degrading to charge people with disabilities in

Russia 260 USD for participation in a four-day event. The familiar configuration that was violated by this condition was that of a disabled citizen who is a recipient of paternalistic care provided by some authority—be that the state, the society, the nondisabled family member, or other entity.

More even, there is an underlying conviction that in Russia, people with disabilities are by law entitled to such paternalistic care. Thus, those people who submitted a complaint were outraged that in this case, there were no benefits offered by any funding body. The default expectation and imagination were that such sums are a burden imposed onto those who are already impoverished and insufficiently supported by society’s unjustly organized systems of production and distribution. They felt entitled to free access to such an event so strongly that they submitted appeals to the chairman of the UN. No less important is the fact that the first-round examination

104 conducted by an officer at the local police department showed signs of fraud in merely having such a condition. Although I did not have a chance to communicate with the police department, my informed guess would be that they reached such a conclusion following the logic identified here: that in the paternalistic state, disabled citizens should be sheltered from having to compete with privileged nondisabled persons to establish or prove their worth as social actors; they should have special conditions.

Opposed to this figure of a complaining disabled person who demands support stood Oleg, a blind member of the Congress’s organizing committee, who was chosen to address public questions during a town hall meeting that followed this incident. He was selected to act as the spokesperson because himself a blind man, he could claim his first-hand familiarity with occupying the same social category—disability—and offer an alternative interpretation of this situation. In a calm and confident voice, Oleg addressed the audience: “We are organizing [the

Congress] ourselves [*the implication here is—without the help of the state], we invite you to collaborate, help us organize this festival by ourselves, contribute as much as you can.” This response shifted the attention to a different plane of action and ontology. Oleg did not debate whether charging a disabled person a fee constituted a degrading event—in his response, he left the domain of paternalistic obligations of care and the moral economy of recognition and obligation toward people with disabilities. In Oleg’s rendering, the Congress was not a top-down initiative to appease a scandalized disabled person and provide them with compensation for their otherwise robbed life opportunities. Instead, he conceptualized the organization of the Congress as a lateral effort, as a massive crowdsourced event, inclusive in its nature, uninterested in pleading for help to authorities. He solicited contributions (in the form of labor, time, ideas, money, etc.) from disabled and nondisabled participants alike because, in his interpretation, they were equally capable of those contributions; more so, they were equally desired as contributors. Oleg stood as

105 a figure who did not demand—state subsidies, recognition, or rights—but who invited others to join the multitude of event contributors. His response brought the conversation from the domain of scandal to that of a business-like negotiation.

In this chapter, I am interested in the encounter of these two figures: on the one hand, the figure of a disabled Russian person outraged at the fact that disabled participants have to pay a certain amount of money to participate in a disability-themed event, and Oleg, the figure who in many ways embodied the emergent aesthetics and ethics of new inclusion. The opposition of these figures epitomizes the issues that pivot around dependence, class, desirability, and disability in contemporary Russia. Additionally, the ongoing antagonism of these figures shapes the ways in which inclusion practitioners choose to present and represent disability and inclusion. In this chapter, I discuss these figures as phantasmagoric—a mixture of fiction and nonfiction, depoliticized and affectively charged, that nevertheless influences how inclusion initiatives unfold in Russia.

This chapter unfolds as follows. First, I examine the aesthetics of disability as a failed scandal. Specifically, I consider the logic that made the complaint about the participation fee possible, recognizable, and inconsequential. I show how the state policies, together with the ableist culture of no expectations in which Russians with disabilities live, encouraged complaining as the sole most prevalent and effective tool of social intervention for people with disabilities. I also provide an analysis of how disability has been represented through visual and narrative forms, and the affective forces it has historically evoked, to solidify the popular identification between disability and social disruption. Then, I turn to the World Congress for Persons with Disabilities as a cluster of images, plots, and sensory engagements that worked toward cultivating a different figure—that of an included person with disabilities, a person who was defined as successfully plugged into social and/or economic networks. Various elements of the Congress’s aesthetics and

106 content constructed a figure of an apolitical yet aesthetically appealing person with disabilities whose appearance and mode of self-presentation promises lack of scandal and constructive engagements. Finally, I test the portability of these fantastic storied clusters and figures in a context removed from the economically vibrant urban centers.

Disability and failed scandal

I used this incident in the field as an opening vignette on purpose. Not only does it pithily bring to light the outraged figure of a person with disabilities whose expectations of support have been spectacularly unmet. It also foregrounds another aspect of disability aesthetics that gets folded into the operations of the inclusion complex—the aesthetics of scandal. The inclusion complex runs against it and is fueled by the fear of it. In essence, many of my interlocutors intentionally avoided the potential of scandal and complaint, privileging negotiations and the possibility of figuring out ad hoc solutions in situations of needed support.

Earlier in Chapter One, I drew attention to the metonymic identification that I observed routinely during my fieldwork—the identification of people with disabilities with disruptions of the everyday. In other words, for a lay public eye, disability equaled problems: long-lasting and expensive court cases, struggles with inaccessibility, costly adjustments, impossibility to fire a disabled worker, ruined public image, associations with disgust, lack of professionalism, awkwardness, failure to complete a task within the scope of allotted resources are just a handful of examples from the list of problems I compiled during fieldwork that surfaced in my conversations with mostly (but not exclusively) nondisabled people. These problems were almost always imagined and uncorroborated by any sound evidence, yet they persistently circulated among many nondisabled and disabled people alike. They represented the public frustration with the dragging misfit (Garland-Thomson 2011) between disability (as a category and an embodied condition) and the socio-material environment in which people with disabilities lived. Instead of

107 providing an opportunity to critique the forces that made this dragging misfit possible, frustrations were often channeled onto the disabled person who found themselves in such a situation. To understand the layers and facets of this identification, I turn back to the presented vignette and discuss in more detail the processes that contributed to the production of this identification. By the end of this section, I hope the reader will also grasp that this identification bears distinct negative emotions codified through a distinct aesthetics.

The phantasmagoric figure that featured in the incident—an indignant complaining person with disabilities who demanded subsidized support to a private event and appealed to such authorities as the chairman of the UN, the Russian prosecutor general, and the local police department—is a caricature, on the one hand, but also a product of the ableist system that has created conditions in which people with disabilities are increasingly dependent on the state, have virtually no functional mechanism to address emergent problems at the local level, and use publicized complaints as the sole mechanism of possible change (for other graphic ideologies see

M. S. Hull 2012).

In writing about disability as an administrative category in the welfare state, Deborah Stone

(1983) contends that disability offers a fundamentally complex and contradictory position—that of simultaneous privilege and stigma. On the one hand, by recognizing some citizens as disabled, the welfare state exempts them from the imperative to work to secure livelihood and fulfill other civic duties (some examples of which would be military service, payments of debts and other financial obligations, examinations, taxes). On the other hand, having disability status in practice often means economic disadvantage, stigma, and isolation. To this conceptualization, I would add another aspect—the produced helplessness among people with disabilities. Without proper training, education, financial security, employment opportunities, and adequately working platforms for socialization, under constant pressures of stigmatizing attitudes and ignorant

108 understandings of the possible scope of development that a person with disabilities can reach, people with disabilities in Russia, in fact, often do not develop necessary skills to self-advocate, serve as professionals, organize their communities, and challenge themselves to improve their own lives. Telling examples would be those countless blind students that I met during fieldwork who would not ever use a white cane for their and their parents’ fear of not being able to safely use it as a mobility technique; or these same students not developing even basic housekeeping skills or not pursuing any professional development, having decided early on that blindness and professional success are antithetical.

If we look at the posted news article, it becomes possible to see how the lay public engaged with this contradictory figure of the disabled. A quick glimpse at the discussion thread20 below shows that the idea of people with disabilities as privileged “freeloaders”—or “izhdiventsy”—is a recognized trope among the general population:

Oh, [such behavior] should be adopted [by the nondisabled]. You can fit anything into it. For example, when I am asked to pay a fare on the bus, I [will say that I] experience a sense of fear, longing and inferiority. So their demand [to pay the fare] degrades my dignity. Let me turn to the European Court of Human Rights. Let them sue. So, they will learn that one also has to pay for the statement of claim. (translation mine)

This commentator pithily expressed the harmful stereotype that configures people with disabilities as privileged people far removed from the hardships of “real life.” This person ironically suggested that nondisabled people—whom they see as real sufferers, given that they have no privileges and special benefits—should adopt a similar attitude, even in such seemingly ordinary situations as riding on a bus. This comment expressed disdain at the privilege of people with disabilities and ridiculed people who submitted the appeal for their unrealistic and ungrounded demands.

Another comment on the board relied on a different assumption—one that drew a connection between the nation’s moral status and the paying capacity of people with disabilities.

20 https://www.e1.ru/talk/forum/read.php?f=9&i=9718765&t=9718765

109 It’s ridiculous. The World Congress held in Russia where there are no Russian people with disabilities because [they cannot afford an entry ticket due to the size of their disability pension]. Maybe they shouldn’t organize such a disgrace and shouldn’t hold such a congress. Let it happen somewhere in Switzerland, without us, [at least it wouldn’t be] so insulting.

The author communicated that they were insulted by the state of affairs in which Russian people with disabilities could not afford to pay such a fee. For this commentator, a way out of such a disgraceful situation is to cancel the undertaking and remove it to a location that they imagine to be able to afford it, here, Switzerland. The unique contribution of this particular comment was that it homogenized the population of people with disabilities into a mass of poor people and used this identification as a marker of the nation’s and the state’s failure to provide sufficient living conditions to its citizens.

Although these comments mobilize different arguments—some use the trope that people with disabilities are freeloaders, others criticize them for being demanding, and yet others place guilt on the state for the inability of these people with disabilities to pay for the said participation fee— they all rely on the naturalized value of paternalistic state care that in the course of its tending to its target population, harm it (Gupta 2012; Shek 2005; Stevenson 2014). It is against this configuration—of the state as the sole locus of power paternalistically obligated to provide care to its helpless disabled citizens; of people with disabilities as simultaneously entitled to such care and obligated to demonstrate gratitude for it—that my interlocutors worked in general, and organized the Congress, in particular. I argue that my interlocutors demonstrate that the helplessness of people with disabilities that is often assumed is, in fact, a produced dependence that is a result of a collaborative work of many forces. Their conceptualization of inclusion—and the material forms it takes—is juxtaposed to a distinct formation of the ever-strong state and ever-helpless citizens with disabilities. Against this figure of the disabled person who claims entitlement to an indiscriminate list of things, my interlocutors and others worked to create an idea of how it can be otherwise.

110 The antagonism of scandal, complaint, and demand, on the one hand, and negotiation, ad hoc solutions, and constructive suggestions, on the other, can be translated as an antagonism between different models of disability and inclusion. In contemporary Russia, both figures tend to be depoliticized, albeit differently. In this section, I engage with the depoliticization of the first figure—which takes the form of a disabled political impulse. In the section to come, I trace the depoliticization of the new figure of the included person with disabilities, which takes the form of preferred self-removal from the political domain.

Although complaints have historically served as a single most effective tool of effecting change in questions of individual wellbeing of people with disabilities (Muravyeva 2014), the overall depoliticization of disability by authoritative discourses disables the disruptive power of critique voiced by people with disabilities. In other words, although they try to express collective demands and critique the system, they are not heard and fail to mobilize coalitions to support their cause. Partially, this can be correlated with the trope of sotsialka that often gets associated with people with disabilities. Sotsialka is a vernacular term in Russia for the system of social provision and those people who heavily rely on this system to survive; this term has complex overtones— diminishing, on the one hand, and reflective of the challenging position one occupies, on the other.

Anthropologist Jack Friedman (2009) worked with a concept “the social case,” which is semantically adjacent to the concept of sotsialka. According to Friedman, “the social case” is a category among psychiatrists in postsocialist Romania “embodying the idea that there are some patients who should not be institutionalized, but who remain in psychiatric hospitals because there is nowhere else for them to go if they are released from the hospital” (Friedman 2009, 376).

Located at the intersection of medical knowledge, moral reasoning, postsocialist political and economic conditions, and welfare regulations, this category was applied to those individuals who remained institutionalized as a result of psychiatrists’ goodwill to provide them with living

111 conditions at an institution. Such a life was considered to be better than the conditions this individual would be able to procure for themselves once they leave the institution. Although

Friedman discusses “the social case” as a medical category, it can be—and often is—stretched beyond the hospital’s boundaries—and this is where the social case’s semantic field overlaps with the one of sotsialka. Sotsialka—one’s being part of a system of social provision—would apply to those individuals who rely on welfare and fail to tap into other sources of independent livelihood within the given neoliberal structures. Individuals who fit in the parameters of sotsialka often slip through the cracks of governmental support. Thus, their survival depends on the goodwill of other members of their network. Their diminished economic chances, in other words, plug them into the economy of debt (Açiksöz 2020; MacLeish 2013; Wool 2015)—in their reliance on the state, they become publicly invalidated as critics of this very same system that feeds them. This same logic worked with the incident described in the opening vignette. People with disabilities are often considered to be emblematic cases of sotsialka, together, however, with low-income mothers, multi-children families, and orphaned children.

Anthropologists Pavel Romanov and Elena Iarskaia-Smirnova (2006) have developed an argument that Russians with disabilities do not have access to citizenship opportunities available to nondisabled Russians. The systemic neglect of and negligence toward people with disabilities result in routinized violations of their rights. In addition to their diminished political agency and recognition, they are also excluded from membership in prestigious social groups and from having access to prestigious forms of cultural consumption and production. This results in internalized ableism (see also F. K. Campbell 2009a), low self-esteem, and low aspirations among people with disabilities. In other words, lack of expectations for people with disabilities to achieve anything

(in a society that measures success through one’s achievements and reaching socially recognizable normative milestones) and access to meager resources facilitate further deskilling of people with

112 disabilities and their normalization of such living conditions. These complex factors constitute the conditions in which sotsialka is not only imposed on people with disabilities but becomes internalized by them as a deserved and expected social position.

Through providing pensions and other social payments, the state remains prominently marked among other actors who affect the lives of people with disabilities. In other words, the state has not withdrawn from the social sphere which makes it problematic to characterize it as fully neoliberal (Rasell 2014). A familiar line of reasoning has it that in comparison to other countries, especially those where the state has withdrawn its welfare functions and allowed privatization of its social services, the Soviet and then the post-Soviet Russian state appears as a benefactor and its citizens with disabilities become configured as occupying a position of compulsory gratefulness—for received care and social provision. This is not far from the position of the Soviet state that had been characterized as paternalistic. Sociologist Ol’ga Shek (2005), writing about the relation between the Soviet state and its disabled citizens, described the Soviet state’s paternalism toward people with disabilities as follows:

Disabled people were singled out as one of the categories of citizens requiring special care. Moreover, the scope and methods of support were determined by special expert commissions. In most cases, the social isolation of people with disabilities in a space parallel to the nondisabled society was considered the most acceptable condition for their life. Nevertheless, people with disabilities had stable support from the state, built on the principle of satisfying their basic needs. The paternalistic nature of the state policy of the Soviet period can be considered as a mechanism for the exclusion of people with disabilities, contributing to the reproduction of their secondary social status (Shek 2005, 375).

According to Shek, the Soviet politics of exclusion of people with disabilities were complex and multi-layered. On the one hand, and here Naberushkina (2012) agrees with Shek, the state did provide solutions to the massive problem of increased numbers of people with disabilities (due to the wars of the 20th century) through delivering access to infrastructure that would satisfy their basic needs. Homes of the disabled were a solution that could be considered reasonable in the case

113 of lonely people with disabilities or children abandoned by their families. In those homes, they received shelter and food. On the other hand, however, the quality and content of the services they were provided were hardly ever publicly critiqued and, thus, regulated and improved.

The tropes of stigmatized dependency—captured in the vernacular label izhdivenets— connote the register of dependency that glues together economic and moral reliance (Hartblay

2014). Cassandra Hartblay explains the nuance of izhdivenets as follows: “the notion of izdivenets

[sic] is not simply a financially dependent person, it is, more specifically, a person who has failed to contribute satisfactorily to the national (or, on a smaller scale, household) project through labor”

(Hartblay 2014). Izhdivenets dangerously borders its semantic and moral field with other vernacular concepts such as parazit [parasite] and tuneyadets. Ozhegov’s dictionary defines tuneyadets as “an individual who lives on someone else’s account, someone else’s work.”21 These concepts capture the exceptional status of an individual who does not economically participate in the socialist system of distribution. In this sense, izhdivenets challenges the ideologically proclaimed equality by demonstrating the morally unjustified exceptional status of some compared to others. Often, when these labels are deployed in everyday speech, they are used as insults to point out the addressee’s intentional and conscious violation of their community’s norms of participation and distribution. Applying such labels to disabled people in Soviet and post-Soviet society was made possible because of the lack of understanding by the nondisabled of the broader context in which people with disabilities were put in this position by the state22.

21 http://ozhegov.textologia.ru/definit/tuneyadec/?q=742&n=184436 22 The contributing forces were the following: Soviet and post-Soviet policy of isolating people with disabilities either in their apartments (through failing to provide accessibility of their own apartment buildings) or in special institutions located at great distances from city centers and populated areas – such system not only impeded their access to public spaces but also robbed them of resources to remain motivated, inspired, and fully-functional to the best of their ability; the work of the propaganda machine that celebrated the state’s paternalistic care with and without reason and rendered invisible people with disabilities themselves; the very system of social provision which instead of enabling people with disabilities to access resources they need for self-actualization, provided them with meager pensions and social benefits, leaving them out of ways to participate in the formation of the social.

114 Spatial arrangements of everyday life, to no lesser degree, contribute to the containment of the critical impulse of people with disabilities. City architecture and urban development incorporated and reproduced social inequality by immobilizing people with disabilities and channeling their movement toward only certain spaces (Naberushkina 2012), thus filtering out many possibilities of social connections. As a result of verbal and nonverbal assaults of people with disabilities, on the one hand, and of passive ignoring of people with disabilities, on the other, contemporary post-Soviet cities push people with disabilities out (Naberushkina 2012, 267).

Zhenya and Misha, my blind interlocutors, would often notice that for blind people, this ignorance and pushing out would take the form of strangers’ reluctance to engage or figure out conditions under which a blind person can use a space (such as a gym, a café, public attractions, for example).

In sum, people with disabilities are recruited in the operations of a moral economy of debt circulation, where they often do not have a strong argument to enable them to make political claims that would be taken seriously by the public. Pushed out from public spaces by long-cultivated cultural habits of naturalized normalcy of inaccessibility and exclusion, pushed out from work places by ableist employers scared off by phantasmagoric figures of scandal-seeking applicants with disabilities, careful to challenge the hand that feeds them and their families, they find themselves in a position in which regardless of how loud their voices are, they rarely produce tangible and desired results, they are rarely heard and engaged with. It is in this sense that I call their position depoliticized. This depoliticization takes the form of the aesthetic of scandal, sorrow, and angst, which I review in one of the sections to follow.

Aesthetics of disability representation

Before I move on to present examples of the aestheticization of disability as scandal, which will help me trace the production of the figure that serves as an underbelly of the emergent inclusion complex, I turn to academic scholarship on the aesthetics of disability representation. I

115 seek to introduce concepts that will further help me analyze the Soviet and post-Soviet aesthetics of disability.

Disabled and diseased bodies have historically been subjected to disciplining and visual policing because of failing to fit into the frame of modern beauty standards, which are inherently ableist (Gilman 1999; 2014; 2018). Across the world—in the U.S., Germany, and Britain to give but a few examples—the practice of removing unsightly persons from public spaces was codified in law, albeit enforced inconsistently (Schweik 2010). A popular rumor has it that after the end of

World War II, the Soviet streets were cleared of injured war veterans who were begging and engaging in petty trade to be relocated to remote institutions, one of the most iconic ones was the

Valaam. The myth based on this rumor tells a story of how severely disabled veterans ended up on Valaam in labor camps, having fallen victims of the cruelty of the state (Fefelov 1986). As

Robert Dale (Dale 2013) demonstrates, this rumor is not supported by sufficient historical evidence. Yet regardless of whether that particular removal took place, it struck many people who participated in the circulation of this rumor as plausible and in accord with their experience of the

Soviet treatment of marginalized people. As Dale points out, the Soviet state’s street clearance of beggars is a well-documented historical fact: “[c]learing socially marginal individuals and groups from urban public spaces became an integral part of the Stalinist project to cleanse, beautify, and modernize society” (Dale 2013, 267). Given that injured and disabled veterans engaged in petty trade, small-scale criminal activities, and begging immediately after the Great Patriotic War (1941-

1945) (Edele 2009), such a removal would be in agreement with the historical moment’s zeitgeist.

Unsightly beggars were labeled parasitic and antisocial, conveying the sense and feeling of wastefulness and immorality onto the bearers of such labels.

In addition to the politically and legally sanctioned aesthetic disciplining of spaces and bodies, scholars have documented other, more subtle ways to regulate the appearance of people

116 with disabilities and the ways in which disability fits into the broader aesthetic regime. One such work is by Rosemary Garland-Thomson in her book Staring: How We Look (2009), where the disability studies scholar Garland-Thomson provides a critical analysis of staring, a meaning- making activity regulated through moral precepts and driven by curiosity. Distinct from gazing, which she defines as “an oppressive act of disciplinary looking that subordinates its victim”

(Garland-Thomson 2009, 9), staring constitutes a more ambiguous (and potentially generative) form of visual activity. The desire to stare, on the one hand, and the social prohibition to stare together constitute a unique spatially contained intensity that offers opportunities for learning, negotiating the relationship and positionality of the starer and the staree, as well as for claiming the staree’s belonging in a given space. In Stephen Kuusisto’s (2009) words, “the story of staring begins where ordinary seeing fails and this failure then posits a place of (re)visioning.” It is this appreciation of the opportunity for redemptive staring that marks Garland-Thomson’s work.

As I mentioned before, the tropes of supercrip, inspiration porn, and overcoming also contribute to the spectrum of aesthetic devices that plot the stories of disability in Russia— especially in the literary texts that come out of the Soviet period (such as Nikolai Ostrovskiy’s

How the Steel Was Tempered and Boris Polevoy’s The Story of a Real Man). They pertain to the rehabilitation discourse where disability is challenged to be redefined in ableist terms. Eli Clare defines supercrip as follows:

one of the dominant images of disabled people […] A boy without hands bats .486 on his Little League team. A blind man hikes the Appalachian Trail from end to end. An adolescent girl with Down’s syndrome learns to drive and has a boyfriend. A guy with one leg runs across Canada. The nondisabled world is saturated with these stories. Supercrip stories never focus on the conditions that make it so difficult for people with Down’s to have romantic partners, for blind people to have adventures, for disabled kids to play sports. I don’t mean medical conditions. I mean material, social, legal conditions. I mean lack of access, lack of employment, lack of education, lack of personal attendant services. I mean stereotypes and attitudes. I mean oppression (Clare 2015, 2).

117 Alison Kafer (2013) adds that supercrip narratives are based on the medical model of disability, which configures disability as a defect of one’s body or mind that one has to overcome in order to achieve success. It is important to note that supercrip narratives create a figure—the supercrip—which exerts hegemonic power. Supercrip narratives received critique by disability studies scholars for contributing to the proliferation of oppressing narratives that individualize disability and place the responsibility for the quality of life onto the individual who holds a diagnosis.

Disability studies scholars have produced substantial critique of supercrip narratives. Many quite different narratives would fall under the label of supercrip: from stories about people with disabilities doing mundane and routine things such as having hobbies or having a family, to stories about exceptional achievements such as climbing Mt. Everest. To understand what unites such narratives, I turn to Sami Schalk’s article Reevaluating the Supercrip (2016), where she provided a helpful systematization of scholarship around the figure of supercrip. Schalk argues that supercrip genres are storyline devices that, at the same time, differ across various genres and media. As a storyline device, supercrip narratives have several features: “superlative language, scientific examination of the body and mind, continual comparison to a nondisabled norm, suppression of negative emotions, suppression of privilege, emphasis on personal effort and attitude, depoliticization of disability, and appeal to a sentimental universal humanity” (Schalk

2016, 84).

There are at least three types of supercrip narratives that Schalk distinguishes. The first two come from the work of Amit Kama (2005), and Schalk added the third one: (1) regular supercrip;

(2) glorified supercrip; (3) superpowered supercrip. The regular supercrip narratives are those whereby people with disabilities gain admiration by performing mundane tasks. The intensity of such narratives is predicated on the low expectations that nondisabled people have of people with

118 disabilities to be “just like them.” The glorified supercrip is the protagonist of stories of exceptional achievements, adventures, and travels—the Soviet stories of perseverance and incredible achievements fall under this category. As Kama (2005) and Schalk (2016) write, and Alison Kafer

(2013) agrees with them on that, such achievement stories do not acknowledge their protagonists’ privilege and apply the same measuring matrix to all people with disabilities. Such stories never acknowledge structural ableism, racism, sexism, or classism, or, in fact, any of the barriers that pose real risks and threats for those people with disabilities who try to access something. Those who do not have an opportunity to inhabit the position of glorified supercrip protagonists become individuals who just did not try hard enough—and for that, they may be held accountable. Finally, the third type of supercrip narratives is superpowered supercrip. Schalk defines it as “primarily a fiction, television, or film representation of a character who has abilities or ‘powers’ that operate in direct relationship with or contrast to their disability” (Schalk 2016, 81). Stories about superpowered supercrips feature disabled characters who develop extraordinary ability to compensate and trade-off for their disability. These are stories about prosthetic technology that has the potential to enable exceptional abilities in people with disabilities. Such figures raise questions about what counts as disability and ability in the contemporary moment.

A few words need to be said about the two adjacent devices of disability emplotment: inspiration porn and the overcoming narrative. Australian comedian and disability rights activist

Stella Young is considered to have coined the term “inspiration porn.” In her 2012 post on ABC’s website, Young defined inspiration porn as follows: “inspiration porn is an image of a person with a disability, often a kid, doing something completely ordinary - like playing, or talking, or running, or drawing a picture, or hitting a tennis ball - carrying a caption like “your excuse is invalid” or

“before you quit, try.” Increasingly, they feature the Hamilton quote [“The only disability in life is a bad attitude”]” (Young 2002). Inspiration porn is designed to have an emotional impact on

119 nondisabled audiences and put their worries and concerns in perspective. Once a nondisabled person compares their problems with the problems they imagine a depicted person with disabilities has had in achieving the depicted condition, the concerns of the nondisabled onlooker are supposed to lose their significance and salience. And given that no context or additional information is provided regarding the depicted person with disabilities, the only imagined problem that in fact features and underlies this reasoning is the perceived disability of the person on the image and the perceived horrors of their life. The distinct feature of inspiration porn, compared to supercrip narratives, is its intended audience (nondisabled people) and the effect it is supposed to have on them (inspiration and deflation of the significance of their problems). As Jan Grue (2016) analyzed, inspiration porn negatively affects people with disabilities because it “objectifies them, devalues their experiences, and mystifies their place in the world.” In inspiration porn, disability is used as a narrative prosthesis (D. T. Mitchell and Snyder 2001), to wit, as a rhetorical explanatory device to convey something otherwise unrepresentable about a character or, otherwise, to evoke emotion and move the narrative further. “While stories rely upon the potency of disability as a symbolic figure, they rarely take up disability as a social experience or political dimension”

(D. T. Mitchell and Snyder 2001, 205).

Not all overcoming narratives are the same, however. If some of them rely on the concept of disability as an obstacle on one’s way toward wellbeing, something fundamentally undesired and to be eliminated (F. K. Campbell 2009b), other overcoming narratives are about overcoming the configuration of life in which disability is experienced as arresting and causing life disruptions.

An example of the latter would be narratives of wheelchair basketball players interviewed by

Molly Bloom (2019), whose professionalism and success as wheelchair basketball players were not despite their use of wheelchairs but an essential part of it.

120 While most scholars insist that supercrip narratives do little to advance complex or socially just understandings of the lives of disabled people, a handful of researchers have challenged the assumed inherently regressive nature of supercrip narratives. In other words, is it always exploitative to be inspired and moved by a person with disabilities? Does any form of inspiration evade the pitfall of depoliticizing disability and exploiting the narrative of a person with disabilities? In a chapter reflecting on the life of dancer Homer Avila, Simi Linton considers how it might be legitimate to call someone “brave for defying expectations,” suggesting that for people with disabilities, when “our actions are purposeful, our art exciting, or our words meaningful, we do inspire” (2007, 198). Extending this suggestion further, Wendy L. Chrisman calls for “a consideration of inspiration as a valuable, rhetorically strategic emotion” (W. Chrisman 2011,

184), which may be employed by people with disabilities in intra-group contexts in productive ways. Chrisman’s work challenges the idea that all inspirational narratives are supercrip narratives and that all supercrip narratives are targeted at a nondisabled audience.

Disability scholars have supplied ample critique of the supercrip figures, inspiration porn, overcoming narratives, and the use of disability as a narrative prosthesis. These aesthetic and literary devices have serially produced disabled figures as objects of admiration, inspiration, pity, and sorrow. In what follows, I am interested in exploring how represented disabled figures have produced other feelings and together have contributed to the production of a distinct cluster of sentiments, all connected to scandal.

Soviet and Post-Soviet representations of disability

Below I review several visual and narrative examples through which the aesthetics of unwanted social disruption associated with disability surfaces. Although some of the examples are more literary than others, they all offer imagery and use various categories to create the figure of a disabled person that resists depth and instead conducts sentiments. I argue that it is in these

121 provoked affective states that the power of this figure lies. It is against and sparring with these affective states that the emergent inclusion complex formed its own distinct aesthetic.

Broader cultural and political climates mediate aesthetic experiences, including those of encountering disability (Garland-Thomson 1997; 2009; Hughes 1999). The Soviet and post-Soviet

Russian contexts were saturated with and constructed through the use of unique aesthetic, ethical, and epistemic ideals that implicated disability and vulnerability into the aesthetics of heroism and achievement. Lilya Kaganovsky (2008) has examined Stalinist representational regimes, focusing on the ways corporeal vulnerability and trauma served as an equally powerful force in constituting

Stalinist subjectivities, together with the ideological and cultural obsession with fit, strong, and productive bodies. The Soviet representational regimes hosted a range of figures of “healthy, muscular workers and plump children” (Shaw 2017, 3) that were amplified by the sacrificial figures of Nikolay Ostrovskii’s Pavel Korchagin23 and the pilot Maresyev24, both quintessential heroes promoted by state propaganda. Claire Shaw’s research on the history of the All-Russia

Society for the Deaf documents the attempts of persons whose bodies were deemed incomplete and defective to negotiate their position vis-à-vis ideal heroic socialist bodies. A potential

“obstacle to overcome,” deafness served as a potential tool for demonstrating exceptional commitment and exceptional ability to embody socialist ideals. Below are examples of grouped representations that highlight one of the aspects of the aesthetics of disability as scandal.

Horror

23 Pavel Korchagin is a fictional figure. He is the protagonist of a social realist novel How the Steel Was Tempered. The distinct feature of Korchagin’s character is his fantastic resilience in the face of struggles, diseases, and impairments which came to him in the course of his life and which he overcame with the help of his willpower and willingness to sacrifice his life for socialism. 24 Alexei Maresyev was a real pilot who was awarded with the title Hero of the Soviet Union for his exceptional achievements and sacrifices during the World War II. His distinct feature is that he was a double-amputee who refused to stay at the rear and returned to the front to continue to fight with the German army. Here, again, his ability to retrain his body and achieve military successes despite his disability served as the underlying morale of his life story.

122 Anthropologists Elena Iarskaia-Smirnova and Pavel Romanov (2014) have analyzed the internal changes within the Soviet representational regime—specifically, how it thematized and presented disability. The scholars argued that the Soviet aesthetic had been internally different, depending on the political context. The Stalinist grand style focused on the ideological presentation of disabled people as committing outstanding military and labor deeds. In such achievements,

Soviet science and technology inevitably supported these heroes. The ideologically sanctioned visual media did not depict the real conditions of poverty, unemployment, alcoholism, and lack of support in which people with disabilities found themselves. The subsequent Thaw period shifted artistic attention to offer more representation of the everyday.

A brief focus on the economic independence of disabled people within cooperatives in the 1920s and early 1930s was replaced by their representation as objects of help and care throughout the 1940s to 1970s. During perestroika the appearance of disability in film represented ‘a part of our life’, ‘reminder of war’ or ‘illustration of human hard-heartedness’ as criticisms of state activities started to be publicly expressed. Leitmotifs of active lifestyles—education, work, sport and creativity—were rarely shown throughout the Soviet period (Iarskaia-Smirnova and Romanov 2014, 68).

At the same time, it was easy to find disablism, or underlying bias against disability (Lydia

Brown in Scuro 2018), on many visual materials. For example, in a 1920 propaganda poster, artist

Radakov depicted a peasant with blindfolded eyes stepping off a cliff. The artist captured the moment when the peasant is about to fall off this cliff due to his inability to control the direction of his movement. The caption on this poster says: “An illiterate person is like a blind person.

Failures and troubles await him everywhere.”

123

Fig. 3. Radakov A.A. An Illiterate Person Is Like a Blind. Failures and troubles await him everywhere. 1920 http://russianposter.ru/, retrieved on 12/14/2019

An example of the use of blindness in ways analogous to those of narrative prosthesis (D. T.

Mitchell and Snyder 2001), this poster relies on blindness as a metaphor of inability to comprehend, evaluate, and choose an optimal course of action. The use of blindness as an explanatory device to communicate the dangers and horrors of illiteracy is undoubtedly not uniquely Soviet—as Joseph Grigely (2006) has shown, cultural contexts at the end of the twentieth-century U.S., and even such mass content producers as The New York Times, use metaphors of blindness and deafness to codify ignorance, disregard, unawareness, inability to account for others. At the same time, a more ordinary depiction of disability in film was still predicated on the medicalization of disability. As Romanov and Iarskaia-Smirnova argue, the body of disabled people did not belong to themselves. Instead, it belonged to Soviet medicine and the

Soviet system of social welfare.

124 During the stagnation period (the Brezhnev era), the repertoire of disability forms was enriched by adding the figure of a trickster disabled person. Because of the social security system, state-sponsored pensions, medical care, and other nonmonetary benefits that people with disabilities were entitled to, the Brezhnev-era anxieties about the possibility to fake disability and thus get access to the system’s perks without actually needing them materialized in the figure of the ‘sponger’ or ‘fake’ people with disabilities (Iarskaia-Smirnova and Romanov 2014, 84).

I counterpose this naturalized and almost cliché use of the metaphor of blindness to two other ways that featured disability. In a 1988 poster Do We Remember? [Pomnim?] artist Vaganov depicted a person sitting in a wheelchair. The viewer sees this person from the back, facing the back of the wheelchair with a red star engraved on the chair and the silhouette of the person.

Fig. 4. Vaganov, Do We Remember? 1988, http://russianposter.ru/, retrieved on 12/14/2019

The silhouette is dark; it mixes with the dark background, showing the blurriness of the person into the background. This poster raises the question of whether Soviet people with disabilities are

125 remembered. Do we remember what happened to them? Do we remember—or even know—how their lives unfolded? What is the responsibility of the onlooker in the story where people with disabilities faced abandonment and lack of community and family engagement? How do those remote homes for the disabled, poverty, and invisibilization of people with disabilities matter now?

Here, again, implied disability stands as a proxy for the effects that the Soviet regime had on individual people; disability again serves as an index of other than itself.

Another poster And Great Stalin Illuminated Our Path [I Stalin Velikiy Nam Pyt’ Ozaril…], made by Reshetov in 1989, shows Vera Mukhina’s famous sculpture Worker and Kolkhoz Woman remade into a pair of a man with a stick who is holding a woman’s hand.

Fig. 5. Reshetov A.A. “And Great Stalin Illuminated Our Path” 1989 (http://russianposter.ru/, retrieved on 12/14/2019)

The eye sockets of both people are white, creating an impression that both of them are blind.

Reshetov showed these figures as machinistic, made of metal, yet covered with rags or losing the

126 surface that covered their metallic bodies. There is a bitter irony in the title of this poster. It states that Stalin shed light on the path of these people and pointed them to their bright goal. And yet, these people are blind, they follow the predetermined direction, and, as they go, they wear and tear their bodies. They are disabled and metallic, but at the same time, they are vulnerable and strong and sturdy. Together, these posters use disability as an index of the environmental power over an individual as well as of the imperative (and its limits) to withstand the engagements with this environmental factor (be it the universe, the Soviet state, or the war).

Neglect

In his memoir, disability activist and wheelchair user Valeriy Fefelov (1986) heavily critiqued the hypocrisy of Soviet state propaganda and the image of the benevolent state that provides equal and just treatment to all its citizens. Fefelov talked about overcrowded hospitals with people lying forgotten and abandoned on hospital beds in the halls, the low level of provided medical care, poor quality of prosthetic devices and assistive technology, inaccessibility of public transit and housing, and bureaucratic indifference to the voices of people with disabilities. The physical removal of people with disabilities from sight to homes for the disabled negatively contributes to public awareness about disability and the real living conditions of people with disabilities.

Here is the standard wording of the answers with which the Soviet administration approaches the problem of disabled people: "in our country, great attention is constantly paid to the needs of people with disabilities…,” “...they are given great benefits...,” “the forms and methods of social provision of disabled people,” “only in recent years, the Soviet government adopted important decisions on measures to further service disabled people” and so on and so forth. And not one of these answers has a concrete action (Fefelov 1986, 25)

Fefelov traced the emergence of the state’s monopoly in disability care to Lenin’s decree of April

26, 1918, where the state took over the responsibility to provide care for people with disabilities, who previously had access to various charities. He noticed, however, that behind the façade of the all-providing caring state, one encountered fundamental deeply embedded indifference of state

127 bureaucrats and the horrifying system of internaty [homes/institutions for people with disabilities].

Describing the system of homes for the disabled, or internaty, Fefelov brought to the fore the system of labor exploitation, violation of privacy and the right to have family and children, mixing of people with mental and physical disabilities together, power abuse, physical violence, lousy food, fights and competition for basic resources, and overall, an atmosphere of abandonment.

The system of indifference that has become the norm leads to a modification of behavior; it turns people into spiritually disabled people. Their fates and faces of impossible boredom are the same. This is not the result of a combination of the same physical disabilities, but the similarity of difficult living conditions. This is the result of more than half a century of pressure from artificially created insurmountable obstacles. (31, italics mine)

The only and probable goal of this is to freeze any initiative with the help of incompatibility and a murderous example of old age not needed by anyone. Indeed, without an application, these lively mind, energy, and initiative are slowly dying. (39-40, italics mine)

Fefelov’s telling descriptors—“faces of impossible boredom,” slow death of a lively mind, energy, initiative from being futile and wasted—work as powerful tools to express the aesthetics of disability representation. The aesthetics of disability representation produced by the disability activist who faced the challenges of the Soviet system shows how the uncritical lumping-together of people with physical disabilities, people with mental disabilities, and older adults into zones of social abandonment (Biehl 2005)—here, internaty—not only reproduces the stereotype that links disability with waste and decay; it materially makes patrons of those institutions waste away, deteriorate their social networks, fade away, disappear, gradually.

Sorrow

In 1974-1980, the Soviet artist Gennadiy Dobrov created a series of paintings titled

Autographs of War, which were later incorporated into his major work, Sheets of Sorrow.

Autographs of War consisted of graphic depictions of veterans with disabilities from the Great

128 Patriotic War25 (from the Valaam home of the disabled), Bakhchisaray, Omsk, Sakhalin, Armenia.

Besides Autographs of War, Sheets of Sorrow included the following collections: Requiem, Prayer for peace, International terrorism, and People with Psychiatric Disabilities in Russia. Below I add some of his works that featured people with disabilities.

Fig. 6. Gennadiy Dovrov. Book about love, Sakhalin, 1976

Fig. 7. Gennadiy Dobrov. Story about medals. There was hell. Bakhchisaray, 1975

25 Great Patriotic War is the name used in Russia to denote the period of the USSR’s involvement in the World War II (1941-1945).

129

Fig. 8. Gennadiy Dobrov. Burnt by the war. Volgograd, 1975

Fig. 9. Gennadiy Dobrov. Price of our happiness. Klimovsk of the Moscow oblast. 1978

His protagonists are disabled veterans whom he met at homes for the disabled. Moved there after the end of the war, disabled veterans faced challenging conditions. Fantastically detailed, Dobrov’s compositions are striking—they show war survivors not as celebratory victors but as suffering figures. Although they bear awards and medals, their faces show pain and misery, and their bodies are not supported by any additional devices or technology, except for a spoon attached in a makeshift manner to help the woman with her meal. This imagery exposes their disabled bodies as scarred by the war and left unsupported to be in a world hostile to nonnormative bodies. None of the depicted figures looks back at the audience. Instead, their gazes are directed down, evoking

130 the feelings of sorrow, wasted opportunities, injustice, and silent endurance, exhaustion on some portraits, and lost hope on other images.

Internaty

Another storyline that has been simultaneously removed from the public eye (usually, the internaty are closed institutions) and vividly visualized is about the special institutions established to house people with disabilities, so-called internaty or homes for the disabled [doma invalidov].

Several narratives contributed to the public image of internaty. One of the most prominent fiction narratives is White on Black (Gonzalez Gallego 2018 [2002]), an autobiographical novel written by the grandson of the general secretary of the Spanish communist party, Ruben David Gonzalez

Gallego about his growing up in Soviet homes for the disabled. The life story of the author is remarkable: Gonzalez Gallego was born in the USSR, taken from his mother and proclaimed dead

(so that she would be separated from him), and channeled to the system of special institutions in the USSR. The child had cerebral palsy and spent his childhood and adolescence in internaty for children with disabilities, and then homes for the disabled. White on Black is profoundly piercing and emotionally difficult. In the preface, Gonzalez Gallego says that his authorial perspective is intentionally sentimental and avoiding descriptions of misery. He says that he writes about physical and spiritual strength, although in his life, he had to encounter too much human cruelty and anger. To provide an example, I translate the opening vignette of the book:

I am a little boy. Night. Winter. I need to go to the toilet. Calling a nanny is useless. There is only one way out - to crawl to the toilet. First, you need to get out of bed. There is a way, I came up with it myself. I just crawl to the edge of the bed and roll onto my back, knocking my body to the floor. Hit. Pain. I crawl to the door to the corridor, push it with my head and crawl out from the relatively warm room into the cold and darkness. At night, all the windows in the corridor are open. It is cold, very cold. I am naked. I have to crawl far. When I crawl past the room where the nannies sleep, I try to call for help, I knock my head on their door. No one responds. I scream. Nobody responds. Maybe I'm screaming too quietly. While I get to the toilet, I freeze completely. In the toilet, the windows are open, there is snow on the windowsill. I get to the pot. I rest. I definitely need to rest before crawling back. As I rest, the urine in the bowl becomes covered with ice crust.

131 I am crawling back. I pull the blanket out of my bed with my teeth, somehow wrap myself in it and try to fall asleep. And in the morning, they will dress me, take me to school. In a history lesson, I will cheerfully talk about the horrors of fascist concentration camps. I'll get an A. I always have A’s in history. I have A’s in all subjects. I am a hero. (Gonzalez Gallego 2018, 1)

This vignette provides vivid metaphors that capture life in an internat: cold floor, irresistible bodily needs and demands, makeshift solutions, improvised self-help, pain, hopeful requests for help, lack of response, the need to rest in the freezing cold. There are profound playfulness and irony in

Gonzalez-Gallego’s voice. He calls himself a hero; he assumes expertise in knowing about the horrors of fascist concentration camps. Having the figure of the concentration camp appear immediately after his narrative about the cold crawling journey he took the night before, Gonzalez-

Gallego leaves the reader to decide if this is only an allusion or an intentionally drawn parallel.

The rest of the vignettes are written in a similarly provocative fashion: instances of verbal abuse are mixed with moments of shared food and sweets, negotiations of power among the residents and the employees, the comparative luxury of having a slice of fresh tomato added to the otherwise bland and inedible food, lies and false promises about equality made as only some children were taken out to walk outside.

In her anthropological novel Probably I Am a Fool, anthropologist Anna Klepikova (2018)

(2018) provides a more recent literary account of the everyday life in a psycho-neurological internat (PNI) for children with severe mental disabilities in Saint Petersburg, Russia. Klepikova captures the textures of life within a state-sponsored institution: lack of resources that children can use and play with; intense boredom among children; minimal conditions of life that often exacerbate preexisting conditions or create new ones; lack of medical education among nurses who would explain children’s behavior as a result of laziness and bad intentions as opposed to the specifics of their physical and mental condition; underpaid and exhausted personnel who do not have enough time and resources to provide adequate care for each child; unequal treatment of

132 children; negotiations of power relations among staff and volunteers. As Klepikova shows, nondisabled outsiders with no knowledge about disability or life and work in internaty reproduce the stereotypes that circulate in Russia about residents of PNIs—she lists comments and opinions her family and friends expressed in response to her idea to conduct research in a PNI: “You work with freaks and psychos—"you’ll give birth to such children yourself,” “they only know to fuck,”

“beware, they can attack,” “they do not benefit society,” “it would be more humane to kill them at birth - why do they live?”, “plants and freaks, in Ancient Rome such children were thrown off a cliff” (2018, 13). Such judgments are not new or exceptional. Instead, they coexist with the stereotypes of pity that nondisabled people have learned to experience and express in contemporary Russia.

At the same time, blind people’s recollections of their childhood and adolescence in special boarding schools for the blind in Saint Petersburg and Verkhnyaya Pyshma that I collected during fieldwork are full of a mixture of fond and bitter memories. Yevdokiya Pavlovna Yablokova remembers her school in Kostroma in the late 1920s: she remembers those days as full of singing, playfulness, and young and motivated teachers—they were joyful, she says. The school in

Leningrad, where she was moved in 1927, was different: more well-equipped but duller and less socially warm. And yet she remembers classes, some interesting, others boring, engaging practices of self-governance at school, student projects and initiatives, cultural tours and visits, hiking trips, thick social relations, and local habits. Anatoliy Fedorovich Solovyov remembers his exceptional physical education teacher of 1925, who was one of the first PE teachers for blind students in the

USSR. He fondly talks about the Soviet addition of PE to the school curriculum for blind students.

Nina Fyodorovna Ivanova admired the help of her teachers, whom she calls assistants in comprehension. She highlights their expertise and motivation, which enabled her peer students to develop substantial expertise necessary for the development of their future careers. More recent

133 accounts—those of the recent graduates from the school in Verkhnyaya Pyshma—shared stories thick with friendship, mentorship, and tricks on how to run away from the school and come back unnoticed.

On the opposite side of the spectrum, there are other stories whereby internaty are known through stories of abuse and terrifying publicized reports. Such stories reproduce, often graphically, that life in internaty takes place outside of the confines of the humane; instead, it takes place in zones of social abandonment and slow death (Biehl 2005). One recent, and very graphic, example of such genre is Anna (Nyuta) Federmesser’s (2019) presentation to the Council under the President of the Russian Federation on the development of civil society and human rights that focused on the processes of dehumanization in PNIs and DDIs [children’s homes for children with disabilities; detskiye doma-internaty]. This report was widely publicized by critical media and news outlets: Meduza26, Esquire27, Echo of Moscow28, Novaya Gazeta29, Tass30, Wonderzine31, among others. I could not find any mention of this report on pro-governmental media outlets such as Russia 1, RIA Novosti, Vesti.ru, 1tv.ru, Vzglyad, Komsomolskaya Pravda. However, the report was published on the Council’s website (Council under the President of the Russian Federation on the Development of Civil Society and Human Rights 2019). Federmesser is a prominent figure in the development of palliative care in Russia and a founder of Russia’s first and only foundation that provides support to hospices. In her presentation, she characterized contemporary PNIs and

DDIs as contemporary GULAGs [Soviet political labor camps]. She provided visual

26 https://meduza.io/feature/2019/06/27/nyuta-federmesser-vystupila-s-dokladom-o-tom-chto-sistema-pni-eto- sovremennyy-gulag-vot-ee-prezentatsiya-s-fotografiyami-iz-internatov 27 https://esquire.ru/articles/108182-vpni-iddi-smert-segodnya-nastupaet-ranshe-chem-zakanchivaetsya-zhizn- doklad-nyuty-federmesser-o-psihonevrologicheskih-internatah-rossii/ 28 https://echo.msk.ru/blog/federmesser/2452111-echo/ 29 https://novayagazeta.ru/news/2019/06/26/152818-protivitsya-reforme-sotsialnyh-uchrezhdeniy-znachit-byt- storonnikom-genotsida-sobstvennogo-naroda-nyuta-federmesser-rasskazala-o-ddi-i-pni-v-rossii 30 https://tass.ru/interviews/6600306 31 https://www.wonderzine.com/wonderzine/life/news/244215-medical-center-in-russia

134 representations of living conditions in PNIs and DDIs in 20 Russian regions: people tied with nylon tights to their beds, people with tumors who did not receive painkillers, extremely low- weight people, people in permanently twisted poses (as an acquired condition), incorrect application of medical devices such as weighted blankets, etc. She stated that instead of mercy, these institutions provide indifference, lack of professionalism, and dehumanization to their patrons. Lack of movement, lack of development, de facto confinement to bed, lack of required medical attention, shortage of personnel. She concluded with statements such as “To resist the reform of social institutions means to be a supporter of the genocide of one’s own people” and

“Here, death comes earlier than life ends.”

Federmesser’s is one of many other similar reports about the institutionalization of disability. Internaty work as phantasmagoric devices to contribute to the aesthetics of scandal frequently associated with disability in Russia. They are phantasmagoric because these descriptions, rooted in reality, also capture cultural fears, emotions, and fiction related to the lives of people with disabilities. Such stories about internaty do not provide any opportunity to conceptualize their residents as valued members of society—because they are literally valued less than diapers, syringes, and napkins that circulate through these homes and because they internalize such systemic neglect toward themselves and live up to the standards set up for them. It is these stories that often reach the critical public, due to their scandalous content, graphic imagery, and outrageous violations of the very basic values and rights.

Post-Soviet Forms of Rejection

In recent years, several films have appeared on Russian screens that have added new facets to the disability aesthetics of scandal and social disruption. Alongside international cinema, however, two feature films attract my attention in particular. One is Tribe (Slaboshpytskyi 2014).

Another is How Vit’ka-the-Garlic Drove Liokha-the-Pole to a Home for the Disabled [Kak Vit’ka

135 Chesnok Vioz Lekhu Shtyrya v Dom Invalidov] (Khant 2017). Unlike other feature films— international and domestic—they do not reproduce the familiar disability narratives heavily critiqued by Western disability studies scholars—the supercrip narrative (Clare 2017; Kafer 2013), the narrative of overcoming, and inspiration porn (Young 2002). Yet, they produce disability as a fundamentally other experience that poses severe challenges to the possibility of establishing shared grounds with protagonists with disability. They place disability at the center of their narratives and provide the reader with fresh imagery and plots associated with disability. In the end, they remain within the genre of scandal.

Awash with the violence of various registers, Tribe tells a story of a boarding school for deaf students in Ukraine. A new student comes to school and finds his way into the school students’ social life, which turns out to be centered around organized crime and sex work. There are several features of this film that make problematic the ways implicating deafness in this story. First, despite its prominent presence in the film and the film’s intended international viewership,

Ukrainian sign language is not subtitled (which was the director’s decision). Hearing ambient sounds but not understanding what the protagonists are saying, the hearing viewer observes a series of actions that they do not fully understand. This choice contributes to the aestheticization of deafness and its objectification—using sign language becomes a spectacle, a source of aesthetic pleasure for the viewer. Second, awash with incomprehensible violence, sex abuse, and organized sex work among school children, this film gives a material form to the stereotypes that have been surrounding the deaf community in (post)socialist spaces for decades on end—the stereotypes that deaf people are naturally equipped to work in organized crime or even have a psychological predisposition for criminal behavior (see also Shaw 2017, chap. 5). Claire Shaw (2017) demonstrated that such stereotypes provoked increased policing of the deaf community and isolation from the hearing. Given the relative dearth of visual and cinematic representations of

136 deafness, this film further exacerbates preexisting stereotypes about deafness. It also draws clear distinctions between the hearing and the deaf, denying access to the full complexity of protagonists who become viewed and defined through the lens of deafness as an othering device.

How Vit’ka-the-Garlic Drove Liokha-the-Pole to a Home for the Disabled [Kak Vit’ka

Chesnok Vioz Lekhu Shtyrya v Dom Invalidov] offers a plot that features disability and configures it through a different set of elements. The film revolves around the road trip that the protagonist

Vit’ka-the-Garlic embarks on to transport his paralyzed father to a home for the disabled, located far away from their town. The underlying conflict of the film becomes about the place of disability in low-income environments and the historically formed networks of care. Vit’ka’s paralyzed father, Liokha, as the viewer discovers, had left Vit’ka for organized crime and another family.

After becoming quadriplegic, Liokha, the wealthy crime lord, ends up in his hometown. He lives in a small apartment alone, while his survival depends on the mercy and kindness of a neighbor who comes to feed, clean, and medicate him. Such an arrangement proves unsustainable when the viewer learns that the neighbor is motivated by her pursuit to secure the ownership of Liokha’s apartment. The viewer sees how the only realistic place for disabled Liokha ends up being a home for the disabled, despite his wealth, connections in the crime world, and another family. This film is a drama that shows the out-of-placeness of disability and the hard feelings associated with this exclusion. Vit’ka and Liokha eventually reach the home, and Vit’ka leaves Liokha there, despite an emotional turmoil he goes through. Vit’ka is angry at his father for abandoning him to live a difficult life of low means and, at the same time, he feels horrified by the home and pitiful of

Liokha as everyone from his life rejected him as a disabled person—his crime companions and his other family. This film adds another layer to the aesthetics of scandal surrounding disability—the fear of the situations in which their ownership of apartments and goods becomes the only reason to value a person with disabilities.

137 As I demonstrated in this section, the aesthetic of disability as scandal and disruption of the social has various facets and valences, half-rooted in lived experience and half-fictionalized.

The insufficient provision of access infrastructures and services of enablement, understaffed, poorly funded and under-supervised special homes for the disabled, together with the lack of intentional and orchestrated effort to provide environments conducive to the flourishing of people with disabilities constitute the material bases of the phantasmagoria of disability as scandal. On the other hand, such forms of representation are aesthetic choices that could have been made otherwise. The commonality and ease with which these choices are made entrenches the idea that this aesthetic is realistic in its core. In this sense, when disability enters the fabric of the everyday, it disrupts its everyday textures, devoid of disability as a result of the insidious work of disability exclusion. It becomes a scandal.

Aesthetics of inclusion

The First World Congress for Persons with Disabilities was organized to offer an alternative to the phantasmagory of scandal that surrounded disability matters and representations in Russia. Just as Oleg opposed the figure of the demanding complainer, the Congress opposed the idea that disability is associated with social disruption and scandal. In what follows, I take a closer look at the materialization of the offered alternative.

The promise of the Congress was a carefully created and curated spectacle. Locally based designers, PR and SMM professionals, as well as filmmakers, worked to communicate this sense of futurity and promise. Everything mattered: the venue and its exterior and interior design; the looks of the participants and the organizers; the design of badges; flags; workshop locations; the quality of hospitality service in the airport, public transit, special buses, hotels, venues, cafeterias, and restaurants; social media content; documentary films; interviews and the presentation of spokespersons associated with the Congress. At the opening ceremony, the audience enjoyed the

138 performance of the winner of the Russian version of The Voice Kids 3—Danil Pluzhnikov. At the closing ceremony, the organizers let doves fly away in a symbolic gesture.

Fig. 10 (left), Opening ceremony, performance by Danil Pluzhnikov Fig. 11 (right) a photo of the Congress’s opening ceremony, Governor of the Sverdlovsk Region is addressing the audience. The appearance and the aesthetics of this event mattered in particular because of the perceived public assumption that events for persons with disabilities do not have attractive design.

Although this is not entirely untrue, given the conspicuously low budgets that granting agencies allow for PR and promotion, such a line of thinking did not clarify the reasons of the association between disability and unattractiveness. In so doing, it further naturalized such linking and essentializing people with disabilities as fundamentally opposite to what counts as beautiful and pleasant.

139 Fig. 12 Inclusive Ball at the Congress

Fig. 13. Cake ceremony at the Congress

140 Fig. 14 (left) and Fig. 15 (right) Examples of visual designs associated with the Congress

Fig. 16 (left) audience at one of the panels at the Congress Fig. 17 (right) Congressional Resolution

141 Fig. 18 Dove release at the closing ceremony

Fig. 19 (left) Audience at the closing ceremony Fig. 20 (right) Onstage celebration at the closing ceremony

The content presented through the Congress’s social media accounts demonstrated a happy, feel-good image of the Congress and people associated with it. The Congress’s Instagram account showed photographs of passionate, successful, engaged, and motivated people with disabilities.

Famous figures with disabilities from the past and present (Stevie Wonder, Frida Kahlo, Helen

Keller, Lenin Moreno, Ludwig van Beethoven, Andrea Bocelli, Alexei Maresyev, Sarah

Bernhardt) with a quotation attached to their picture featured in the account. The quotations were mostly inspirational: “The Lord that I serve says the impossible is unacceptable” (Stevie Wonder),

“You need to be charming to get success” (Sarah Bernhardt), “Everybody feels fear. If someone tells you that they are afraid of nothing, don’t believe them. You have to be able to overcome this feeling in yourself” (Alexei Mares’yev), “Tree of Hope, remain strong!” (Frida Kahlo), “The secret

142 of life is not in doing what you love but in loving what you do” (Andrea Bocelli), “Alone we can do so little; together we can do so much” (Helen Keller). The use of such quotations reproduced the problematic idea that the challenges that people with disabilities encounter are mostly rooted in their insufficiently strong willpower or their wrong perspective. They offered no analysis of the ways in which the social system is laid out to support only some bodies and minds (Kafer 2013).

In addition to inspirational quotes and figures, the accounts—both on Facebook and on

Instagram—published posts through which they introduced some of the members to the public. A series of photos and a caption was solicited from the participants and edited to fit into the broader aesthetic (through changing the photos’ color scheme and rendering them more appealing to look at). This way, visitors and followers learned about Tamara Kosilova, who is a primary school teacher, a world peace activist and an activist in the local branch of the All-Russia Society of the

Disabled. Camphill Liebenfels is an anthroposophic community from Austria where people with and without disabilities live and work together. They learn about Yury Kovin, the head of the All-

Russian Society of the Blind branch in one of Yekaterinburg’s districts: “He organizes concerts, annual festivals “Harvest Days” for lovers of gardening, Days of the Elderly, educational trips and tours in the framework of the program on social tourism”; Alexei Trantsev, the founder of the

Inclusive Volunteer club, a unique organization in Russia where many people with and without disabilities volunteer alongside each other; Svetlana Starostina, president of the charity foundation of social assistance “Sodeystvie” and the head of charity programs of the Center of spiritual and cultural renaissance “Stratilat” (the center assists poor, homeless, elderly people as well as to people with disabilities and youth); Natalya Mashanova, a music therapist, the head of the PTITSA folk-band, and the manager of the VMESTE workshop at Blagoe Delo NGO; Anastasiya

Len’kova, self-employed child psychologist, lives an active life, traveler, interested in developing touristic services for people with disabilities; Dmitriy Sigil’yetov, horseback riding with dogs,

143 performs at competitions, is a junior trainer and helps to teach horseback riding to orphan children and people with disabilities from a special boarding school. The readers/viewers never learn about any specifics of one’s diagnosis. Neither did they actually learn if a person at all has any disability.

Instead, they learned that each individual who presented their story is a busy and active person with several platforms for civic action.

The images posted by the Congress’s PR team, supplemented with the captions, provided clear instruction on the kinds of feelings that these forms of visualization were trying to provoke.

For example, on September 11, 2017, the Congress’s Instagram account posted five photographs from a performance of a group at the opening ceremony. The caption goes as follows:

today we were shooting the opening ceremony of the First World Congress for persons with disabilities. It was staggering as if all emotions had previously been perceived through a blanket, and then suddenly, the blanket was gone, and you started perceiving everything very unbearably vividly. It was very strange and unusual. I was holding my breath throughout the entire event. I even thought that I would have to whisper my questions during interviews, but luckily, eventually I didn’t. What people with disabilities were doing on stage was not just beautiful, it was exceptionally beautiful and it touched something in me, something that I was not aware of having before.

The photographs captured ambulatory dancers and dancers on wheelchairs, wearing all-black outfits and being captured in expressive poses.

144

Fig. 21. Instagram post from the Congress’s official Instagram account

It is important to acknowledge at this point that not everyone appreciated this aesthetics.

Some people with disabilities expressed to me that they did not want to participate and reproduce images and discourses foreign for them and their everyday lives—foreign in the sense that they were not as bright and polished as the Congress’s representation apparatus presented them. They saw the Congress’s focus on achievements and lack of critique of anything pertaining to disability affairs (all content was positive and celebratory) as detached from reality and complicit with the very system that produces their lives as insufficiently supported in the first place. These people felt unwelcome to voice their critique, so they restricted themselves to only passing comments in private conversations. As Sarah Ahmed (2012) writes, the critical interventions of feminist killjoys

145 are close in their effect—by bringing public attention to the problem, feminist killjoys become a problem themselves. The frustration is placed onto them. Analogously, these individuals felt that by voicing any disagreement, they would become a scandal.

Inclusion plots

The Congress’ Instagram account provided a definition of inclusion as part of “the

Congress’s dictionary” initiative (which was launched but then did not materialize as planned due to the increasing busyness of the understaffed social media committee). There, inclusion appeared as the sole term that was defined, with the provided definition being “involvement of people with disabilities into active social life”. The photo chosen to be associated with inclusion is of an unidentified smiling woman who is visibly identifiable as having Down’s syndrome. The caption does not discuss the woman either and instead contains a mixture of tags in Russian and in English:

#termsofthecongress #inclusion #disabilitycongress2017 #dcongress2017 #Ekaterinburg #EKB

#Russia #Ural #WelcomeToRussia #expo2025 #ekaterinburgexpo2025. A handful of tags in

Russian appear untranslated: #увидетьценностькаждого (#MakeValuesVisible),

#Общественнаяинициатива (#PublicInitiative), #белаятрость (#whitecane),

146 #инвалидностьнедиагнозаресурсдляразвития

(#disabilityisnotadiagnosisbutaresourcefordevelopment).

Fig. 22 Definition of inclusion, the Congress’s official Instagram account

The trope of inclusivity during the Congress was anchored in the concept of talents and skills that people with disabilities have, as well as their deep involvement in social life. By showcasing instances of the successful engagement of a person with a disability in a civil initiative, social program, or job, the Congress’s representation machine was creating and pushing forward an intensity. This intensity was designed to fascinate, to make an embodied impact, provoke sensational feelings among both people with and without disabilities to communicate to them not

147 only the idea but the sense of a tremendous untapped potential that people with disabilities hold.32

The intended yet unarticulated message went as follows: instead of wasting this potential, we have to activate it, we have to tap into it.

I would like to stop here for a moment and emphasize the fact that the focus on the abilities of people with disabilities—hidden or visible, incipient or advanced, compensatory or unrelated to their particular health condition and their adaptation to living with it—is not a radical way out of the ideology of ableism. This problematization of inclusion is still within the purview of the modern society that challenges some people to prove their abilities while leaving others (those whose embodiment is within the range of normal distribution) exempt from responding to this challenge. It is still within an understanding that naturalizes the inability of disability and pretends that a closer look at what people with disabilities can do will solve the problem of their exclusion.

It is not an ideology that offers a radically different ontology—disability is still defined as negative, it is still challenged to define itself through the metric of abilities and skills, and there is still only one way out this devaluation—to prove this person’s ability to cope with the world in a way it is -

- unchanged, organized and built around only certain bodies and minds.

The analytics of ability is a dangerous tool when applied to assess human worth, especially since the development of industrial capitalism, which harnessed human creativity and practice.

Robert McRuer’s (2006) crip theory offers a sharp critique of the analytics of ability: these abilities are structured, organized, and valued by the systems of oppression—they work to empower those who are already in power. The problem with the analytics of ability becomes epitomized in the principle of compulsory able-bodiedness—the monopoly of able-bodiedness as the sole goal and

32 I would like to emphasize here, that until the end, the organizing committee did not reach any agreement on what inclusion is and why exactly they were pursuing it. There was little understanding about the reason why people with disabilities were invited to share and showcase their skills and abilities. Different organizers and different participants held different opinions, others were still trying to figure it out. It was thus impossible to talk about “the dominant” way to interpret inclusion.

148 reference point of what a valued and worthy life can be. People with disabilities, thus, become devalued culturally, politically, and socioeconomically, because their practico-perceptual engagement with the world codified as skills misfits the slots of abilities appreciated within contemporary capitalist society: “It is here as well that we can begin to understand the compulsory nature of able-bodiedness: in the emergent capitalist system, free to sell one’s labor but not free to do anything else effectively meant free to have an able body but not particularly free to have anything else” (McRuer 2006, 8). McRuer writes about North American contexts, grounded in liberally versed political and economic relations. Cassandra Hartblay’s (2014) work helps extend

McRuer’s argument to contexts other than the neoliberal U.S.: both capitalism and state socialism,

Hartblay argues, served as productivity regimes. Their difference lay in ideological intricacies. If

U.S. capitalism interlocked productivity with the liberal values of individuality and autonomy,

Soviet state socialism harnessed the labor power of Soviet citizens through socialist ideologies of collective effort and labor as the ultimate expression of human creativity. Thus, both ideologies and political systems relied on recruiting their citizens into their productivity regimes, albeit by different sets of incentives. In contemporary Russia, where the value of unity and collectivity coexists with the neoliberal incentives to shape oneself as an entrepreneur of the self, productivity remains a strong frame through which the value of human life gets to be determined. Moreover, the ability to publicly present one’s productivity and brand themselves constitutes an important part of the disabled worker’s ability to perform in the capitalist job market (see also Gershon 2016).

For people with disabilities who are exceptional in their tight connection to the analytics of ability and in their dramatically lower chances to develop socially valued abilities within capitalist societies, the power of the analytics of ability indeed is dangerous—it creates an impression that their official employment (which serves as a marker of possessing necessary abilities) is going to solve all problems that disabled people face. It also naturalizes their exclusion as a result of their

149 naturalized in-abilities (to perform tasks in similar manners and with similar efficiency as their nondisabled peers do).

In the Congress’s program, one event, in particular, was planned to serve as a platform for such impactful experiences—the city festival Inclusive City at the Mayakovsky Central Park. From the beginning, it was designed as a large festival with workshops held by participants with disabilities, their performances, entertainment stalls, and other activities such as planting of an alley of trees and taking a ride at the children’s railroad. The Congress participants had been invited and encouraged to submit their ideas on how they could contribute to the festivities. Some people volunteered to perform magic and tricks; others suggested holding sculpturing workshops; and yet others to play music or to help with a game quest. This festival was open to the public and thus, was designed to be the epitome of inclusion—an emotionally impactful experience where people with disabilities would teach something (a skill, a trick, a game) and showcase their skills and ideas. The organizers envisioned that this shared space, where nondisabled people would have a chance to observe the abilities and talents of people with disabilities, would contribute to the development of the culture of inclusion in the city; it would also provide plenty of role models to other people with disabilities.

Most importantly, through participating in Inclusive City, disabled and nondisabled people would get a chance to experience a reverse power dynamic. Eventually, due to adverse weather conditions, the event was moved to a different location indoors. In practice, the new venue did not offer an essential component of the planned experiences—nondisabled passers-by and strangers who did not choose to come to a disability-themed event and found themselves there anyway.

What the participants were left with was a crowd of participants who were already familiar with each other and the volunteers. I would like to be careful with the evaluation of this relocation for

150 several reasons. The organizers were deeply saddened by the loss of an opportunity to encounter

“the city” with the Congress and its participants. Had this event been held in the park, the participants would have had more momentary interactions with strangers and park visitors. The sheer number of guests would have been more significant. Yet, I would like to question the immediacy of the impact that the organizers anticipated this event with its short-term interactions to have. Would it have been enough to see a person with mental disabilities teach clay figurine making or interact with them for a little bit, to challenge one’s preexisting assumptions about disability? Would the impact of interactions with persons with disabilities have been as straightforward and direct? Would strangers necessarily see this as a challenge to their preexisting assumptions, or would the preexisting framework crumble in the face of such an event and the experiences it could offer? What would be the politics of such appearance (Zoanni 2019)?

On the other hand, I would like to bring to the forefront another group of nondisabled people who had consumed representations of inclusivity during the Congress—the volunteers. The volunteers were mostly students, people from a regional rehabilitation facility, parents, and assistants of persons with disabilities. They had many more opportunities to find themselves in an environment orchestrated to demonstrate the abundance of abilities among people with disabilities.

These people attended the event even after it was relocated. These people have experienced the most definite impact, I would say.

The next day featured the presentation of the best inclusive practices. It was a show and an onstage presentation of nine practices from around the world, whereby people with disabilities actively provided services on the open market to mixed groups of clients and, preferably, derived values from their disability. It opened with a short video clip made overnight from the materials of Inclusive City. The reasoning behind using this material as an opening was that it would show that “we did inclusion ourselves, just yesterday.” It would translate the experience of the previous

151 day into a category—inclusion. It would also shape and charge those experiences with a particular emotion. Finally, such a presentation served as proof that inclusion is real and doable. It was particularly strong because this video, framing the story of what had already happened, required no additional effort. By framing inclusion as something that had already happened, the organizers created an impression that in order to create and maintain inclusivity, the created ‘we’ don’t have to do anything beyond what we already can do. This was proof that through action and preparation, it was possible to make the spectacle come to life.

Nine presentations followed the video on the inclusivity of Inclusive City. Those presentations told stories about initiatives and programs which were based on a relationality regime and forms of engagement selected by the organizer responsible for this event—Oleg from White

Cane. Oleg curated a collection of initiatives whereby people with and without disabilities collaborated in such a way that everyone occupied their particular niche, everybody was needed in the place they filled in the division of labor. For the interest of time, I will not review all presented materials and instead will focus on three of them: the sensory project “Walk in the dark”

(Russia), kindergarten teachers with mental disabilities (Israel), and management of a wheelchair producing company (Russia). These projects most clearly demonstrate the ideology of ability within which people with disability create their value by producing stories and examples of their abilities.

The sensory project “Walk in the Dark” is a gallery space that hosts exhibitions in complete darkness. Visitors are invited to explore the four dark rooms through touch, smell, and sound. The rooms were modeled after a kitchen, a grocery store, a street, and a museum. This exhibition may only be explored with a guide, competent to confidently navigate in the dark, pleasantly and engagingly interact with the visitors, and manage their activities inside—such as running some games, or challenges, or simply maintaining the group’s good mood. All guides who work at this

152 exhibition are blind. Blindness and one’s ability to travel with a white cane are prerequisites for the job of a guide as it is assumed that the everyday practice of traveling with a white cane helps the person become an advanced guide in the dark. Blind persons are simply already well-trained guides who do not need to acquire the majority of the skills necessary for this job; they already have them developed as a result of successful adjustment to living in the world as a blind person.

The second project I describe here is one of the Israeli persons with mental disabilities who worked as kindergarten teachers. The match that was found here is between the high energy of some persons with Down syndrome and their openness to others combined with their ability to engage children of young age in various developmental games. Working in a pair with a nondisabled teacher, teachers with Down syndrome play with children for more extended periods, and with greater joy, the presenters stated. The presenter from Israel shared their perspective: nobody else can play so well and so long with children as persons with Down syndrome do—they are energetic, loving, and careful with children. They viewed this form of employment as mutually beneficial: the teachers with Down syndrome received a competitive salary, were appreciated for their professional activities, and were engaged in activities they liked; the kindergarten, in return, acquired workers with skills, abilities, and preferences that were valuable in interacting with children. Although several parents had initially expressed concern and skepticism about employing a person with mental disabilities to take care of their children, the kindergarten’s experience and position convinced them otherwise. This employment was considered to be inclusive because of the match between disabled persons’ abilities and the needs that the employer had. What made it one of the “best” inclusive practices, however, was the ability of persons with Down syndrome to outdo nondisabled competitors, in the assumed conditions of “open market competition.”

The last presented project was a company that produces assistive technology for people with mobility impairments. It designs and produce different kinds of wheelchairs, scooters, ramps,

153 lifting platforms, stairclimbing devices, and other assistive technology to facilitate the mobility of wheelchair users. The area of this company’s specialization, however, was irrelevant for its selection to be put on the list of the best “inclusive” practices. It was the company’s director’s ability to manage this company and an associated NPO through giving verbal instructions that made this case an instance of inclusion. The company’s director had lost mobility as a result of a an accident more than a decade ago. In 2017, when the Congress took place, he could only move some muscles on his face and his left forearm. He is a successful entrepreneur with an active social agenda and profile—among the programs his NPO implemented had been educational courses on accessibility for locally-based architects, the equipment of 13 beaches around Russia with necessary technology to ensure their accessibility for wheelchair users. What made this case inclusive is the match between the director’s developed ability to give verbal instructions and the opportunity to take administrative positions. Oleg justified this choice by the following reasoning:

“Giving instructions and making sure that people follow them well is his strength. He simply cannot rely on himself to do a task—instead, he has to be really good in communicating what he needs and how he sees his need can be met. In business, this ability is fundamental.”

In these three different cases, the shared ground was the assumed competitiveness of persons with disabilities within the conditions of the open job market. Inclusivity, here, becomes a characteristic of the contexts and programs where the engagement of persons with disabilities is justified by their “objective” outperformance of their nondisabled counterparts. To illustrate this,

Oleg made a distinction between a deaf person working as a cashier at the register in a grocery store versus a deaf person working as a professional diver. In the former case, deafness and the abilities deaf people develop as a result of being deaf do not make them a better cashier. If there were a hearing competitor for this job, the employer would prefer the hearing person just because the hearing applicant would require less additional investment, it would be assumed. The job of a

154 professional diver is an entirely different case, however. Fluency in sign language makes deaf RSL speakers outperform their hearing counterparts in this context because the scope of their communication abilities underwater is dramatically wider. Deaf people, Oleg concludes, are just

“objectively” stronger applicants for this position.

Importantly, this was inclusion configured as economically resilient and socially sustainable—an inclusion that did not need additional political scaffolding. I highlight the aesthetics of nondisruptiveness, realized through the aesthetics of social sustainability and economic resilience of inclusivity thus presented. This aesthetics presented people with disabilities as neatly fitting in, not challenging existing arrangements and stylistics of social composition.

There was no strain, difficulty, or challenge on screen and in speech. Blind guides exhibit no signs of so-called blindisms, or unique behavioral features associated with blind people that mark these people as misfitting in the visually controlled environments. Blind guides do not rock their body back and forth while seated; they do not rub their eyes; they do not jump in place while waiting.

To follow the visual social etiquette, they orient their faces toward their interlocutors, imitate the dynamics of looks, dress well according to the conventions of the ocularcentric world in which they live. Teachers with mental disabilities are presented as dressed well, engaged in socially appropriate public activities, controlled and differentiated behavior with children, their parents, and other teachers. The company’s director, too, presents himself as well-groomed director of a large for-profit company. He comports himself through speech and choices in clothing. All figures—and in this context, I treat them as figures but not as individuals—present themselves as having figured out a way to effortlessly fit people with disabilities in. They promise the future in which people with disabilities appear as normalized members of society.

These figures divert attention from a lot of work. First, the aesthetic labor defined as “the employment of workers with certain embodied capacities and attributes that favorably appeal to

155 customers and which are then organizationally mobilized, developed and commodified” (Warhurst and Nickson 2007, 104). Especially for people with disabilities who encounter additional challenges as they try to meet the standard of conventional beauty, the aesthetic labor may be particularly time-consuming and costly. Second, they obfuscate the emotional labor that is not accentuated in any of those presentations, yet that often occurs in places of employment of a person with disabilities. This emotional labor consists in helping the nondisabled deal with their feelings about sharing the previously monopolized environments. My blind interlocutors engaged with such situations with care and respect for their nondisabled interlocutors, though academic literature has offered critique of this often unwilful recruitment of people with disabilities into the position of teachers and pedagogues (Kulick and Rydström 2015). My friend Zhenya, who worked as a guide at the exhibition in the dark, shared with me that though their tour is completely built as an experience for their clients, that is, as an exploration of their own sensorial and bodily skills and abilities, during the last stage of the tour—the last 15 minutes, when they would have soft drinks sitting at a bar in the dark and give their guests an opportunity to process their experience collectively—people would always turn the conversation to blindness and its tragedy and peculiarity of living. And as a dutiful employee and an engaging guide, Zhenya would always delve into the conversation explaining how blindness affects her life and how she does things.

The video clips that represented these practices and figures were stylized in similar ways.

In these videos, the disabled figures fit: in a postsocialist neoliberal economy, in a community setting, in a heteronormative family. They take care of the frictions of potential misfitting on themselves. Their fitting-in is expressed by the familiar aesthetic tricks: good-quality pictures, elegant clothing, the laughing faces of video protagonists, uplifting music, bright colors, good editing work. Through this presentation of disability as easy, effortless fitting-in, several things are accomplished. First, it creates an impression that inclusive practices are possible and feasible.

156 All presentations made it sounds as if similar actions were just a few technical steps away from being transplanted. Second, this aesthetic of disability disregards the temporal containment of fitting. Rosemary Garland-Thomson has developed a critical concept misfit (2011) that conceptualizes disability as always already spatially and temporally situated. She suggested that the critical framework of misfitting enables the analytical reorientation from essentializing disability to tracking its spatially and temporally dynamic experiences of fitting and misfitting.

The power of this concept, thus, is in its emphasis on the materiality and corporeality that underlie any experience of living with a disability, challenging the social model of disability or a discourse- centered model. As a concept, misfit challenges the representation of disability and inclusion presented in those videos. These videos present disabled bodies as always effortless and untouched by any experience of misfitting. These videos present the world as always already congruent with their bodies and mentalities.

Critical feminist scholar Sara Ahmed argues that in the institutional settings she has researched (the UK and Australian universities) “diversity33 work” becomes about generating the

“right image” and “correcting the wrong one” (Ahmed 2012, 34). In liberal contexts, the ways in which inclusion and diversity are presented and displayed have been used as markers of inclusion’s reality and the organization’s character. One such way would be to select posterchildren and spokespersons for institutional diversity and render them the voices and actors of diversity (which also means that the responsibility for practicing diversity becomes lifted from members of the dominant group). Another method would be to generate the narratives that feature these persons in stories about the institution’s diversity, so that the organization becomes diverse. Similar work has been done at the Congress.

33 In her book On Being Included: Racism and Diversity in Institutional Life, Sara Ahmed uses terms inclusion and diversity interchangeably.

157 When inclusion comes to be configured not through critique and systemic redesign but through generating opportunities within an already existing system that produces people with disabilities as disadvantaged in the first place, it is easy to downplay the significance of the structural factors that enable some persons with disabilities to compete with nondisabled counterparts whereas, leaving those who cannot behind. It becomes possible to say that the problem of exclusion is predicated on the impoverished imagination of both disabled and nondisabled people to create such contexts—where the strengths of people with disabilities will be used appropriately. If we just think hard enough, we will figure out ways to engage people with disabilities economically using their competitive abilities.

The presentation of these plots and stories as “best inclusion practices” enables the belief that there are places and times where disability, in fact, becomes included and that replicating such practices would bring inclusivity about in a given society. Relying on the assumed portability of such practices and their success in different contexts motivated their display for the broader public of Congress attendees. They were the icons of disability success and not the tokens of disability as scandal.

When the panel ended, people who were sitting by my side in the audience started talking amongst themselves. Their animated voices gave an impression of being pleasantly surprised. One young woman said that she had not come across such honest and workable solutions. “They are the future,” a man who was sitting to the right of her added. The rest agreed and kept exchanging words of admiration about how elegant these practices were and how they wished they had something similar. I sat there for a little while after they stood up and left, gathering my thoughts about the sensorially overwhelming future that I had just observed.

Although, as I mentioned earlier, disability studies scholars tend to heavily critique inspiration derived from stories about people with disabilities, disability scholars Simi Linton

158 (2007) and Wendy Chrisman (2011) provide the rare examples of researchers who have addressed the feeling of inspiration with more nuance. Both scholars defend the possibility of inspiring narratives about people with disabilities that move their audiences and celebrate their protagonists.

Wendy Chrisman challenges the assumption that inspiration is necessarily connected to the narrative of overcoming. The feeling of inspiration rooted in the narrative of overcoming encourages placing all responsibility for facing the challenges associated with having a disability in the contemporary world onto the individual with this disability. The narrative of overcoming does not provide tools to address the systemic and systematic discrimination embedded in the social system. Chrisman suggests that inspirational narratives do different things to different audiences.

My fieldwork demonstrated that narratives of overcoming are not a necessary condition for feeling inspired. My interlocutors’ stories about themselves and their achievements energized different audiences. Although it was still ableism that conditioned people in the audience— disabled and nondisabled—to be moved and energized by these stories, and here I mean that it was their lack of expectations for people with mental disabilities to find employment, especially working directly with children, a particularly overprotected population in Russia. Instead, they were surprised and moved against the backdrop of this ableist system. These inclusion narratives were not precisely about the achievements of individuals with disabilities. Instead, they were success stories that featured disabled protagonists, but first and foremost, they were stories about social practices, project narratives, scenarios of a future that is possible today. Although at times it felt that the naturalization of one’s particular abilities as the necessary effect of a specific kind of disability has a strong potential of marginalizing those individuals who do not develop these

“natural” coping mechanisms, I also know that several groups of Congress attendees did return home and brainstorm about possible economic and social practices that could employ their talents.

159 Some opened a bakery and a crafts workshop, where workers with learning disabilities were employed, another group launched a mixed art therapy group for people with and without disabilities, a blind person started a company of city tours with a blind guide. Thus, it sporadically—not systemically—had moved some of the attendees in new directions they deemed desirable and helpful for their lives.

This phantasmagory of inclusion is also partly real and partly dreamed about, as is the phantasmagory of disability as scandal. The former offers different tools of achieving desired changes in one’s life—through lateral connections, dissemination of know-how, ad hoc solutions, and one’s ability to appeal aesthetically and economically to neoliberally habituated audiences. In line with other privatized and individualized strategies of engaging with change characteristic of post-Soviet Russia (Rivkin-Fish 2005), the phantasmagory of inclusion presented the project of a possible future of self-empowered and network-empowered people with disabilities who were not positioned as fundamentally different members of the social mainstream, its disruptors, but instead, as fellow aspiring economic actors whose efforts and labors are designed to contribute to the wellbeing of the broader society. The depoliticization of disability that occurs with this form of phantasmagory is connected to the intentional shift toward the economic, away from the political, which is distinct from the process of depoliticization that takes place with the phantasmagory of disability as scandal.

In the last section of this chapter, I turn my attention to a limit case—a remotely located special boarding school for blind children where I test the limits of applicability of these two forms of disability phantasmagory.

160 How far does inclusion travel?

We are in a small town in Russia’s Asian part, more than 50 hours by car to the east from

Yekaterinburg, 257 miles away from the closest urban center. It is late November 2017. Oleg and

I arrived at the school the night before the presentation. This school was on our way to Vladivostok, and we decided to stop by. Oleg knew the school administration and wanted to stop by and talk to the students as he firmly believed in the effect that a conversation with these children could have on their lives. In that November visit, Oleg wanted to talk to children about inclusion. He hoped that his stories would move some of the students and inspire them to do something, learn about something new, carry them away. During his presentation, Oleg showed the children several clips from the Congress where animated foreigners expressed fascination with Russia and Russian hospitality. He also told them stories about sailing and showed a few clips from Sails of the Spirit, another of White Cane’s iconic programs. He talked about care for the world around them and their home. He told them to cultivate interest and become interested, pursue what drives and moves them. When I had a moment in between taking pictures, switching files on the laptop, and being urged by the teachers to explain the plan of that day’s event, I looked back at the children and remembered a conversation we had had with a driver and his companion the night before as we were coming from the railway station. The cab driver told us that they work in pairs because otherwise, it is unsafe. They work as cab drivers because it is one of the very few income- generating opportunities that remain available in this place. The town was founded to host a metal industry. In the early 2000s, the enterprises went bankrupt, after centuries of ongoing work. Other major plants located in the city have been on hold as well. While Oleg was telling the children in the audience about how important it is to be needed as a crew member while sailing the cold Baltic

Sea, I could not stop thinking about the rampant unemployment rates in the region, its exceptional criminality rates, its lack of functional infrastructure, the town’s now dormant, corroding

161 extraction machines that would never run again, for crucial metallic components had been stolen and sold for metal long ago. And the advice of the driver and his companion reverberated in my head: Leave whenever you can. What does the fantasy of inclusion do here?

This school was not accessible through public transportation and was located in a place where I felt desolation in the air. There was no good drinking water in the building. Its teachers had been in a lawsuit against the school to receive their salaries. The funding for the school bus that would collect children to bring them to and from the school had been cut. Despite the lawsuit, the teachers still showed up at work and continued to teach classes, give homework and stay long hours to help their students. And yet, some children didn’t know what a smartphone was; a handful of old computers that were at the school didn’t have voiceover software. In other words, they were inaccessible to blind users. This school was one of the few employers in a town with excessive rates of unemployment and crime. An attempted initiative to move the school to the closest city did not receive popular support—moving this school closer to the regional urban centers would mean that the town would lose yet another employer. Oleg called this place “remote in all senses of the word” and a “tough emotional and climate zone.”

What were we doing there by trying to ensure the portability of the phantasmagoric inclusion so carefully configured during the Congress and other events in more economically secure places? What were we doing in attempting to move these kids with the fantasy of inclusivity and enablement, by encouraging them to find ways to make themselves needed by others? It was clear that the problem these children face and will continue facing in the future is not about interpretations of inclusion or access to inclusion programs. The issues here were poverty, unemployment, and the structural neglect of the entire region. They lived in the conditions that not only did not support blind children, but also created and exacerbated impairments. This was the

162 place where slow violence and desolation precipitated in people’s bodyminds as various impairments and sicknesses.

Oleg’s talk was rife with stories of how blind persons sail across the world on a boat together with sighted people and how sighted crew members learn things from the blind sailors, how blind persons earn excellent salaries and are breadwinners in families, how blind people lead excursions and tours in museums, how they work as guides at exhibitions in the dark and how sighted people pay money to attend those exhibitions. Bright images and vivid narratives, they were designed to spark interest and leave the domain of moralizing lecturing. These stories were intended to bring lively interest in living such a life and thus becoming a person who may have their own stories, stories about their homes, places, capacities. At least that was Oleg’s conviction.

And he offered them help with that—he promised to provide support for those who would be willing to participate in White Cane’s projects (such as inclusive sailing, for example, the participation in which is heavily subsidized and may come free of any charge). The children listened to Oleg present, played with his talking phone, asked questions about what it feels like to sail, got bored from time to time only to be consumed by the spectacle again. Inclusion here worked as a simulacrum of a reality that was virtually impossible here. Nobody reached out to Oleg after we left the town (after all, he lived in a region that was three full days away by train), although he shared his contact information and invited everyone to reach out to him no matter the occasion, idea or concern they might have.

During lunch after the talk, we had a brief conversation with the deputy principal about the presentation. She found these visits helpful for the students, for they have no other role model who is blind, no other exemplar to compare themselves to. Blind adults do not come here—the school is too far, a remnant of Soviet segregationist disability policies. What the students remembered and carried with them further on, the deputy principal continued, was mostly the memory of the

163 speaker and what they felt about the speaker and the talk. They remembered if they were moved, if they liked the speaker, if there was something that sparked their interest, some idea, some suggestion, some story. Teachers liked to host a blind person who presented himself as rehabilitated and independent, who came to visit their school from far away, who was an exemplar and a blind adult who cared to speak about how important it is to establish relationships among people with and without disability, how important it is to contribute, participate, and be responsible. What can such an exemplar do in a situation of desolation? What can inclusion activate here, what processes can it launch?

One does not need to go to a remote special school in Russia’s remote regions to find the gap between the imagined world of inclusion and the lived reality of underfunded schools, financial and employment insecurity, and lack of resources to support individual and collective wellbeing—it is a common condition outside a handful of urban centers through which Russia’s oil revenue (the single most significant source of the country’s revenue) is redistributed (Etkind

2018; Morris 2016). Moving people to come up with ad hoc grassroots economic and social solutions in the face of broader socioeconomic depression is not a decidedly weak tool, on the one hand. After all, it has strong resonances with the survival strategies people carved out during the deep crisis of the 1990s (Shevchenko 2009). It may lead to the creation of alternative economies and communities of survival (see also Cadena and Blaser 2018). On the other hand, it certainly contains risks. It may also lead to the feeling of betrayed promises, insufficient resources to support the composing of makeshift forms of humanization (Höjdestrand 2009) and the privatization of responsibility (see also Trnka and Trundle 2017), which would further weaken the push for economic redistribution in terms of funding of regions and communities. The question remains what effects both phantasmagories would produce—would the phantasmagory of scandal be more effective than the phantasmagory of inclusion, given that there is hardly anyone listening to the

164 possible outrage of the scandalized disabled, on the one hand, and that there may be simply not enough resources to begin conjuring up makeshift solutions to shape and improve the environment one got to call home?

Conclusion

In this chapter, I engaged with two disability-related phantasmagoric styles through which people with disabilities in Russia have been configured and by means of which they have been pushing for changes—in their own lives and the lives of their community.

The first phantasmagory is the one of scandal, which has been composed of multiple storylines, striking visual figures, scandalous news articles. These visual and narrative devices contribute to the metonymic identification between disability and social disruption. There is almost no middle ground between the Soviet propaganda that created exceptionally able supercrips who sacrifices their bodies for socialism and collective good, on the one hand, and inhumane stories of life experienced by people with disabilities under the state care in special homes, on the other.

Other forms of representation in different ways continue to produce disability as a fundamentally othering experience, which prevents the possibility of coalition-building and relating to people with disabilities as fellow citizens. In the light of other inoperative mechanisms of social change, complaining has historically become the most efficient tool of voicing discontent about the often inhumane conditions of life in which people with disabilities find themselves. Scandal, thus, becomes one of the prevalent modes of the representation of disability in Russia. With little infrastructural change to create ways to produce impact on disability-related decision-making, the appearance of disabled voices promise actually to disrupt the social again and again, but to very little effect.

165 My interlocutors who helped organize the First World Congress for Persons with

Disabilities offered a different kind of phantasmagoric construction—of inclusion. The phantasmagory of inclusion is equally made of both fiction and nonfiction. Presenting stories of economic and social success of people with disabilities across the world, it implied that social change toward inclusion is not something far away or impossible, but instead feasible and only dependent on one’s creative ability to produce ad hoc solutions with the help of a social network.

In this rendering, disabled people appear as economic actors and their positioning within the state’s social system is downplayed. One of the main mechanisms of impact of the phantasmagory of inclusion is its ability to move and inspire people—which in itself remains a depoliticized and situational strategy dependent on the resources available to actors in the first place.

Finally, I shifted my attention to a case where both phantasmagories were challenged in their portability—the case of a remotely located special school for the blind in Russia. Without providing a decisive assessment, I closed this chapter with more reflections and open questions that would need further research, such as, what strategy, if any, would actually work for these children, in a place, where even the basic facilities, such as water, safety, and transportation, cannot be taken for granted.

166 Chapter 3 The Inclusion Complex

Introduction

This room was full of things: folded banners, bags left for storage, forgotten badges, chairs, boxes, plastic cups with cold tea. Regardless of the time of the day when I would come in, I would always find people there. NGO leaders, governmental workers, student volunteers, performers, interpreters, people I knew, and people I saw for the first time. In Russian, such rooms are called podsobka [подсобка], which stands for a space for household and domestic needs. Podsobka can be a backstage space, a small storage space, a space to leave one’s possessions before work. It is a space in-between and adjacent to the façade and the outside. In podsobkas, workers gossip and have lunch when other, more comfortable options are not available. In the Congress’s podsobka— which was not a usual small room, to be fair, but instead, a well-lit larger room that could accommodate about 20 persons—other people and I found respite from the otherwise busy moments of the Congress. During the four days of the Congress in September 2017, we all tacitly agreed to trust each other by eating in front of each other, cracking jokes, leaving valuables, coming and going. The Congress’s podsobka generated the sense of trust, or, rather, lack of worry, it gave a promise that sitting next to you having a quick break or a power nap could be anybody, an anxious young abled volunteer who had just done a faux-pas in interacting with a disabled foreigner, a manager of an accessibility firm, or a deaf performer.

I sat on one of the chairs and heard somebody chanting in the foyer, “Include yourself!”

[vkluchi sebya!] through the slightly open door. I closed my eyes and enjoyed the moment of hearing it from afar as if witnessing it without having to react to it or respond. A second later, I saw someone come in and sit down in front of me. I don’t think this person saw me. To announce my tired presence, I asked, half-jokingly, “Well, have you included yourself?” [Ну что,

167 включились?]. The person on the chair in front of me didn't get a chance to respond, as a bus driver from one of the buses that helped with the Congress’s logistics entered the room and replied,

“Zainkluzirovalsya” (which may be translated as “got so tired of including myself” but it also uses the work inkluziya at its root, instead of the Russian vkluchenie, to signify that painful familiarity with the term inkluziya as it has been circulating during the long process of organizing this big event and implementing it). “Exactly” [Tochno], the person sitting in front of me on the chair responded. This was a high rank official from the regional government. And then all three of us sat in silence as we listened to the opening of the Inclusive City festival in the foyer.

Podsobka is a good metaphor for the inclusion complex that I am describing in this chapter.

A part of the enticing spectacle performed on stage or in halls, the inclusion complex, just like this podsobka and many other podsobkas, hosts workers and materials, negotiations and respites, breaking out, nervous anticipation, concerted effort, and unexpected encounters. The spectacle in the foyer and we, resting people in the background, are one, and it will never be resolved who is the chicken and who is the egg. Are we serving the fantasy or are we shaping it? This complex emerged together with the phantasmagory I discussed in the previous chapter, and we served each other.

This feeling of shared tiredness, strange and perhaps slightly forced sense of trust, and the practice of laboring together with people I would otherwise never meet saturated my days of work for the Congress, well beyond that moment in the podsobka. These feelings and experiences, I thought, united me with them and made us into some sort of a strange collective within which we exchanged ideas and values associated with inclusion. They have become a community within which my labor would be known and recognized, in which my abilities came to fruition through being encouraged and taught, plugged into the circuits of other activities and projects.

168 This chapter develops the concept of the inclusion complex. I argue that the work of the phantasmagoric inclusion fuels the operations of a multitude of actors who manipulate and extract value from inclusion, as well as operate conversions of inclusion-related values. I trace the operations and functioning of this multitude by looking at the organization and implementation of the First World Congress for People with Disabilities. If Chapter 2 tackled the questions of the phantasmagory and aesthetics of inclusion as it was opposed to the phantasmagory of disability as scandal, this chapter deals with the questions “who participates in the circulation of this imagined ideal?” and “what forms of value do they generate and circulate?” To give a quick answer to these questions, I argue that inclusion’s promotion takes place through the work of a networked multitude which does not bridge the gap between the fantasy of inclusivity and the lived reality of it, but instead produces and maintains the infrastructures for further attempting to keep trying to bridge this gap. Different actors pursue divergent agendas under the auspices of working toward the implementation of inclusion, and through action, they generate value, which gets to be converted into capital or let circulate further. They all capitalize on inclusion differently, thus producing different values of inclusion—economic, professional, ethical, ontological, etc.—and manipulating the conversion of these values. Through sustaining the circulation and conversion of values associated with inclusion, the inclusion complex runs.

The ethnographic material of this chapter is based on my experience of working in the

Bureau of the First World Congress for Persons with Disabilities (further, the Congress). The

Congress’s scale and scope made it a good model for the inclusion complex that I am conceptualizing. The very possibility of organizing the event, providing all international participants with necessary documents in time, supplying sufficient transportation infrastructure, organizing the logistics, gaining public resonance in the region and at the federal level was predicated on functional collaborations between state actors, private businesses, volunteers and

169 pro bono professionals, multiple disability NGOs, attendees, and critics, entangled in the operations of the inclusion complex. The Congress was a project realized through the operations of the inclusion complex.

Initially, the idea to organize the First World Congress for persons with disabilities came from a German collaborator with a disability NGO in the region (Blagoe Delo) Thomas Kraus, who worked at a home for persons with severe mental disabilities in Germany and who started the movement of worldwide congresses as an initiative to create spaces and times for people with disabilities to act, interact, and speak for themselves. Contrary to the idea of having conferences and gatherings of specialists and medical professionals, the worldwide congresses initiated by

Thomas Kraus were organized for people with disabilities to represent themselves and to take space. After several congresses in Germany, the interest in having similar gatherings in different regions and nations grew and expanded to new locations. By 2017, there had been nine congresses in the European countries (Germany, Czech Republic, the Netherlands, Austria, Belgium,

Switzerland, Serbia, Russia), five congresses in the Asian countries (Thailand, Georgia, Armenia), five in the South American countries (Brazil, Argentina, Colombia). They were guided by the slogan “Living in the encounter,” designed to gather people with disabilities and provide them with a safe and supporting environment to express themselves and enjoy life outside of their home experiences.

This chapter is organized as follows. First, I review the anthropological scholarship on value conversion. Then, I discuss the different agencies involved in the operation of the inclusion complex, as exemplified by collaborations formed for the Congress. The state, private businesses, nonprofit organizations, volunteers, and researchers formed coalitions to carry out such a big project as the Congress. Finally, I conceptualize these coalitions as part of the inclusion complex, a concept connected to other forms of complexes known in social sciences.

170 Value circulation and value conversion

Anthropology has generated numerous discussions around the circulation and conversion of values. It is a known fact that through exchanging values and valuables—be they gifts, commodities, services, animals, humans, etc.—societies and communities are shaped and reproduced. As early as in 1925, French sociologist Marcel Mauss wrote about the ways in which relationships grow and wither through the exchange of valuable objects (2011 [1925]). He contended that earlier exchange systems, based on the imperative to give, receive, and reciprocate, were the economies of the gift, whereby individuals and groups sustained and developed a sense of solidarity and cooperation through exchanging valuables.

For the purposes of this chapter, I find David Graeber’s (2001) theory of value helpful. He adopts a materialist approach to value, which he sees to be based on the material application of creative action. Valuable objects serve as congealed action, applied creative energy. Thus, action becomes the source of value:

Value emerges in action; it is the process by which a person’s invisible “potency”—their capacity to act—is transformed into concrete, perceptible forms. If one gives another person food and receives a shell in return, it is not the value of the food that returns to one in the form of the shell, but rather the value of the act of giving it. The food is simply the medium. Value, then, is the way people represent the importance of their own actions to themselves—though Munn also notes that if we are not talking about something that could occur in isolation: in kula exchange, at least (and by extension, in any social form of value), it can only happen through that importance being recognized by someone else (Graeber 2001, 45).

He distinguishes between the medium of value and value. If food is the medium of value, the act of giving this food is value. For giving food to be recognized as valuable, it is imperative to have an informed audience, trained in recognition of the significance of food in this given context. Here, we see that the action of giving and the action of nurturing the social bond unite in creating value.

Graeber proposes a theory that identifies action as a shared ground for diverse kinds of values: the ethical, economic, semiotic. In pushing further, Michael Lambek (2008) argues that different kinds of values are indeed incommensurable, and he looks at the ethical and economic

171 value in particular. Not completely isomorphous or overlapping, economic and ethical values belong to different realms—one of relative value backed by a meta-value (money) or another of absolute values in themselves incommensurable among themselves. Despite this incommensurability, however, in various contexts social actors find themselves challenged to negotiate the conversion of these incommensurable values. These tensions and challenges of conversion and translation of value serve as sources of creativity and the makers of the social fabric. One strong example of the work that dealt with the productivity of the need to maintain the incommensurability of biopolitical values and ethical commitments, on the one hand, and the imperative to strike a balance between them, on the other, can be found in Tomas Matza’s (2018) work on mental health care professionals in Russia.

Geographically close to Matza’s work is Melissa Caldwell’s (2016) recent research on the development of compassion in Russia. She offers a different take on the intricate relationships between ethical and economic value in Russian contexts. It helps me conceptualize the inclusion domain in particular as a field for value circulation, as it is adjacent to and resonant with her work on compassion work in Russia. In writing about ‘Russia’s neoliberal reality, [where] need, deservingness, and affect have become opportunities for political and economic entrepreneurial investment’ (Caldwell 2016, 156), Caldwell notes the stable growth and increasing entanglement of modes of compassion work and compassion economy. She makes a helpful distinction between gifting and giving, locating the Russian economy of compassion within the domain of giving:

In practice, gifting obscures the redistributive dimension through a collective fiction that emphasizes a spontaneous generosity and de-emphasizes reciprocity. Yet even though reciprocity is never mentioned, it is always expected. By contrast, giving as it is performed in Russian compassion economies is in fact a form of investment that is deliberately and publicly intentional: it is meant to produce concrete results, not just to sustain the assistance system, but also, and more importantly, to generate revenue and even profit that can, in turn, catalyze future development. While both gifting and giving relationships entail a temporality of futurity and open- endedness, gifting is oriented to repeating cycles of prestation and receiving that position participants in never-ending cycles of obligation and indebtedness, so that gift exchanges are never closed. By contrast, giving implies a futurity of growth where returns are redirected away from the

172 initial giver and into future opportunities that will, in turn, fuel further future opportunities (Caldwell 2016, 174).

By differentiating between giving and gifting, Caldwell distinguishes between different ways to convert economic and ethical values. She brings to the readers’ attention the complexity of a particular segment of economy—the compassion economy—which functions unlike others and is characterized by an intricate entanglement of different kinds of value. In other words, Russia’s compassion economy works as a domain of circulation for social, economic, ethical, and political values. Unlike gifting, giving is more streamlined and determined; it is more straightforwardly tolerant of the tensions that emerge around the conversion of the ethical and the economic.

Anthropologists have documented ordinary conversions of value in different segments of the social field. In her ethnography of the voluntary sector in Northern Italy, Andrea Muehlebach

(2012) addressed the uncritical assumption about the separated nature of the ethical and the economic. Her research demonstrated intricate embeddedness of ethical values in market operations and neoliberal societies. Although Muehlebach does not make a claim about in/commensurability of economic and ethical values, she provides careful documentation of their tight entanglement—the increased value of unremunerated volunteer labor that enables the further operation of neoliberal market economies. Daromir Rudnyckyj (2010) adds an account of the convergence of religious, moral, national, and economic values in Indonesia. One of the ways to mediate or engage with the tensions that arise when attempting to convert Islamic values to the economic is to provide sensorially challenging and taxing experiences where the feasibility of this conversion would be confirmed. Caitrin Lynch (2012) has provided a careful account of the different kinds of fulfillments and values that manual labor at a needle factory in the US brought to aging employees. Although some considered working in such condition exploitation, for many

Vita employees, work was strongly connected to their ethical values and social needs. Her

173 ethnography demonstrates the simultaneity of multiple kinds of value coexisting and not nullifying each other.

Anthropologists of humanitarianism have scrutinized the multiple registers of value- making and good-doing. Lisa Malkki (2015) began her investigation of international humanitarian regimes by exploring the figure of the humanitarian subject, a citizen of the Global North driven by the desire to help and compelled to leave the comforts of their home, throw themselves in extreme conditions, and work in precarious conditions to provide immediate assistance in places of crisis. This figure stands at the intersection of various needs and values to address these needs.

What kind of value comes to be produced by these workers? What kind of their own needs do they fulfill in fulfilling the needs of the recipients of humanitarian aid? Malkki argues that the value of their contribution gets to be mediated by a complex constellation of political, socioeconomic, and cultural processes in both their home communities and those of the host communities. Value here is never just ethical or political; it is multifaceted. Further, Peter Redfield’s (2013) research shows how vested interests of diverse actors on the ground—different NGOs and other locally-based stakeholders—all shape the forms of intervention and values that get to be produced. Especially salient are the tensions between moral values, political and economic values, as they are negotiated on the ground.

Anthropologists have documented ways in which different socioeconomic and political systems extract value from their disabled subjects. Michele Friedner (2015) studied how corporations in India conspicuously employ deaf workers and tap into their social networks, to extract economic values, moral values, and social values. It is the ability to claim a connection between economic and moral values that Friedner identifies as a potential source of exploitation.

Matthew Kohrman (2005) traced the development of disability biobureaucracy in China, which served as a case of the convergence of political values for the state, individual economic, and

174 communal values. Finally, Cassandra Hartblay (2017) showed how conspicuously displayed accessibility measures, albeit nonfunctional and poorly executed, add value to those businesses and spaces with constructions that in the eyes of lay public and nonexperts to look like proper ramps and accessibility devices.

The complex: different actors

Elmira Naberushkina (2012, 139–40) argues that inclusion is a fundamentally multidisciplinary undertaking. Different kinds of expertise and forms of engagement have to be mobilized to ensure the materialization of inclusion. She contends that inclusion is a universal undertaking, which means that it requires the recruitment of all members of society. It is only through the networked collaboration that inclusion can be practiced at all. My fieldwork demonstrated that the attempts to bring inclusion to life indeed involved many different social actors, despite the initial assumption that inclusion could be contained within the domain of social work or disability politics. By examining the network of various participants who contributed their labor, attention, time, and resources to the Congress, I seek to uncover the process through which the inclusion complex is maintained and developed—the circulation and the conversion of value derived from practicing inclusion or being located in association with inclusion. During fieldwork, and at the Congress, in particular, I observed how actors convert the economic value of inclusion into ethical value, then to professional, and political. Saturated with different kinds of value, the inclusion complex constitutes an environment that nurtures subjectivities and enriches (and impoverishes) lives. In what follows, I review various members of the inclusion complex and their value-driven motifs and incentives to stay involved in its operations.

The state

As disability is a status recognized and authorized by the state that dramatically affects the person’s place in the system of redistribution, people with disabilities are often perceived in Russia

175 as state subjects par excellence (see also Stone 1983). They receive a monthly pension from the state; the state subsidizes some of the assistive technology they use; federal legislation protects their rights to employment, education, and access to public resources, spaces, and information.

Additionally, the state subsidizes special schools for children with disabilities, institutions, and homes for some people with disabilities, utility bills, as well as necessary rehabilitation procedures.

At first glance, the state provides the scaffolding that on paper looks sufficient to support people with disabilities in accessing and exercising their citizenship to an extent similar to that of their nondisabled fellow citizens. And yet, prevailing ableism, internalized and external, among employers, educators, hospitality workers, and employees in other institutions, complex bureaucracy, inaccessibility of urban infrastructures (starting from residential buildings to other buildings and spaces of public and private use), and low expectations of people with disabilities to be actively engaged in social life dramatically affect the quality of life of citizens with disabilities in Russia.

Despite the presence and active participation of the state in the organization of the

Congress—and in the deployment of the inclusion complex in general—I seek to demonstrate that the state’s involvement was not controlling but partial, balanced, and contested by other stakeholders. Initially, the Congress was not a governmental initiative, and neither the regional nor the federal government expressed strong support or critique of it. Through gradual expansion over time and the networking of the organizers, it reached various state agencies and recruited some state-affiliated agents. In addition to the Sverdlovsk region’s government, which had the closest and most elaborate engagement with the organization of the Congress, other regional governments also participated in the event through the provision of subsidies for some delegates—which covered these participants’ participation fees and transportation. To my knowledge, no regulation or control was exercised over the form of their participation or the content of their interaction.

176 Although the head of the Congress’s project office was the advisor to the minister of social policy of the Sverdlovsk region, because of the scale and complexity of the event, as well as the small fleet of governmental presence altogether, the state agenda did not dominate and often did not surface to steer the course of events.

The state presence at the Congress was anything but unified and univocal, which reflected anthropological critique of the very figure of the state as a stable, unified actor (Abrams 1988;

Fassin 2015; Gupta 2012). The most consistent and long-term involvement of the state in the shaping of the Congress took place through the work of a member of the Congress’s project office, who also served as the advisor to the regional minister of social policy. His expertise in the bureaucratic mazes of the regional governmental apparatus, as well as his connections throughout the region, helped gather partners and contractors. A member of the project office, he attended numerous meetings, participated in the design and brainstorming sessions, and managed the timely advancement in the event organization. His presence and participation—which was sought out for by other organizers who initially had an idea to hold the First World Congress in Yekaterinburg— ensured the organizers’ ability to travel through shortcuts when an urgent need came up or they struggled to find willing collaborators and partners by themselves. Few, if any, understood the exact mechanics through which this magic of the state (Das 2004) worked. Yet, it was obscure, compelling, powerful, and, at the same time, creating the position of vulnerability for those involved in this context. In other words, the ability to procure additional resources (buses, agreements with local service providers, social taxi services, spaces for training and events) was predicated on the personality and the specific relationship between a concrete actor (the organizers) and the state (represented by the governmental representative). These relationships—between locally-based nonprofits and the regional government—were preexistent; they had been cultivated over a substantial period of time well before the Congress. The regional government also provided

177 subsidies to support the Congress’s PR and information dissemination campaign. Although the process of applying, receiving the grants, submitting reports, and having these reports accepted was heavily bureaucratized and complicated, there was little regulation of the content of what was done or how it was done.

The regional government opened its doors—quite literally—for the organizers to carry out volunteer training sessions that needed to take place at an accessible location. The accessibility of this particular ministry was ensured by its relatively central location in the city and its perceived status of an important destination point for people with disabilities (for a critical account on accessibility and space exclusion see Hartblay 2017; 2019a). Throughout the spring of 2017, several groups of volunteers went through special training on how to communicate and interact with people with disabilities trained by four or five instructors with different disabilities, in the building of the regional ministry of social policy. The presentation hall, hallways, elevators, and staircases of the Ministry hosted unusual users—young students or other (mostly) young folks who expressed interest in volunteering their time, labor, and effort to the Congress taking classes under the guidance of a blind instructor, an instructor using a wheelchair, a deaf or hard of hearing instructor and two persons with mental disabilities, who worked as a trio with a worker from a nonprofit for persons with mental disabilities. Although the training specialists and the students had no relation to the ministry, by offering the space for training—and thus lifting the need to rent a training location—the ministry workers, sometimes unintentionally so, were made to participate in these events. In general, such a gesture of hospitality was used to demonstrate that the state cared about the local citizens with disabilities, an act of selective inclusion for sure (Carroll 2019).

The regional government, in turn, profited from such collaborations. By opening their doors to training teams, they had a chance to highlight their building accessibility and the need to have their building accessible, which had been a significant point of critique of contemporary

178 accessibility politics (Hartblay 2017). Further, these training sessions themselves presented substantial resources for valuable associations. A rare project that employed people with disabilities as experts (Friedner and Osborne 2013) and pedagogues to nondisabled students (as opposed to using them as placeholders or menial laborers), these training sessions offered added value to the ministry by presenting it as an actor interested in quality and in-depth inclusion, as opposed to surface-level for-display-only inclusion. The projects funded through the grants provided by the regional ministry found its way in their report documents that present the work of the ministry as a smooth distribution of public funds toward the best projects, evaluated by specialists. Through embedding himself deeply in the organizational affairs of the Congress, the advisor to the minister of social policy of the Sverdlovsk region added political value to the ministry, for acting with responsibility and interest, for allocating resources required for the success of this innovative world-class level initiative. Finally, regular meetings and brainstorming sessions exposed the advisor to the environment of ongoing reflection and thinking about inclusion and about what constitutes a successful inclusive form. The epistemic and ontological findings discovered or generated during many sessions of the Congress’s office and meetings of the international steering committee helped push forward the discursive agility and sophistication of the government representative.

The Congress received resonance at multiple levels and reached unexpected audiences, such as the president of the Russian Federation Vladimir Putin, who a few hours before the opening ceremony on September 7, 2017, issued a greeting telegram34 to the attendees of the Congress:

Dear friends! I welcome you to Yekaterinburg on the occasion of the opening of the I World Congress of People with Disabilities. I consider your forum, devoted to the most important issues of improving the quality of life of people with disabilities, a major, socially significant event, a serious contribution to solving a wide range of tasks related to ensuring the conditions for professional, creative self-realization of people with health problems, and the formation of their

34 http://kremlin.ru/events/president/letters/55550

179 active life position. And of course, the congress venue will allow you to exchange experiences, discuss promising ideas, get acquainted with best practices and inclusive technologies.

This telegram was publicly read by the then Governor of the Sverdlovsk region Yevgeniy

Vladimirovich Kuyvashev. The head of the regional government served as a spokesperson at the opening ceremony of the Congress, voicing both regional and federal authorization and appreciation of this event, substantiating the metaphysical presence of an allegedly existent orderly entity (T. Mitchell 2006), claiming its sovereignty through verbally granting support (Carroll 2019;

Petryna 2002). A representative of the Commission for People with Disabilities under the President of the Russian Federation flew in to attend the Congress and upon the completion of the event. She delivered a report to the federal government about the Congress upon its completion.

With the event’s scale (international) and successful implementation, with its unique technology of organization (mixed steering committee of people with and without disabilities) and its constructive agenda (offering individuals solutions but not systemic critique), an association with the Congress in itself allowed both the regional and federal governments to claim their prominently discernible participation in cutting-edge inclusion-themed events and initiatives (for state practices of co-optation in Japan see Nakamura 2002; 2006).

Through such engagements and momentary appearances, the state marked its presence at the Congress. Yet these engagements were too patchy, fragmented, and far from being thoroughly coordinated to sustain an idea that the state is a unified actor that censored or steered the formation of the Congress (for another contestation of the alleged unrestrained capacity of the Russia state see Rogers 2015). Multiple pop-up meetings between different groups to manage pressing tasks, miscommunicated decisions or decisions communicated to other organizers with a substantial delay, distributed responsibility for various segments of work, the heavy reliance of volunteered and unremunerated labor of a large group of partners and collaborators all made the organization

180 of the Congress only a loosely regulated activity. In this, the position of a leader was fluctuating too—for it relied heavily on the moment and the ability of an individual to take over a segment of work and push forward their own idea, all in addition to their other daily jobs. Thus, it makes little sense to conceptualize state and non-state actors through the dichotomies of complicity/antagonism or censorship/endorsement or control/resistance (Hemment 2015)— because this event, driven by activists and NPO workers, enrolling activists, parents, hospitality workers, librarians, international experts, local artists, state actors, developed with the symbiotic participation of all. The underfunded nature of the Congress underlay the fundamental impossibility of the total control of the used resources and produced content.

Bound together by circulating material and nonmaterial resources, marks of prestige and respectability, points of epistemic and ethical formation and discovery, governmental representatives and nongovernmental actors who work in the sector of socially oriented NPOs need one another. As was the case with the Congress, and as I observed on other occasions, the obscure nature of bureaucratic action, the interest of government workers in learning about the latest trends and technologies in inclusion and disability domains, their perceived exposure to international observation (see also Kohrman 2005) made them need the Congress, guests and participants, made them need to participate. They contributed economic values, political values, professional opportunities, and brought in their social network, to receive the Congress’s gifts of symbolic prestige, affiliation with a socially approved and aesthetically polished social initiative, and the ability to further dislodge the state’s welfare onto the shoulders of local nonprofits and activists.

They capitalized on the idea of the sought-after independence of people with disabilities, and the underlying idea of including people with disabilities and tapping into the resources they have to offer to society—be those labor, moral, intellectual, aesthetic, or other resources. They indebted the Congress, and the Congress indebted them.

181 Private business

In Russia, the project of inclusion has attracted the attention of corporate actors, although in ways distinct from those described in the anthropological and critical literature. Large corporations in India capitalize on conspicuous employment of disabled workers (Friedner 2014;

2015; 2017) and on displaying contained performances of disabled persons to produce feel-good diversity of the Indian nation. Caitrin Lynch’s (2012) research, on the other hand, shows how the employment of senior workers, conventionally and uncritically deemed unproductive, at an industrial factory in the US offers a rare opportunity for workers to create a new social world against the backdrop of otherwise eroding quality of social connection. In the situation, when neoliberal rhetoric only publicizes and supports the displayed inclusion of those bodies that have the potential to fit into the existing ableist system with minimal adjustments—what Mitchell and

Snyder (2015) call the able disabled—people with disabilities in the 21st century are made particularly prone to exploitation, both labor and representation exploitation. Jasbir Puar (2017) argues that behind the liberating rhetoric of inclusion, which easily travels to a plurality of contexts, there is the stubborn force of work and war that sometimes insidiously and at other times openly produce debilitated populations en masse. Yet thanks to their hegemonic power, this production of debility passes unrecognized and under-criticized.

During my fieldwork, I observed that my blind interlocutors collaborated with both larger companies who sponsored social projects and smaller companies who partnered with my interlocutors to figure out the forms of inclusion and ways to generate profit from it. Those motivated to research how inclusion can benefit their businesses showed remarkable excitement— they framed inclusion as an “innovation” that has the potential to revolutionize the ways we work and live. Inspired by materials they had found on the Internet—such as, for example, a 2017 article in Harvard Business Review that presented neurodiversity as a competitive advantage (R. D.

182 Austin and Pisano 2017)—corporate managers would brainstorm various ways in which to engage blind persons in their business, to the benefit of the company and the blind worker. Several collaborations that resulted from trying out the ideas that emerged during such brainstorming sessions were presented at the Congress as workshops. Below I describe two examples of corporate partners that White Cane worked closely with to demonstrate the diverse strategies to implicate inclusion into their organizational life. None of the examples I review was interested in deriving any value from presenting themselves as charity employers for disabled workers, none of them is interested in cultivating ongoing dependencies on these programs among the populations they engage (Rajak 2011). Instead, they wanted to put inclusion to work; they wanted to extend its use for the market, to make it part of free market, and train their blind partners to become well versed in market performances (see also E. C. Dunn 2004; Elyachar 2005).

The coaching company provided training in life-coaching to middle-class and upper- middle-class individuals in Yekaterinburg. Among their clients one could find private business owners, corporate executives and lower-rank managers, individual entrepreneurs, and individuals who have extra resources to search for their passions, think in terms of lifestyles, and improve their management techniques. The price tag of their courses and programs ensured that the average pool of their students came from a socioeconomically privileged background. Before this company’s collaboration with White Cane, they had not had any disabled students, staff, or partners.

For them, inclusion was a commodity, a tool that they used and sold to others to improve the productivity of their education and training services. They used inclusive classrooms themselves—first through offering subsidized training to blind students and then through bringing a blind alum of the program to work or intern as an assistant instructor. They were convinced that student learning overall had improved significantly since they had started having at least one blind student per group, that is, “made their programs inclusive.” They associated the improved

183 performance markers with intensified group relations, enhanced creative work, and their capacity to care for the needs of others, thus shifting the focus of their attention from themselves to others.

The company’s director shared with me:

No other student has ever challenged our group dynamic so much. To encounter a blind peer for them [their regular nondisabled students] in their group, among them, is a shock. But then, gradually, they learn how to interact, how to think of them, how to care for others, how to not to make a scene out of this, how to laugh, and make jokes together. We provide the most supportive environment possible to deal with this shock and transform the shock and themselves into something else.

If initially, their logic for including blind students was more the one of charity (to help the imagined suffering blind subject), once they started noticing the effect of teaching a mixed classroom, they provided substantial subsidies for blind students to join their group. They saw this as a win-win situation: blind students establish contacts with people who often are in the position of power, they cultivate necessary social skills to communicate and interact with the sighted, they network and receive almost free education in life-coaching which in the future may provide employment opportunities; sighted students expand their capacity to care for others, learn to use multiple ways to manage information, establish better communication among all members of the group, and thus develop a higher level of trust within groups—an essential condition for the sessions.

In addition to including blind students in their courses, the company sold such services as brainstorming sessions, team building training, business consultancy sessions, all in the dark, under the guidance of a blind person. They presented inclusion as a win-win practice for every party involved: for the blind instructor (for they received payment for their work and gained professional experience and connections), for the company (for they received payment from clients

[in contexts other than those of the Congress] and expanded their client base), and for the clients

(for they developed their sensory abilities, polished their communication and other soft skills, and experienced a new embodied condition).

184 At the Congress, a brainstorming session in the dark was presented as a workshop for any participant interested in learning about such an inclusive practice and curious about exploring their dormant abilities. At the session, sighted visitors were invited to spend an hour in a completely dark environment, brainstorming a solution to a given problem. The organizers of the session— my blind interlocutors together with the employees of the company—designed this practice with an expectation that a sensorially new environment would stimulate productive changes in the ways sighted participants think, reason, and engage with the world (on the sensorial and affective plane of sensibility see Hirschkind 2006; Stoler 2007). First and foremost, it mattered that the sighted participants liked the experience and were able to interpret this communication with a blind guide through terms other than charity. Through this practice, the organizers tried to challenge the stubbornly resistant overdetermined figure of the suffering blind and reinterpret it in terms of professionalism, pedagogy, and skill acquisition.

It warrants noticing that this employment of inclusion in such neoliberal projects as business and life coaching is profoundly classed. Through offering inclusion as an educational tool only to clients who can allocate substantial sums for their “personal development” [lichnostnyi rost] (on similar psychological and emotional training programs see Matza 2018), the company intentionally packaged inclusion as a specially curated and exclusive product for those nondisabled clients who would be loosely labeled as upper-middle class. At the same time, the company did not impose substantial barriers in the recruitment process for those blind individuals who were interested in taking life-coaching training in the first place. Two of my blind friends who went through the program commented to me that meeting a business executive and casually conversing with them at the institute was an exceptional experience for them; “we speak so differently,” one added. Although graduating from this program did not secure a job for blind students and did not immediately facilitate their upward mobility, it did provide them with a broader network and a

185 clear feeling that the difference in class positions and employment opportunities sedimented in their voices, speech patterns, conversation topics, and everyday concerns. The portability of these bodily and speech orientations outside of that particular classroom (see also Matza 2018) was called into question by these blind students’ families and friends.

Another example of a company—now a much larger one—is an example of a large corporation that sponsored some of White Cane’s projects, including the Congress. An energy company, X was interested in having an image of a modern company that supported innovation both in its services and the projects it provided support to. Hence, the financial support that they offered to White Cane was not one that could be framed as charity support of a disability organization. Instead, their funds sponsored an international humanitarian mission in the framework of which an inclusive crew would sail in different seas on a catamaran and organize city festivals and workshops in various towns and cities on their way. In a few cities, they would hold regattas, attracting a wide range of interested participants, creating mixed teams, and giving participants opportunities to meet new people, interact with new people, and learn how to manage a sailing boat. With sailing being a type of activity usually accessible to the upper class, an opportunity to try sailing for free always attracted people regardless of their disability status. Such a project—where people with disabilities got to be associated with an exceptionally prestigious sport—created new associations with disability, too. Disabled and nondisabled visitors alike treated sailors with disabilities as part of their exciting sailing experience altogether, which challenged the separation between disability and prestigious forms of culture and sociality.

Participation in this project for people with disabilities was free. People without disabilities, interested in joining the crew for a few days, were encouraged to cover a part of their expenses— a part that would be feasible for them. The rest was provided by the project.

186 This liminal space (Turner 1969) created by the way sailing is done—offshore, in the contained space of a boat, implying the use of special skills—created plenty of opportunities to explore what effects communal learning and life among a mixed crowd of people could be, what people with and without disabilities could do together, and how to challenge the stationary discriminatory stereotypes associated with disability in Russia and beyond. This liminal space worked as a transition and formative period for many blind participants I have talked to—they shared with me that after spending time with the crew on the boat, they discovered something new about their place in a community—mainly, that they at all had a place in the community.

Their association with the Congress and the special title that the crew members bore—the

Ambassadors of the Congress—added value and seriousness to the already extraordinary pastime in which the crew members engaged. Some crew members were skeptical about this status— instead, they cracked jokes about this overly grandiose title and never identified with it publicly.

Others used it sparingly, especially in the moments when collective documents, images, and presentations were made to support the crew’s need to deliver a quality presentation of the

Congress as a mass event. A few people among this group, however, believed in the generativity of the association with the Congress. Finally, some proudly adopted the label and reaped all the benefits that they could of having such an official name—as ambassadors of the Congress, they made connections with other disability organizations in the towns they passed by, they introduced themselves to city administrations and discussed opportunities for organizing a delegation to the

Congress, they changed their demeanor, comportment, language choices, and outfits to represent such a “great cause.”

Although representatives of X did not attend the Congress or delegate anyone to report about the Congress, they capitalized on the Congress’s public image and on the work that the crew did to engage as many people as possible and spread the word about the Congress. The crew was

187 trying to recruit new participants in the countries they visited, which automatically expanded the reach of publicity for X as well. X’s brand, readily associated with the brand of the Congress gained appreciation among the audiences that otherwise may not have liked its presence (the company has been critiqued for its environmental impact).

And still, many businesses resisted the idea that their capitalization on inclusion is possible or desirable. Few—if any—business partners who collaborated with White Cane did so out of the desire to change the politics of resource distribution or to create the conditions of equity. Few companies were interested in providing more education and employment opportunities to those people who have been fundamentally disadvantaged by the system in the first place. Instead, their interest lay in the engagement of those exceptional people with disabilities—able disabled (D. T.

Mitchell and Snyder 2015)—who could to occupy the space of disability and the space of ability at the same time.

And yet, it is essential to acknowledge that employment in contemporary Russia serves as a primary source of financial security, social connection, status, and symbolic capital. A site where the employer and the employee walk the thin line between exploitation and flourishing, always falling somewhere in between (Lynch 2012). For decades, people with disabilities identified employment as the most critical arena of social policy for them. If previously sheltered workshops for blind workers offered competitive salaries and access to necessary infrastructures such as housing, community, and transport, today the bankrupt system of these workshops offers straightforwardly exploitative conditions where the labor of blind workers becomes dramatically devalued. This complicates the critique of productivity and the feminist calls for acknowledging dependence as a fundamental human condition (Funk 2004).

188 Nonprofit organizations

In February 2017, six months prior to the Congress, WHITE CANE gathered interested

NPOs for a meeting, to figure out ways in which they could join the preparation for the Congress.

When opening the meeting, Ivan said:

We are trying to prepare for the Congress inclusively, that is, with the participation of people with disabilities. The Congress is not so much for people with disabilities only, instead, it is organized with the participation of disabled people, where people with disabilities demonstrate their activity, positivity, seek new usefulness in society, and so on. … Because the Congress is inclusive, we are trying to include representatives of the broadest possible range of social groups, institutions, organizations in this event to learn how to collectively create products that will be useful to others.

The meeting attracted a conventional range of NPOs—those who, in one way or another, worked with people with disabilities: an organization that served children and adolescents with autism, a hospital for veterans, a university-based organization of volunteers, an NPO that provided legal and therapeutic support to children with mental disabilities, another disability NPO, and a few freelancers and disability activists in town, who were thinking of registering an organization to give the projects they had been working on a more robust future. Attracted by the prospect of joining such a significant international disability-focused event, they came to the meeting seeking more clarity and guidance about the specific forms of contributions they could potentially make.

At this meeting someone voiced a question to the group: why would you join? What drives your interest? The person who posed this question did so with a distinct feeling of exasperation: besides earning those common gains of increased connections, experience, and lines in their resumes through spending their labor, time, and effort, why do it at all? Why work overtime and for free, for what? Who needs it? [Komu eto nuzhno?] Who needs inclusion? There was silence among the attendees of the meeting. This series of questions was asked mid-way through the meeting. It sounded like a moment of problematization of the very terms which the attendees took for granted. Not once before this question anyone doubted the value of the Congress and the attendees’ comments sounded as if they fully supported the idea of having a large international

189 gathering for persons with disabilities. The exceptionality, fragility, and alterity of disability had passed uncritically accepted.

Two moments are of particular interest for me here in this moment of self-reflexivity and term interrogation. First, the posed questions themselves. Seriously, why? Why work overtime?

Why go to the trouble of coordinating such a significant number of participants with such an understaffed office? Why straining the existing resources and investing one’s own? What is the experienced and expected impact of this large event at the local level, at the level of the region, country, other countries, the world? Why didn’t these people just prefer to stay with their families, pursue a hobby, or stay at the comfort of their homes? If many of these NPO workers who attended this meeting indeed dropped out or rather, did not push entirely through with their ideas, some stayed, volunteering their time, expertise, skills, and patience to make this Congress open its doors on September 7, 2017.

Second, to these questions, the audience’s responded with silence. Perhaps they felt that these were rhetorical questions. Or else, maybe some people did not have a good answer or did not want to share their opinions in that audience. Or perhaps they had no interest in interrogating the conceptual and axiological basis of their work, pressured by the everyday problems that chase them in their day-to-day work. What forces had left them unprepared or unwilling to answer these questions? What paths have led them to find it challenging or useless to question the very terms and values by which they subscribe and which drive their everyday labors? And yet, among White

Cane members with whom I had been working at the time, these questions were anything but rhetorical. “Why do we need people with disabilities?” “How do we know that something is inclusive?” “What are the everyday material manifestations of inclusivity?” “How is inclusion better than exclusion?” circulated from one meeting to another, before and after the Congress.

190 I did not have a chance to discuss these questions with many of the attendees. Only one person who had attended that meeting from the first-time NPOs shared their reflections regarding the raised issues. Below I’m adding a transcript of this short but pithy conversation.

- What appeals to you in this Congress? - Previously, [in Yekaterinburg,] we had completely different events of a similar scale--you know, Innoprom [a sizeable industrial exhibition], all kinds of technical shows, theater events, music competitions. No one has ever done anything like this with people with disabilities. They have never had a spotlight. And now with this, it turns out, they are needed too, they are also worth all these efforts. - Remember, at the meeting, someone asked a question about why this Congress should be held. So, what do you think, why? - It was a strange moment, I’m telling you. What does it mean, why? Why--for whom [does it matter]? For the city? The city needs to see its residents with disabilities. For us, NPO workers? To find out how all this is generally done. - What is “all this”? - All this is everything good about disability, inclusion even. Everything works like this in Russia - in the West, things take time to form and mature for years, but here, somebody decides something, and we all have to do it tomorrow. We have not heard of any inclusion in our entire life, and now here we are. And the idea is certainly good, but I don’t understand how it is possible for us to change things that they become both inclusive and feasible. So hopefully, I’ll learn at the Congress. - And in your understanding, what is inclusion? - When people with disabilities have the same opportunities as people without disabilities. - Well, people without disabilities are very different. Who are you comparing with? - Well, yes, I am comparing it to a regular person. Because now it is a nightmare. Well, [nondisabled] people here are unprepared to see people with disabilities, help them, treat them as equals. They don’t understand that people with disabilities are also needed. When they start understanding it and acting accordingly, this is inclusion for me. But how we get there, to this inclusion—that I can’t imagine at all.

Lena works at an NPO that provides support to people with different kinds of disabilities. Although we did not get to discuss the problematization of inclusion in great detail, she expressed her thoughts about the potential impact of the Congress. Her first intervention was that the Congress would make people with disabilities appear needed [nuzhnye]. For many reasons, it is not easy to find a visibly disabled person walking down the same streets, going to the same concerts, taking the same classes at the university. Sharing spaces and sharing activities, in her logic, establishes a better connection and a better understanding of the potentiality of such connections. Because of the decades of segregationist politics, people with visible disabilities have been rendered belonging elsewhere, unimportant, unneeded [nenuzhnye]. Lena identifies the Congress’s ability to

191 demonstrate that people with disabilities are needed as its primary valued impact. Moreover, Lena insists that it is through cultivating an understanding among nondisabled people that people with disabilities are needed—by society, their families, friends, communities—that inclusion comes to its materialization in Russia. In other words, both disabled and nondisabled people have to change their disposition toward disability, in order to develop an ability to function in inclusive settings.

Although she speaks of inclusion as a foreign construct, the idea that inclusion has come from the

West to Russia in the form of a governmental decision to practice inclusion, she also appreciates it and tries to identify the ways to domesticate this practice effectively.

Organizers who worked in the organizing committee were predominantly NPO workers, who didn’t receive remuneration for this work. Some conceptualized the Congress as aligning with their life mission, which served as a justification for the long hours, unpaid travels, and uncompensated work they did as part of the preparation. Others, in turn, took pride in working those uncompensated hours, and through that, conceptualized it as some form of sacrifice, a creation of ethical and social value (see also Lambek 2008). Work at a disability NPO was rarely sustainable long-term, unless the employee had an independent source of income and their family members did not mind the long work hours and exhaustion that was an integral part of such work.

When hiring new personnel, NPO employers advertised the holistic nature of labor which meant that NPO employees were exposed to many different kinds of labor—grant writing, event planning, design, advertisement, interpretation, translation, copywriting, logistics, research, communications, registration, bookkeeping, hosting events, teaching classes, leading workshops, guiding people with disabilities who needed such services, personnel and volunteer recruitment, publicity work, report production, and so on. NPO jobs were indeed well-rounded jobs in terms of offering their employees plenty of opportunities to develop new skills, learn about a new segment

192 of knowledge. Yet they were also poorly paid jobs that placed such workers low in the socioeconomic hierarchy. Due to the small number of employees that an NPO typically can afford, these poorly remunerated jobs, however rich in experience jobs also meant overwhelming amount of work and an involvement in a community of people and organizations who shared resources, knowledge, and favors amongst themselves.

For those NPO workers involved in the organization of the Congress, the tasks that pertained to the planning of the Congress came in addition to their other ongoing projects and jobs.

Those individuals whose entire income did not come from contingent labor (realized in the form of working on funded projects) used the rhetoric that the work for the Congress was part of their job responsibilities anyway—because they were capitalizing on it in indirect ways: through gaining experience of organizing a large-scale event, through adding lines in their resume and the record of their NPO, through growing their social network and community, through gaining trust from the regional and federal authorities in executing such large-scale events with rigor and responsibility. Because their work was always already relying on an economy of favors and shared resources, these noneconomic gains enabled many to obtain a steadier place in the dense network.

Volunteers

The regional medical college was a major and reliable partner that would always provide volunteers for events and activities of White Cane. A recipient of funding from the regional government, this college housed a program in medical massage where numerous blind students received their vocational training. Over the years, White Cane developed tight relationships with the administration of the college—through White Cane, the college connected to blind adults and participated in municipal, regional, and international programs; through the medical college, White

Cane secured volunteers for its projects. Future nurses, obstetricians, medical opticians, medical technologists, medical lab technicians, paramedics, pharmacists, dental technicians, medical

193 massage nurses, social work specialists—blind and sighted—would serve as volunteers to guide groups and individuals around, populate marches on the Day of the white cane, help out with inclusive sailing races, lead workshops, and participate in inclusive games. Sometimes they would send up to a hundred people; on other occasions, it would be less, depending on how many people were needed. In return, people related to White Cane would also be on call for the administration of the college—they would present during conferences, organize workshops for the students, provide connections for future employment.

Both blind and sighted students volunteered at the medical college. This was often done in an unofficially obligatory fashion [добровольно-принудительно]35. De facto, it entailed regular encounters between sighted students and blind people, which in itself provided rare opportunities for interaction and communication among people of different abilities. Aged around 17-18 years old, students rarely expressed any interest in conceptualizing inclusion. Their interests lay somewhere in the broad spectrum between fulfilling college requirements, meeting new people, hanging out with their friends, attending an exciting event, or traveling. Often, volunteers were given tasks that involved direct and extended communication with people with disabilities.

Usually, it would be with blind persons, but at times some volunteers enjoyed the opportunity to hang out with wheelchair users or people with mental disabilities (with the help of a nondisabled worker of an NPO where they worked).

During a regatta in June 2017 in Yekaterinburg, a promotional event for the forthcoming

Congress, I asked a group of four volunteers from the medical college about what brought them to this event. One said that he had never participated in a sailing race, so out of sheer curiosity, he showed up on that day and was resolute in keeping coming for the next similar event. He found

35 The literal translation of this term is voluntary-compulsory. It means that these are the activities that are voluntary on paper but that are required unofficially.

194 the setting interesting, for it offered an unprecedented context where everyone had an opportunity to compete in sailing a small boat, with the help of a local sailing club for teenagers. Another person told me that she was told to come by her student group supervisor. The supervisor, in turn, received a request for a group of students to be sent to this volunteering job from one of the college’s administrators. He did not want to spoil the relationship, so he had to fulfill the request.

Yet gathering a group of people was not easy at the time—it was the exam period, and fewer people agreed to give up their study time to go and participate in this regatta as a volunteer. As a college-level student organizer, this student sought to build his resume and to create a good image of a leader who, in the future, may use a recommendation from the administration. Another volunteer, a blind student, shared that she showed up to hang out with her friends—she appreciated opportunities to have something to do with her friends, especially if it was something free of charge. The organizers valued her participation because the active involvement of blind volunteers challenged the stereotype that blind people are incapable of providing any services that a sighted person may need.

Another major partner who supplied volunteers was a rehabilitation center for people with drug and alcohol addiction. In general, the center’s patrons regularly participated in White Cane’s activities and events, among which were various workshops (School of Masters of Inclusion), urban and environmental cleaning activities, the Congress, city festivals, and round tables in the dark. Volunteering for White Cane was an available option presented to those who have completed the so-called medical stage of rehabilitation and was then entering the so-called social rehabilitation stage. During the social rehabilitation stage, patrons were expected to cultivate new social skills and connections that would enable them to build a life away from their acquired habit to abuse drugs or alcohol. The social rehabilitation stage was designed to inculcate new values and

195 formulate new goals commensurate with the scenarios of life that were less self-destructive and unproductive. The productivity I talk about here is not the one that, by necessity, identifies the political and the economic self, as the US capitalist system was described by Hartblay (2014).

Instead, their political self was more closely associated with their social self, with their ability to cultivate a community where they would be needed, in one way or another. For some, starting a family was such a solution. For others, volunteering for inclusive projects worked as such a solution. Yet others tried to find themselves in their professional field. The cost of not finding such a solution, such a community within which one would be needed, was often high and materialized as multiple relapses.

The majority of the volunteers from the center were young adult men, with a few exceptions of a handful of young women. For many, White Cane’s inclusive programs offered the first and only opportunities to meet people with disabilities, individually and en masse. Some admitted that they had never met any individuals with disabilities, or rather they were not aware if any such meeting had occurred. Those with whom I managed to build trusting relationships shared that working together with blind people (the majority with whom they interacted were blind) was initially a shock to them, some had a visceral reaction provoked by the disgust they experienced at the beginning. They struggled with visible markers of blindness, differences in comportment, facial expressions, mobility patterns. Conditioned by years and years of training by the ableist social environment that stigmatizes bodies and minds that do not fall within the conventional limits, they were challenged to find a valued sense of belonging and community with the help of people they had already disqualified as equal social members.

Some of the volunteers kept coming after the completion of their social rehabilitation stage.

Released from the center, trying to devise a strategy to rebuild a valued world for themselves, those who returned to White Cane’s events found an empowering community and resources for personal

196 growth and development. I kept hearing a refrain about feeling needed here, feeling like the work they did has at least some meaning.

Researchers

The Congress attracted a range of researchers, whose academic interests lay in the domain of social work, disability education and inclusion. Locally based researchers observed workshops led by participants with and without disabilities, as primary sites in which people with disabilities could share their knowledge and skills with the broader community.

Although I did not have a chance to directly observe many different workshops or observe every panel and event of the Congress (because of my involvement in the planning committee and the Bureau of the Congress), I count myself in as part of the body of researchers and observers present at the Congress. The presence of locally- and internationally-based scholars interested in the event added credibility and authority to it—it added the capital of scientific and academic inquiry to the event. Several months after the Congress, at an academic conference, some of the researchers presented their analyses that inscribed the Congress into the local and federal histories of inclusion.

The inclusion complex

I conceptualize this conglomerate of heterogeneous actors as a complex—in a way similar to the military-industrial complex, medical-industrial complex, prison-industrial complex, and nonprofit-industrial complex—for several reasons: (1) the hybrid nature of this complex (where various special interests merge); (2) increased access of private businesses to matters of state governance (hence, a link to neoliberalism); (3) risk of the uncontrolled expansion of the influence of corporations; (4) unchecked expansion of the complex, driven by the corporate aspiration to increase revenue. Below I provide a brief overview of the four complexes I mentioned to find

197 similarities and idiosyncratic features in each other. This work will allow for a deeper and more nuanced understanding of the concept of the complex.

Military-industrial complex

The first of the ‘complexes’—military-industrial complex—was articulated by Dwight

Eisenhower during his 1961 farewell address to the nation. He warned the nation to

guard against the acquisition of unwarranted influence, whether sought or unsought, by the militaryindustrial [sic] complex. The potential for the disastrous rise of misplaced power exists and will persist. We must never let the weight of this combination endanger our liberties or democratic processes36.

Eisenhower noted that the emergence of “an immense military establishment and a large arms industry” had been unprecedented and was exerting significant pressures on scholarly research and public policy. Eisenhower called for special attention and effort to be paid to maintaining the balance among the industries in order to preserve democracy and individual liberty protected from the infringements of the military-industrial complex. He stated that disarmament is “a continuing imperative” and called for the work toward the creation of a “proud confederation of mutual trust and respect.” Eisenhower warned American citizens of the potential negative consequences of letting the military-industrial complex develop its powers without external control. He saw the uncontrolled and unmonitored alliance between private businesses and governmental agencies as risky and dangerous, potentially leading to the broader militarization of society.

This conceptualization relies on the assumed dichotomy between state government and businesses. To worry about the blurred boundary between the two necessitates them to be conceptualized as distinct in the first place. The military-industrial complex serves as a critique of

36 https://avalon.law.yale.edu/20th_century/eisenhower001.asp accessed on 6/13/2019

198 this ideal model, for it draws our attention to the fact of their fundamental entanglement and mutual constitution through interaction with one another.

Medical-industrial complex

Arnold Relman (1980) wrote about the emergence of a new industry that had a high potential of affecting public policy—the medical-industrial complex. He defined the medical-industrial complex as “a large and growing network of private corporations engaged in the business of supplying health-care services to patients for a profit -- services heretofore provided by nonprofit institutions or individual practitioners” (Relman 1980, 963). The process he captured raised ethical and political questions about responsibility and regulation of the emergent industry in the face of several risks. Such risks include commercial exploitation of the technologies and services heavily subsidized by public funds, consumerization of patients, and possible abuse and distortion of social purposes.

Building on Relman’s concept, Barbara Ehrenreich (2016) conceptualized the medical- industrial complex as a historical artifact that emerged in the post-World War II U.S. alongside technological advances in the field of biomedicine, Ehrenreich identified four components of the medical-industrial complex: providers, financers, manufacturers, and the government. In her analysis of the effects of the development of the medical-industrial complex, Ehrenreich stated that “the power of the medical-industrial complex restricts the range of health policies that are thinkable or realizable” (Ehrenreich 2016, 70). The complex entanglement of special interests and funding channels changed how health has been conceptualized (see also Dumit 2012), the strategies of wellbeing, definitions of diseases, as well as the attribution of responsibility for one’s health and wellbeing. The downside of this development is the diminished ways in which structural problems can be addressed.

199 Prison-industrial complex

A more recent term, the prison-industrial complex, entered the academic lexicon in 1998— through Angela Davis’s piece Masked Racism: Reflections on the Prison Industrial Complex (A.

Y. Davis 1998) and Eric Schlosser’s The Prison-Industrial Complex (Schlosser 1998).

Davis (1998) wrote that instead of social problems, prisons make individuals disappear.

Prisons have the appearance of serving as a tool for addressing the problem of criminality. Instead of solving social issues that create the conditions in which poor people, people of color, people with drug addiction, homeless people, illiterate people and persons with mental illness are at a disproportionally higher risk of being labeled criminals and being incarcerated, the American society of the end of the 20th century increasingly relied on imprisonment and punishment as primary tools to address social problems. With the growing numbers of inmates, the industry that sustains the operation of prisons grows too, and it becomes increasingly more private. “Taking into account the structural similarities and profitability of business-government linkages in the realms of military production and public punishment, the expanding penal system can now be characterized as a ‘prison-industrial complex’” (Davis 1998). The penal system in the U.S. has become about profitable punishment.

Schlosser defines the prison-industrial complex as “a set of bureaucratic, political, and economic interests that encourage increased spending on imprisonment, regardless of the actual need” (Schlosser 1998). He continues to explain that the growing punishment industry responds to the interests of diverse actors and stakeholders: politicians of various ideological commitments; economically depressed areas and groups of populations in dire need of employment; private companies who seek cheap unprotected labor, among others. The growth of the prison-industrial system, Schlosser writes, is fueled by intentionally cultivated fear of crime, poor quality of

200 disappearing public programs, and the idea that removing troubling individuals from society will solve the social issue of criminality.

At the present moment, the prison-industrial complex designates the alliance between private prison companies and prison suppliers, that aims at a monetary gain and generating profit at the expense of sustained oppression of minority groups pushed to commit crimes and be subjected to criminal accusations without sufficient grounds.

Loïc Wacqaunt, however, critiqued the concept in his book Prisons of Poverty (L. J. D.

Wacquant 2009) by presenting a more complex conceptualization of the state, the processes within the penal system and the political landscape in a given country, in general. In particular, his critique of the prison-industrial complex is as follows. First, it is reductionist: through explaining the phenomenon of increasing incarceration through the industrialization of the criminal-justice system, we are overlooking the broader changes in the scope of the state actions vis-à-vis its marginalized populations who fall victim to this trend. Second, it is erroneous to identify profit- making as a driving force of this phenomenon. Instead, we need to look at how political discourses—in no small way regulated by the state—constitute the conditions in which labor— and inmate labor in particular—becomes a tool of rehabilitation and moral betterment. Third, the parallelism between the national defense system and the criminal justice system is false: if the former is a highly centralized system, the latter is better characterized as a loose association of different agencies that do not necessarily constitute a unified and synchronous system. Fourth, it leaves undertheorized the changes within the criminal justice system that support the rights of inmates and improve their quality of life. The comparison between an incarcerated life and a life in poor urban neighborhoods is not simple or straightforward in any way.

201 Nonprofit-industrial complex

Dylan Rodriguez (2017) looks at the recent changes in the domain of social movements and nonprofit organizations in the U.S. He coined the concept of the nonprofit-industrial complex, which he defined as “the set of symbiotic relationships that link together political and financial technologies of state and owning-class proctorship and surveillance over public political intercourse, including and especially emergent progressive and leftist social movements, since about the mid-1970s” (Rodriguez 2017, 21-22). Rodriguez’s concern is with the disablement of political Left activism through the operations of the nonprofit-industrial complex. He tracks the containment of social movements in nonprofits’ dependence on public and private funding.

According to Rodriguez, the ideology and operations of the nonprofit-industrial complex enables more violence under the guise of a benevolent ideology.

Closely related to the concept of nonprofit-industrial complex is Jennifer Wolch’s notion of the shadow state, through which she captures “the contemporary rise of the voluntary sector that is involved in direct social services previously provided by wholly public New Deal / Great Society agencies” (Wilson Gilmore 2017, 45). The shadow state, as developed by Wolch, is strikingly similar to Andrea Muehlebach’s (2012) discussion of the rise of voluntarism in neoliberal Italy.

Although Wolch identifies the state as the core agent in the ongoing processes, Muehlebach is more careful in addressing the sociopolitical and cultural system more broadly—her object of critique is neoliberalism, rather than the neoliberal state. It is neoliberalism—a system of diverse actors of which the state is one—that recruits unremunerated labor from the social precariat to address the problems created by the state and the market in the first place. Through such organized recruitment and moral valorization of this type of labor, the possibility of critique is highly censored, an effect analogous to the effect of the shadow state.

202 The funding structure through which funding bodies allocate resources to support the work of nonprofit organizations not only controls the agenda through underwriting some suggested initiatives and defunding others. The very organization of funding as funding of projects— targeted, limited in time and space, measurable, and typically discontinuous—affects the livability of nonprofit organizations and social movements. As Ruth Wilson Gilmore (2017) writes, funding rarely goes to support operations, thus leaving the staff’s labor remunerated to the minimum.

Inclusion complex

All four reviewed concepts—the military-industrial complex, the medical-industrial complex, the prison-industrial complex, and the nonprofit-industrial complex—are similar because they all capture the increasing hybridization of the domains that in the past were allegedly more protected from the influences of capital and the market. Yet now, with the increasing adoption of the logic of the market in governance and individual conduct, as well as with the renegotiation of the relations between the state, private businesses, and domestic and international organizations, the effectiveness and productivity of these domains are changing. To a great extent, they all identify the increasingly strong presence of private capital as a significant threat to the accessibility of services delivered by those complexes as well as these services’ orientation to the wellbeing of others (individuals and entities). The market logic and the ever-growing presence of private businesses in those domains also creates risks specific to the respective domains.

Of those concepts, I will use the “complex” part but will omit the “~industrial” part. I use the notion of complex to communicate that the conglomerate of actors and entities I look at is heterogeneous not only in terms of political commitments but also in terms of aesthetics, epistemic styles, moral systems, and social ontologies. I also use “complex” to designate that the connections between different members serve as channels for capital and value circulation.

203 My choice to drop “~industrial” is grounded in the following reasoning. Ruth Wilson

Gilmore (2017) writes that one of the dangers of such ‘~industrial complexes’ is that their strengthening precludes the existence of alternative futures. Such a statement relies on the assumption that public funding is less selective and less subject to the proceedings of audit culture than the funding provided by corporations. It also rests on an overly simplified idea of the agendas of different private businesses. Such a lens does not help me in interpreting Russian contexts: the relation between the state, private businesses, nonprofit organizations, and international organizations is more complex (Rogers 2015; Hemment 2007; 2015). In describing different interests and motivations that drove governmental, corporate, and nonprofit actors to join the inclusion complex, I hoped to demonstrate that these interests and agendas are not always distinct and divergent. Sometimes they converge, feed off each other, are inspired by each other. In other words, because of the lack of the economic capital that circulates within the complex and because of the sheer importance of coalition building and value conversion, it becomes impossible to determine centers of control and resistance. Such dichotomies do not have explanatory power for these contexts. Instead, different actors are enabled by their place in the complex to generate different kinds of value, and no such process of production and distribution is innocent. When blind people capitalize on their blindness, they tend to reproduce stereotypes that contribute to their disablement in the first place. Yet at the same time, they normalize blindness, render it a this- worldly bodily and sensory experience. When corporations channel funding to those projects that promote an elitist idea of inclusion, they leave unaddressed the systemic critique of ableism that fails those individuals who cannot be easily included within existing contexts without fully disrupting them. Yet such projects do result in a gradually cultivated habit among the nondisabled to share spaces and practices with people with disabilities. When state actors emphasize the

“benevolence” of the state to its disabled citizens expressed through individual subsidies and

204 slightly increasing pensions, they reproduce the stereotype that the state is a unified subject that is configured in a patriarchal relation toward its disabled citizens. Yet, at the same time, the Russian state provides support—although meager—based on disability regardless of the employment status and provides free rehabilitation resources unavailable in many other places in the world.

A feature of this complex is its systemic reliance on unremunerated labor and the shared economy of knowledge, favors, and services. This complex gets things done: people with disabilities find jobs, they enroll in educational programs, global meetings get organized, workers with and without disabilities grow professionally and economically, their networks expand, new projects get funded, organized and closed. And these things are done in many ways through the reliance on informal and accepted, yet officially unacknowledged practices—of how, when, and by whom resources are distributed, of how events are organized, of how, when and by whom inclusive projects are developed. It is the historical importance of informality and relationality beyond the official discourse that constitutes the flows of value and capital within this complex. I am not talking about corruption here—the scope of my research did not give me opportunities to explore the networks of corruption (see also Gupta 2006). What I aim to capture here is not a morally stigmatized violation of the rules of public resource distribution. Rather, I am talking about a morally sanctioned development of a community that distributes opportunities as they emerge in the different segments of these communities.

Being part of different networks (professional, personal, power, etc.) and knowing well the informal practices through which these networks aggregate and disaggregate have been vital in

Russia—on the everyday, economic, and political levels (Ledeneva 1998; 2006; 2013). Through the grassroots economy of favors (blat) to informal practices of governance, such practices constitute the driving force of conservation and change. In such conditions, it becomes hard to overestimate the significance of trusting relationships that various actors develop and maintain.

205 This is in contrast with other political tactics of change—such as, for example, rallies and protests, and lawsuits. When legal recognition is not enough (see also Spade 2015), when prohibiting discrimination does not bring about desired inclusion, a different kind of politics drive the change. It is through cultivating the community and the habit of inclusion from the inside of the network that social change is envisioned to come through. When the decision makers begin to be interested in inclusion as a potential source of various values, they channel more resources

(economic and other) into the development of inclusion and the engagement of people with disabilities in the life of the social.

Conclusion

The inclusion complex hosts different kinds of values: epistemic, social, ethical, political, professional, economic, and so on. By reviewing what draws different actors in and what moves them toward inclusion, I did not intend to present actors as ever-so calculating subjects that at all times pursue individual profit and betterment at the expense of others. Instead, I tried to demonstrate different takes on inclusion that manage to work together, thanks to the vagueness of inclusion and great room for interpretation that inclusion leaves to people.

Although inkluziya is discursively configured as pertaining to social inclusion of people with disabilities, in practice it spills out of such a tight container. Social inclusion of people with disabilities in practice concerns and includes more people, more relationships, more themes, more ideas, more values. Students, volunteers, governors, researchers, people rehabilitating from substance abuse, nonprofit workers, teachers, corporate actors, middle managers, educators use inclusion to their ends, in exchange contributing their efforts and resources. Through these personalized relationships, different degrees of investments, and generating different values, the inclusion complex runs.

206 Part II White Cane

In this part, I will focus on an idiosyncratic, specifically postsocialist inflection that inclusion took among a vast network that connects blind adults and their sighted allies across 23 regions of Russia, which I call White Cane. Since the inception of the network in 2012 in

Yekaterinburg, it has grown from two blind persons who organized makeshift city festivals on the

White Cane Safety Day in October into a vast federal network composed of a mixed crowd of members that manages domestic and international projects to promote inclusion. The network includes an NPO that procures funding and organizes their activities and a large group of volunteers and allies who attend events, participate in social projects, and provide services when needed. White Cane carries out seminars on inclusive communication for service industry workers, training activities in the dark, free-of-charge mentoring sessions for young blind persons and other recently disabled persons, inclusive festivals and workshops, cultural exchanges among persons with and without disabilities in different regions in Russia, as well as international exchanges.

Their network gathers blind and partially sighted professionals, a handful of deaf environmental activists, wheelchair users, nondisabled managers of corporate social responsibility funds, PR specialists, disability NGO personnel, rehabilitation clinic workers, educators, academics, volunteers, and artists. Despite the sometimes-significant differences in their socioeconomic and cultural backgrounds, these people maintain their connection to White Cane, driven by their fascination, support, and promotion of a particular social ontology of inclusion.

Part II zooms into one particular locus within this inclusion complex—the work of White Cane, a nonprofit organization that serves as headquarters of a broader, federal network of people with disabilities loosely united by their appreciation of an ideological platform that pivoted around the concepts of extrability and inclusion as vkluchenie. Their work serves as an excellent example of how coalitional politics may be—and sometimes are—done in the domain of inclusion. It is also a good example of

207 attempted cultural change initiated and driven by disabled (mostly blind) people. Taken together with and

in contrast to other projects of inclusion, usually designed and implemented by nondisabled governors and bureaucrats, the work of my interlocutors provides a window into cultural and political projects for people

with disabilities designed by people with disabilities (Charlton 2000). Further, my interlocutors’

conceptualizations and practices of inclusion provide an original perspective on the perennial problems of

disability-based exclusion and discrimination, the role disability plays in society, and the value of inclusion.

Finally, my interlocutors’ activities and experiences complicate the image of Russia, which has often been

described as a place of the ongoing mistreatment of people with disabilities. Contrary to this hegemonic

representation, my interlocutors and their allies spoke of Russia as a place of freedom and fertile soil for

growth and development. Such a position adds nuance to the understanding of how Russia has been

historically imagined as a socially uninhabitable environment where civic activities are unwelcome and

suppressed.

208 Chapter 4 Neededness: the culture of inclusion

In 2013, when I decided to research the disability scene in Yekaterinburg, I was looking for the actors and processes that could explain how inclusion was being practiced in the city. I asked several nondisabled friends from the city if they had heard of any disability-related organizations that could address my queries. Four of them, independently, named one organization, White Cane. I came to know White Cane as a non-profit organization (NPO) that, in the words of my acquaintance from a large regional social organization, “does inclusion well.” I was referred to them at the early stages of my project design because they were “the only active organization” in the city that not only expressed a clear interest in designing inclusion practices but were also pushing the very frontiers of the domain of inclusion—where inclusion was expected to be located and where it was needed. For them, it was not enough to bring people with disabilities into public spaces; they advocated for the development of no less than a functional culture of inclusion where inclusivity was “a value and not a norm.” White Cane left an impression of having the power to imagine a future where disability was integral and valued (for critique of ableist imagination of the future see Kafer 2013) and make a consistent effort to materialize that future.

They were perceived as trendsetters in the ontology and epistemics of inclusion.

White Cane came to existence in the early 2010s at the very outset of the institution of the domain of inclusion in Russia, at around the same time as the ratification of the UNCRPD and the launch of the unprecedented Accessible Environment federal program. Unsatisfied with the then- current cultural habits and ideas about disability as incapacitating—which were applied to the blind founders of White Cane too—the NPO’s blind founders ventured to organize various activities and events to disseminate an ideology they authored and found more productive and meaningful. The disability ideology they designed and began to promote did not operate on terms similar to those of the social model of disability, nor did they utilize disability rights as a justification for

209 supporting their cause. Their project of inclusion was not one that focuses exclusively on the wellbeing of people with disabilities and protects their equal access to freedoms granted to nondisabled citizens. Theirs was and still is a project—quite singular in its terms— that attempts to develop a culture of inclusion, a culture in which people with and without disabilities are not forced to interact and collaborate, but instead, a culture in which they all seek collaborations with each other and value them. Instead of critiquing the unequal distribution of privilege that further disables persons with disabilities, instead of making claims on the right to belong and be provided with the means to belong, they work to develop inclusive coalitions and the skills to remain in those coalitions among both disabled and nondisabled actors. It is through such alliances— meaningful and long-lasting—that a truly inclusive society can be achieved, they say.

In the remaining part of this dissertation, I closely engage with the ways a network of my blind interlocutors attempted to cultivate a culture of inclusion in Russia. The chapters to follow explore how they interpreted inclusion, through which actions and practices they attempted to cultivate an inclusive culture, and how they strategized and reflected on their activities afterwards.

This current chapter focuses on the trope of being needed and a cultivation of particular kinds of subjects—subjects capable of inclusion. Chapter Five focuses on an examination of the practical work of inclusion that my interlocutors did—which prioritized managing the contexts of mutual discomfort as opposed to providing clear instructions on how to do inclusion. Chapter Six focuses on the problem of broken trust and the embodied quality of being oriented toward each other.

Chapter Seven continues with an examination of the concept of liveliness and participation in the construction of the world in which my interlocutors live.

It is not about politics, it is about culture

The entire discipline of anthropology has grappled with culture as an object of scholarship throughout its history. One of the earliest and most cited definitions was given by British

210 anthropologist Edward Tylor: “Culture… is that complex whole which includes knowledge, belief, art, law, morals, custom, and any other capabilities and habits acquire by man [sic] as a member of society” (Tylor 1920, 1). A prominent cultural evolutionist, Tylor treated humanity as homologous in terms of given mental and physical potential and diverse in terms of the stage to which their culture advanced (Tylor’s society—Britain of the 19th century—was taken to be the pinnacle of human development). The linearity of progress was later challenged by Franz Boas, who argued that cultures have distinct trajectories of growth, thanks to different historical events that affect them. He defined culture as an integrated whole that contained values, ideas, and symbols. These integrated wholes may be studied and evaluated on their own terms; external moral standards and measures may not be used in assessing them. Countering the ethnocentrism endemic to British anthropology at the time, Boas turned toward cultural relativism.

In 1952, Alfred Kroeber and Clyde Kluckhohn critically reviewed existing definitions of culture, which they divided in six groups: descriptive, historical, normative, psychological, structural, and genetic. They offered the following definition:

Culture consists of patterns, explicit and implicit, of and for behavior acquired and transmitted by symbols, constituting the distinctive achievements of human groups, including their embodiments in artifacts; the essential core of culture consists of traditional (i.e., historically derived and selected) ideas and especially their attached values; culture systems may, on the one hand, be considered as products of action, on the other as conditioning elements of further action (Kroeber and Kluckhohn 1952, 181 cited in (Baldwin, Faulkner, and Hecht 2006, 9)

The central categories here are behavior, symbols, artifacts, historical ideas, products of action and conditions for further actions. This line of thinking is particularly pertinent to my case at hand. For my interlocutors, the link between culture and individual behavior, their values and thinking paths was an obvious given.

Gregory Bateson (Bateson 2014 [1936]) argued that culture affects individuals through education (transmitting ideas and values as truths through publicly authorized settings and voices) and selection (favoring individuals with certain features over others). Following Ruth Benedict,

211 Bateson contended that cultures standardize the emotional reactions of individuals. In other words, they have an abstract aspect Bateson called ethos, defined as “a culturally standardised system of organisation of the instincts and emotions of the individuals” (Bateson 2014, 40).

Ruth Benedict’s contribution to this line of thinking is the concept of “personality,” which connects the culturally valued traits and individuals, rendering some successful members, others misfits and abnormal. This labeling—successful, misfit, or abnormal—happened due to the incongruence between one’s personal drives and responses and culturally valued traits. She emphasized the link between the individual and society—challenging the assumption of naturally good or bad traits. Although this approach does not take enough account of internal variation within a given “culture” and disregards the complex effects of socioeconomic and political forces onto the formation of the human psyche, it laid the groundwork in connecting broader cultural contexts with specific types of “personality.”

By the end of the twentieth century, the concept of culture had been critiqued severely

(Marcus and Fischer 1999; Weiner 1995; Visweswaran 2010). Thanks to the valuable insights of feminist scholars, postcolonial researchers, scholars of color, scholars with disabilities, through awareness of such phenomena as essentialization, ethnocentrism, colonialism, imperialism, nationalism, othering, sexism, classism, racism, ableism, orientalism, capitalism, ideology, hegemony, “culture” became a risky concept, a concept that poses more problems than helped in analysis. It is impossible to produce an objective description of a culture (Behar and Gordon 1996;

Clifford and Marcus 1986)—any narrative would be mobilizing the concept of culture to achieve its ends, highlight some actors and problems at the expense of others. With this history and critique in mind, I turn to observe my interlocutors’ attempt to work on cultivating a culture of inclusion in Russia.

212 My interlocutors’ idea of culture is reminiscent of the older conceptualizations of culture in (now outdated) European and North American anthropology: culture understood as depoliticized, contained (a culture, countable and distinct), idiosyncratic, influential and fairly homogenous, distinct from economic and political domains, linked to the affective makeup of individuals. They take the culture of inclusion to embrace patterns of relations and action, social attitudes and ideas, feelings and patterns of emotion, associated with inclusion and disability. The culture of inclusion thus becomes distanced from the claims of rights and entitlement, from the law, from the principles of public resource distribution, from the critique of structural inequality, from the critique of productivism and ablenationalism.

In neoliberal authoritarian regimes such as Russia, where the domain of the political is highly surveilled, such a concept of culture comes in handy. In practice, this concept’s intentional and conspicuous distancing from the domain of the political secures a non-threatening status and lowers the degree of surveillance my interlocutors receive. Unlike organizations whose work falls under the category of “the political”—those who work in the domain of human rights, providing legal support to disenfranchised groups, education of alternative political ideologies, to give a few examples—my interlocutors were able to secure international funding and form multiple international connections without receiving the status of “foreign agent.”37 In addition to diminished state surveillance and the ability to build coalitions with big business and the state, the use of culture as the framing device facilitated connections with domestic donors and nondisability organizations, as it communicated their distance from the stereotype that people with disabilities are trouble-makers, killjoys, and a potential public scandal or litigation in the waiting.

37 Russia’s foreign agent law, signed by President Vladimir Putin in 2012, requires nonprofit organizations to register as “foreign agents” if they receive foreign funding that supports their political activities. It is worth mentioning that analogous laws exist in other countries, including the US.

213 Despite the benefits that this concept of culture offered to my interlocutors, it had its drawbacks too. They came from the challenges associated with navigating the domain of disability politics in contemporary Russia and the blurry boundaries between what counts as cultural and what counts as something else. Some activities were precluded because they came too close to those that may be recognized as political. Others were recognized as social and so referring to the sentiments of charity and pity. Some donors mistook their idea of culture for the domain of art and creativity. Finally, the reliance on such a concept imposed the requirement to remain spectacular and publicized to continue to exist as a promising and reliable organization. When combined with an understanding that no cultural change happens overnight, this imperative to deliver results even in situations when no apparent results could be observed presented strong challenges.

Although White Cane relied mostly on domestic flows of funding, James Ferguson’s critique of development projects (1994) can be helpful here. Ferguson contends that international development schemes, a continuation of colonial relationship in the postcolonial world, depoliticize economic inequality and unequal resource allocation, rendering them questions to be solved by technocrats. It is through isolating the problem from the historical conditions of its possibilities and thus operating with an artificially constructed problem that development agencies strategized and constructed. Although often it led to failure, the ongoing flow of funding provoked the reinterpretation of these failures as successes as well as the creation of such constructs as

“traditions” and “cultures” that held back development. Thus, development projects contributed to the reproduction of the status quo politically.

I would also like to emphasize that their distancing from the state-associated politics is not about the subversion of the state from within. Akin to Sean Brotherton’s (2012) findings in post-

Soviet Cuba, the sphere of the informal—what he calls lo informal—is not a tool in the predetermined scenario where the oppressive state becomes undermined by the informal practices

214 of its people, all leading toward the free market and neoliberalism. Instead, the existence and life of the informal sector becomes integrated in the life of the state—it enables the survival of the state. I encountered a similar situation during fieldwork. First, my interlocutors were not interested in opposing the state, given the complex and often supporting relationships that they had with state-related individuals. Second, they do not see the opposition between the state—albeit a strong state—and neoliberalism as helpful in their everyday work.

In what follows, I delve into White Cane members’ configurations of a culture of inclusion and strategies of cultivating it. For heuristic purposes, I single out four conceptual clusters that governed my interlocutors’ work of cultivating the culture of inclusion and that would organize my narrative here: being needed [byt’ nuzhn(ym/oy)], vkluchenie [inclusion + switching on], doverie [trust], and extrabilities [additional abilities and skills people develop thanks to their disability or other impactful life experiences]. In practice, these concepts and activities associated with them were interconnected and deeply intertwined. Together, they constitute a complex collage of activities through which my interlocutors try to change culture: they try to cultivate new kinds of subjects (needed subjects); they try to change the patterns of perception and feelings among the nondisabled about disability and difference (vkluchenie); they try to problematize the normalized ways of being for each other regardless of one’s disability status (trusting and oriented toward each other); and they try to change the practices of community building and the ethics of participation (through practicing extrabilities).

This chapter, specifically, is about the work of my interlocutors as they attempt to stimulate the formation of a particular subjectivity among people with disabilities—a needed person with disabilities. Although the very structure of ‘needed’ locates agency outside, in a third party—the need is experienced by someone else and this someone else is summoning, desiring, requesting, or demanding the services or presence of a person with disabilities—my interlocutors focused their

215 work on cultivating people with disabilities as subjects capable of offering what can be desired, demanded, and requested. It is the inclusion in such economies of need—no matter how big or small their scale is—that appeared fundamental for inclusion to come to matter.

Scene 1

Smiling mischievously, Oleg opened his workshop on communication between people with and without disabilities with his standard question “What are people with disabilities needed for?” [Zachem nuzhny ludi s invalidnostyu?]. Oleg is blind, and he knows that this question makes his audience uneasy and uncomfortable. Oleg is an educator who trains the nondisabled to communicate with individuals with disabilities and appreciate such engagements. This time, proving Oleg’s expectations right, his audience—about twenty ophthalmologists, nurses, and interns—responded with silence. I watched the audience from a seat to the side from the front stage: eyebrows elevated and drawn together in confusion, wrinkled foreheads, hands slowly rubbing against each other, looking around in search of possible relief, tense and careful stares back at their blind speaker—discomfort was in the air as was the question. Nobody was willing to volunteer any answer. “If we don’t find a good and honest response to this question, how are you going to keep sending people off to disability?38 [Kak vy budete dal’she otpravlyat’ ludey na invalidnost?] Will you be able to work without an answer?” By posing these provocative questions,

Oleg was intentionally challenging the doctors and the interns to reveal their assumptions and feelings about blindness, a condition that for their professional activities served as an endpoint, a failure (see also Michalko 1998a). In Russia, a country that in 2011 changed its disability politics and invested substantial funds into making spaces, services and information accessible for persons with disabilities, this blind educator was calling on the biomedical practitioners to generate an

38 “To send someone off to disability” means to diagnose an impairment that is not curable and that entitles a person to obtain a disability status.

216 “honest” understanding of disability as needed; not as an endpoint, but as a beginning of something new and valued. On that cloudy wintery day, he was inviting them to reconsider their ideas about disability, sociality, and human worth.

White Cane members held similar training workshops for different audiences—public transportation infrastructure workers, educators, parents, and kin members of people with disabilities, medical, and cultural workers. And the opening (and the guiding) question remained the same: “What are people with disabilities needed for?” To ask the question about the ways in which one is needed about people with disabilities was provocative in a country with an infamous history of segregationist politics and lack of appreciation of people with disabilities’ value as members of society (Field and Twigg 2000). Notably, this question was often perceived as a blaming-the-victim kind of question, a demand unreasonably placed onto an already disenfranchised population to be able to meet the standards developed for those in power. This question is also provocative because it challenges the audience to face ableism that they had internalized and naturalized (F. K. Campbell 2009b). By making the audience experience and encounter their inability to find an answer that would be “honest”—which here meant, subject to the same metric of worthiness applied to nondisabled people—Oleg demonstrated to the audience their reliance on the negative ontology that conceptualizes disability as a burden. In other words, the provocativeness lies in the presumed inability of people with disabilities to be needed in this contemporary society. Hearing this question posed by a person with a visual impairment forces the audience to confront themselves as operating under this assumption and being unable to provide any good answer. When Oleg insisted on thinking and searching for an answer, he challenged the able-bodied and able-minded audience to stay in their discomfort and find sustainable answers that would enable them to place people with disabilities within existing economies of worth. Only when Oleg answered this question and thus resolved this stressful

217 tension between internalized ableism, the able-bodied guilt, the inability to consider possible constructive answers and yet the publicly mandated respect and appreciation of people with disabilities did the audience show signs of relief: people’s facial expression changed, they engaged in discussion more efficiently and volunteered their opinions—which were both in agreement or disagreement with Oleg—unlike a moment ago when they had publicly demonstrated their confusion or outrage at such a politically incorrect question.

In his answer, Oleg speaks about the ability of many persons with disabilities to plug into the networks of being needed. He shared stories about their administrative jobs (how they were needed as leaders), professional successes (how they were needed as colleagues and specialists), family and kinship achievements (how they were needed as family and kin members), friendships

(how they were needed as friends), adventures (how they were needed as reliable adventure peers), volunteering and civic activities (how they are needed as fellow citizens). In the situation of the lack of public representations of fellow citizens with disabilities as ordinary (as opposed to exceptional) colleagues, friends, bosses, parents, educators, travelers, lovers, Oleg’s testimonies challenge his audience to begin reconsidering their assumptions about disability and their own neededness.

When understood as explanatory devices, such functionalist frameworks are certainly dangerous. Assuming that social groups and individuals fulfill a function within the broader social organism runs the risk of reducing their complexity to their ability to satisfy some need others purportedly have. Especially in a situation of decision-making regarding the worth of such institutions, their worth becomes predicated on someone’s evaluation of how useful or capable these institutions are in helping the society reach its goal, also speculatively determined. A functionalist framing imposes an anthropomorphizing model of society to any social system and community, regardless of their historical, symbolic, political, economic, or religious

218 idiosyncrasies. Without accounting for change (why do seemingly functional institutions seize to exist and are replaced by other organizations forms?) or the prolonged existence of dysfunctional institutions, the functionalist framework does not offer a tool sufficiently powerful to explain many social processes it deems pathological. And yet, through prioritizing abilities and fulfillment of an external need as primary determinants of human worth, these frameworks are endemic to such different productivity regimes (Hartblay 2014) as the capitalist United States and late socialist and postsocialist Russia.

Here, I am taking Oleg’s imposition of a functionalist framework not as an explanatory device that would allow me to interpret why people with disabilities are excluded from a wide array of social platforms and cultural. Instead, I approach it as a strategic tool of communication that Oleg used to produce desired effects among his audience. By posing the question that would connect people with disabilities to any social need, Oleg is pointing to a stereotype (people with disabilities are useless and nobody needs them) and is also opening an opportunity to renegotiate this stereotype, which denies recognition to people with disabilities as productive subjects who partake in the social division of labor. He capitalizes on functionalism’s assumption that social groups are elements of a whole, and thus they belong to the whole by definition. If people with disabilities belong to society, and they do because they exist within this society, then what kinds of social need do they, as a group, help address? Whom do they help? Posing the question of their function within Russian society thus interpellates them as subject to the same ideological imperatives (to be productive, for example, and through that acquire worth) and thus lifts the perceived exceptionality of their identity.

Without a strong answer, this question adds extra risks of further exceptionalizing people with disabilities and reproducing the idea that they are part of a special class of people—a less valuable class. By talking about what people with disabilities can do and how their actions can

219 help or be of value to other people, Oleg simply demonstrates that it is, in principle, possible to include people with disabilities to society as it is now, without reforming its core values dramatically. This interpretation of inclusion—which provides a way of valuing people with disabilities through the social roles that they occupy and socially valued forms of productivity and engagements—does not present itself as threatening but rather as offering long-awaited

“informational” or technical solutions to the painful problem of disability exclusion. By letting his nondisabled audience know how people with disabilities are needed as social actors by nondisabled social actors whose membership in society is not questioned, he creates an impression that inclusion is simple and, in principle, feasible.

Scene 2

On September 12, 2018, a blind journalist and a friend of the White Cane networks Aliya

Nurulina posted an essay titled A Person Cannot Pull Themselves Out: A Unique Experience of the “Circle” Creative Association39. This essay focuses on the work of a charity—which Aliya uses in the sense of nonprofit organization that Aliya describes as unique. To contextualize this organization, Aliya writes the following:

How does a typical charity organization work in Russia? They take a socially unprotected group of people and regularly provide them with various material benefits. [Such a strategy] is not always bad, but, unfortunately, many benefactors do not want to go beyond this scheme. Four years ago, Marina Men’ created an organization that breaks many stereotypes associated with charity. The Krug [in English, circle] creative association is a place where people with different types of disabilities receive something that cannot be bought for money: here, they find opportunities for self- realization and can feel really needed. (emphasis mine)

Aliya’s essay operates with a distinction between NPOs’ approaches to disability based on the content and type of their work. This distinction surfaced and resurfaced in many conversations and chats that I had with different blind people in Yekaterinburg, Moscow, Vladivostok, Khabarovsk,

39 https://vk.com/@aliya_nurullina-chelovek-ne-mozhet-sam-sebya-vytaschit-unikalnyi-opyt-tvorch, accessed on 1/8/2020

220 Sevastopol, and Novosibirsk. In essence, it had become a cliché that circulated across various regions in the country. Several metaphors captured the affective and conceptual sides of this distinction: in some organizations (which were perceived to constitute the majority of charity organizations and NPOs) people with disabilities “received gifts” and “congregated to drink tea with pastry” whereas other organizations “do real work,” they make sure that people with disabilities are engaged in socially-significant [sotsial’no-znachimye] projects and “do meaningful work” [vypolnyayut rabotu so smyslom]. Underlying this distinction is the trope about the constructed dependency of people with disabilities on gifts and material provision delivered to them by the state. The former organizations cater to such a demographic; the latter organizations find practical ways to provide resources for various generative activities for people with disabilities. An excerpt from Aliya’s text, where she explained the opinion of the organization’s director, is helpful:

Every time I had to figure out how to captivate [the attention of] our deaf-blind. Their peculiarity is that they have always been the object of exemplary entertainment: there are deaf-blind people, and people think what to do with them. [All-Russian Society of the Blind] [does] a sports competition, after which participants are given electrical appliances. Or a New Year's holiday, after which they also receive perks. Every week they are invited to tea parties. The system works like this: the organization must report, collect a certain number of participants. And in order to stimulate them, they are offered all sorts of temptations. And the deaf-blind are used to all of this.

Aliya presents the director’s critique of the work of those organizations that only focus on creating a spectacle of care by generating imagery of catering to the needs of people with disabilities. In reports to be submitted to granting agencies, the number of attendees and participants serves as a uniquely powerful indicator of the scope and scale of a given project. For this reason, many NPOs concert their efforts in providing gifts and free snacks. The commonality of this phenomenon and such a form of “disability work” is considered to be a strong force in producing helplessness and consumerism [potrebitel’skoye otnosheniye] among the recipients of the distributed resources.

Importantly, the problem lies not in the distribution of resources per se but in the kind of resources

221 that get distributed—tea, cookies, access to special entertainment events—instead of the resources that are considered to enable personal growth and professional development (such as access to subsidized education, internship, employment, assistive technology, collaboration opportunities).

Aliya identifies the organization she writes about as one that does “disability work” well— they provide an enabling environment through which disabled individuals (the organization targets deafblind individuals, people with mental disabilities) get opportunities to expand their social network, artistic and professional abilities, everyday living skills, generate profit from their work, receive education, and participate in community governance. It is these resources that enable disabled members of the organization to thicken and deepen their social engagements and, ultimately, to become needed by their network and clients. This organization manages to create an economy of need and mutual indebtedness. From the text of the essay, readers learn that there are various valences of neededness that are at play: deafblind people are needed for their artistic skills

(the profit from selling their art objects generates the magistral source of organizational revenue), persons with mental disabilities are needed for their artistic skills and assistance services (they provide situational assistance to deafblind persons), every member of the community is needed to enhance socialization and communal support to each other, the director is needed to manage the financial and organizational side of this organization, sales and client feedback are needed to deliver external approval and provide social validation of the work of the artists and craftspersons.

Through being needed, Aliya conceptualizes, a person becomes truly included.

Aliya’s essay adds another valence to the concept of being needed—she speaks of being really needed, which here acquires almost existential overtones. She emphasizes the vitality and mutual traffic in the social connections between and among people with disabilities and others.

Through engagements—of helping each other in everyday living, in sharing communal life, in supporting each other in creative workshops and different life situations—people with disabilities

222 appear as protagonists of life stories well beyond the economic domain. The need that they work to address is the quality of life and wellbeing, as opposed to being interpellated as persons subject to the same requirements and standards of evaluation.

Scene 3

I came home from a day of work, drained and exhausted. Having spent a day trying to organize several events and writing three different grant proposals, I called Tania in exasperation.

I felt like I had had enough of it—working with an NPO that was the flagship of inclusion promotion was far from easy—and I hoped to get a friend’s support. Tania is blind. A passionate and enthusiastic White Cane ally, Tania now works in organizing inclusive activities, fairs, events, concerts, excursions in her home region. She singlehandedly finds disabled and nondisabled participants to join her projects and runs necessary organizational errands alone. That night, I called her and asked why she bothered doing this at all if so often it was difficult to convince local authorities and potential participants, and it didn’t bring any substantial income. Because of her disability status, the state provided her with a pension that was not affected by her employment status, plus her social projects were not designed to generate profit anyway. I hoped to find some solace in her words; maybe something would resonate with my frustrations too, I thought.

Tania is a tough one. In her region, as in many others, the initiatives that involved people with visual impairments were mostly authorized by another organization of the blind—VOS.

Rumor has it that they considered Tania’s interest in White Cane’s event to be potentially threatening to their access to state funding and members. When I did my fieldwork, Tania’s activity in her region was new, while VOS had historically held a monopoly in blindness-related matters.

Thus, while trying to organize her projects and city-wide initiatives, she had received markedly more prominent resistance among blind individuals in her region (who were more connected to

VOS than to her and thus believed that her inclusion-related activities were a scam). And yet still

223 she seemed to never run out of energy to work and move forward. No critique seemed to shake her conviction that her work was worth the effort and the direction was right.

In response to my question, she told me her story. An animated and active person, Tania lost her sight gradually. By the end of her school years, she had to be home-schooled because of her visual impairment and other related health conditions. She realized that little professional opportunities for blind people existed for her out there—she joined the local branch of VOS only to discover that their main focus was on recreational events such as drinking tea, eating cookies, and listening to concerts of poor quality. Having nothing to do, being on “neverending vacation”

[beskonechnye kanikuly] proved to be maddening to her. She wanted “to do something, to be someone,” to not stay at home and “wait for happiness to knock on [her] door.” “At some point, you get tired of the perennial leisure that VOS offers you. It’s all about meeting up, listening to their kolkhoznye [of poor quality, amateur] concerts, drinking, and going home. That’s all they do.” Tania said that facing this world quite literally immobilized her, she hated it deeply.

She met White Cane members when they visited her town with one of their projects. She was one of two people who came to attend their meet-and-greet event. At the meeting, White Cane members—blind themselves—talked about moving around with white canes, about their project of inclusive sailing, about inclusive festivals and educational programs. They showed recordings from past events and activities—where interviewed bind people would sound engaged and active—and shared their plans for the future. They invited their guests to join whatever project they liked and promised to support any initiative that participants would come up with if they wanted to support inclusion in their region.

At the end of the meeting, Tania was overwhelmed. She said, “I was in shock. I met blind people who lived lives worthy of envy! They are known in their cities, they do good work, they do real things. Those people who showed me something that changed my life forever, they gave

224 me a community and a purpose to get up from my bed every day.” Driven by fresh enthusiasm, she found a job at a local library and started building a community of like-minded people in her hometown. “My purpose was to become someone, to become a driving force too,” that is, become known and appreciated, useful for her own community and her region. Alone, she founded and organized an NPO, fundraised, developed and organized a service of inclusive tours around her town, organized and carried out large inclusive fairs in the park, connected to the local sailing club and organized inclusive sailing races and training. With the support of White Cane, the headquarters of which still was based in a different region, she kept creating coalitions, connections, projects, services in her region. “I realize I may be addicted to this movement, to this development. I have changed and I have changed for the better. The work I do gives me a sense of purpose but also it makes me a better person,” she added. For her, inclusion was the driver of her becoming a self-realized recognized professional in her town and region. “The next time you sit at your desk and hate all this, think why you are there in the first place. What inclusion has given to you and what you are willing to give it back in return.”

Since the beginning of her work, Tania became a driving force for many improvements and new ideas within the White Cane community. All scattered around different regions, White

Cane members and allies regularly talk, connect, brainstorm, visit each other, provide feedback about each other’s activities, help with project administration and fundraising. They discuss their mistakes, what they did wrong, how to work better, how they can be better at addressing their own and other people’s mistakes, how to be exemplars and mentors to other blind people in the area.

They regularly reach out to blind adults who may potentially be interested in going out of their comfort zone, find or create a job, become a professional, do something about the place and community they live it, come up with a service or a project they would like to share. She later gave

225 me a comment: “When I sat at home, I never even thought that I could be helpful to others. I never even thought I should be helpful to others.”

Tania’s story shows the third, yet undiscussed facet of being needed—the first-person narrative and experience of what it feels like to be needed and why it is so valuable. Getting to know Tania in 2016—as energetic, enthusiastic, and intensely sociable—it was hard to imagine what kind of person she used to be when she was cut off from the social communication of her choosing. Tania thrives when she comes to know more people, when she hosts them in her hometown, when she organizes festivals, tours, hangouts and when she tutors other, younger people in the network. She also uses the distinction between real work and what she called neverending vacation—if the former is challenging, exciting, and geared toward development, the latter is considered to be degrading, wasteful, and of no value beyond consuming resources the state provided them with.

For Tania, her value as a human being derives from her feeling of byt’ nuzhnoy [being needed] (Höjdestrand 2009; M. A. Parsons 2014). This feeling and condition are meticulously cultivated and produced—through smaller and bigger actions, through timely gestures of support and concern, through calls, gifts, treats, and drinks, through labeling some actions as gifts and favors. These gestures of giving intentionally produce a thicker social tie. My other interlocutors describe this cultivation of being needed as an intentional strategy: when one comes into a new community, begins a program in the university, or starts a job. The labor of building a thick social fabric where members are oriented toward each other and offer a wide spectrum of smaller offers and favors—to help with childcare, to share home chores, to offer meals, etc.—becomes the guarantor of fuller self-actualization and the condition for further enablement.

226 Valences of neededness

It is through the convergence of these three facets of being needed—the broader ideological, the communal, and the personal—that disability inclusion, as promoted and defended by White Caners, becomes a relationality regime. To be needed and included thus configured poses an imperative and a goal of building dense networks, immersing oneself into a world of others, exposing oneself to its risks and potential benefits. This conceptualization prioritizes these connections—as opposed to individual achievements—through which people with and without disabilities get opportunities to form strong social personhood and subjectivity. These connections codified as relations of being needed require a response from the other, appreciating or approving of the actor or their actions.

It is important that the imperative to expand one’s social network and multiply ways in which to make oneself available to others is work imposed on people with disabilities. Already marginalized and finding themselves facing added barriers in education, daily mobility, employment, leisure, sports, within this framework, people with disabilities become the primary subjects who have to work on themselves and cultivate abilities and pleasant social habits that would render them successful social agents. They are tasked with creating the need among other people—disabled and nondisabled alike—for their presence and services.

On the one hand, this disposition is not new. Anthropologist Jarett Zigon (2010) wrote about the rehabilitation of people with drug addiction in Russia done primarily through pushing them to cultivate new personas, compatible with living conditions and values espoused by neoliberal Russia. There, persons who are pushed toward addiction by ineffective social infrastructures, become responsible for pulling themselves by the bootstraps through making themselves into different kinds of persons. Michele Rivkin-Fish (2005) argued that after the dissolution of the Soviet Union, collective claims and advocacy became severely immobilized,

227 with individual strategies coming to the fore as the primary means of driving change and getting access to resources one is entitled too. Becoming better persons (individualizing strategies) with wider networks, professional and personal (personalizing strategies), and procuring access to resources through these networks (privatizing strategies) enabled pregnant women to access services and resources they desired. In other words, instead of organizing collectively and putting pressure on political actors, women fell back onto such strategies of individual survival and life betterment. In general, in contemporary Russia, personal responsibility and initiative become valorized as immersed and occurring within the networks of obligation (Bernstein 2013; Matza

2018; Rivkin-Fish 2005; Raikhel 2016).

On the other hand, tasking the victims of structural ableism with amending the system is tricky. Although disability rights activists have demanded to be included in the process of decision- making concerning disability policies and rulings (Charlton 2000; Shapiro 1994), not demanding the privileged group (here, the able-bodied) to address their bias against disability and do any labor in changing the system’s oppression of people with disabilities merely reproduces ableism (for a discussion of tasking people of color to address racism see Ahmed 2012). Importantly, the individual cultivation of themselves as better persons leaves intact systemic ableism internalized by people with disabilities. As Fiona Kumari Campbell (2009b) argued, normalized negative representations and social attitudes toward people with disabilities shape their self-identity and trigger mental stress and physical injuries, as well as prevent people with disabilities from building communities and generating social critique. Thus, without addressing the negative value attributed to people with disabilities because of their disability, the aspiration of becoming a better, more whole subjects may forever fail and be undermined by this naturalized devaluation.

Advocating for themselves and claiming independence aligns with the liberal ideal of political agency and appearance for people with disabilities (Zoanni 2018a; 2019). Yet in contexts

228 where political protests and political critique—collective or otherwise—are risky and not accessible or of interest, cultivating smaller-scale safety nets becomes a viable solution. For my interlocutors, reliance on national and federal networks of support does not promise prospects of wellbeing. Becoming participants—those who oblige and are obliged—of smaller-scale networks does. Through being needed and having relationships, through cultivating their personhood, they acquire a social world within which they receive validation, grow, find, and forget themselves as subjects.

Personhood as a locus of social connections has been a prominent object of anthropological inquiry. Scholars debated about whether personhood is universal or culturally specific (Appell-

Warren 2014; Cohen 2000), and whether individuality and social connectedness make sense apart from each other (Appuhamilage 2017; Busby 1997; Kharkhordin 1999; Overing 2000; Raeff 2008;

Strathern 1990). Kinship has been one of the primary anthropological lenses to theorize relatedness and personhood (Carsten 2003). Of particular interest for me here is research on the ways in which kinship ties complicate one’s formation as a person living with a disability and other markers of difference. Families devise strategies of normalization (Ablon 1988) or alternative spaces of sociality (Ochs and Solomon 2010). When the scenario of fitting in or even surviving does not materialize, relatedness between persons with disabilities and their nondisabled care-givers who are also family members profoundly shapes all involved members (Mattingly 2010). Parents with such experience may act as cultural innovators and educators (Rapp and Ginsburg 2011). Kinship ties can harm and ostracize, too (Das and Addlakha 2001). Family settings can act as loci of othering and further marginalization, enhanced by the broader absence of infrastructures of support

(Friedner 2015). As a result of this, people with disabilities and other differences have come up with ways to cultivate other communities of intimacy and close relatedness (Friedner 2015;

Hartblay 2019a; Weston 1997; Wool 2015).

229 Medical anthropologists and critical scholars have paid attention to the ways in which being part of a community or having relationships with others has a profound effect on one’s wellbeing and even survivability. In looking at the so-called zones of abandonment, Joāo Biehl (2005) theorizes the declining vitality in a location of disregard. Having little to no access to networks of support, long-lasting communities, or safety nets has proven detrimental to an individual’s mental and physical state, as well as conducive to the development of comorbid conditions among many vulnerable populations, including pregnant homeless women who suffer from addiction and lack access to proper housing (Knight 2015). The thickness of connections and participation in community cannot be taken for granted as naturally occurring just by virtue of sharing space— research has demonstrated that the mere “release” of previously segregated individuals may lead to the degradation of one’s mental and bodily wellbeing (Brodwin 2013; Friedman 2009), although others have found ways to cultivate a community of self-carers bypassing official infrastructures

(Chudakova 2016). Sometimes, however, connections, even intimate, become harmful, inducing addictions, and triggering relapses and unsolicited bodily modifications (Clare 2014; Denham

2017; Garcia 2010; Matza 2018; Mauldin 2016). Community, albeit idealized and romanticized, can easily have limiting rather than empowering effects—through complicity to the broader structures of power inequality (Joseph 2002).

The single most important feature of the sociality of being needed is the flows of care that these relationships enable. People with disabilities are often considered to be eternal recipients of care due to the common medicalization of disability (on medicalization see Zola 1972), systemic ableism, and the stereotypical attribution of the sick role (T. Parsons 1951). Regardless of how different their bodily and mental sustenance routines are in reality, the naturalized stereotype in

Russia has it that blind people, wheelchair users, people with mental disabilities, people with chronic pain, and people with other disabilities focus their efforts and life projects on finding a

230 cure to their disability—that all they care about are emergent opportunities to alter their bodily and mental conditions to approximate their bodily and mental abilities to those of the majority of society around them.

In opposition to this stereotype, my interlocutors place people with disabilities squarely within lateral connections of caregiving—they push people with and without disabilities to notice moments of caregiving performed by people with disabilities and they encourage people with disabilities to perform and mark these moments. It is about both performing care and making this performed care noticeable to others. Through this recognition of people with disabilities as social actors and care providers, care provision has an empowering and formative effect on both people with disabilities and their connections.

In writing about South African contexts, James Ferguson (2015) introduces the concept of distributive labor, which he defines as labor decoupled from the process of production as its only possible valued form. Distributive labor is work that “involves ways in which people who do not have access to wage labor endeavor to capture a piece of the wages earned by those who do”

(Ferguson 2015, 99) through redistributing the value they have access to in ways conducive to their survival.

Even where [work] isn’t [productive], there is no cause for disdain, and no reason to ignore the fact that even the unproductive are both engaged in labor and entitled to social membership. The woman begging on the street may not be producing a good or selling a service, but she works all day. To say that she is not productive is not to denigrate her labor. It is, instead, to underline the importance and value of distribution (Ferguson 2015, 100).

Ferguson draws attention to the sheer significance of distribution as a form of labor that is massively common in the world. Denigrated and stigmatized, often not recognized as a form of labor, it often gets to be disregarded, despite its fundamental significance in the lives of almost everyone. Distributive labor is part of what sustains families, friends, and other people who are bound together by a social connection. In fact, only a small fraction of people have an opportunity

231 to derive their livelihood from productive endeavors. The world’s majority survive and depend on distributive labor, distributing the value generated by the few. It is a common story among my interlocutors, even those unemployed, that their income never stays with them—entire families often depend on the state-provided pension to people with disabilities, which is typically plugged into economies of family sustenance. In this interesting way, people with disabilities, popularly proclaimed to be dependents on the state, act as breadwinners and redistributors and contribute to the survival and flourishing of their sub-dependents (Ferguson 2015, 104), people who depend on their redistributed value. Ferguson offered six domains in which distribution practices are central to livelihood: land and landholding; kinship and sharing; migration and movement; work and business; sex and love; and death and funerals (Ferguson 2015, 104). Distribution is thus pervasive yet unrecognized.

Distribution is part of the broader care work one does to sustain themselves and their communities. Elana Buch has observed that across various anthropological conceptualizations,

“care remains a shifting and unstable concept—alternately referring to everyday practices, engagements with biomedicine, biopolitics, affective states, forms of moral experience and obligation, structures of exploitation, and the relationships between these various things” (2015,

279). For the contexts I discuss, it is important to hold this complexity together and keep the definition of care open, embracing both a caring orientation toward the other and the practical materialization of this orientation in the form of gestures, sacrifices, gifts, services, embodied forms of assistance, timely inquiry, and networks of value production, circulation, and consumption through which power relations get to be reenacted. Heavily publicized and distributed is care’s ability to repair and help recovery (Garcia 2010; Han 2012), but care can also be harmful

(Povinelli 2002; 2011; Stevenson 2014), sometimes deadly (Gupta 2012). Because care is a constitutive element of social reproduction, it often reproduces unequal power relations and

232 reproduces unequally positioned subjectivities (Buch 2013; Colen 1995; Glenn 2010; Parreñas

2002). Finally, another prominent risk associated with care provision is the construction of the care recipient as “needy” or a “problem” (Caldwell 2016; Timmer 2010). Although anthropological research has demonstrated how care provision may fulfill the domestically and locally constructed need to help (Malkki 2015), the label “needy” or “parasitic” hangs as a threat to social status, available forms of social participation, and connectivity.

Russia’s history with the label “parasitic” that epitomizes the stigmatizing attitudes toward dependence is particularly difficult. Sheila Fitzpatrick (2006) reviewed the development of the concept of sotsial’nyi parazit [social parasite] throughout the Soviet era (codified in an anti- parasitism law in 1961). If in the early Soviet times it was mostly applied to the class of property owners (bourgeoisie as social parasites) that was ideologically presented to act as a “parasitical” upper class, after the war attention shifted onto those who derived profit from the secondary economy or appeared to not be laboring at all. With the increasing prosperity of the population after the war and their increasing reliance on the second economy, the party’s attention—and ideological attack—was directed at those with “unearned income.” Although the popular concern was primarily with thieves, publicly drunk people, and bandits, the propaganda machine facilitated lumping together various social groups under the umbrella of parasite: people with disabilities, housewives, children, unemployed college graduates, pensioners, people who derived profit from nonofficial jobs, religious sectarians, and other marginalized groups. The label was not only stigmatizing, it was also dangerous: if accused and proven guilty, the anti-parasitism law could sentence an individual to up to five years of forced labor in exile. Although contemporary Russia does not have such a law, the ideologized and stigmatized figure of the social parasite lingers and provides an opportunity for cultural marginalization of economically and politically disenfranchised people, including people with disabilities.

233 All of these different valences of being needed and needing others are also connected to the contested and mythic binary dependent/independent. Pervasive in North Atlantic contexts, this binary has received critique (Butler 2004; Fineman 2005; McRuer 2018). Dependence is a complex concept. I turn to James Ferguson’s analysis of small cash grants in South Africa for his nuanced analysis of the condition of dependence:

For while “dependency” is obsessively decried as a problem or a trap in social policy discourse, an ethnographic view suggests that it is really only via relations of “dependence” that most of the population survives at all. Dependence is, in this respect, not the name of the problem; it is the name of the solution. (2015, 97)

Ferguson discusses dependence as a form of relations that sustain the majority, regardless of their economic status. And yet within the framework where productivist labor is the only form of recognized labor, dependence is stigmatized and its value left unrecognized. Other scholars—those of disability and other human forms of life—emphasized the mutual dependence of humans through the concept of interdependence. For Judith Butler (2010; 2015), interdependence is a fundamental feature of human existence, rooted in our vulnerability and unequally distributed precarity.

Conclusion

I have lost count of the times that I heard White Cane members talk about inclusion, among themselves and with other people. On weekends, we would gather for conference calls via Skype to discuss inclusion and inclusive projects. In their office, hours and hours would be spent debriefing after an inclusive activity and planning new ones. We would travel domestically and internationally in order to reach out to new audiences and connect to diverse individuals who might want to engage in a conversation about inclusion. During my fieldwork, we traveled to nineteen

Russian regions where White Cane members would visit different towns and cities in order to hold seminars on inclusion and inclusive interaction and meet with local blind persons, administrators

234 of the Society of the Blind, members of other disability organizations, university professors, educators, library workers, people with other disabilities, corporate and governmental representatives, medical professionals, social workers, parents of children with disabilities, and other nondisabled allies. Days and days would be spent in trains and planes, cars and buses, moving across sites, buildings, communities, and contexts in order to connect to a new audience and converse with them about inclusion, and to design inclusive events and activities. My travel partners would talk about inclusion without pause, it seemed to me; to our fellow train passengers, strangers we met, business and activities partners, people they knew well and those they had only barely met, like taxi drivers. They harvested opinions and ideas from everyone who was willing to share their experience with them. During my fieldwork, the talk about inclusion would stop at night when we would go to sleep only to begin again the next morning. I would often feel exhausted, surprised at my travel partners’ capacity to have what I perceived to be an endless source of strength and motivation to work without a break over such long periods of time. I felt that in the midst of all this inclusion work, I had virtually no time to my own, no private life unrelated to inclusion. Only later did I realize that there was one significant difference between me and my travel partners: for me, this process of figuring out inclusion was work; for my interlocutors, it was their life. Cracking the riddle of inclusion for them was and is a vital activity that affected their life dramatically and opened up unprecedented opportunities.

My interlocutors’ conception of inclusion is a complex edifice, and in this chapter, due to the limited space, I do not give it the full attention it deserves, instead only focusing on its one foundational element—its reliance on the post-socialist pattern of relationality of “being needed.”

Prior to theorizing the place that disability occupies in society, prior to considering the practical implications and markers of measurement, this post-socialist understanding of inclusion cultivates the idea of inclusion as the culture of engaging with each other. This interpretation of inclusivity

235 as a cultural orientation toward people with and without disabilities as potential social actors— colleagues, lovers, strangers, friends, bosses, enemies, friends, etc.—opens up a way to retailor the social and to reorganize collectivities and to distribute responsibility across the divides of abilities.

This inclusion was not about negotiating the terms of belonging for blind people, in particular, or disabled people in general. Instead, their ideology of inclusion focused on cultivating social relations between people with and without disabilities through which the value of both parties increases. Such an approach takes a different route to address the issue of ableist forms of exclusion. It does not supply a systemic critique of the legal systems of failing (or sometimes even nonexistent) infrastructures. And yet at the same time, it does not individualize disability, locating it, as per the medical model, in individual bodies and placing the responsibility to solve all ableism- caused problems onto the person with impairments. Instead, this interpretation of inclusion encourages the proliferation of alliances and communities within which members contribute and cultivate abilities and skills, as they become bound together by the distributed ability and the links of being needed.

Like any other project, this inclusion is exclusionary, for it serves only certain kinds of disabled bodies and disabled minds and measures the value of social subjecthood by individuals’ capacity to relate to each other and develop relationships. Although social relations vary greatly and thus patterns of being needed range widely too, the very principle of living socially—and engaging with others directly or indirectly—becomes a decisive factor. Further, such a conception of inclusion downplays the urgency of material sustenance that people with disabilities face, given the increased risk of unemployment due to systemic ableism. Finally, this conception of inclusion shifts attention from disability and the unique vulnerabilities of people with disabilities to the broader overarching problem of building social relationships conducive to aggregating social and

236 economic value. Without addressing systemic ableism, this interpretation of inclusion risks downplaying the insidious ways in which naturalized ableism reproduces itself.

This interpretation of inclusion is symptomatic of its time and place—postsocialist Russia in the era of the centralizing state and the intensified climate of moralization of public discourse of the 2010s. In this climate of the increased care (and obsession) for the establishment of key axiological terms that not only qualify the nation as modern and good, but also establish its stance vis-à-vis such pertinent problems as discrimination against persons with disabilities and their exclusion from the majority of domains of life, the inclusion mandate that traveled through the ratification of the United Nations’ Convention on the Right of Persons with Disabilities in 2012 quickly gave rise to the entire domain—the domain of inclusion. This domain gathered persons with disabilities, their family, kin members and friends, educators, governors, corporate actors, and nondisabled allies and channeled their resources into figuring out the best ways to make Russia inclusive. Importantly, the inclusion mandate traveled to an already-galvanized environment—one where people tried to figure out new effective ways of caring for their home environments and fellow citizens through numerous and now common practices of volunteering and civic activities, which have been folded into the domain of work and citizens’ productivity metrics. Thus, the inclusion mandate soon found support among members of various populations that each espouse different, sometimes opposing, agendas.

In a place that has historically been politically and socioeconomically governed by values other than the liberal values of individual freedom and self-determination, inclusion morphed and adapted in accordance with locally recognized patterns of relationality and crisis-sustenance. It quickly detached from the social model of disability and shifted its critical focus from the disabling social structures onto enabling relations. From a close examination of post-socialist microprocesses of locally interpreting and deploying an internationally recognized mandate to

237 make Russia inclusive, we learn about the ways in which liberal hegemonic devices of political critique and social change—such as inclusion—cease to serve as liberalization devices and instead become domesticated and produce alternative concepts of social justice, human dignity, and the value of disability as a marker of citizenship.

238 Chapter 5 Hard Feelings

Introduction

Lionya, Lena, and I are headed over to a vocational college, where we are expected to spend about five hours instructing the audience of this college’s professors and staff on inclusive communication. Lionya is in a wheelchair. I’m pushing the wheelchair on the uneven ground of hilly soil and puddles—something looking remotely like an attempt to make a “ramp” is located only at the back, so we have to go around through a hole in a wire fence. Lena is following us, or rather the sounds we are making, as she is walking with a white cane. And we are making a lot of sounds which are mostly sarcastic remarks about our glorious appearance through the backdoor, our shoes covered in mud, all sweaty. “You can feel nobody thinks about inclusion here, ever,”

Lena comments as we are about to enter the building which welcomes us by a narrow doorway, too narrow for Lionya’s wheelchair. He had to stand up and walk over the barrier and wait as I fold his wheelchair to squeeze it through the doorway and unfold it back for him to sit down again.

Several steps up lie just ahead of us, greeting our arrival from the “accessible” entrance. I go to alert the administration that we have arrived and are seeking help—realistically, a couple of strong people—who would be able to lift Lionya on his wheelchair to the “ground floor.” After a few runs up and down between the floors, in search of the PE instructor who would bring two strong- looking male students with them, I return to Lena and Lionya, who are still waiting at the footsteps.

The lifting team carefully helps Lionya climb these few steps, we thank them, and they escort the three of us to the auditorium. And thus we arrive to our destination point where students had already begun gathering—we are sweaty, covered in mud, with plastic bags with assistive technology items and blindfolding masks are swinging on the handles of Lionya’s wheelchair, carrying a five by five foot tactile city map on my shoulder, and still cracking jokes. Tasked with

239 showing what inclusion is to the audience of about twenty college instructors and staff, we are facing the confused and unenthusiastic faces of middle-aged men and women who were made to come to this auditorium by the requirement to provide evidence that they work to “improve their qualifications” [povysheniye kvalifikatsii]40.

One of White Cane’s signature programs was a continuing education training in inclusive communication they offered to nondisabled audiences. The main feature of this two-day program was that it was people with disabilities themselves who held classes and provided instruction. A blind coach taught the audience about the specifics of blindness and the basic rules of engagement with blind people. A wheelchair user coach instructed on how to communicate with wheelchair users and people who use other mobility-related aids. A couple of persons with mental disabilities, accompanied by a worker from an organization where they work, offered an opportunity to provide a hands-on training on how to communicate with people with mental disabilities. A nondisabled psychologist offered a class on the intricacies of communication and communication with people with disabilities in particular. I would often come in as tech-support—to show videos, play recordings, distribute equipment, do paperwork, transport equipment, and find the destination point. Sometimes I would fill in for the assistive-technology instructor whose job would be to introduce students to the assistive technology available to people with disabilities these days, with the help of which they may enjoy access to information, space, and services. Closer to the

Congress, I would lead a section where we would discuss communication with disabled foreigners—technology that could help in cross-linguistic communication, internationally recognized gestures of politeness, and so on. On that day at the vocational college, I came in as

Lionya’s co-instructor. An experienced wheelchair user and inexperienced instructor, Lionya

40 This is a federal requirement for teachers employed in public institutions

240 wanted to have me ask him questions that would guide his narrative and help him make sure he covered all the planned material. In a word, overall my role was unfixed and confusing, which drove me to become increasingly anxious and uncomfortable. I did, however, love hanging out with my friends who served as instructors—this program gave me plenty opportunities to catch up and spend time with them.

The five hours ran by quickly. Lena covered two sections, Lionya and I covered one on using a wheelchair and the specifics of wheelchair users as interlocutors. Lena looked professional and she spoke so convincingly—a stark contrast to Lionya and I, who carried out our section cheerfully, lightly, and dialogically. She held the opinion that sighted instructors can only take her seriously if she overwhelms them with authority and expertise. Lena’s sections were the first ones, ours was the last. She told them about her experiences as a congenitally blind woman, what kind of achievements she had, what kind of support she needed to have these achievements, and what inclusion has to do with all this. She spoke at length about the idea that inclusion is new to all of us—sighted and blind, disabled and nondisabled. And so, we have to act as teachers to each other—teach each other inclusion through practice. Lionya and I exchanged remarks, whispering, that we both thought that this audience would take Lena’s style better. For our part, we brought in an additional wheelchair to let the audience play with it and test the grounds of their own college.

Few people agreed to sit in the wheelchair—because of the superstition they had which connected this playful experience with a prospect of reliving it in real life. I acted as a dummy doll for almost everybody who wanted to push the chair around and understand what barriers are and what it takes to “overcome” them in this college. Meanwhile, Lionya was commenting about their pushing technique and answering the audience’s questions—how to get on a bus, how to purchase things in a store, how to get in and out from one’s apartment, how to travel by train and by bus, how well the state provides its services. After all the sessions, two persons approached me as I was packing

241 our things up to leave. “Are you all friends?” a middle-aged woman asked. I smiled and said, “Oh yeah, does it show?” [zametno?]. She replied, “Thank you for making me feel like all this is real”

[Spasibo cho dali mne pochuvstvovat’, chto vse eto realno].

After a month, we had a debriefing session, where all participants of the program

(instructors, volunteers, curriculum developers) were invited to share their feedback and comments. I said that I thought my role was redundant in this program and hope to downshift to the position of tech support. I thought I did not have any unique expertise or experience to share with the audience and that it made more sense for me to bring in another instructor with disabilities.

After a few back and forth exchanges, one of the interlocutors said the following:

For them, you are the scariest person, you are a member of the new culture. And what makes you the scariest [is that you are] its member without disabilities. For them, you are a master of inclusion. A person who appreciates inclusion. This is the most powerful thing about inclusion. An alive individual without disabilities shows incredible interest in people with disabilities. An alive individual without disabilities wants to share this genuine interest in people with disabilities. The question is in how to organize this sharing so that you do not hang yourself. The question is in how to share this interest properly. We work with people with disabilities who love their world. Why are people at the airport so happy? Because the instructors with disabilities showed them how they love this world. In this program, this is a crucial factor. We show our students the genuine interest of a blind person in a world thus lived. The genuine interest of a master of inclusion in the inclusive environment. And we can never drop this. It is our key tool, why our program will forever be ahead of others.

Marina, Oleg, Konstantin, Anastasiya, Svetlana (not me), and another Konstantin, agreed that this role should be kept but perhaps redesigned to ensure that students perceive and learn from this genuine interest. This section in particular, and the entire program in general, was not really about delivering information to the students. It was, instead, about creating an atmosphere, demonstrating a different emotional and affective orientation toward each other and the world.

That’s why White Caners carefully selected the instructors, trying to pick those who were “truly contagious” in their love of this world and disability as being an integral part of this world.

Very often it is said that to implement inclusion, it is imperative to change people’s feelings and opinions about it. One such example is the World Bank’s report Inclusion Matters (2013) which reaffirms the link between social and economic transformations, on the one hand, and the

242 attitudes and perceptions of people, on the other. As people act on the basis of how they feel, it is important to pay attention to their attitudes and perceptions. But if people do not feel one feeling about inclusion, if instead, they are exposed to a vast variety of feelings about inclusion, what and how are we supposed to be changing exactly?

Several months into my fieldwork, I learned that one of the main barriers in the work of my interlocutors was that many nondisabled people didn’t feel like inclusion was in fact feasible— regardless of what was written in the law or what they were obligated to do at work. Disability inclusion in Russia was entangled in a range of diverse feelings, few of which were associated with interest and motivation. Sometimes inclusion was made an object of pride. It featured in the reports of large corporations who provided subsidies to NPOs, schools for disabled students, or directly to people with disabilities in improving their life. This inclusion radiated heroism and hope; hope that a world without unearned suffering is possible. Sometimes, it was hated, despised and feared, when able-bodied ableist parents imagined the horrors of placing their children in inclusive groups, thinking that their children would not develop at a pace they deemed normal.

Sometimes inclusion was feared—for the fear of contamination and contagion of disability and misfortune. Sometimes it was spectacularized and dreamed about—on colorful banners that depict inclusion, as a feature of a tolerant and open, modern society. It was also sometimes approached with shame, for its very existence as a kind of social intervention, shame for living in a society that had naturalized exclusionary attitudes and now needed a reformation. Sometimes it evoked pity, an emotion that nondisabled people often had when they observed a scene or person who they perceived as suffering; this pity may be tormenting, it may be distant. Sometimes inclusion met indifference. Navigating this entanglement, spinning it in ways that delivered the desired results emerged as an important skill for those implicated in the operations of the inclusion complex. But the most frequently encountered feeling that I came across was profound discomfort, experienced

243 by both people with and without disabilities—discomfort of misfitting or witnessing such misfitting and not knowing what to make out of this misfit. Working with and around inclusion is and was a fundamentally emotional experience—where emotions often consumed both participants and organizers, people with and without disabilities, people of different social statuses and commitments. Spinning such emotions, eliciting other emotions was part of everyday work.

This chapter engages with the efforts directed at changing culture through changing perceptual patterns and the emotional resilience of nondisabled persons recruited in inclusion initiatives. It also zooms in on the production of the needed nondisabled subjects who were able to populate inclusive contexts. Through teaching people with and without disabilities to navigate the complex field of feelings associated with disability and inclusion, White Caners aimed at producing new subjects.

In this chapter, I look at how intentional experiences of emotional and perceptual discomfort end up or fail to end up in moving nondisabled people and helping them develop new subjectivities, commensurable and compatible with the model of an inclusive society that my interlocutors have been cultivating.

Hard feelings

As Stepan and I walked into the classroom, the chatter stopped. Stepan told me quietly, with a smile in his voice: “They even stopped breathing, you hear?” Stepan is quick to pick up on the change of mood around him. As a blind educator, he considers this skill his competitive advantage. He knows how to interpret changed intonations, breath frequency, muscle tones, silences, and laughter as markers of feelings and moods. This was our first meeting with the students. And as the students later told us, this was their first meeting with a blind person. The students were nondisabled men and women, personnel of a transportation company that operates a large metropolitan facility. These were people who worked with clients, travelers who arrived

244 and departed at their facility on their way to Yekaterinburg or other destinations. For them, as their administration deemed, it was important to know how to interact with disabled passengers and travelers. Around twenty students gathered in this room in their “free” time, some came here straight from a night shift, and none of them expressed excitement, cheer, or ease when we arrived.

The visual cues I noticed just confirmed what Stepan had sensed, so I added: “Yeah, and they are also watching our every movement” [oni takzhe sledyat za kazhdym nashim dvizheniem].

From the beginning, the students were carefully watching us in silence. Some were overtly and intensely staring at us, others would look away when my eyes would catch them watching us to only focus on us again when I’d look away; the eyebrows of some displayed intense focus and concentration, as if waiting for an attack. They looked stiff and what was most remarkable was that no-one looked at their phone even once throughout this time, so consumed were they with the scene.

We headed straight to the instructor’s desk. This was a regular routine: I showed Stepan the arrangement of objects and how the room was organized, and then he took it up from there. I placed his hand on the desk and the chair, told him that about twenty persons in the audience were seated in two rows in a semicircle around his desk, that the room was a regular meeting room with a projection screen right behind the instructor’s chair, and that I would take care of all presentation materials when he tells me to. After this brief orientation, I left the scene to sit at the back. Stepan took it from there. As usual, Stepan looked sharp and his movements were confident. He walked around the desk, gently touching it with his hand and placed himself right in front of it, facing the audience. He usually presented while standing up, holding his white cane right in front of him.

And he often tried to open up with a joke to ease the atmosphere. On that day his opener was:

“Svetlana, are you sure there are people in the audience? It seems like this room is empty, I’ve

245 never heard people sit so quietly.” People in the audience chuckled, to which Stepan responded

“Well, that’s better, at least you started showing signs of life.”

“In such cases, it’s better to breathe” he continued in a more serious tone. “When we experience hard feelings, we stop breathing well. I know right now you are having those emotions.

So just breathe deeply. In…”—and he inhaled as his chest lifted—“out…”—his chest lowered—

“in… out….”. Some of the people in the audience followed him. Men and women in the audience—mostly middle-aged and with cautious facial expressions—inhaled and exhaled following his pace. “That’s better. I now know that there are actually people in the audience. When you don’t breathe or move, it’s hard to know for sure”—he circled back to his opening joke that now elicited even more shy smiles in the audience.

My blind interlocutors who codesigned this program justify the program’s urgency by pointing at such patterns of interaction and cold treatment that are very common among sighted publics in relation to blind persons in Russia. They say that even ordinary encounters—on the street, in public transportation, in banks, shops, and other public spaces—that involve sighted strangers and new sighted acquaintances are permeated by these “hard emotions and feelings”

[slozhnye emotsii i chuvstva]. These “hard feelings”—fear, confusion, mistrust, squeamishness— stick to disabled persons’ bodies (Ahmed 2004a), although they emerge and circulate in situations shared by both the sighted and the blind. At the end of the day, such atmospheres are a serious factor that weaken attempts to build an inclusive society—people simply do not want to share a society, neither the sighted nor the blind. These “hard feelings” stand in the way of making inclusion a value as opposed to a legal prescription and obligation. Thus, my interlocutors’ primary target of intervention is their fellow citizens’ capacity to experience inclusive settings and interactions not as fearsome, catastrophic, or unpleasant but instead as beneficial, valued, and enjoyable. This is the way, they claim, to build an inclusive society.

246 In her article Collective Feelings, Sara Ahmed (2004b, 27) writes: “What moves us, what makes us feel, is also that which holds us in place, or gives us a dwelling place.” Ahmed argues that emotions align some bodies together and orient them in relation to other bodies; they map out social spaces by grouping and distributing places of belonging; they propel movement and channel differently aligned subjects into different life paths. Thus, when felt and acted upon, emotions make up groups, make up exclusions, make up alliances. Although historically shaped—in that subjects come to experience emotions as skilled and experienced—they are also history-making.

Historically, the lives of blind persons in Russia were channeled into separate spaces, which manufactured ignorance among the nondisabled population on how spaces and lives may be shared and inhabited together. Special dorms, special workplaces, special schools, and special leisure sites, on the one hand, provided some accessibility infrastructures for blind individuals in otherwise inaccessible cities. On the other hand, the concentration of those infrastructures and accessible services in special areas prevented encounters between sighted and blind individuals and practically channeled their lives through different itineraries. Similar practices of moving people with disabilities who were engaged in petty trade after World War II into special zones and areas further circumscribed their presence and thus prevented ordinary encounters with others and prevented any accountability of the nondisabled on the ways they build and order social spaces.

Besides enabling the state to subject veterans to mistreatment and labor exploitation, this governance strategy further naturalized the view that regular society is not the place for disabled people. In this way, longstanding practices of segregation have prevented the formation of the social practice of sharing spaces—there are no patterns of common-sense knowledge regarding how to live in a shared world, which now, under the ethical obligation to live in an inclusive world and with no proper training on how to do so, means that people experience discomfort, fear, threat, and even disgust.

247 When my blind interlocutors and I entered the room, the mood would always change. Soon after, I would notice the difference in the ways we would be treated: as a sighted person, I always received different treatment compared to my blind companions. My capacity to maintain eye contact and perceive visual cues would position me as a recognized and relatable subject for the sighted audience: although I would notice that they would censor their actions more (given that I saw them and could share my observations with my blind companion), I also sensed they were relieved they had an option to interact with yet another sighted person—if they needed to ask something, they would more willingly approach me, not my blind companion, even if the question concerned the expertise of my blind companion. As Seth Holmes (2013) writes, the anthropologist’s body and the way it is treated in the field helps unpack power differentials that constitute the scene. For conversations outside the training itself, for questions and chitchat during the break, I was the preferred option. Even when they addressed my blind colleague, I would often catch looks that sought to double-check if they asked a correct thing or at least in a correct, polite way. They would also feel freer to run parallel errands that would require their visual attention without alerting their blind interlocutor that they were distracted with something else. When I would notice them do so—play on their phones, send messages, read some documents, or organize something with other members of the audience through gesturing at each other—they would smile mischievously and gesture to play along, as if we, the sighted, shared something, as if we were playing on the same team. Such happenings needed the presence of both—the blind and the sighted. Without my blind companions, I have not experienced bonding with strangers over our ability to see.

During the break, Stepan usually asks someone to show him where the bathroom is. Often, people stare at me, as they assumed that I would be the one responsible for showing him the way.

And I would smile back motionless, making it clear for them that this is another exercise, that this

248 is part of their training. That day, a woman from the front row volunteered: “I’ll show you,” she said while standing up and approaching Stepan. Four other students who stood nearby stopped chatting and looked at her, making this into another scene to witness. The woman’s voice was bright and confident. “How will we go?” she asked. “On foot [nogami],” Stepan joked. “Give me your right shoulder,” and he lifted his left arm in the air parallel to the floor with his palm down.

The woman caught it immediately, placing her right shoulder right under his left palm. She stood stiff for a second, and so Stepan made her turn from side to side, while he himself bent his knees in a caricature attempt to perform a funny dance. The action made her loosen up her posture. “So now, after this dance, we can go.” Stepan achieved what we wanted—now as they walked, they chatted and the conversation flowed at an ordinary pace. When they arrived at the entrance to the bathroom, the woman stopped and looked around. “Vova, come here and help us!” she called for one of the four observers. Vova stared back at her and froze for a second. “Come on, come already!” she insisted, so Vova went to them. “It’s now your turn, I can’t go in,” she smiled in request of switching, as the bathroom was gendered and she refused to enter the one designated for males. As Vova was about to make the first step, Stepan lingered a bit, and then asked him “[Is it] frightening? [Strashno?]” Vova answered stolidly, “Not really [da net]”. “But you stand as if it is [A stoish kak budto strashno],” Stepan smiled, which made Vova smile too. Thus, they took off.

Stiffness of the students is just one side of an entire spectrum of “hard feelings” that my blind interlocutors point out. On the other side, there is pity and the felt experience of tragedy. On the very same day, Oleg had one such encounter which he told me about on his way to work. He lived not too far (by Yekaterinburg standards) from the office and preferred to walk from his home to his workplace. With an iPhone in his left hand, a white cane in his right hand, wearing an expensive shirt and overall looking smart and well, he gave himself about forty minutes to reach his workplace. Not even five minutes had passed until an elderly woman approached him and

249 offered him a hundred-ruble money bill (which at the time amounted to about $2.50). Her voice trembled, she started lamenting how hard his life was and how the state didn’t support people with disabilities well enough, if at all. Oleg thanked her for kindness but refused the money, saying that he worked and in addition to that received disability pension. She disregarded his words and placed the bill into his jacket’s left pocket. She then continued complaining that her pension was very little and that she didn’t have enough money to buy all necessary medication (which is a typical situation for pensioners in Russia). Oleg took his wallet out and handed her a thousand-ruble bill.

She didn’t accept it, saying, Son, you need money more than I do; I, at least, can see a bit [synok, tebe dengi nuzhny bolshe. Ya-to khot’ chto-to vizhu]. When he was telling me the story, he added:

“And you know, they don’t even see that I’m dressed better than them. That I have an iPhone in my hand. They just don’t see this.” These sort of ordinary encounters on the streets are not extraordinary for Oleg and my other blind interlocutors. Time and again I would hear anecdotes about a blind walker running into a crying stranger who would pity them and try to give them money. And it would be close to impossible to convince the nondisabled strangers that their reading of the situation is far from the truth: that the blind person is doing just fine and is not experiencing any suffering or existential crisis at the moment. In such encounters, the roles seem to be assigned and not easy to change: the only subject here is the nondisabled stranger, who meets the blind person who immediately becomes a victim, a sufferer, an object of care, and an aid recipient. Despite my blind interlocutors’ actions to break through such readings and disrupt such situations by reasoning and claiming that they are fine and capable, such encounters configure and reinforce the sighted’s inclination to pity blind subjects and expect their collapse at any given second. In subtler forms, similar interpretations and thus a bodily orientation occurs in situations in which sighted service providers prefer to speak and communicate with my blind interlocutors’ sighted companions, in which overprotective sighted strangers make blind pedestrians unwillingly

250 cross streets, in which the sighted do not consider blind individuals as potential colleagues and peers, and in which sighted persons have no expectations that a blind person may excel and be better than them in ordinary and extraordinary activities.

Feelings that mediate social encounters is the substance of my interlocutors’ cultural engineering project. They interpret “hard feelings” that the disabled and the nondisabled experience in relation to each other as counteracting the movement toward inclusivity. Pity, tragedy, fear, unease, reluctance, and discomfort as experienced and reproduced by the sighted toward the blind are perceived by my blind interlocutors on various occasions. Displacing the feelings about being in a situation—fear, disgust, pity, tragedy, unease, discomfort—makes them become the qualifiers of the perceived, that is, the blind person. Thus, fearing/disgusted/pitying sighted individuals misplace the feeling and thus make blind people fearsome/disgusting/pityful.

Joseph Hankins (2013) observed a similar pattern in his research around Buraku people in Japan— who constitute a major labor force in Japan’s leather industry—as they become stigmatized and perceived as disgusting by being bundled with the nauseating smell of tanneries. In a similar vein, those hard feelings become characteristics of blind persons, who, as a consequence, struggle to be recognized as equal subjects and fellow citizens. In the forthcoming section, I review scholarship on sensory perception and feelings associated with different patterns of perception, to introduce more distinctions and nuance to the work that my interlocutors undertake.

Feeling ‘it’

Much has been written about the significance of the physical accessibility of the built environment in creating inclusive settings (Charlton 2000; Hamraie 2017; Hartblay 2017;

Williamson 2019). However, little is known about the attempts to engender changes to make inclusion feel differently. Feeling welcome and equal and entitled to the same space is a crucial component in remaking political and social spaces; here, inclusion and accessibility meet.

251 Through sensory perception, humans are embedded in the world (Merleau-Ponty 2002).

Paying attention to subjects’ sensory lives allows us to see ways in which the body indeed appears as “the very ‘stuff’ of subjectivity” (Grosz 1994, ix; see also Csordas 1993). Sensory perception informs cultural categories (Geurts 2003) and ways of knowing (Hammer 2017; Oakley 1994), which grow and develop together as a symbiotic material somato-semantic entanglement (for the argument on co-development of the body and its environment see Ingold 2000).

Cultivated sensory practices and orientations make up persons and collectives (Ahmed

2004b; 2006). Manufactured and shared sensory experiences make friends and enemies (Stoller and Olkes 1986)—they bind sociality together (Throop 2010) and demarcate boundaries to be crossed, inhabited, or never trespassed (Hankins 2014). They serve as a mechanism to produce and circulate affective attachments (Denyer Willis 2018) with ethical and political effects (Redfield and Robins 2016) and/or serve as grounds for religious and morally significant experiences

(Brahinsky 2012; Denyer Willis 2018; Luhrmann 2004). One’s capacity to perceive and sort through sensory perceptions serves as a way to ensure the continuity of one’s personhood despite ongoing bodymind changes that may threaten one’s feeling of the self (Buch 2013). Sensory perceptions anchor memories (Seremetakis 1994; Sutton 2006), communal and national belonging

(König 2013; Hankins 2013; Hazel Perez 2014; Newcomb 2013; Roth‐Gordon 2013), and moral personhood (Throop 2010; Trnka 2013). Anthropologists of the senses looked into how sensory orders vary across cultures (Edwards and Bhaumik 2008; Geurts 2009; Howes 2003; Trnka,

Dureau, and Park 2013) and eras (Classen 2012; Classen, Howes, and Synnott 1994; Smith 2007).

People learn to organize and make sense of their sensory being in the world through participating in communal life, repeating, experimenting, trying, and failing (for the theory of iterability in subject formation see Butler 1993). Through ongoing practice, individuals learn how to hear (Erlmann 2004), to see (Grasseni 2007), to balance (Geurts 2009), to experience and share

252 pain (Throop 2012), to taste (Petrini 2003; Vannini et al. 2010), and so on, all of which take place in sociomaterial environments and constitute the corporeal horizon of social life.

Perceiving is acting (Ingold 2000). To describe sensory perception, anthropological scholarship on the senses evokes the metaphor of sieving through an immense flow of perceptual data and organizing this flow under meaningful categories (Breton 2017). Through such selection work, humans shape the world in which they dwell. Although united by their capacity for such agentive work, persons’ power to engender consequential changes in the environment they dwell is significantly affected by the social distinctions and differences at play. In other words, some people get to be privileged to shape their worlds with far less effort than others; some people’s sensory patterns matter and flourish while those of others remain contained; some people get to decide sensory strategies while others are placed into a position of figuring out their somatic tactics to communicate with or go around them (de Certeau 2011).

Despite the fundamental uniqueness of individual sensory perceptions, some differences in sensory regimes make up for an impairment or a disability. Blindness is one such sensory regime.

The dominant understanding of blindness in Russia these days is that of impaired eyes, eyes that don’t see. The logic of such a definition leads to thinking that blindness is a bodily condition that makes a person unequipped to live a safe, enjoyable, full life. On different occasions throughout my fieldwork, I asked my sighted acquaintances and friends to describe their first impressions and associations with blindness and I ended up with the following: “don’t see,” “are not mobile,” “need constant assistance,” “darkness,” and a few “I can’t even imagine how they live.” Despite a century-long history of VOS priding itself in providing avenues for blind citizens to remain productive and thus socially valued throughout the twentieth century, in everyday speech these sighted people demonstrated an ignorance of any positive effects that blindness produces in one’s life. Blindness, in this logic, made a person an exemplary object of charity.

253 This reading of blindness is common in many parts of the world that do not share Russia’s history (J. M. Hull 1990; Kleege 1999; Rowden 2009). Thus, blindness understood as a lack and a deficiency—here, a lack of vision, which is considered to be a vital sense to navigate the everyday—cultivates ignorance about the forms of life that unfold when the sensorium operates with the use of other channels. Such negative definitions affect people. They carry sensations and feelings about blindness—fear of being paralyzed and dependent, mostly. They carry the incapacitating feeling of tragedy that apply indiscriminately to any person who qualifies as blind, regardless of their experiences (for an account on a link with disability and a moral tragedy that comes from the experiences of mothers of children with severe disabilities, see Mattingly 2014).

Thus, in practice, these feelings and fears translate into strong assumptions among the lay sighted that they occupy a cognitively superior position, they are more productive (as in more employable and socially useful; a producer as opposed to a consumer), more independent, and worthier (for the concept of ontologies of worth, see Chen 2012).

These seemingly spontaneous reactions to blindness can be categorized as ordinary affects that are stuck to blindness. Kathleen Stewart defined ordinary affects as follows:

the varied, surging capacities to affect and be affected that give everyday life the quality of a continual motion of relations, scenes, contingencies, and emergences. They are things that happen. They happen in impulses, sensations, expectations, daydreams, encounters, and habits of relating, in strategies and their failures, in forms of persuasion, contagion, and compulsion, in modes of attention, attachment, and agency, and in public and social worlds of all kinds that catch people up in something that feels like something.” (Stewart 2007, 1–2)

As public feelings, ordinary affects circulate between bodies, they stick and move. They push one to experience something, become dis- or reoriented. They are material intensities that reside in between things and meaning.

Literary scholars and anthropologists have explored the domain of public affect and emotions at length, here I only bring a limited number of useful references. Drawing inspiration from Baruch Spinoza and Gilles Deleuze, Brian Massumi conceptualized affect as “a felt bodily

254 intensity, the feeling of having a feeling, a potential that emerges in the gap between movement and rest” (quoted in Rutherford 2016, 286). In his rendering, emotion is culturally specific and imbued with meaning; affect, in turn, is what fuels emotion but what cannot be exhausted and contained by it. Affect is the intensity, experienced at the level of skin, it is asocial but not presocial: “it includes social elements, but mixes them with elements belonging to other levels of functioning, and combines them according to different logic” (Massumi 1995, 91). Emotion, on the contrary, is qualification and a linguistic expression.

Mazzarella (2010) and Hankins (2013) critique the neovitalist distinctions between unmediated affect and mediated emotion. I agree that there is no way to know how to draw this line and what this line does in fact. This line does not matter in my research and has not surfaced in my research. It is not mediation that mattered for this distinction, but instead, it was one’s capacity to name their feelings, reflect on them, and do something about them. Hankins (2013) suggests the concept of ecologies of sensibility, in order to capture complex entanglements between affect and representations. Hankins argues that “the experience of qualia are always mediated through particular modes of sensibility and lodged in larger ecologies” (2013, 52). He relies on Charles Sanders Pierce’s concept of qualia “as experiential instantiations through which abstract potentialities called qualities are known” (Hankins 2013, 52). I find this a useful concept, because this will enable me to speak about particular observations and perceptions that the sighted select and emphasize, thus constituting the figure of the blind, or even the personhood that blindness affords. As Hankins argues, what one picks out of the sea of perceived information is mediated by broader social and political projects, it is fundamentally historical and history-making.

In this, my interlocutors’ emotional training becomes a platform, a site where history is being

255 made, where they produce different experiences, where different qualisigns41 are produced and are added to the palette.

Rosemary Hennessy (2013) also disagrees with Massumi’s interpretation of affect as something that escapes the plane of social relations—for Hennessy, “the materiality of affect- culture is infected by the social relations through which needs are met and produced” (2013, 50).

Social relations constitute a fundamental part of the individual, it is impossible to abstract one from their class, race, gender, dis/ability, and sex positionality. Postulating the possibility of asocial experiences, according to Hennessy, would direct attention to a nonexistent plane of life.

Previously experienced and current power relations one partakes in have shaped their perceptual abilities, too. In this light, conceptualizing affect as universally picked up and shared, and reliant on the idea of a universal body, would obscure more than it would illuminate. Additionally, she contends, through the perception of affect, one becomes formed as a particular kind of subject.

Affect is not free from power relations, we learn from anthropologists: instead, the state is one of the primary producers of affect (Masco 2014; Mazzarella 2013; Navaro-Yashin 2012; Stoler

2007), although not a monopolist. Through cultivating sentiments as diverse as happiness (Ahmed

2010), cruel optimism (Berlant 2011), and depression (Cvetkovich 2012), the public gets recruited into particular regimes of feeling.

Making use of these cultivated and emergent affects and feelings experienced by sighted individuals, my blind interlocutors exploited their productivity, in order to constitute intersubjectivity. Situations when ordinary and extraordinary bodies meet (Wool 2015) are usually complex. Complex emotions, complex bodily orientations, and complex considerations are all at play. In this particular case, Stepan detected uneasiness in the audience and in people he interacted

41 Qualisigns here mean semantic tools that attribute specific meaning to experienced qualia.

256 with, which he labeled as fear. Yet fear is certainly only one of many other ways to contain this experienced uneasiness.

I would often sit in those classes, off to the side, observing its unfolding and giving a hand when needed. Sometimes people would start chatting to me instantaneously during the break, saying how sorry they are that Stepan lost his vision. “It’s a pity… [tak zhalko]” would be an ordinary phrase through which they would open the conversation, often with the intent to know how he lost his vision and expressing their deep-seated feelings of pity, sadness, and anxiety in the face of how randomly fate allocates disability in this part of the world, among these people. “He is such a normal guy, and this…[I ved’ normalnuy muzhik, a tut takoe…]”

To be clear, I do not argue that as a result of taking this program the students indeed feel differently about disability and meeting disabled persons, be they blind, deaf, or having any other disability. Instead, I view this program as a series of small situations and sites where new affects are produced and familiar labels are challenged and made unhelpful. Through embodied experiences of different sensory capacities, through bodily engagement and humorous exchanges,

Stepan makes it possible to imagine a world in which disability may be something other than a tragedy or scandal.

In my research, I found relevance in this moment when always-already-social persons experience something that they cannot yet name or process. They can’t name or label it, and this serves as a productive domain in which my blind interlocutors work. They make this domain of the yet-unnamed a capacious domain of something to-be-named. They keep inviting people to think more about their experience, see if the emotional spectrum they know may be applied, and see what this emotional experience produces in the sensing subject and the world around them.

Thinking about feelings and talking about them becomes a way to constitute and articulate feelings other than fear and disgust.

257 Vera Igorevna, the head of a disability NPO, put it in a pithy way:

To people without disabilities, inclusion affords extra strengths and inspiration and a new perspective for solving some issues that used to seem unsolvable. If a person perceives the world slightly differently, they can show you different aspects of this world. This means that our world gets enriched, very much. But for this, I have to admit at some point that I don’t understand everything in this world. That how I perceive this world is not the ultimate, real world but just my perception.

For the sighted, this is a journey of discovery that there is a world, thick, tense, different, that thrives and unfolds when one is blind. They discover that differently organized sensing bodies experience the world in no less rich ways, and that there are sensations that a sighted person doesn’t have access to, because of their sight.

Include yourself

The common Russian translation of the term “inclusion” is vkluchenie (or, sometimes, inkluziya). Usually, in contexts that concern people with disabilities, vkluchenie is straightforwardly read as inclusion. Taken more broadly, however, vkluchenie works as a homonym: first, it means making something a part of something broader; second, vkluchenie means switching on, in the way one may switch on the light. In search of a deeper understanding of the ways in which inclusion works and materializes, White Cane found inspiration in such an etymological gem. They used Vkluchi sebya (or its shorter counterpart vluchis’)—“Include yourself!”—as a slogan in campaigns to promote inclusion through capitalizing on this wordplay.

It is an imperative that simultaneously means “make yourself included” and “switch yourself on,”

“activate your attention, capacities, talents, mobilize the resources you have.” Inclusion as vkluchenie, then, is a principle that capitalizes on this double meaning: when people with and without disabilities come together, it requires not only the involvement and participation of those who used to be excluded (i.e., disabled persons) but also all participants’ activation, their going beyond the everyday minimum, the mobilization of inner resources, and going outside their

258 comfort zones. This activation is about persisting in one’s resilience in the face of experienced discomfort, in the face of experienced hard feelings. It is about finding resources—skills, abilities, external resources, support, or help—in dwelling with this discomfort and letting it move everyone who partakes in the situation. Inclusive settings and alliances enable both disabled and nondisabled individuals to grow through their very capacity to work through the barriers that precede their relationship.

Those skillful in such mental resilience and those who learned to transform this discomfort or couple it with interest, would be what White Caners called inclusive persons and masters of inclusion. In Russian, the combination “inclusive person” (инклюзивный человек) is grammatically erroneous. As per grammatical rules of Russian language, “inclusive” works as a descriptor of a setting, process, or a background but not of agents. And yet my interlocutors insist on using “inclusive” to qualify a person. In 2015–2017 they published a journal with a Russian title “Inclusive Person” (“Человек инклюзивный”). The journal covered the topics that ranged from personal stories of persons with disabilities who they qualified as inclusive and active, to the inclusive economy, international inclusive practices, and interviews with people recognized as promoters of inclusion worldwide. Across various regions, White Caners and allies hosted seminars, the purpose of which was to speak with the public on how to become an inclusive person.

Written instructions on how to become an “inclusive person” were posted online for public viewing. Contests of who may be granted the label of the most inclusive person at an event took place. This insistence on making and naturalizing the phenomenon of “inclusive persons”— persons who have appropriate values, characteristics, and skills to dwell in inclusive settings— draws my interest here.

In 2016 and 2017, along the lines of this proliferation of expert knowledge, practices, and relationships, my interlocutors were working on creating a job description for what they conceived

259 to be a new emerging occupation that would soon be in high demand in contemporary society—a master of inclusion, that is, an organizer of inclusive communication. Their intent to incorporate the master of inclusion into the spectrum of conceivable and practiced occupations is congruent with their idea of inclusion in general. They envisioned the master of inclusion to be a conceptual opposite to a social worker, a figure who would stabilize the emergent field of inclusion as a practice commensurate with neoliberal markets and a collective ethos, at the same time.

To address the formation of “inclusive persons” I look into the constitution of intersubjectivity among sighted and blind individuals and the environment for their collective dwelling they qualify as “inclusive.” At stake here are sensory and bodily differences of blind and sighted participants and the ways in which their corporeal capacities are exercised, tuned, and cultivated toward being-with each other. In examining how sighted and blind individuals attune their sensory practices to work with each other and what happens when they attempt to constitute and recognize each other as subjects, I seek to understand how they remake their environment to be shared and inclusive through focusing on reshaping the practices and experiences of feeling.

Refiguring affect

Several White Caners jumped on the bandwagon of the activities in the dark. At the moment of my fieldwork, activities in the dark were mushrooming around the country. Guided tours in the dark or dinners in the dark were opening in venues in Moscow, Saint Petersburg,

Novosibirsk, Yekaterinburg, Tomsk, Perm, and other Russian cities. The descriptions of these services frame them as “intriguing” and “exciting”42 experiences that are “social and sensual”43 and that “open your eyes to limitless human abilities”44. Advertisement messages seduce their

42 https://progulka-v-temnote.ru/ru, accessed on 9/18/2018 43 https://vk.com/danslenoir, accessed on 9/18/2018 44 https://vk.com/smotri__serdcem, accessed on 9/18/2018

260 potential audience through associating their services with mystery and enticing suspension. Almost all of them—with the exception of the one in Novosibirsk—publicize the fact that their guides are blind, presenting it as their competitive advantage and a warranty for a careful and quality service in the dark. Almost none of them hosts or produces any disability-related social critique, with the exception of Mir na oshup’ (World through touch), a Saint Petersburg–based project singular in its connection of their services to the experiences of blind persons and overtly stating that they aim for the “development of tolerance in society toward blind people”45. The majority of such platforms, however, do not promise their potential clients any mock-blindness experiences and, instead, produce advertisements of sensory self-exploration. They promise the potential customer to “discover their own new facets and notice that which goes unnoticed by others”46 and claim that

“darkness allows one to truly open up and frees one from their preconceptions”47. All these services and projects capitalized on the uniqueness of blindness as a different sensory condition which offers an unconventional approach to familiar matters. These projects offer an opportunity for the sighted visitors to engage with unfamiliar barriers—the world not accessible through vision—and experience this engagement with these barriers as supported, fun, and self-developing.

By framing interactions between blind and sighted individuals as service provision and as exciting, these platforms contribute to the cultivation of the figure of the blind person not as exceptional and marginalized, but instead as a professional and reliable care provider to the sighted. Several guides from such projects whom I interviewed during my fieldwork voiced their appreciation of occupying such a role—considered at a broader scale, opportunities to occupy a position other than that of a helpless object of care are scarce and hard-won. Projects that involve

45 http://touch-world.ru/, accessed on 9/18/2018 46 http://temnota-nsk.ru/, accessed on 9/18/2018 47 https://vk.com/danslenoir, accessed on 9/18/2018.

261 guided activities in the dark frame their blind workers as skillful and enabled by their experiences of blindness.

My friend Zhenya volunteered some questions that sighted visitors of their project posed to her. Among them were if and how she washes her hair, if and how blind people have sex, and if and how blind people spend money. While sharing these questions with me, my friend was torn.

On the one hand, she was chuckling because such questions, in her opinion, showed how ill- informed and ignorant their sighted visitors were. On the other hand, she quickly added that laughing at these questions or discarding them as stupid only did a disservice to everybody. When unanswered and unaddressed, they only exacerbate the ideology that cultivates the figure of the blind person as helpless and unreliable. Thus, Zhenya told me, regardless of how laughable a guide finds a question, it is advisable to address it gently and politely, being careful not to hurt or irritate the visitor. For, not to forget, there is always a risk of falling into the well-established category of that quarrelsome disabled person who discharges massive critiques on the nondisabled for all the ills and injustices they have to go through because of their disability. Blind guides are antithetical to this figure—as mandated by their employees and supported by those blind guides themselves: blind guides do not complain or dump any social critique on the shoulders of their visitors, the tacit rule goes.

It is vital for these experiences to generate positive and light emotions in their visitors. In the guidelines for aspiring blind guides, written by an experienced blind specialist from the capital project in the dark, they suggest the following:

Remember that the guests came for new impressions, knowledge and good mood, that is why they are curious about everything, and yet they hardly want to hear about the hard life of blind people. At the same time, personal stories always are quite popular. Your answers and stories should have positive coloring. Often, it is necessary to show our guests that blind people are just the same humans. They have their beloved job, family, friends. They also encounter difficulties at work or at home—just like others. And to tell how blind people manage to be just like others. (http://extrability.org/home/materials/in- the-dark/excursions-in-the-dark/, accessed on 9/18/2018 )

262

These guidelines suggest that in this setting, where blind professionals cater to the needs of their sighted consumers, there is no place for social critique of the conventional sort and the emotions associated with the figure of the angry disabled person. When offering such a framing of blindness, such platforms create opportunities for sustained encounters between blind and sighted adults that bypass the rhetoric of charity and avoid falling into the familiar emotions of fear, discomfort, and pity. Through these encounters, blind guides practice prefigurative politics, or “the embodiment, within the ongoing political practice of a movement, of those forms of social relations, decision- making, culture, and human experience that are the ultimate goal” (Boggs 1977). Instead of entering the agora with other participants (here, their nondisabled clients) and presenting their articulated claims and demands about distribution processes, they operate at the level of the body, charging bodies with ideas and feelings, moving them, in and out of their comfort zones, to cultivate modes of dwelling together, included. Here, Tomas Matza’s (2018, 109) concept of critical complicity is helpful to grasp the transformative potential of such work with the public.

Critical complicity captures the feature of simultaneous work with the privileged elite (within a broader system of unequally distributed citizenship rights) and an attempt to change their elite, prime it to redesign or at least affect the social in positive ways. Critical complicity participates in the system’s production yet in a way that slightly alters the system.

At the same time, these instances produce some subjects as empowered. Among my blind interlocutors—who come from poorer and wealthier backgrounds, although all are ethnically

Russian, all are young, and have no other disabilities—the profession of a blind guide was well- respected and considered worth aspiring to. It provided an ability to identify as a professional, akin to a manager, an accountant, or an engineer—which squarely located them within the hierarchies of neededness, as well as within the contemporary productivity regime. By being conspicuously

263 associated with the sphere of “service and experience”—something that has been prominently contraposed to manual unskilled labor -- distanced them from the stereotype that blind people are a perpetual “social case” (Friedman 2009), someone who belongs to the domain of state support.

Blindness thus presented is commensurable with neoliberal markets. Michele Friedner

(2015) argues that disability is prone to exploitation by market forces—through the extraction of added value associated with the inclusion of people with disabilities in labor force. Although due to the nature of smaller businesses and the kind of work that blind guides do, there is substantial potential for the diversity of activities and the kinds of labor that can be done here. It is an

“interesting” and capitalizable disability which with proper training indeed may be turned into an asset. This does not apply to many other kinds of disabilities that are embedded in very different ecologies of sensibilities.

Round Table

One of the prominent ways for the blind members of White Cane to provide care was through participating in programs for a regional rehabilitation center for people with drug and alcohol addiction. White Cane and the regional rehabilitation center initially partnered for smaller collaborations in the framework of which blind persons would come to the center and lead an activity for a group of those who have completed the “medical stage” of their recovery process.

Among these activities were sports competitions, team building exercises, public presentation workshops, games, and walks around the center with the help of a white cane and a blindfolding mask. Over time, the collaboration expanded and shifted from being about shared pastimes and entertaining activities to be more about going through socially and personally challenging activities. Blind White Caners trained in life coaching and psychology would design short-term programs that would consist of exercises about opening oneself up to strangers, admitting to one’s past mistakes, and sharing one’s hopes and plans for the future. The idea behind this partnership

264 was that blind people who have learned to live in an ableist and ocularcentric world have developed valuable insights and skills that would be helpful for people recovering from alcohol or drug addiction. Both blind people and people in recovery were imagined to be facing similar challenges of having to deal with social stigma (often internalized) and the absence of existing structures that would enable them to easily build professional careers and develop thick social networks conducive to a fulfilling life. Learning from a blind person who was familiar with the challenge of social marginalization was considered to be helpful and empowering. I attended several such activities, many of which took place in the dark. In this chapter, I engage with a round table discussion in the dark titled Responsibility as a Resource and led by my blind friend Misha in

White Cane’s office.

I knew some of the people present at that day’s discussion as they were returning participants of White Cane’s activities. Those who knew me and some of the other staff felt a bit more at ease. They knew what to expect from Misha and, broadly speaking, they were familiar with how quickly they would be invited to share their vulnerabilities with each other and other participants of the round table. Those who came to White Cane for the first time were noticeably nervous—some excessively loud, others fidgety and restless. As I was handing out blindfolds to each participant (we were supposed to go to the dark room with blindfolded eyes), Misha made an announcement:

We are used to thinking that responsibility is some burden. But we have to make an effort to transform responsibility from a problem to something that helps us live, to something that improves our life. This is what we will be discussing today.

With this alert, the participants put the blindfolding masks on and stood one behind another, placing the right hand on the right shoulder of the person in front. When everyone was in line,

Misha confidently walked to the front of the line to be the person who would lead the entire group to the dark room. Not used to such a strange form of mobility—blindfolded, not seeing, in tactile

265 contact with a random person in front, following someone’s bodily movements—several participants giggled with discomfort and asked how long they would go on like this. As the journey to the room took this train of people from one building to another, up and down stairwells, and through a maze of turns, some kept cracking jokes about how funny they looked to strangers, others mentioned they felt discomfort and wanted to know when this would be over and if they would be able to find a way back. Misha only responded giggling, “There is no way back” [Puti nazad net].

“There is no way back,” although put in a joking form, in fact captures the desired reality for Misha and other White Caners. As designers of inclusive activities and events, they aim at moving their audiences, partners, and collaborators to the extent that this move triggers changes in the lives of the latter. Although the description of this round table does not alert its participants to the challenges that would await them and instead promises a rather boring pastime, every element of this activity is designed to destabilize and eventually move them, emotionally, out of their comfort zone, toward something yet unformed and unknown. The sensorially challenging conditions in which this round table is held—the long-term silence or long-term talking (depending on the role they choose), the new communication and mobility patterns, the flipped relationships of expertise, following the lead of a blind person, and being present for others in the moments of vulnerability—were carefully curated by my blind interlocutors as these experiences would ensure that there would be no way back for those who showed up for that event.

It took us about five minutes to get to the room. All this time, we only used our hands, feet, skin, ears, noses, memory, and general intuition; no eyes. In the room, every person had to find a chair, put their chair in either the inner circle or the outer circle, and then sit down. The inner circle would be for those who choose to be the speakers. The outer circle would be for those who commit to be listeners and keep silence throughout the event, until the moment when they would be given an opportunity to give feedback. It took five more minutes to arrange the seating. And then ninety

266 minutes of the intense guided conversation where six people out of twelve would be sharing their moments of irresponsibility, responsibility, and reflections on how to reorient themselves in relation to others. All in the dark.

For sighted people, being in the dark is disorienting. It is challenging to gather thoughts, express them in a coherent manner, and stay awake and alert while listening to others. Now imagine adding the sensation that we are in a confession booth and that everyone is summoned to help the confessor process their emotions and experience. Here, falling asleep means something.

Instead of being a physiological reaction, it becomes a sign—of not caring enough, of not being willing to listen, of not agreeing to “being there for the other.” Add to this that all participants know each other and that they can easily identify one another by voice. Finally, in this setting, people are sharing their moments of vulnerability—they talk about failures to meet expectations, betraying someone’s trust, acting irresponsibly. Together, these factors make this round table a challenging experience.

As everyone found a seat and listened to Misha explain the rules of the round table, someone sitting to my right reached out to me and asked permission to have their hand lay over mine. They whispered that they felt scared and feeling the presence of another person would help them cope. I gently patted their hand in agreement allowing this touch to linger for as long as they needed. We were sitting close to the wall, in the outer circle, having committed to be the listeners, who wouldn’t interrupt and instead would just offer their thoughts at the very end. The speakers, in contrast, were invited to participate in five rounds of talking: (1) share a moment they acted irresponsibly; (2) explain what prompted this irresponsibility and what benefits they saw in acting in such a way; (3) share a moment when they took responsibility for something and enjoyed it; (4) provide a reflection about what made this success possible; (5) explain what they learned from others and what advice about how to make responsibility enjoyable they would give to a friend.

267 The conversation was intense. Someone chose drinking over picking up their child from daycare and the child had to spend long hours alone with a guard. Another person ghosted their friend and refused to help them once a possibility to consume drugs resurfaced. Another speaker talked about the regular disregard of their parents’ request for help because nothing seemed to matter in that period besides drugs. The tone changed, although not the intensity, when speakers started talking about moments when they managed to stick to their commitments and acted responsibly. Someone had helped a person they loved with taking the child of the loved one to a speech therapist long enough that the child managed to dramatically improve their ability to speak.

Someone else shared that they were able to stop themselves from consuming drugs and alcohol during pregnancy, to ensure that their baby is born without additional health problems. Another person talked about a day when they went out of their way to help an out-of-town friend get to their train on time, despite a series of unlucky coincidences. Time and again, Misha would thank the speakers for their openness and remind them that their ability to reflect on their experiences, no matter how bad those experiences were, indicated their ability to help them next time an occasion to act responsibly arises. “In particular, I appreciate that all your stories are complex, that in all your stories you had to make an effort to achieve something. When things work out by themselves, there is no responsibility involved.”

During the final ten minutes, Misha invited everyone in the room to share their thoughts— about the format of this conversation, about ir/responsibility, about how they felt. Amidst regular comments about how unusual darkness feels at the beginning and how normalized it gradually becomes over time, about how this experience felt new and strange because of not having access to phones and social media, about how hard or easy it was to concentrate and follow the conversation, about how important it is to stick to one’s priorities and goals, and about how valuable the moments of reflection are, someone said that they wished that words would actually

268 have the power we hoped they had. That no matter how deeply they felt these words right then and there, they just knew that outside these words and feelings wouldn’t change anything.

After the roundtable, when the group was about to leave, I had a brief chat with the last speaker. I asked them what they thought about the round table. They responded that they kept coming back because during these meetings they got to learn a lot about themselves, they got to hear about other people’s struggles, and they got a chance to help others in going through this hard period of their lives too. They got the feeling that now they understood, that now they knew better, that now they would do better. But then when they would step out of this space, these words would lose their power, they would disappear in thin air, and this determination would surrender to the tremendous inertia of this person’s material life—their body and mind that was trained to get intoxicated regularly, their inability to feel excited and driven, their inability to secure a good and stable job, their friends and acquaintances that “knew” them and had no expectations of them, and their attachments, choices, commitments, things. And they said that all they really, really wanted was to find out one day how to give power to words.

How to change people?

Social theory, philosophy, and anthropological research have different theories to address these questions, all suggesting a variant of a conceptual edifice that would explain the link between the material world and ideas—how words come to matter. These different theories would provide different assessments of the situation in which my word-doubting interlocutor—whom I call here

Alex to maintain their unmarked gender—found themselves, having gone through all sorts of bodily, sensory, affective, and performative triggers and not having been moved, or having been moved but then later lapsed again. Alex’s frustrations come from a series of word failures—the failure of their own commitment to move themselves, the failure of proclaimed ideals to change

269 anything, the failure of labels to bring about thicker relationships, and the failure of a resolution and an ethical valuation to be portable.

In his book How To Do Things With Words, J. L. Austin (1962) offered an analysis of how words may come to matter (in cases when we use normal speech acts)48. Austin distinguished between constative and performative speech acts, whereby the former takes the form of a report that may be qualified as true or false and the latter takes the form of a statement the utterance of which is a performance of an action. Although analytically these types of speech acts are distinct, in practice differentiating between the two becomes hard (Ahmed 2012; Derrida 1977). It is the performative statements that have a potential to help Alex—to become more responsible or to avoid making mistakes, for example. They can help people with disabilities to become needed and included. Can they? Can words, supported by sensorially and emotionally challenging environments, be made to matter?

For performatives to make words trigger intended changes in the material world, several conditions must be met: (1) there must be an accepted procedure through which this materialization or change can take place; (2) this speech act needs a fitting context within which all circumstances for the implementation of this statement are met; (3) the procedure must be executed correctly and

(4) fully; and finally, (5) participants must be sincere in their intentions and (6) execute the necessary procedure. The speech act comes to materialize only if these conditions are met or “is happy.” The very possibility of misinvocations (violations of rule 1 and/or rule 2), misexecutions

(violations of rule 3 or 4), or abuses (violations of rule 5 or 6) points at the complex pragmatics of the seemingly easy mattering words. It is in this primary scene of the issuing of the utterance that we find multiple actors involved, their agendas, knowledge, and subjectivities, situated within a

48 Excluding those speech acts he called parasitic: unintentional, dramatic, forced, or ironic statements.

270 given moment in a special location. Here too, words do not come to matter by themselves; instead they are made to matter by a crowd of persons, under the conditions of coordinated comprehension and volition. Without the proper audience, proper speakers, proper intentions, institutional culture, and proper execution, words do not bring about the desired result.

In writing about organizational diversity initiatives in Australian and British universities,

Sara Ahmed (2012) discusses various valences of performativity of what she calls “institutional speech acts,” which take the form of first-person plural statements about the institution and on behalf of the institution. She contends that such institutional speech acts as “we are diverse” have multiple material effects: the creation of the very idea that the university is diverse (this idea fortifies with repetition), routinization of diversity, its ritualization and depoliticization, the creation of a convention to talk about the university as diverse, and a change of value attributed to diversity and diversity work (depending on who is uttering the sentence and in what circumstances).

And yet, no matter how many times these statements get to be reiterated, Ahmed writes, the changes these statements announce do not come to materialize. To capture this dynamic, she develops the concept “non-performative”:

Non-performatives describe the “reiterative and citational practice by which discourse” does not produce “the effects that it names” (Butler 1993: 2). In the world of the non-performative, to name is not to bring into effect. (Ahmed 2012, 117)

She emphasizes that non-performatives are not unhappy statements that did not trigger desired effects because of the violation of the conditions listed earlier. Instead, not bringing into effect whatever was uttered is the intentional effect of uttering non-performatives. Not bringing about changes is the intended effect.

In my model of the non-performative, the failure of the speech act to do what it says is not a failure of intent or even circumstance, but is actually what the speech act is doing. Such speech acts are taken up as if they are performatives (as if they have brought about the effects they name), such

271 that the names come to stand in for the effects. As a result, naming can be a way of not bringing something into effect. (Ahmed 2012, 117)

An example of such non-performatives would be the proclamations of commitments that identify the abstract support of something but bring about no effect—no obligation, no action, no change of status, nothing—to either the enunciator or the object of the speech act. Here, non-performatives fulfil the role of an uttered statement which in principle was uttered not to achieve the announced effect. Can it be so that Alex actually does not want their words to come to matter? Did they say it in bad faith, to create an impression of resolution somewhere where no resolution or even intention existed?

It may as well be the case, yet for the purposes of this chapter, I would like to give Alex another chance, to figure out a way to actually be moved by the sensorially and ethical impacts that White Caners organized for them on weekly basis, to make those resolutions Alex made in the dark portable and working in daylight.

The resolutions and words that Alex was talking about connoted their resolution to have a different reaction next time when a challenge arises, to meet the new situation with more responsibility, to enable themselves to respond in a way that would not be self-centered and self- absorbed. Alex wanted to walk out from the dark room a different subject. What does it take to change?

As Charles Hirschkind (2006, 31) contends, in thinking about the constitution of the moral subject, it would be erroneous to think of subjects as rational decision makers who inflict changes once they take a decision. Instead, he suggests taking seriously the pervasive impact of their sensing and perceiving persona, their community, and the complexity of commitments, and the full scope of the individual’s experience.

272 Early on in The History of Sexuality, Volume II: The Use of Pleasure, Michel Foucault wrote that experience “is understood as the correlation between the fields of knowledge, types of normativity, and forms of subjectivity in a particular culture” (1990b, 4). He developed a theory whereby understanding an experience would necessitate the consideration of knowledge narratives

(savoirs, or disciplines), power relations, and forms of recognizing and forming oneself as a particular kind of subject. The latter—recognizing and forming oneself as a particular kind of subject—would be the domain of the ethical cultivation of the self.

To understand Alex’s experience through such a framework would require a complex consideration of the system of notions within which they find themselves (what is addiction, what are its driving forces, why do people relapse, what is the absence of addiction, etc.), the system of power relations within which Alex lives and which they reproduce through repetitive performances

(how does Alex act in relation to other members of the social system around them, what value does

Alex attribute to themselves across various social contexts, what are the socially sanctioned ways that Alex repetitively does qua a person bearing the label “addicted”, etc.), and the ethical system through the operations of which Alex freely acts on themselves (what does Alex want to be, what work can they do to become such a person, what values drive them in this everyday work, how can Alex recognize themselves as a free subject who can change, etc.). It is the existence of this latter system—the ethical system—that Alex disregards or seeks to find in their life. It is within this system that the possibility of the formation of a new subject lies. It is within this system that one can choose and make some words matter.

Now, my interlocutor, unfortunately, will not find a ready-made answer to their question about how to make those words matter without conceptualizing themselves as a free subject capable of moving things around (even if these things are very small), and capable of not turning back. The ethical system is a crowded cosmos, James Faubion (2011) writes. Both the ethical

273 practice and ethical discourse unfold within a social setting, permeated by structural forces that enable some and disable others to the extent that is often beyond their control. Alex’s frustration with how forcefully their social environment drags them back and how unportable their resolution is, is deeply connected with their idea and, perhaps, experience that there is no freedom for them, no freedom to change themselves, to change the community they are part of, or to change the ways things go. From a Foucauldian perspective, however, the picture is less gloomy. To make words matter there has to be a subject who would make those words matter, through whichever action they deem possible or feasible. Yet the question remains, how to recognize oneself as a free subject when the environment around is designed to make Alex recognize themselves as profoundly dependent or unfree, a subject whose subjectivity is corroded by addiction and social connections that stimulate this addiction.

Anthropologists consider the subject’s freedom to be one of the fundamental conditions of possibility for ethical practice (Faubion 2011; Lambek 2010; Laidlaw 2013; Mahmood 2004), together with one’s ability to be self-reflexive and intentionally willful in learning to act in alignment with chosen values. In this, ethics is different from moral codes: Laidlaw (2013) explains that if moral codes are enforced rules and regulations, ethics is the ways in which individuals take themselves as the object of action and intervention. Other scholars have offered similar distinctions: ethical moments as moral breakdowns (Zigon 2007), ethical and themitical

(Faubion 2011), ordinary ethics (Das 2012; Lambek 2010). Ethical practice, predicated on the subject’s freedom, would mean that they are free to choose the course of their actions and bear responsibility for their choices, even if this choice includes submission to a chosen authority

(Mahmood 2004; 2003; 2001). What would freedom mean, here? What form would it take for

Alex?

274 Caroline Humphrey (2007) contextualizes freedom by looking at the constellations of ideas and sensations associated with freedom in Russia. Specifically, she looks at svoboda, mir, and volya. She writes that in the medieval times, svoboda “first of all was the agglomeration of practices of our own way of life, most fundamentally contrasted with those of alien people and enemies” (2). From the beginning, svoboda was predicated on the political construction of a bounded society of the free. Mir, to the contrary, “points to the well-being naturally present between all” (3), it is connected to the feeling of the universe’s wholeness. “If svoboda freedom is based on the political construction of a bounded society (that of the free), mir by contrast can be directed outwards limitlessly. . . . This is the idyllic image of the universalized community, which ignores its fatal downside, namely, that if individuals subordinate themselves to such a totality they may be easily manipulated by any government claiming to represent it” (4). Volya, finally, is

“sensation, emotion, and action” (6), it is personalized freedom, one’s ability to persevere and make their intention materialize. The dark side of volya is despotism, the brighter side is one’s ability to persevere despite challenging conditions. Volya is close to the concept of self- sovereignty, and it is volya that Alex needed in that particular moment.

I am particularly interested in this cluster’s disconnection with the notion of freedom of a rights-bearing subject or the concept of rational choice (Humphrey 2007, 7). Humphrey traces the connections and changes in the concepts of freedom throughout different political formations.

With the fall of the Soviet Union, she writes, Russia has seen the emergence and development of a new concept of freedom—freedom that may be bought. There is little scope of freedom available to the poor, people who do not have sufficient means to access consumer choice, networks of favors, membership in elite communities, NGOs, activism, etc. “The present-day svoboda- freedom is thus associated with the arrogance of political-financial clout, with corrupt little islands of energy and agency, and it tends to be resented or frankly rejected, by everyone else” (8). This

275 svoboda that allows access to privilege is tightly connected to bespredel—what Oushakine defines as “a lack of any visible obstacles or limits but also an absence of any shared rules or laws” (2009,

1).

This is a complex moment—the ethical formation of the self necessitates both a free subject capable of self-determination and of acting upon themselves and a social environment that would host this ethical transformation. Going back to the case of my wishful interlocutor, no growth or transformation is possible in a world they wished to materialize—in a world where words and insights would require no effort or work to materialize. It is their freedom—albeit limited to a certain extent and existing only within a narrow scope—that constitutes the very possibility of moving and being moved. How does addiction or disability change the scope and possibility of occupying a position of a free subject? Out of their experienced exclusion, Alex saw no way out.

The problem with portability of an ethical resolution, or rather the lack thereof, in a given situation is that the conditions of sensory and emotional stress, orchestrated by my blind interlocutors, contribute not to the formation of ethical subjects among the participants, but to their formation as charismatic figures. Charismatic figures, as Faubion (2011) explains following

Weber, act as sovereigns to their own self, unwilling to compromise or share their power. In a helpful manner, Faubion explains: “The charismatic leader of course sustains a relationship with his following. A relationship there must be, since charismatic authority is a social fact, not a psychological one. The followers nevertheless abide in an ethically abject mode. They may bask in the leader’s aura, but they are granted no comparable aura of their own. No dissemination of the aura, no ethical other. No ethical other, no ethics” (2013, 297). In other words, for Misha, a person who emerges as a charismatic guide who does not in fact face the same ethical dilemmas as Alex, making a resolution in the dark is simply not the same as what it is for Alex. Without engaging the

276 everyday, the daylight life of Alex, their extraordinary decisions remain within the contained time and space of sensorial shock and emotional sharing.

And yet, is it really just a complete failure for Alex? Elaborating on Foucault’s conceptualization of ethics, James Faubion clarifies the concept of the mode of subjectivation which stands for “the way in which an individual establishes his relation to the rule and recognizes himself as obligated to put it into practice” (Faubion 2011, 49). Alex posed fundamental questions about the appropriate mode of subjectivation—how does a free subject establish a relation to the rule and commits to it? How can being needed and responsible make one stick to their commitments, exactly? How does the declaration of the principles that guide inclusion make one act in alliance with those principles and values? Becoming such a subject of ethical transformation—acting on oneself and recognizing oneself as a free subject that can in principle launch change—is a principal movement that my blind interlocutors try to trigger in their partners and audiences, although face difficulties doing so through their extraordinary means. I think by posing the question—how do words come to matter?—Alex begins their journey to recognize themselves as an ethical subject.

Understanding the kinds of care and the techniques of self-making Alex and others are summoned to perform is part of the broader project of understanding the subjectivity carved for and by people with disabilities in Russia (Foucault 1998, 88). I am using the Foucauldian concept of techniques (or technologies) of the self, which he defined as “the procedures, which no doubt exist in every civilization, suggested or prescribed to individuals in order to determine their identity, maintain it, or transform it in terms of a certain number of ends, through relations of self- mastery or self-knowledge” (Foucault 1998, 87). Foucauldian subjects are constituted through their relationality and relatedness—to others, to themselves, to the world within which they live.

277 In the last chapter of this dissertation, Chapter Seven, I take up the task of exploring practices of dwelling as an alternative ethical path that White Caners offer to their allies and partners.

Conclusion

It is often said that cultural attitudes and feelings contribute dramatically to the exclusion of people with disabilities and constitute a part of ableism endemic to everyday life. My blind interlocutors take this statement seriously, as they devise strategies of effecting changes in how people with disabilities are perceived, imagined to be, and engaged with.

In this chapter, I engaged with two distinct forms of affective and perceptual work that my interlocutors do to cultivate subjects capable of inclusion among the nondisabled. One case was educational programs led by blind experts. Another case was a round table in the dark. If the first case opened up a conversation about the strong link between perceptual patterns and sentiments associated with the figure of a blind person, the second case raised the problem of the insufficiency of affective engagements alone. Instead, it illuminated the need for the recognition of oneself as a free ethical subject who is capable of bearing responsibility and bringing about change in their life, no matter how small this change initially is.

The two cases presented distinct strategies of reforming the affective palette of the nondisabled. The first one offered a tamer and more contained gradual introduction to the possibility of normalizing disability and getting rid of ungrounded extreme feelings, dwelling with discomfort and thinning it out by trying to name it and work with it. As Stepan engaged with his audience, as he cracked jokes, and brought up stories from his life, he facilitated his transformation from being a fantastic person into a regular instructor. The second case, on the contrary, incurred sensory shocks and challenging emotional effort, which instead of moving the audience out of the comforts of ableist assumptions, contributed to the creation of an image of the blind guide as an exceptional figure, as a charismatic figure, whose life form bears little semblance to the life of the

278 audience. I identified the failure of such an event to bring about changes in the life of one of the audience members as a result of White Caners’ failure to recruit this member into an ethical transformation and help them recognize themselves as a subject of this transformation.

279 Chapter 6. Trust Issues

What is it that sustains the social inclusion of people with disabilities? My blind interlocutors in Russia claim that in addition to accessibility, inclusion is dependent on operational circuits of trust established between disabled and nondisabled persons. To paraphrase, unless both disabled and nondisabled individuals learn to trust and rely on each other, unless they develop embodied skills and orientations to do so, it is impossible to build a truly inclusive society. In this chapter, I engage with this diagnostic position, drawing on my ethnographic research of grassroots- driven yet governmentally and corporately supported attempts to design a sustainable culture of inclusion in Russia. I show how a problem for inclusion that was created by my blind interlocutors within the emergent domain of inclusion superseded disability identity politics and instead initiated the creation of alliances and collectives across the divides of disability. I conceptualize this particular problematization of social inclusion as part of the ethopolitical relationality regime that has historically governed civic activities in Russia.

I zoom into the work of my interlocutors who generated an original problematization of inclusion that enabled them to recruit persons with other disabilities as their allies and to cultivate the value of inclusion among nondisabled individuals. Finally, I approach this conceptualization of the problem for inclusion to solve as symptomatic of and feeding on the lingering postsocialist patterns of sociality—depoliticized and operating at the register of the ethical. Considered together, these processes raise questions of what bodies and subjects it takes to fuel contemporary moral economies of individual vitality and social betterment in nonliberal settings.

I argue that inclusion’s traveling to Russia was not solely a traveling of an ideology or a tool. Given Russia’s historical, political, and cultural specifics, the domestication of inclusion took place in tandem with the creation of a problem that inclusion was supposed to solve and the imagining of a future without this problem. Inclusion inaugurated a new process of

280 problematization—a creation of “the problem for inclusion,” multiple configurations and reconfigurations of inclusive measures to address this manufactured problem, and the imagination of a desired future where this problem is no more. When I say that the problem was created, I do not mean to imply that before inclusion’s arrival in the country the disabled population experienced no discrimination or mistreatment. Disabled persons faced exceptionally challenging conditions throughout Russia’s Soviet and post-Soviet history (Edele 2009; Phillips 2009). Yet when I claim that the problem for inclusion congealed alongside the appearance and dissemination of inclusion,

I contend that with the design of practical measures to manage and value disabled lives, there has been a reconceptualization of disability and sociality as objects of knowledge and categories to inhabit.

The predominance of blind persons among my interlocutors significantly affected what actions they took, how they defined inclusion, and how they arranged their priorities across matters of accessibility and other disability-related matters (on how structural positioning and individual bodymind experiences affect ways of knowing, see Alcoff and Potter 1992; Hamraie 2017). The organizational principle they promoted was premised on a neurotypical ambulatory body that inhabits a world that is more or less accessible, a body that is challenged to develop new forms of mobility but that is not fundamentally arrested and suspended in their mobility. This is the position that my blind interlocutors occupy—for them, mobility and the possibility of physical proximity is achievable through their movement and navigation with the help of a white cane and (in rare cases, in my experience) guide dogs. Finally, the affective atmospheres that surround blindness allow for the configuration of blindness as an “interesting” disability, as opposed to disgusting, aversive, or terrorizing, which are affects sometimes associated with other disabilities. This certainly prompted their assumptions that disability may be reconfigured as a tool to enhance social

281 proximity. And it is from this position that they theorize disability and the problem that disability poses to them.

Ways to create problems

It is not natural or obvious what social problems inclusion is brought to solve. As my fieldwork demonstrated, the diversity of various models of inclusion is connected with the diversity of ways to justify inclusion’s necessity. Depending on the speaker, their perspective, agenda, audience, and a range of commitments, inclusion received diverse justification: an economically justified solution, a tool of moral development, a way to create and sustain the modern status, a tool to appease populace, and so on. The answers to the following questions differ:

Why does a community desire inclusion as a political tool or a moral instrument of betterment?

Why is it necessarily associated with social improvement? What preexistent conditions make inclusion effective or ineffective in solving a specific social problem? Without taking it for granted, I would like to draw the reader’s attention to the power of inclusion as a rhetorical instrument, moral value, and driver of emotions and affect, as well as an economic factor. Inclusion materializes through too many diverse forms to make possible any clear generalization about what is wrong with an exclusive society.

One dominant way to justify and explain inclusion as a necessary tool for social reform is through rendering it an instrument of political justice in a society that privileges equality and/or equity.49 In such a logic, disability status may not disqualify anybody from accessing the same system of publicly available resources. In such a system, disability inclusion becomes a tool to critique and intervene in social mechanisms that negatively discriminate against people with

49 Although equality and equity connote distinct principles of social valuation – equality being based on the provision of the same opportunities to everyone, equity being based on the guarantee of the same results to everyone (thus, justifying differential distribution of public resources to ensure that everyone’s unique need is met) – in this section I refer to both of these principles equally, treating them as examples of the same logic that values social units as equals based on their shared identity as humans.

282 disabilities denying them sufficient resources and support to which they are entitled qua citizens.

Yet even in liberal states, such a form of justification often fails in practice. Writing about the early

2000s in Canada, Rod Michalko (2002) diagnoses his society as having made disability into a problem, which then in turn leads to negative discrimination and the need for inclusion. He argues that “the ‘problem of disability’ becomes the problem of inability. Exclusion is taken as a given and the problem of inability becomes the problem of inclusion” (2002, 145). His critique targets the concept of the natural body and the naturalness of disability, as well as societal reactions to disability perceived as natural. In failing to account for the diversity of human embodiment, liberal ideology fails to provide sufficient resources to disabled bodies.

At no point during fieldwork did I work in or come across an environment properly organized by the value of equality or equity. One’s disability status always served as a significant factor in determining the social dynamic one would be exposed to and one would participate in.

As Rasell and Iarskaia-Smirnova (2013) claim, ableism is a universal phenomenon that has multiple faces around the world. I would add that ableism and the forms to solve problems posed by ableism also change over time and across contexts. Similar audiences in different conditions will be receptive to different problems, prioritizing some and bracketing others.

In this chapter, I explore a unique diagnosis of contemporary Russian society and the problems it has that may be effectively addressed by inclusion. This diagnosis was generated by my blind interlocutors who theorized social life from their own position of mobile and relatively independent blind actors.

At 7:45 a.m. on a Saturday morning, I got up to serve as a scribe for a Skype conference call. My Saturday mornings were often busy with notetaking at my blind interlocutors’ brainstorming sessions, for whom early Saturday mornings would be the only convenient time for

283 a long brainstorming meeting. Through these sessions, the White Caners kept the conversation going about the conceptual and pragmatic strategies of deploying inclusion in their cities and towns, during which their concept of inclusion was stabilized, challenged, and changed. This particular conference call gathered six people: a blind business coach, a blind director of a nonprofit, a blind massage therapist, a blind educator, a sighted psychotherapist, and I, a sighted anthropologist-cum-scribe. One of the purposes of the call was to discuss how inclusive practices mattered for them exactly, what problems in their lives it solved, and what opportunities it opened up. This call was prompted by a conversation that Oleg had with a foundation that supported one of their projects. This conversation revolved around the fact that although large sums of funding were being channeled into projects to support inclusive employment and education, almost none of them proved effective or sustainable in the long-term. There was virtually no positive impact on disability employment, according to this foundation’s observation. Despite all the professionalization activities they sponsored, employers remained reluctant to hire persons with disabilities, and simultaneously persons with disabilities were perceived to be reluctant to work in the conditions they were offered. Oleg’s insight from this conversation was that inclusion projects kept failing because they actually neglected to clearly demonstrate how inclusion was a value and a solution as opposed to another state-ordained obligation. Part of the motivation for that early- morning virtual convention was to figure out how exactly inclusion makes life better and whose life it makes better.

We spoke at length for several hours. Tasked with sharing anecdotes about concrete examples of inclusion assisting my interlocutors and solving some broader issues, we discussed a range of personal situations, attempting to find common parameters that resonated across these cases. The blind educator volunteered to go first. The problem he came up with was that the sighted people he was surrounded with were very overprotective. According to him, without inclusion

284 both the sighted and the blind just reproduced a skewed division of labor, in which blind individuals, assuming their own incapacity to live independently, manipulate sighted individuals for their own benefit. His was a story in which he described himself as having driven himself to the depths of dependency through normalizing the overprotective behaviors of the sighted. At some point, he wouldn’t even boil pelmeni [Russian dumplings] for himself. His transition to a life governed by the principles of inclusion in his narrative marked the rupture of this defunct relationship of overprotectiveness, dependency, and denied subjecthood. It was only through inclusion and the pressures of inclusive collaboration that he learned that he wasn’t completely helpless; he learned to trust himself.

The blind nonprofit director concurred that the skills of manipulation that a blind person develops indeed debilitate their social world significantly. In her experience, hanging out with

White Cane changed her social habits and expectations, she noticed that she acquired more friends among both the sighted and the blind. She concluded by adding that shifting her organization’s focus from providing special targeted services for the blind to carrying out socially significant projects with the participation of the blind helped her understand how hard it was to inculcate the idea that sighted people did not always have to feel obligated to take full responsibility for every blind person in the vicinity. “The same goes with employers—of course they do not want to hire disabled people, they think that they would have to babysit them [nianchitsya s nimi] all the time.”

Shifting the focus of the conversation away from discussion of examples of overprotectiveness and manipulation exercised by both the sighted and the blind, the sighted psychotherapist offered his perspective on the nature of that strange distrustful relationship between blind and sighted folks that the examples had begun to elaborate. He began by talking about the profound insecurity that both the sighted and the blind experience when having to engage with each other. He felt this insecurity and discomfort too, he said, especially when engaging with

285 a new disabled acquaintance. He went on to add that this insecurity and discomfort become exacerbated when all the stakes in a conversation are on executing this conversation well, according to particular standards and linguistic conventions. Put differently, he felt that people with disabilities were exceptional social actors who were subject to a unique, strict social etiquette.

Not executing these special norms and rules—that varied depending on different kinds of disabilities and different people—had an added degree of intensity and punishment.

Although other conversation participants did not volunteer their own interpretations, they pushed further the ideas proposed by others. In one way or another, they all discussed the fragmented and truncated quality of communication between the sighted and the blind. No one in the conversation raised concerns about different factors that need to be considered when thinking about “the sighted” or “the blind.” The conversation operated under the assumption that one’s visual abilities overrode other substantial markers of difference and challenged the person to develop a particular set of characteristics. In other words, it did not matter if a sighted person was a sighted expert in government or a sighted pensioner on welfare. It did not matter if a blind person was a child of a poor family whose income depended on their pension or if the blind person was a wealthy motivational speaker with advanced communication and networking skills. They allegedly all shared something due to their shared sensory abilities.

When we were reaching our agreed two-hour limit, Oleg volunteered to summarize the conversation:

So I think we can say that the problem for inclusion is these patterns of relationships between the disabled and the nondisabled. The disabled manipulate the nondisabled, the nondisabled don’t engage with the disabled as fellows, they overprotect and at the same time try to avoid any unnecessary interaction. To me, this is indicative of a rupture of social trust. [Both the sighted and the blind] just do not and cannot rely on each other, exactly because one is blind and the other is sighted.

286 After Oleg concluded his thought, there was a moment of silence. Gradually, one after another, the participants agreed that ruptured circuits of social trust were the real root problem. Oleg’s capacity to stabilize (Callon 1986) his interpretation as reflective of other interlocutors’ positions enabled the translation of issues grounded in the materiality of disabled bodies into matters of subjects who could not sustain communication. His summary signaled the moment when the problem that inclusive measures were supposed to target and address started to congeal. It was now identified that the exclusion of persons with disabilities materialized as failing circuits of reliability and trust. Not inaccessibility, not the insufficient provision of tools to ensure the civil rights of persons with disabilities, and not ableist ideologies and politically significant logics. In other words, they were suggesting that with the help of intentional development of more trusting relationships between the sighted and the blind, the nondisabled and the disabled, the quality of life of both parties would increase.

After this conference call, the problem of a broken circulation of trust was released into the network, being reiterated and challenged and engaged with in different settings and formats: being written into grant applications, circulating as a document, and being integrated into the curriculum of inclusion seminars that White Cane organized. It surfaced during one-on-one lunches and dinners with decision makers and corporate funders, steering committee meetings for large city- and region-wide inclusion events, presentations and talks at business and social forums, and networking and over cups of tea in the office. I observed how blind persons, after learning about broken circuits of social trust, would begin to find examples of this in their lives, qualifying some experiences as exact instances of the broken circuitry of trust and reliability. With a diagnosis attached to the complex and ambiguous experiences of interactions, regardless of whether they agreed with the interpretation or found it alien, White Cane affiliates’ engagement with the model and readiness to debate it in different forums—private and public—only further solidified it.

287 To be clear, here I am not interested in identifying the “real” problem of the exclusion of persons with disabilities in Russia. Nor am I attempting to prove my interlocutors wrong by poking holes in their, at times, contradictory and inconsistent ontological constructions. I am instead interested in the generativity of their ideas and their practices which through slow individual recruitment produced grassroots-driven cultural change in how disability, inclusion, and a “full life” became configured, represented, and experienced. I would like now to move on from the moment of its creation and zoom into this conceptualization in order to understand the factors that enabled it to resonate with broader publics. Specifically, to ask what discursive devices, built into the idea that inclusion remedies broken circuitry of trust and reliability, enabled my interlocutors to recruit individuals who did not share their embodied experiences—persons with other disabilities and nondisabled people.

To comprehend what experiences and situations resonated with my blind and sighted interlocutors, I have cataloged various valences of trust that they would bring in as evidence to sustain this diagnosis. My younger blind interlocutors would describe sighted individuals inexperienced in inclusive interaction as lacking the embodied skill of trusting their blind peers, demonstrating their incapacity to take seriously blind persons’ “I got this” statements, struggling to laugh and joke around with persons with disabilities, and fearing to discuss the tasks a person with visual disabilities can do and voice—or actually have—any expectations about blind people’s achievements. This common asymmetry of power between the sighted and the blind endemic to public settings such as work, social projects, education, and leisure, taken in this context, was attributed to the incapacity of the sighted to trust the blind and the blind to reclaim their trustworthiness and reliability. A young blind woman said that she ran into similar barriers when trying to form intimate relationships, including friendships and romantic and sexual relationships.

Back when she was trying to build a family with a sighted man, she was not sure of the exact

288 reason why their relationship did not work out. Failed trust and failed bodily skills to rely on each other provided an effective trope for her to contain her experience and make sense of it. Similar diagnostic patterns of reflection would circulate from one person to the other, change protagonists, but remain persist in their stubborn viability. They would codify a multiplicity of diverse experiences as experiences marked by the vague concept of inoperative trust. Among this group of people—some of whom were born with impairments while others acquired them later in their lives and yet others who had never experienced any disabilities—the ableism of society that has historically segregated persons with disabilities into enclaves and special zones solidified as being rooted in one particular problem: a broken circuitry of social trust.

Trust in academic literature

In anthropology, humanities, and social sciences, trust has received substantial attention, albeit from different angles. There have been works in what Alberto Corsín Jiménez (2011) calls the sociology of trust that analyze the subtleties of trust and trusting relationships without anchoring these relationships within any specific context yet modeling such relationships as occurring between “rational subjects.” Economist Diego Gambetta’s (1988) work is one example of such an approach. Operating under the assumption that trust is a portable and universally recognized experience, Gambetta dissects the complexity of trust and the complex relationship between trust and cooperation. An integral part of human relationships, trust requires the freedom of the involved parties and a tolerance for ambiguity (Liisberg, Pedersen, and Dalsgard 2015).

Always at risk of destruction and resistant to intentional cultivation, trust constitutes an ethical substance through which subjects grow and degrade.

Although discussing a different context—one of unspecified hunters—anthropologist Tim

Ingold (2000) offers a similarly universalizing account of trust as a combination of autonomy and dependency. Ingold’s trust stands for a relationship of recognition and respect, mediated by a series

289 of practices and rituals, as trusting relationships link participants of the same world. “To trust someone is to act with that person in mind, in the hope and expectation that she will do likewise— responding in ways favourable to you—so long as you do nothing to curb her autonomy to act otherwise” (Ingold 2000, 69–70).

Anthropologist Alberto Corsín Jiménez (2011) offers a distinct approach that defamiliarizes trust and refuses to accept its seemingly universal experience. He draws the reader’s attention to the diversity of ways in which different constellations of subjects and objects result in different practices and forms of engagement that get to be conceptualized as trust. To illustrate this point, he juxtaposes the contemporary Euro-American triangulation of trust, responsibility, and knowledge in corporate contexts with anthropological scholarship on cultures of suspicion, culpability, and spiritual ambiguity. This comparison helps Corsín Jiménez show that relationships of trust constitute part of broader economies of responsibility and thus differ from one context to the next. Trust is not a portable immutable phenomenon, Corsín Jiménez demonstrates. Instead, in various societies trust and mistrust plug into different moral universes and thus, constitute part of differently choreographed and orchestrated social interactions.

Because trust and distrust take place among historical and social beings, various factors affect one’s ability to enter and sustain a relationship of trust. James Doucet-Battle (2016), for instance, explores the nuances and challenges embedded in the undertaking of rebuilding trust between the biomedical complex and African Americans, who have been repeatedly exploited and abused by the former. In other contexts, such as among undocumented domestic and construction workers in Ceuta, Spain, relationships of trust become affected by citizenship status and the scope of manipulation both parties may afford and entertain (B. Campbell 2018). A form of political organization and ideological commitment also affect the motivation and intentionality of relationship building. Marianne Maeckelbergh (2018) shows how the commitment to horizontal

290 politics within the alterglobalization movement clashed with the prevalent tendency of developing relationships of interpersonal trust as opposed to relying on the approved, ideologically sanctioned commitment to at the anti-G8 protests in Japan in 2008. Drawing on her fieldwork in Uganda,

Lotte Meinert (2015) critiques the assumptions of ontological fundamentality of trust. Instead, her research with subjects injured in the long-lasting conflict between the Lord Resistance Army and the Ugandan government provides an example of where distrust becomes the point of departure and the regular state of affairs among humans. Finally, Nils Bubandt (2015) examines entangled relationships between trust, (state) power, and in/authenticity in Indonesia. His contribution lies in identifying the state’s interventionist agency in imposing authenticity as grounds for establishing citizens’ place in the state.

To sum up, the ability and the content of the relationship that gets to be labeled trust differs, yet there is a fascinating lingering inertia in recognizing its variability. Trust as located in the domain of the ethical, as one’s ability to throw themselves vis-à-vis the other and rely on this other without guaranteed success is imagined to be engaging the deepest core of one’s humanness. When bringing dis/trust in as an explanatory device for ableism, my interlocutors refuse to locate ableism and exclusion as a problem that concerns only people with disabilities (which is the prevalent way to conceptualize problems with disabilities and the need for inclusion). Instead, they demonstrate that ableism is just one among many other materializations of broken social trust.

Phenomenological approaches to trust

When introducing the problem of broken social trust, my interlocutors also offered their explanation of why exactly it is a matter of trust rather than something else. The Russian word for trust is doverie (доверие). The root of the word is -ver- (-вер-) which connotes the meaning of faith or belief. When added to nouns, do- (до-) is a prefix, analogous in its function (in this context) to the English prefix pre-. Doverie (доверие) is thus the subject’s predisposition, the subject’s

291 orientation toward the other that precedes commitments and affiliations. Doverie functions as a condition for a relationship and as a mutual readiness and willingness to reach out to each other and reach each other. Doverie unfolds within a field of uncertainty—the uncertainty of its limits and resiliency in the face of subjects’ support and failure. Thus trust, in the way in which members of White Cane conceptualize it, is an affective predisposition and a certain orientation of subjects in relation to each other, against the foil of risks, anxieties, and uncertainties that this potential relationship may bring about. To be excluded from the operational circuitry of social trust means to not have access to social subjects preoriented to engage with you and to lack the skill of sustaining such an orientation.

Although in Russian there is no obvious connection between doverie and phenomenology,

I find them quite resonant. Hence, I turn to phenomenologists to see how their insight may add nuance to the problem of broken social trust.

Sara Ahmed writes about the trickiness of orientations. Orientation is the subject’s bearing, it is “the matter of how we reside in the world” and “how bodies take shape through tending toward objects that are reachable, which are available within the bodily horizon” (Ahmed 2006,

543). A phenomenological lens shows that subjects and their orientations are not merely given. As subjects and objects in the world, bodies dwell in the world through orienting towards some objects and away from others. Orientations take time and labor to be built and sustained. Drawing on the works of Husserl and Merleau-Ponty, Ahmed reminds the reader that objects and subjects within one’s horizon and reach become backgrounded and foregrounded as always in-relation-to-other- objects and as a result of preceding histories and parts of future projects. Oriented individuals evolve with the world and shape the world as their experiences of acting and being acted upon get sedimented in their bodies and the world in which they dwell.

292 When making an inoperative circuitry of trust the problem for inclusion, my interlocutors diagnose the society not as unjustly organized, but instead as truncated and crowded by disoriented subjects. And through perpetuating the comforts of this disorientation, they actively prevent the coming of the inclusive world. To repair the circuitry of social trust, thus, becomes a project of labor-intensive reorientation of themselves toward each other and. through this reorientation, changing their bodily, emotional, and perceptual patterns as well as those of others.

It is important to note that this interpretation of a social problem that requires inclusion as its remedy does not overtly depend on the category of blindness or disability. Instead, it pivots around the category of debilitation. Several scholars of disability have drawn distinctions between debilitation and disability (Chaudhry 2018; Livingston 2005; D. T. Mitchell and Snyder 2015;

Puar 2017) for disability bearing the history of Euro-American disability rights movements that have prioritized white middle-class subjects that may in principle be rehabilitated and integrated in society, at the expense of those whose bodyminds cannot neatly fit in preexistent molds. I am using a similar distinction. Specifically, I use debilitation to connote the effect of diminished opportunities, access, and abilities that some bodies experience as a result of some injury, illness, or environmental impact. Their disability status is irrelevant for this conversation because these diminished opportunities, access, and abilities occur to people regardless of their disability status.

In the case I am looking at, in a society that has historically prioritized individual connectedness as a survival strategy in the face of citizens’ impeded capacity to make political claims, identifying social isolation and poor connectedness to others as profoundly debilitating experiences does not only apply to persons who identify or are labeled as disabled. Disoriented bodies are not disabled bodies alone. Disoriented bodies are debilitated bodies whose completion and survival depends on their capacity to restore the thickness of social relations that may sustain them. David Mitchell and

Sharon Snyder (2015) and Jasbir Puar (2017) described bodies that populate neoliberal contexts

293 as always already debilitated. Yet this is debilitation that originates in the coalescence of different forces. This debilitation is both a condition and an effect of a perpetual capitalization and the creation of needs and degrees of wholeness. The debilitation I described in the previous paragraph, on the contrary, is not about endless bodily enhancement. Instead, it is about the increasing isolation of social actors and their loss of selves as a result of loosening connections.

Embodied Dis/Trust

“Such a good pool,” Misha and I agreed as we stepped out from the Palace of Youth. White

Cane negotiated with the pool’s administration to host biweekly meetings of an inclusive swimming club in their brand-new indoor swimming pool and so we went there. Misha was one of the regulars—a blind member of this club, he loved this pool and knew it well. I would only tag along with him whenever our schedules would allow. We exchanged a few more phrases about how good it is to swim in the middle of the day, and then I noticed my friend who had just parked in front of the building to pick me up to go to a meeting afterwards. Misha and I said goodbye to each other and parted ways: I went to hop in my friend’s car, Misha headed over to the nearest bus stop to go home. Instead of enthusiastic or kind greetings, my friend gave me a judging look and a piquing question—what do I think I am doing? Confused, I asked what was wrong. My friend said how come I was going to leave this blind man alone in the city. I briefly responded: “Oh, he is fine, he is better at this than you and me.” This seemed to have had no effect. My friend looked tense. She refused to move the car and told me that she did not want to participate in such an irresponsible act. She would not leave a person in such a precarious situation. She told me to go get Misha—we would drive him home. I said that his home is in a different town, he is a commuter, and his bus was around the corner. Plus, he had been commuting for years on end now, “he got this.” My friend said that she did not believe me and that we were driving him. The car moved and we drove right to the bus stop. Confused about the best way to react and dissuade my friend in

294 such a heavy atmosphere of the car, I left the car, approached Misha and jokingly briefed him on the situation. We both knew what was happening—my friend was determined that Misha was helpless and needed a sighted individual to take him home. He giggled, “Well, joke’s on her. I’ll have a comfy ride home, but you guys will have to get back two hours of your lifetime lost to this trip.” And so we went to the car to drive to Misha’s town. That is how Alisa and Misha met.

Trusting a stranger is a challenging task, one would say. But trusting a blind stranger is a whole new level of challenging. It requires a certain bodily and mental skill. I am bringing in

Alisa’s example not to discredit her concern but to illustrate the embodied, deep-seated orientation, a physical inability to act against a certain interpretation of the situation—the reading of a blind person as helpless—that I would often come across in sighted people in Russia. I was not an exception to that. As I look through my fieldnotes, I find my own process of such enskillment documented—a transition from a body and a self that lacks the skillset necessary for a long-lasting collaboration with blind people to a body and a self that has developed some abilities that make these collaborations appreciated and fulfilling. During my fieldwork, I worked with blind persons almost every day—be that work in the office, traveling, holding events, meetings, presentations, networking, sightseeing, dining, sharing accommodation, or running everyday errands. The intensive scope of this experience helped me to reskill myself from what initially seemed natural, obvious, and right but what in practice proved to be unsustainable, ableist, and changeable. In the first months of my work, my fieldnotes were full of frustration and exhaustion. They describe how hard I worked in order to spare my blind friends and colleagues from work and effort, how I assumed that what I—a sighted person—would do would be of better quality and done faster than what my interlocutors would do, because I treated myself as a more skilled and a more competent person. I would feel guilty if unable to positively respond to every request from any blind person

I interacted with—regardless of how reasonable and convenient these requests were. This was

295 certainly a faulty and ableist perspective and I find it important to acknowledge it (as it proves the insidiousness of ways in which ableism operates and shows the importance of embodied experiences that supplement reading about ableism). Only with the course of time, I have come to notice the ways in which this perspective failed—how my interlocutors oftentimes were better than me in a great range of activities—from presenting, brainstorming, and networking to organizing, staying in focus, and getting things done, to give but a few examples. Some of them were stronger than me. Some were more enduring and determined. Some were significantly more skilled in communication—their positive perspective and subtle reading of the room, as well as excellent sense of humor, made my abilities next to them fade. I came to realize that the grandiose feeling about myself was in itself a product of an ableist culture that trains able-bodied individuals to persistently disregard and discount the abilities of people with disabilities, rendering them burdensome and helpless. With the course of time, I observe in my notes, that I learned to notice, appreciate, and rely on my interlocutors’ abilities. I learned how to divide the labor and I learned to see their contributions as labor. I learned to leave Misha to lead his presentation and I knew that it would be incomparable in its effect on the audience to what I could do. Because Misha, a totally blind person, is simply a better speaker and communicator than I am. I learned how to leave Vova to organize our trips and be responsible for the team’s itinerary and trip planning. Vova just knows how to process information in a way that is effective and helpful, he knows how to filter through the sea of unrelated stuff and single out the useful bits. I learned how to leave Mark to network and establish contact because he is so much better than me in it. I learned how to see myself in the company of my friends as a person who may learn from them and may definitely rely on and seek help from them in certain situations. I learned how to rely on Zhenya in terms of navigation and problem-solving. She is prompter and calmer, she can figure out solutions, talk to people, find a better way to get somewhere. What I could offer to them—my visual skills that enabled me to

296 navigate us avoiding some unnecessary encounters with obstacles and cars; to find a shorter way, if it was visually apparent (which was not always so); and to format texts and documents according to some visual conventions. I learned to trust them, and I developed skills of working together with people with visual impairments, as opposed to working instead of them. And this made me ask myself how in fact can I contribute, what is my participation, beyond being the tech support, a mechanical individual who is there but also who is not the hero and the savior, despite what I’d been trained to think of myself by the ableist culture in which I was enculturated.

Falling into trust

As one of their services, White Cane members host trips in the dark—guided blindfolded tours around the city for sighted people with a blind guide. These tours take place in the city center or any other vibrant area. They include walking with a white cane, crossing streets, using public transit, going up and down staircases, purchasing a chocolate bar or a bottle of water in a street kiosk, and asking strangers for directions. During the entirety of the tour, the sighted person remains blindfolded.

My blind interlocutors designed these tours to be exercises for sighted people to develop their ability to entrust themselves to those whom they deem unreliable. The way they frame this experience emphasizes the constructive nature of the exercise—the blind guides highlight for their sighted clients that they are not trying to emulate blindness or demonstrate the “plight of blind people” (for a critique of blindness simulation exercises see Omansky 2011). Quite the opposite.

This practice is designed for sighted clients to develop skills and abilities that they lack in everyday life but that may be useful for them: trusting a blind person to be one of them.

I took such a tour with Zhenya, on a snowy, cold day in February in the city of Naberezhnye

Chelny, a town 435 miles to the west of Yekaterinburg. My tour was part of an organized activity during which experienced blind white-cane users taught inexperienced blind white-cane users to

297 move around the city independently, without relying on the support of their sighted relatives, friends, or social workers. I was the only sighted participant of the activity and due to a small number of blind clients, I was lucky to have an opportunity to have this tour to myself, guided by my good blind friend Zhenya. This tour was slightly unusual for neither Zhenya nor I knew anything about Naberezhnye Chelny and its geography. The only thing we knew was that we had to get to Tyubeteika (Тюбетейка; a Russian word for a Central Asian cap), the iconic business center 2.18 in Naberezhnye Chelny. Where it was, how to get there, and how much time getting there would take remained unclear. Zhenya giggled and said that this was a pretty fun task. She handed me a spare white cane and a blindfolding mask, telling me to put it on and encouraging me not to peep as it would spoil the effect. Off we went, in an unknown and unseen direction, allegedly headed toward Tyubeteika.

My first steps took a lot of effort. I grabbed Zhenya’s forearm tenaciously, and for the first few minutes could not make myself start using the white cane I had. I had a pressing fear of smashing into something, running my face into a pole or a wall, so I extended my right arm right in front of my face and walked like that, slowly, painfully slowly. Zhenya giggled and said that I should relax. Easier said than done, I thought. These first ten minutes or so I was overwhelmed—

I lamented my decision to participate in this tour, frantically tried to come up with possible scenarios of what to do in case of emergency and being lost in this place and tried to memorize every turn of our trajectory—at least those my body registered. Awkwardly, I felt each of my steps, as they came to me with great effort.

Meanwhile, Zhenya moved elegantly. As I held her right shoulder, I felt her posture and graceful pace. I asked her how she knows where to go, and she responded laughingly that she did not know yet and that it was time to ask a stranger about the direction. In this world of sounds, smells, wind, crispy frost, I couldn’t imagine how she was going to detect where strangers were.

298 Before I started to fall into fear and doubt too much, I heard the sound of squeaking snow behind us. This person was moving toward us, passing us to continue their journey somewhere. Once the sound felt close enough, I knew the person was less than three feet away from us. Zhenya turned left and addressed this person: Excuse me, we are going to Tyubeteika, which direction is it? A female voice in her forties or fifties replied that we were going in the right direction, we needed to walk a few blocks straight ahead and then turn left and cross the street at the intersection. Zhenya thanked her and I heard the steps overtaking us and moving ahead of us. And I asked, That’s it?

What are we going to do? Go a few blocks straight ahead, then turn left and cross the street at the intersection, she repeated the stranger’s response right at me. Although I knew that Zhenya was an excellent white-cane user and urban traveler, it felt like my entire body refused to accept it. I felt out of control and in a state of panic because of it.

As time went on, I gradually started distinguishing more signals. The sounds of cars signified where cars were and how they were moving. I could also hear when a lone car would approach us and hear when it would stop. I felt where buildings and walls were, as the sound would be duller from that side. The sounds of carts alerted to me that we were passing by a mall. My knowledge of the basic street structure helped me keep track of our location in relation to other strangers and cars. I heard when people would stop and start moving at traffic lights. The smell of cheap sausage would alert me of a hot dog kiosk that we would pass by. When we would step into puffy snow, I would realize that we were off the beaten path and it was time to return to the previous pathway. Zhenya told me she could feel the presence of large objects around her— through feeling that there is a big mass located nearby. A few times we would change our trajectory as if going around something. The second time we did it, I asked her what was happening. She would stop and tell me to extend my arm. Then I felt a car. We were going around a car parked on the sidewalk, a frequent occasion for a Russian street. With my white cane, I could feel the edge

299 of the sidewalk, poles in my way, trash cans, benches, parked cars, bus stops, piles of snow, fences, ice, trees. The longer we walked, the more informative the environment became, the more relaxed

I became, and the more I could feel and appreciate Zhenya’s ease of movement, quick decision making, and know-how. I did not register the moment at which I stopped fearing to hit a pole with my face, but I did at some point. Zhenya asked a few other passers-by about the location of

Tyubeteika; they helped us stay true to our course. When crossing the street, I heard the car engines and felt their heat as they waited for their turn to move forward. I also heard other passers-by chitchat, as they crossed the street with us. I felt the curb with my white cane and made a step up.

I did not register the moment at which this journey became quite enjoyable, but it did at some point.

And yet things around me appeared abrupt—there was little notice of parked cars, potholes, ads, staircases, anything. It felt like this way of navigation required my mobilization at every moment. And at the same time, as tiring as this was, I also had to stay alert and rely on those senses

I had, in order to keep going. My lack of skill in making use of the nonvisual abilities of my body and establishing enabling, trustful connections to strangers marked my experience as distinct from

Zhenya’s for whom this journey was just a regular activity that differed little from her everyday commutes and travels.

I also felt how different Zhenya appeared to me as I only listened to her voice and followed the movement of her shoulder. Although by then I had known her for at least half a year and we had become good friends, I found that my impression of and thoughts about her were quite different. I was fascinated by the lightness of her laughter when we would be lost and her calm voice that did not change one bit. Zhenya told me that she wanted to get some bottled water, so we went to a kiosk to buy a bottle. I knew what was about to happen—Zhenya went to the counter and asked for the bottle. The cashier said it is 50 rubles. Zhenya took a bill out of her wallet,

300 showed it to the cashier, and asked how much it was. 500 rubles. She changed the bill. The procedure repeated. Now it was 10 rubles, according to the cashier. On the third attempt, Zhenya took a 50 ruble bill out. The cashier took it and returned a bottle of water. Zhenya thanked her and we left. As we kept walking, I expressed my fascination with the ease which Zhenya assumed that the cashier would not lie to her and tell her the truth. Zhenya responded that she would also pay cash in taxis and shops if need be. Although she had come across a handful of cases when people took advantage of her blindness, she still preferred to keep trusting strangers and herself, because overall this trust had proven to be more enabling.

It was fascinating to me how deep-seated my assumptions about the super expertise of sightedness were—it was physically hard for me to make myself become oriented toward Zhenya, follow her lead, appreciate her practically acquired knowledge, and entrust my safety to her on this walk. The moment of transformation, the moving moment that White Caners expect a sighted person to experience, is the moment of surrender—to one’s own feeling body, to one’s feeling of the blind guide’s expertise and confident composure, to strangers, drivers, and fellow pedestrians.

Jokingly, Oleg once told me:

Do you know who populates my city? Whom do I get in contact with on a regular basis? Ninety percent are nice and kind people, who take time from their life and want to help me, and ten percent of the city are weirdos. Those who do not like me or who do not care enough, I don’t see them, they do not exist for me. My world is full of people I trust.

Oleg presented his urban experience as being mostly about encounters with people who were willing to help him. Although disabled activists and scholars have critiqued unsolicited help from nondisabled strangers who sometimes offer it too aggressively and unapologetically (Michalko

1998b; J. M. Hull 1990; Omansky 2011), Oleg did not mind it and instead interpreted this avalanche of assistance offers as a kind gesture. These offers of assistance presented opportunities for contact, a potentiality of a connection. Many factors—such as his disability, gender, class position, age, racial, and ethnic markers—intersect to produce the impression that strangers are

301 kind and willing to engage, as opposed to threatening, self-interested, indifferent, careless, or untrustworthy.

Histories of trust

Orientations to and away from others are historical and contextual, a result of coalesced forces. To add thickness to the diagnosis of failed trust and to Oleg’s ability to trust strangers in a contemporary Russian city, I provide a brief overview of anthropological research that has engaged with Russia’s dis/trust relationships.

Although Serguei Oushakine (2009), Caroline Humphrey (2002), Olga Shevchenko

(2009), and Jeremy Morris (2016) characterized postsocialist Russia as going through a period of acute social differentiation rooted in social mistrust, Alaina Lemon (2018) disagreed with this evaluation. In her words, “after three decades of fieldwork and study, I reject assertions that mistrust and illusion structure the ways people in Russia actually relate, any more than they do in other places I have lived. Instead, people there begin, probe, and nurture relationships even against proliferation of narratives driven by paranoid logic, filling them out over time” (Lemon 2018, xx).

Instead of universal mistrust, Lemon’s research on technologies of intuition and trust demonstrated how fragmented and sophisticated techniques of trust-building are in Russia and other contexts.

Trusting others in Russia has been addressed through various lines of inquiry: the trustworthiness of the press (Roudakova 2017), the integrity of political agency (Yurchak 2006;

Boyer and Yurchak 2012), the reliability of the medical system (Rivkin-Fish 2005), and the addiction rehabilitation complex (Raikhel 2016), among others. The politically complex Soviet environment served as fertile soil for the proliferation of various communities of trust: hippies

(Furst 2012), punks (Gololobov, Pilkington, and Steinholt 2016), deaf people (Shaw 2017), to give but a few examples. Communities of trust persist over time, taking various forms and morphing according to specific demands and circumstances. Personal networks of peers helping each other

302 to survive in a post-socialist industrial town, for instance, would be an example of a contemporary community of trust (see Morris 2016). Amidst the world of discomfort, lack of resources and support, postsocialist industrial town dwellers keep relying on trusting relationships and orientations that emanated from preceding histories of the collaborative development of habitability of a life world. Going through a similar dynamic of getting-by, religious and nonprofit organizations functioned as such communities of support and trust (Caldwell 2016).

Against the dominant Western assumption that associates trust with transparency and unapologetic truth-telling, Lemon (2018) offers a subtle analysis of deliberate opacity and information curation within a context populated by numerous communication channels. The sense of trust, she argues, “emerges over time, not through individually sincere expressions of referential fact” (Lemon 2018). Her observations led her to see trust as based on carefully choreographed communication and temporally extended delivery of information, paced and presented with care to others. This pattern of trust-building and maintenance has taken its shape as a result of years of state surveillance, grassroots networking, and corporate manipulations.

Experts of trust

Communication and interaction between people with and without disabilities can help with addressing the problem of inoperative social trust, my interlocutors opined. This imagined effect was based on two distinct forms of expertise that my interlocutors imagined. One is the expertise of blind people who by virtue of their blindness train their ability to entrust themselves to others on a daily basis. The other is the expertise that emanates from communicating with a different person, a person whose embodiment, ways of presentation, or nonnormative reasoning present a challenge and a possibility for rethinking the familiar and the known.

Blind authors have mentioned the Stephen Kuusisto opens his memoirs with a vignette whereby he and his dog Corky are at a railway station:

303 I’ve entered Grand Central Station with guide dog Corky, my yellow Labrador. We stand uncertain, man and dog collecting our wits while thousands of five o’clock commuters jostle around us. Beside them, Corky and I are in slow motion, like two sea lions. We’ve suddenly found ourselves in the ocean, and here in this railway terminal, where pickpockets and knife artists roam the crowds, we’re moving in a different tempo. There is something about us, the perfect poise of the dog, the uprightness of the man, I don’t know, a spirit maybe, fresh as the gibbous moon, the moon we’ve waited for, the one with the new light. So this is our railway station, a temple for Hermes. We wash through the immense vault with no idea about how to find our train or the information kiosk. And just now it doesn’t matter. None of the turmoil or anxiety of being lost will reach us because moving is holy, the very motion is a breeze from Jerusalem. This blindness of mine still allows me to see colors and shapes that seem windblown; the great terminal is supremely lovely in its swaying hemlock darknesses and sudden pools of rose-colored electric light. We don’t know where we are, and though the world is dangerous, it’s also haunting in its beauty. Even to a lost man with a speck of something like seeing, this minute here, just standing, taking in the air as a living circus, this is what tears of joy are for. A railway employee has offered to guide me to my train. I hold his elbow gently, Corky heeling beside us, and we descend through the tunnels under the building. I’ve decided to trust a stranger. Welcome to the planet of the blind. (Kuusisto 1998, 1–2, emphasis mine)

Vera Simakova’s organization’s—Blagoe Delo, a prominent disability NGO in the

Sverdlovsk region—unique feature is its firm intention to cultivate a community and to provide its participants with a safe space for growth, exploration, and mistakes. A group of neurodiverse people, this community organizes workshops for artistic creation, crafts, music, and theatrical performance, as well as a communal living space for people with mental disabilities. Celebrated for their effective techniques to provide a supportive environment to adults with mental disabilities

(a demographic marginalized among disability-focused programs), White Cane recruited them to provide instruction on the foundational principles of effective communication with neurodiverse people, as part of a larger project on inclusive communication. As the appointed person from the organization was struggling with laying out precise “rules” or tips, she told me that she found this a tough if not impossible task. Because of the sheer variability and dynamics of one’s mental and bodily condition, it becomes impossible to give stable, short instructions on what exactly to do.

Instead of providing technical training, they provided a recommendation to cultivate specific features and orientations, which were imagined as helping in figuring out the individual way to address each particular situation. Years of work with recurrent and new members of the community made them “train the muscle of openness, sincerity, and trust” over and over again, as a female

304 worker of the organization told me in an informal conversation. In her interview, Vera Simakova says:

Above everything, we lack trust in our society. Inclusive interaction can return trust to our society. Because inclusive interaction without trusting the person is impossible. We should, first of all, respect the person, and second, trust them, in order to do something together... This feeling—that we can do many things together and that it is only from a trusted relation that something new may be born— permeates inclusive interaction. Trust. And also, inclusive interaction helps overcome fear. The fear of the future, the fear of difference, the fear of misunderstanding. The fear that there is no purpose—for why we live and what comes next… Inclusive interaction is only possible when people communicate on a deep, personal level, and this is only possible when the fear is removed. These are the two sides of the same. When you engage in inclusive interaction, the fear goes away. Before this interaction, it remains. When you overcome fear, you become capable of inclusive interaction and trust emerges... We lack trust in our society—nobody trusts each other, I mean, few people trust each other. We fear the new. Fear something different. We fear that which we do not understand. These things inhibit us. 50

Vera Igorevna conceptualizes inclusive interaction as a possible remedy to the broader societal problem—that of social debilitation caused by the fear of the other and the lack of trust. An unexpected solution that is offered by the less privileged, disability inclusion promises to change the ways in which nondisabled people relate to others and themselves, not only to people with disabilities. In this solution, people with disabilities act as experienced pedagogues, recruited to gradually work on the nation to restore its ability to engage with each other.

Conclusion

Around the world, inclusion addresses different problems. As actors involved in responding to the inclusion mandate design measures to cultivate and organize inclusion, they also configure problems for inclusion to solve. A problem for inclusion that I have addressed in this chapter is symptomatic of the social reality in which it was created and which it was supposed to reform. Without the use of disability rights discourse, my interlocutors developed an interpretation of inclusion as a tool to address fragmented sociality by ethical means.

50 https://www.youtube.com/watch?v=KKSJC9PQa9o accessed on 12/30/2018, translation is mine

305 My blind interlocutors claim that they have developed an extraordinary ability to trust themselves and others due to their experience of living with blindness in a place organized around the visual sensory norm. They orchestrate opportunities for sighted individuals to experience such levels of entrustedness to the world, as they offer guided tours to sighted blindfolded clients. Far from being an attempt to try-blindness-on, such guided tours aim at cultivating an appreciation of blind people as experts of navigation and social communication by nonvisual means. In the broader climate of interpersonal and institutional mistrust, voiced and recognized by both my blind and sighted acquaintances in the field and in Yekaterinburg in general, this ability presented itself as a valued tool to address the broader problems that transcend the locality and specifics of the disability domain.

Interrupted trust relations have been perennially present in society throughout Russia’s history, across different groups of the population. Thus, blind people or people with disabilities are not exceptional subjects and objects of mistrust. What resonates across the divides of social groups and communities is often the unfulfilled promise of trust to institutions and fellow citizens.

The problem for inclusion—broken circuits of social trust—thus becomes the problem of mistrust between everyone and every institution, which thus resonates with other people’s experiences of lost hope and betrayal, alongside the pressing need to collaborate and cooperate in figuring out viable solutions.

306 Chapter 7 On Liveliness

Introduction

“Wow.” As my sighted friend Alina and I were leaving the annual inclusive regatta in

Yekaterinburg, Alina was trying to find words to express her emotions: “I have not met people that are so lively in a while [Ya takikh zhivchikov ne vstrechala davno].” About an hour before, she participated in a sailing race for the first time in her life. She sailed on a small boat in a mixed team: a sighted teenage captain, a blind sailor, a sighted NGO worker, and her. A friend from middle school, Alina had been curious about my research since its beginning in 2014 and had no prior experience of hanging out with blind people or people with other disabilities. She had thought

I did social work and could not wrap her head around the idea that my blind interlocutors did not conceptualize themselves as tragic, sick, or abandoned persons. So, when my blind interlocutors were organizing an inclusive regatta, I extended their invitation to her. As I expected, she told me afterwards that this moment for her was a “pattern break” [razryv shablona], which is a Russian expression that denotes an event or a thing that challenges one’s preconceptions and triggers changes in one’s perspectives. For Alina, meeting enthusiastic and active blind people who sail at their leisure and who organized this event for others to join it for free was a pattern break. Alina’s reaction that she shared with me was one of many that I observed during fieldwork—my blind interlocutors frequently shook the world of sighted strangers and new acquaintances who were triggered by a discovery of the unexpected vibrancy and liveliness in a place where they usually expected to see stillness, incapacitation, and abandonment.

The liveliness of my blind interlocutors was particularly surprising for many sighted individuals because of the expectations that the latter had of the former: sighted people often voiced their assumptions that the lives of blind people are poor, ridden of joy, and full of recursive

307 suffering. In this chapter, I explore this liveliness and its intensified thickness due to the disability of its protagonists. I examine the ways in which my blind interlocutors—those who organized the sailing race in the vignette above—cultivate social liveliness among mixed groups (blind and sighted) in a regional urban center in Russia in the mid-to-late 2010s. Conceptually, I am interested in how certain actions and activities of blind people and their sighted allies facilitate the interlocking between individual and social liveliness. I examine what made Alina experience this event as a discovery and how my blind interlocutors intentionally cultivate such impactful forms of social presence. I make a two-fold argument: first, that some blind persons in Russia actively work against being socially labeled as “patients” who are imagined as passive and noncontributing; second, that through cultivating individual liveliness, they attempt to change their communities.

The Oxford English Dictionary defines liveliness as “the quality of being outgoing, energetic, and enthusiastic,” with a secondary definition being “an atmosphere of excitement and activity.”

Through linking the individual quality of being lively to the social atmosphere—and expectations—of liveliness, my blind interlocutors change broader cultures of civic participation and social attitudes toward people with disabilities.

Conceptual framework

The concept of social death developed by Joao Biehl in his seminal work Vita (2005) captures the more extreme cases of social exclusion and the destruction of social personhood. Biehl defines social death as the decay of one’s body and personhood in the face of their social abandonment. Social death is a specter that haunts many disabled people in Russia: the risk of social death persists because of the lack of effective physical accessibility infrastructure (Hartblay

2017; Naberushkina 2012), because of the sometimes dehumanizing conditions of life in institutions for people in need of substantial care (Nyuta Federmesser’s presentation on conditions of life in special home-institutions for people with mental disabilities and institutions of palliative

308 care http://president-sovet.ru/presscenter/news/read/5612/), because of the multiple commitments, pressures, and challenges among care-takers (Klepikova 2018), because of the discriminatory attitudes and representations that feature people with disabilities (Iarskaia-Smirnova and Romanov

2014), and because of a lack of opportunities to participate in the social on an equal basis (Iarskaia-

Smirnova and Naberushkina 2003; Naberushkina 2012; Romanov and Iarskaia-Smirnova 2006).

Against this specter and against the deadly materializations and internalizations of this specter, my blind interlocutors cultivate liveliness—of themselves as persons and of their community.

Mel Chen chose animacy as their analytics to “theorize current anxieties around the production of humanness in contemporary times, particularly with regard to humanity's partners in definitional crime: animality (as its analogue or limit), nationality, race, security, environment, and sexuality” (2012, 3). I choose to theorize liveliness—instead of animacy or being animated— because I am particularly interested in the domain of recognized forms of enthusiasm and socially valued activities, on the one hand, and circuits of capital circulation that these activities fuel, on the other. My interlocutors were interested in participating in the world that is not about survival but is instead about a particular form of life they find valuable and value-generating.

Finally, I conceptualize this orientation toward individual and collective liveliness as a form of biopolitics and a form of postsocialist governmentality—the formation and maintenance of a population by governing people’s conduct, with people willingly participating in this form of governance (T. Campbell and Sitze 2013; Foucault 1990b; Lemke 2011). It is a form of biopolitics because it governs through the incitement to a particular lifestyle, a form of political and social life—the circuitous liveliness of the individual and the collective. The perceived and experienced liveliness of my blind interlocutors is not about their survival or their biological life as humans under the exclusionary conditions of an inaccessible environment and exclusionary institutions

(zoē as bare life, see Agamben 1998). Instead, it is about cultivating productive and self-sustained

309 (or self-disciplined) populations through developing habits, values, interests, and forms of subjectivity that are compatible with the contemporary postsocialist condition.

This form of governmentality is postsocialist as it demonstrates features of a neoliberal orientation and is, at the same time, inflected by reverberations of the socialist past. On the one hand, the adults who push forward social projects on inclusion in their majority are allergic to structural changes and instead focus on individual work on the self because they see the individual as the ultimate driver of social change (Rivkin-Fish 2005). This is also quite Latourian (Latour

2007), because it is allergic to abstractions and instead operates at the level of the materialization of such abstractions, the ultimate form of expression of which is the individual with their habits, concrete choices, routines, and actions. Yet on the other hand, even in the mid- and late 2010s, the

Soviet patterns of policy, forms of community building, and social presence featured prominently in the repertoires of my blind interlocutors, disability-focused governmental agencies, and individual activists. Subbotniki (collective cleanups of the nearby public area), krugovaya poruka

(collective responsibility), and the use of collectivist and productivist metrics to evaluate the worth of an action, person, or project, all indexed recognized Soviet forms that survived state dissolution and persisted through changing patterns of political, socioeconomic, and cultural changes.

The overmedicalization of blindness

On a day in October 2017, a man with a teenager came into White Cane’s office. The man guided the girl as she held his hand. They sat down and Oleg asked them what had brought them here. The man introduced himself as Alexei and the teenager as Nastya. He turned out to be the father of this teenager girl, who was then about eighteen and who was blind. The man talked, the girl sat quietly. He told us about his daughter’s diagnosis and that they had tried different ophthalmologists in town, around the country, and abroad. Nobody had been able to offer a solution that would improve Nastya’s vision. Although Nastya had been blind for more than a

310 decade at that point, they kept waiting. Alexei proceeded to say that they had heard about White

Cane and wanted to see what opportunities White Cane had to offer. Did they know better doctors?

Oleg directed his response to Nastya, the teenage girl, and not her father. Instead of providing the guests with a list of programs and opportunities that White Cane offered to blind individuals, Oleg posed a question: What do you do, Nastya? The man responded: She is a student. Oleg asked in response: Can Nastya speak? Nastya then responded, Yes I can. Her voice sounded quiet and timid.

Her father looked tense and worried.

“What do you want to do when you graduate from school, Nastya?”51 Oleg asks.

“I don’t know, I haven’t thought about it yet.”

“You haven’t thought about it? But you are already eighteen, you have to think about how you can be helpful to others, what you would like to do. Do you use a white cane to move around?”

“No, my father or my mother guide me.”

“Nastya, you have to learn how to use a white cane, if you want to have a good life.”

Oleg stood up from his desk, assembled his cane that had been sitting on his desk to the side of his keyboard, and walked to the bookshelf. He found a box of brand-new white canes there and simultaneously asked how tall Nastya was. 167 cm [~5’5 feet]. He showed me the box as he asked me if I immediately saw a case with a cane of the appropriate size. I did and I handed them the cane they were looking for. He thanked me and walked towards Alexei and Nastya to give her the cane. Now, come with me, Nastya, not you, sir, he addressed the father. Alexei looked at him full of confusion. We are going for a walk, Oleg said and turned to the father, emphasizing that the next phrase was coming directly for him: Alone. You cannot come. Sveta will make you some tea. The father said that he could not let her go alone, that it was too dangerous. Oleg suggested

51 I use quotation marks here to separate Oleg’s words from Nastya’s, although they are still approximations to what they said (I reconstructed this dialog based on my fieldnotes taken soon after the conversation).

311 not to worry. Half a minute later, as we still heard the sounds of white cane tips hitting the floor in the hallway that leads outside, the father told me he could not stay here as his daughter was alone on the street. I told him she was not alone, she was with Oleg. He replied by saying but Oleg was also blind. He looked intense and worried. He felt he needed to make sure that they were safe and okay. I told him that I would go with him, but we would stand at a good distance, so that Oleg and

Nastya did not hear us. The father agreed and we went. Outside, we stood far enough and observed.

The father whispered to me that this was all such a tragedy and that they did not know what to do with Nastya’s future, they had tried every doctor they could think of. I muttered back that they had come to the right place.

As we stood and watched Oleg and Nastya, they seemed to be having fun. Oleg was showing her how to swing the cane while walking, what objects and sounds and textures he paid attention to, how walls sounded, and what to do if she stumbles upon a car or sighted person. He told her to always, always make herself heard and seen. And he said that in a few months, if she kept practicing using a white cane, she would be able to leave her house, take a bus, go to the airport, fly to Rio De Janeiro, go to the beach, swim in the ocean, go back to the airport, return to

Yekaterinburg, take a bus home, and walk up the stairs to her home. All by herself. She just needed to keep practicing and keep her father busy with something other than living Nastya’s life for her.

I saw Nastya’s face widen with a smile.

In Nastya’s story52 I recognized a myriad of other stories that I had come across during fieldwork. Stories about containing blind lives in the box of medical conditions, listing

52 This story is by no means the only one that dominates the scenarios of people with visual impairments in Russia. There were stories of aggressively independent individuals, stories of entrepreneurial persons who use stereotypes about blindness to their advantage, when possible, stories of self-educated and self-formed advocates, stories of blind professionals who preferred to minimize the ways in which blindness figured in their professional and personal lives, among other. Hence, I use this one narrative—the one I associate with Nastya—as an entry point for broader conversations about the complex processes that result in the overmedicalization of blindness.

312 ophthalmologists as the ultimate hope for saving (Michalko 1998a), excessively overprotective parents of a blind child, blind people trained to rely on their sighted relatives in practically every aspect of their life, lack of expectations for self-realization, lack of education in advocating for oneself, boredom, self-pity, lack of embodied skills for living and moving around independently, and complex negotiations of passing and publicly identifying oneself as blind (Kleege 1999; J. M.

Hull 1990; Omansky 2011). People who lived through such stories frequently came to Oleg to seek help as they found themselves in a vicious circle: constantly waiting for medics to come up with a solution to fix blindness and not receiving such a solution.

Although a patient and a social participant are not a binary and one can be both (for an example of citizen science, see Murphy 2012) or neither, these two roles are distinct and antithetical in the imagination of my interlocutors. In other words, for them, the inclusion of people with disabilities is predicated on the departure from the vocabulary of patienthood (for a discussion of a similar concept of patientism see Mol 2008) toward the vocabulary of social participation.

This shift is also a shift in the source of people’s value: instead of being valued for what they are— patients or parents or professionals—the goal is to be valued for what one does. An active social participant connotes the realm of contribution and exchange, participation in the formation of the world and its inhabitants; its focus is on action; and individual actions become subject to a moral metric that is rather different from that for a patient. For my blind interlocutors, social participation and engagement take many forms: generating content on the Internet and print materials, volunteering for events and festivals as workshop holders and speakers, offering their support and services to other blind and sighted persons, and working on and participating in educational programs for children and adults. Social participants are subject to a normative scheme of moral assessment—which actions count as meaningful and significant, which are encouraged, which are

313 critiqued, and which are forgotten with indifference (see also Adelman 2014; Fludernik and Nandi

2014; Knighton 2016; Rose 2017).

The classical functionalist concept of “the sick role” developed by American sociologist

Talcott Parsons in the mid-twentieth century (T. Parsons 1951) can help us better understand the

“patient” side of the proposed antithetical pair. Parsons interpreted illness as an accepted form of social deviance the management of which was carefully scripted in capitalist societies (Petryna

2013). To manage and contain illness—a state of temporary unproductiveness, in Parson’s thought—capitalist society relies on the sick role, a scenario where the ill individual temporarily relinquishes their autonomy and other social roles and voluntarily submits themselves to a committed medical expert for treatment (Varul 2010).

The key feature relevant for this chapter is that the sick person in this theory is one who is socially sanctioned to be temporarily exempt from all obligations other than an obligation to restore their health to be able to function as a productive member of society again. This concept does not serve well as an explanatory device to interpret the experiences of my blind interlocutors

(including that of Nastya) and the structural conditions within which they live for a number of reasons. First, increasing protectionist measures for the pharmaceutical industry and medical devices (Jargin 2013), as well as its accompanying discourse that links the development of Russia’s biomedical industrial complex with the biopolitical matters of national security and survival, challenges the assumption that organized biomedicine exists outside of economics and politics only to serve the sick population and make them recover as soon as possible. Second, unlike in the model capitalist societies where medical professionals have access to sufficient economic and social capital, the public and privatized systems of Russian healthcare produce the conditions whereby medical professionals have to individually find ways to earn livelihood under more and more challenging conditions (Matza 2018; Nikolaev 2015; Rivkin-Fish 2005). Third, many

314 individuals cannot afford to remain unemployed or fully dedicated to their own healing—if they need one—due to the increasing commercialization of healthcare and their low wages (Ivanov et al. 2014). Fourth, the very existence of incurable impairments and chronic conditions—and often blindness is permanent and incurable—challenges the assumption that this condition is a temporary state of exception. Finally, blindness is not necessarily experienced as sickness (for other blind people’s accounts on blindness see Kleege 1999; J. M. Hull 1990; Omansky 2011).

The sick role, thus, fails to provide an objective description of the experiences of blind people in

Russia.

Instead, I use Parsons’s concept to interpret the circulating stereotype effectively reproduced in interpretations of blindness generated by authorized spokespersons and other authoritative figures whose vocal positions reverberate across social contexts as stereotypes, policies, and naturalized truth. In public discourse, blind people often receive the status of sick persons, while ophthalmologists receive the status of morally benevolent and committed subjects who work toward curing blindness and other eye-related conditions without any other gain. This moral profile of medics as well as their perceived exclusive expertise position them to serve as authorized spokespersons for blindness par excellence. Importantly, this medicalized understanding of blindness as a sickness that under positive circumstances should be cured circulates as an ableist structuring thought that informs the ways in which social institutions run, as well as the self-conceptions of individuals discovering themselves as blind (see more on the tactics of internalized ableism in Campbell 2009). In other words, blind people also learn to perceive themselves as sick and in the waiting for a technoscientific fix of a problem that prevents them from acting toward being recognized as a productive member of society—they learn to attribute the problem of social exclusion to their sensory patterns without accounting for the broader factors that limit their opportunities. They learn that their blindness stands in their way of

315 living a full social life and that by fixing blindness these problems would go away. There is a significant gap between the idea that blind people occupy the sick role and the lived experiences of my blind interlocutors who experience their blindness not as a condition of suspension but as a position of deep engagement and intensified sociality.

The medicalized interpretation dominates today’s palette of roles, although throughout

Soviet and post-Soviet Russian history people with disabilities were perceived differently: as dissidents (Phillips 2010, 72), socially responsible athletes (Phillips 2010, 74), heroic warriors

(Edele 2009), beggars (Romanov and Iarskaia-Smirnova 2006), disability rights advocates

(Fefelov 1986), and as workers, idlers, and welfare recipients (Petryna 2010). When disability emerged as a political category in the USSR, the Soviet state used the functional model of disability

(Phillips 2010), whereby a disability status was given to individuals who were unable to realize their usefulness for society in the conventional form of labor congruent with the system of official employment. The matters of disability became especially acute after World War II (Shaw 2017), when more than 2 million soldiers returned home with some kind of disability (Fieseler 2005). In the aftermath of WWII, medical experts were sanctioned by the Soviet state to identify the remaining labor capability of returned soldiers, as opposed to the labor ability that they had lost.

Individuals with physical differences who were able to work may not have received the disability status which would entitle them to state-provided pensions (Fieseler 2005). Additionally, disability status was given for a limited amount of time—often for only a year—so that the citizen would have to go through the examination again to see whether their ability to work has changed.

From Claire Shaw’s (2017) brilliant analysis of the history of the All-Russian Society of the Deaf during the Soviet era, we learn that deafness had been conceptualized as a unique form of selfhood rather than a medical condition. The self-organization of deaf people into the All-

Russian Society of the Deaf allowed for the subsequent development of a vast network of industrial

316 sites, cultural spaces, schools, and close-knit deaf communities. The medicalization of deafness began with the shifted investments into the development of the technoscientific complex during the Cold War and the emergence of hearing aids as an offered solution to “treat deafness.” With the increased role of technology and science in everyday life, the increased accessibility and affordability of such devices, the dissolution of the political and socioeconomic systems that sustained deaf communities, and the intensified interaction with the international Deaf community, deafness in the late USSR and post-Soviet Russia became increasingly understood as a medical condition.

My research of the history of VOS (the All-Russian Society of the Blind founded in 1925 and still active) based on the memories of VOS members and documented accounts of VOS conducted by VOS members showed a similar tendency. Blind people constituted an idiosyncratic group of people with disabilities who managed to develop a sense of community and a sense of usefulness through their work in special factories, libraries, etc. A strong system of special schools where blind children received due training in Braille, the use of white canes, and daily living skills, complemented by a vast system of specialized enterprises that hired blind employees and provided them with “good salaries,” prevented the idea that blindness is a wasteful and a tragic condition that is profoundly incapacitating.

The medicalization of disability in general, and blindness in particular, intensified after the dissolution of the USSR. There are several factors that contributed to it. First, the changed system of social support. The VOS system went through a challenging crisis and lost its role as the community organizer and an advocate for the rights of blind people in Russia. VOS enterprises that survived the crisis ceased to provide work conditions and salaries for blind persons that would provide financial and social security. With the restructuring of the political and economic system, fewer opportunities emerged for collective action and instead left blind people to rely on their

317 individual ability to navigate the bureaucratic maze and procure access to pensions and welfare payments. In this context, blindness became a substantial disability discriminated against, something that was not appreciated in society and a condition that did not work to the advantage of a person.

Second, the development of ophthalmology in the Soviet Union, which intensified from the 1960s on. In 1967, Sviatoslav Fedorov, Valeriy Zakharov, El’za Zakharova, Al’bina Ivashina, and Aleksandr Kolinko formed a scientific-research problem laboratory in ophthalmology at the chair of eye diseases of the Moscow Medical Dental Institute. Their research was to work primarily on the creation of the intraocular lens. In 1986, the research collective founded the Interbranch scientific and technical complex "Eye Microsurgery" (MNTK Mikrokhirurgiia glaza) that still in the present day functions as a major research and clinical ophthalmological facility in the country, conducting advanced ophthalmological research and providing subsidized and commercial eye- care services to the population. With the establishment of the MNTK Eye Microsurgery and the opening of eleven networked centers around the country and increased funding toward the development of domestic ophthalmologic technologies, the scope of treatable conditions and diseases changed. If in the 1980s the leading cause of blindness was eye-lens pathology followed by glaucoma, injuries, degenerative myopia, and optic nerve atrophy, then by 1996, the number of cases when eye-lens pathology led to blindness decreased by half (Fokin 2005). At the same time, it must be acknowledged that the economic situation of medical professionals in the late USSR and post-Soviet Russia was and is not similar to wealthier Western countries. Medics are often underpaid and rely heavily on the unofficial economy of exchanges to be able to sustain themselves at the minimal level (Rivkin-Fish 2005; Matza 2018).

Today, the overmedicalization of blindness takes place on all three levels identified by

Conrad: the conceptual, the institutional, and the interactional (Conrad 1992, 211). It has been

318 overmedicalized on the conceptual level, as blindness is colloquially defined through the terms of contemporary biomedicine, downplaying and often ignoring forms of knowledge about blindness produced by competing explanatory systems such as religion or disability-rights discourse. The institutional level of the overmedicalization of blindness takes the form of a monopoly of biomedical expertise and diagnosis as the access point to state-provided benefits.

Ophthalmologists’ opinions about the kinds of life and the scope of abilities available to the diagnosed person bear significance for securing further access to public infrastructures of support.

Finally, the interactional level of overmedicalization is instantiated through the common limitedness of public knowledge about blindness as anything beyond a medical problem. This monopoly of biomedical discourse mediates conversations among strangers, family members, and colleagues, and becomes the tropes and figures through which blind and sighted people establish and nurture relationships with each other.

In the case of blindness, overmedicalization imposes substantial problems and barriers.

One such barrier is linked to institutional overmedicalization. Among Russian medical experts— those individuals who are socially authorized to generate authoritative knowledge about blindness—ideas about blindness are no less stereotypical and uncritical than among sighted laypersons. In a mini-survey I conducted during fieldwork, I asked a group of nurses and ophthalmologists from a large regional eye clinic (total N=24) about how they imagined the lives of blind people. The majority responded that the lives of blind people are hard and difficult: “it is very hard for them on public transportation and on the street,” “it is impossible to survive without external help,” “it is worse now than during the USSR,” “they are very limited,” “difficulties with social adaptation,” “every day is a struggle for survival, overcoming oneself, overcoming barriers,”

“facing a big number of physical and psychological problems,” “only a person with a strong will and substantial optimism can adapt and live a full life,” “limitations in everyday life,” “their

319 opportunities are limited by [inaccessible] infrastructure and people.” Although a few people commented that they had observed some improvements in the quality of life of people with visual impairments, their formulations were vague—nobody could name any concrete improvement or way in which blind people lived lives the concerns of which transcended the “problem of broken eyes.” Overall, the image that ophthalmologists and nurses associated with blindness was one of failure: of their failure to fix the individual problem through biomedical interventions, of the failure of the state to sufficiently support blind people, of those individual pair of eyes that failed to ensure their patients’ ability to see the world according to the established patterns of normality.

In one of the interviews, an ophthalmologist commented that they perceive cases of blindness as their professional failures, they experience the sense of guilt and helplessness (similar discussion can be found in Michalko 1998, 59).

It is crucial to highlight that eye medics typically have quite limited experiences in interacting with blind people. And within this limited experience, they interact with a subcategory of blind people who typically reproduce existent stereotypes about blindness—because they are in fact sighted people who have recently lost sight. First, beyond delivering the diagnosis and communicating with the patient and their family members about further paperwork, the eye medics do not interact with blind people afterwards, unless there are other eye-related problems to be addressed. The blind population that these medics encounter and interact with is the one that has just learned about the absence of a cure and the irreversibility of their developed sensory schema that is not immediately supported by Russia’s ocularcentric environments. For individuals well trained to live in the visual world, use visual information, and comprehend the world as seen, the declared inability of technoscience to maintain their ability to see often causes dramatic shocks and depression. In their everyday practice, eye clinicians simply do not come across blind individuals adept in using a white cane or a guide dog; they do not interact with confident blind

320 users of smartphones and computers, and blind people with developed functional and effective skills of navigating the everyday as blind persons.53 Instead, medics interact with previously sighted people trained and equipped to live sighted lives and now pushed to develop their sensory and practical apparatuses anew under the productivist pressures of a capitalist society.

Even within the healthcare system, experts that work on different segments are rarely connected. Specifically, what matters here is the impoverished communication between rehabilitation specialists and ophthalmologists. Without a centralized system of communication in health care, this contributes to the reproduction of collective irresponsibility (Rivkin-Fish 2005).

Michele Rivkin-Fish characterizes Soviet and post-Soviet health care as fragmented and discontinuous, based on narrow specialization and the lack of a holistic approach. Without communicating with rehabilitation specialists, ophthalmologists themselves operate based on their stereotypical knowledge about blindness and the limited opportunities available to blind people today. Several of my blind interlocutors mentioned that they were not even referred to a rehabilitation specialist by their eye doctor. They were just discharged from the eye clinic for there was “nothing else the doctors could do.” Although critique has been voiced concerning the rehabilitation system and how it is organized around the trope of productivity and normalization

(L. Davis 2014; Michalko 2002), my point is to show that the authoritative discourse around blindness does not even get there—to the possibility of conceiving of blindness as anything but a tragedy and a state of exception. They do not reach over to the possibility of talking about blindness as even potentially capable.54

53 https://youtu.be/BioEEOIWT6o, 1:36, Oleg Fabrikantov, the head ophthalmologist of the Tambov eye microsurgery clinic 54 I certainly do not intend to villanize medics. All medical specialists I came across in my research expressed genuine commitment to the wellbeing of their patients and remorse at their inability to aid some of their patients in keeping normal vision. An important point to acknowledge is also that patients and doctors are not in equal positions, but the picture is much more complicated than the one that depicts doctors as masters and patients as serfs (see the critique of this assumption about patriarchal relationships between patients and doctors in Mol 2008, 29– 41). Anthropologists have examined Russian health-care system to find the complex and intricate logics that factor

321 Hence, it is not a surprise that Nastya’s father used a medicalized narrative—what he deemed important he expressed in matters of visits to doctors and biomedical reports. I have witnessed multiple situations through which alliances were made with the help of medical parlance—after all, if a person hasn’t had access to experiences of disability, their own or of others, they would most certainly know the medical language, or at least recognize its authority and be able to relate to a disabled person as a fellow biological organism. By no means do I intend to belittle the experiences of Nastya and her father and render them right or wrong. Instead, I draw the reader’s attention to their fluency and readiness in overmedicalizing blindness in public. As a result of living in a place where they had to tell this story to different stakeholders in medical terms in order to be understood and related to, they both developed fluency and even internalized the values and terms embedded in this parlance. They learned to codify their ethical commitments and hopes for the future in relation to the medical domain: Nastya’s father, akin to parents interviewed by Cheryl Mattingly (2010), emphasized their hope that one day they will find a solution that would fix Nastya’s eyes and return her an ability to see. His hope was not that she one day would make a difference in the ways sighted people treat blind people. His hope was that one day, Nastya, with the assistance of the medical technoscientific complex, could see again. As one of my surveyed medical professionals responded, it is a typical trend among younger patients to ask about the latest technological developments, about “nanotechnology and experiments that make miracles.” The listservs of blind people I observe collect and disseminate news that the moderators deem relevant and important for the community. Time and again, they share information about yet

into this communication: the fact that clinicians do not make much money and thus often they are on different sides in relation to class division lines (Matza 2018; Rivkin-Fish 2005); that the only source of autonomy and power becomes the unique knowledge they have and the cultivated ambiguity of knowledge presented to the patient (Rivkin-Fish 2005); that structural factors – such as economic and political disenfranchisement of medics as well as new neoliberal tools to measure their productivity (Nikolaev 2015) – are not taken into account hence the solutions to these problems are not structuring and empowering but instead focus on the cultivation of individual moral responsibility, among others.

322 another device—retinal implant or brain implant—that engineers and scientists (and thus by proxy all society) deem useful for vision recovery.

A choice between different conceptualizations or models of disability becomes a choice between different communities (of those who share the same conceptualization). I am not advocating that one model is better than the other; each opens up opportunities to different networks and a differing scope of possibilities. The medicalized version of blindness—the conceptualization of blind people as sick—opens up access to the broader population, because blind people fluent in the medical parlance become fluent in the normal(ized) discourse about blindness. The familiarity of this parlance is one form of capital that may secure livelihood— through access to the state-provided pension, for instance. Importantly, I do not wish to make an impression that my interlocutors completely reject the medical model. Similar to what Sarah

Phillips (2010) calls mobile citizenship, they creatively mobilize different models of disability and their relationship to the state as disabled people. Sometimes they use the medical model, if it promises to deliver substantial benefits. Other times, they would instead opt for a model that highlights their productivity and social contributions. And yet other times, they would choose to identify as “also humans” [tozhe liudi]. What they critique is not the medical model per se and the medicalization of blindness. They critique the overmedicalization expressed in the situations of misattribution of authority to ophthalmologists on questions of ways of life that are open to blind persons.

On hearing the narrative about Nastya’s medical history, Oleg interrupts: “what can you do?” While posing this question, he is not asking about any activity she can perform—he is asking about an activity that falls under the label of a “socially significant” [sotsial’no znachimye] activity, which I examine closer in the next section. He emphasizes that it is important to shift one’s attention from medical labels to what one is able to do as a blind person—what their interests

323 are and how these interests will be materialized. Oleg is also asking Nastya about her ability to conceptualize herself as a subject of a collectivity within which her actions and performances may be consequential and mattering. He is inviting her to think of herself not as an individual but a participant who finds the realization of their abilities in a collective. It matters because one manages to realize their potential through actions and framing these actions in ways that would be understood and valued by others.

Forms of liveliness

In his work on working class lives in a Russian postindustrial city, Jeremy Morris (2016) introduces the concept of the unhomely present which captures the condition and traumatic experiences of underpaid workers and their unemployed neighbors who lost their jobs due to massive layoffs from the industries that in the past used to sustain the town’s economy. Morris’ protagonists are everyday endurers who struggle in the face of broken infrastructures and a lack of resources available to them to make a living—a set of conditions that could be characterized by

Elizabeth Povinelli’s concept endurance in the face of abandonment (2011). They maintain their feeling of self-worth through the trope of the Russian nation’s exceptional endurance and passive resistance to hardships. This trope transcends the limits of Morris’ research context and is instead ubiquitous among many differently marginalized groups (Verdery 1996). The idea about the national ability to survive long-lasting crises (Shevchenko 2009) and endure hardship surfaced regularly during my fieldwork in seemingly unrelated contexts: enduring the negative effects of

Russia’s increasing international isolation, enduring abusive relationships for the sake of keeping the relationship afloat, enduring misfortune, and enduring blindness. What united these contexts was the challenge to inhabit an unhomely place and time, that is, a place and time that did not provide enough resources to make their inhabitants flourish. The trope of endurance intimately connected to the concept of unhomely present relies on the idea that positive changes to this present

324 moment are external in their origin and thus that individual and collective well-being depends on a far-away power that would come to relaunch the local economy and create jobs, or bring about a solution to make one see. Against this specter, my interlocutors spread the imperative of social liveliness—they work toward making the present homely themselves, through individual work on themselves and their collectivities, through reconfiguring themselves and their environment.

One of the programs organized by White Cane that aimed at cultivating liveliness among blind people was an extracurricular program for the students of the special boarding school for the blind and visually impaired. This program, called “Business City” [Delovoy Gorod], consisted of a series of workshops led by invited experts (blind and sighted) spread throughout the year and a final day when the students ran their mock companies the work of which they had been researching and organizing over the course of the preceding academic year. On the final day, all visitors and participants were given mock money bills and were encouraged to go around and explore the services offered by different student companies. In 2017, students ran a restaurant, woodwork classes, a travel agency, IT services, and a workshop for making photoframes. Additionally, students from a local medical college partook in this final game through offering their services as a massage-therapy company.

Although students are encouraged to actively participate in making decisions about their companies, over the years that this program has been around there have always been children who struggled with shaping their wishes according to the economic patterns familiar to contemporary capitalist urbanites. If some active students self-organized, others asked for help from their school paraeducators and supervisors.

It was not decided or set in stone what got to be recognized as a good idea for the company—through numerous and almost unavoidable negotiations between and among children, schoolteachers, and White Caners, I observed how different values and different life scenarios

325 were recognized as desirable for the children. Through these negotiations about what the children’s mock enterprises should offer as their services and how they should work, children and adults were in fact arguing about the distinctions between recognized forms of action and inaction for blind persons. These negotiations were often not only a collision of different preferences, it was also a collision of different generations, ages, classes, and genders.

White Caners would always have a meeting with students and their paraeducators to discuss the kinds of companies they were thinking of establishing. For White Caners, the priority was to promote those companies that they viewed as having good potential in the contemporary

Russian economy. The two most important features of the contemporary economy, as opposed to the USSR’s planned economy, were competition and deregulation by the state—which in practice meant that they were not entitled to a job just by virtue of having a disability status confirmed by the state. To children, these features were presented as social facts: “you have to compete with the sighted and to do it yourselves; nobody will do it for you just because you are blind [vam pridetsya sorevnovat’sya so zryachimi i delat’ eto samim; nikto za vas eto ne sdelaet tol’ko potomu chto vy nezryachie].” For the students sitting in the audience and listening to Volodya’s presentation of this year’s program, sometime in October, the collapsed system of state-supported industries run by VOS, employers’ ableism, and the poorly organized and extremely bureaucratized system of social support for people with disabilities materialized as a need to develop a good grasp of the range of activities into which they should invest their time, interest, and resources. I argue that this program introduced them to the existence of a series of distinctions and choices that would attribute worth to them based on what they do and how well they do it, not by who they are. Through making choices in the three layers of distinction which I discuss below, blind children were guided toward cultivating themselves as lively subjects. Although the program does not instruct them in how to change and challenge these distinctions, it teaches them how to navigate this system to

326 their benefit. Although I derived these three distinctions from the conversations and practices surrounding this particular program, I treat them as emblematic of a broader environment.

The first distinction or choice is of whether blind people wish to conspicuously display their participation in their communities—to be socially lively and animate others with their enthusiasm and drive. It separates those individuals who are willing to intentionally engage in activities that would be labeled “socially significant” and in general animate conversations and spaces from those individuals who are not willing to subscribe to such a metric of moral and social labeling. If the former would be those oriented toward acting on behalf of the blind community

(by virtue of which they would be in fact contributing to the creation of such community)—one acts in their capacity as a blind person which marks their action as public and themselves as a public blind figure—the latter would be those blind people who do not attribute value to their non/belonging to such a community. During the Business City program, this distinction was made in the form of a distinction between those children who volunteered to participate in the program and those who chose to remain disengaged from it. The lack of information about those students who chose not to engage and who, thus, were unaccounted for by the program often got translated into an assumption that these children had voluntarily withdrawn themselves from accessing a better future and working on themselves to become successful, that is, skilled in terms of the capitalist society they were growing up in.

The question here becomes: who can afford and who desires to stay private and who can afford and who desires to stay in public view—who sees and recognizes the connection between their individual liveliness and the liveliness of the community? As well as under what conditions this linking occurs for different subjects? Linking the individual and the collective has long roots in Russia—in subjectivation practices of Soviet individualization carried out as individual

327 confessions against the backdrop of a collective (Kharkhordin 1999). After the dissolution of the

USSR, the pressure and expectations of narrativizing and shaping oneself as a member of a collective and society was officially lifted; yet in the face of the economic crisis of the 1990s, the importance of one’s membership in informal communities and networks was emphasized anew

(Lindquist 2005; Oushakine 2009; Shevchenko 2009). The need to connect and be connected survived the political and economic crises Russia has been going through. It is in such a context that blind students graduate and take decisions on how to further proceed in an environment that does not expect or welcome blind employees.

The second distinction is that between different kinds of activities deemed socially significant and thus conferring the status of being lively. In the context of the program, the question of what exactly children were going to do served as a litmus test to their alleged future prospects and value. Before students make their choice of their company’s specialization, they attend a series of workshops organized by White Caners (the school administrators and paraeducators were also encouraged to hold workshops, but they almost never did, so White Caners occupied a monopolist position in promoting their views). At these workshops, children learned about different professions, economic sectors, and jobs held by and accessible to blind adults. In 2017, they had workshops with a blind guide at a sensory project, with a blind IT specialist, with a sighted communications coach, with two blind mobility tutors, and with a blind chef. Such activities would be those that are based on qualities and skills unique to blind individuals as service providers (see also Hammer 2017). Otherwise, it would be professions in which blind persons can perform well, better than or on par with their sighted colleagues. It would never be professions which rely heavily on one’s visual abilities—because that would from the beginning put blind persons at a significant disadvantage. Crucially, the metric of comparison with the sighted is always present—because this comparison takes place every day and in the majority of situations, White Caners urge children to

328 be prepared and familiar with it. One only passes through this second distinction if they have something to offer that sighted people do not.

It wasn’t set in stone which activities get to be labeled socially meaningful [sotsial’no znachimye] and which ones would be relegated to the status of a useless hobby or an idle pastime.

Such labeling occurs through the negotiations among multiple stakeholders and through the application of diverse assessment metrics (Vakhshtayn and Maiatsky 2019). Members of the school administration, schoolteachers, paraeducators, and blind White Caners all had different opinions, united sometimes only by their commitment to the student’s well-being and the improvement of the quality of their education. One of the school administrators, themselves a graduate of a special school for blind children, prioritized students’ access to practicing professionals—through such communication, they believed, children could develop an understanding of what interests and activities are currently in demand on the labor market for blind people. Paraeducators relied on quick and familiar solutions that have historically been done at school—they suggested to organize a photoframe and a bead-making workshop. Lena—one of the

White Caners—critiqued this idea for reiterating the faulty logic of teaching children a craft that is not in demand on the market and that is fundamentally visual. Paraeducators countered this critique with an argument that given that it would be them who would be helping the children in preparing and executing this game, they preferred to stick to the familiar routine—they had neither the time nor resources to come up with innovative solutions to the social inclusion of blind persons.

Against the backdrop of other responsibilities and jobs they had to do at school, they were not ready or willing to spend too much time on this. Misha—another White Caner—would criticize this initiative saying that aside from being visual, photo frames are obsolete and nobody needs them. Moreover, there is no point in a blind person competing with sighted people in producing photo frames that are valued because of their visual designs—the only way such photo frames can

329 be consumed would be if they capitalize on the feelings of pity and the charity imperative. Misha was of the strong conviction that pity and charity ought to be avoided at all cost. His argument was that if paraeducators encourage students to pursue visually demanding undertakings instead of exploring activities where they can use their unique skills as blind persons, it would only have negative consequences. In the best case scenario, they would be depressed and feeling unable to self-realize. In the worst case scenario, they would keep doing it badly and thus perpetuate the stereotype of the default low-quality work of blind people. And in any case, associating with an activity or a product that is socially devalued would automatically devalue the producer of this product.

This clash of opinions is anything but incidental. Instead, it demonstrated the profound contradictions produced by authoritarian neoliberal economies that channel funding into military ways to constitute sovereignty and defund public education and prioritize individual abilities of capitalization (Etkind 2018). For underpaid and short-staffed paraeducators, who worked with more than thirty children at once on the entire complex of school activities, taking time to explore new professions and economic solutions sustainable for their blind students in the future was a luxury they could not afford and did not deem valuable or feasible with the resources they had available. Two paraeducators I briefly chatted with expressed their disbelief at the efficacy of such programs and their ability to impact children in ways other than temporary distraction from boredom. For Oleg, Lena, Misha, and Volodya, fully employed blind professionals who juggled multiple projects and occupations and who had first-hand experience of hard-won access to jobs and communities, guiding young students in their exploration of the economic domain was of primary importance—it is that moment when a blind child may realize that they have a choice (of the kinds of things they want to do and, by extension, the kinds of persons they may become) they deemed most impactful. In that moment of self-recognition of being a subject—a subject of

330 economic relations, a subject of a community—they located the seeds of the very possibility of social change.

White Caners, and Volodya in particular, were proposing a complex approach to preparing children for the program’s finale, and, by extension, to the future demands of the market. Volodya used an assessment scheme that heavily prioritized socially oriented and potentially economically sustainable undertakings—blindfolded excursions, restaurants in the dark, IT services, and social media assistance for blind users, among others. Volodya argued that they should develop a travel agency—as an example he referred to a student who has graduated from their school and who has over the years become a well-known figure among the blind community in Russia thanks to his hitch-hiking long-distance traveling. Volodya also emphasized that the service of a guided tour with a blind guide is in high demand—because it is considered “exciting” among sighted clients— and that children should seriously consider having a company that would offer guided tours for sighted visitors around the school. Volodya was deeply respected at this school for his regular and successful domestic and international inclusion work. His authority came from having a wide range of friends and colleagues around the world and a solid base of knowledge about different practices of including people with disabilities. The mission of his NGO—and his life, as he would often say—was to cultivate a culture of inclusivity and cultivate self-respect and self-appreciation among blind people that would enable them to appreciate their blind bodies and contribute to social life as respectful blind participants. At a particularly heated moment of conversation between the administration representative and Volodya, the former asked Volodya: “But why do sighted people need [the inclusion of blind people]? Why would they care? Do we really need to do all this? Will it help?” Volodya, shocked, responded: “Nina Petrovna, well sure, let’s just all do nothing and sit and drink beer. Where will we arrive then at this pace?” For Volodya, social change was achieved not through a systemic reform or a legal change, but through incremental behavioral changes.

331 Through these individual actions he hoped to change the ways in which others thought of blindness and disability in general. Through cultivating the habit of liveliness in individuals—materialized as their desire and ability to organize and implement social programs, projects, or services—

Volodya hoped to spread liveliness around. It was supposed to be contagious.

In the end, children themselves decided what companies they wanted to establish. Although different stakeholders had different tactics and means of influencing these decisions, the children’s decisions were respected.

The third distinction on the way toward the making of a lively blind subject was between various aesthetic choices of appearance and self-presentation that a person made (for an account on the politics of appearance of people with learning disabilities in Uganda see Zoanni 2019).

Through workshops, students received training on how liveliness could materialize in their own body and personality. Cultivating individual liveliness required working on the self, making oneself match their experienced and expressed liveliness as well as the liveliness perceived and caught up socially. In a way, analogous to Eric Plemons’s (2017) argument where he connected prevalent types of surgical interventions with socioculturally specific ideas of sex, it mattered what fragments of one’s appearance were taken to be signs of disability. Here again the spectrum of opinions was wide, from a focus on appearance and corporeal habits (one example of which would be the correction of “blindisms”55) to the more systemic and systematic work of cultivating one’s emotional intelligence and self-awareness (compare it with the Brazilian beauty industry in

Edmonds 2010). Part of the broader phenomenon of focusing on cultivating emotional awareness

55 In both Russian [slepizmy] and English [blindisms], blindisms are those particularities of the patterns of comportment and judgment that sighted people attribute to blind individuals (especially congenitally blind persons) as unique markers of blindness. These features stand out to the sighted onlookers for their noncomforming nature to the ocularcentric norms of comportment: such as rocking one’s head, moving around while talking, not facing their interlocutors in a conversation, among others. Among the blind community I have worked with, in general, the tendency is to correct such corporeal patterns in blind people because they are seen to be a source of discomfort for the sighted and the subsequent exclusion of the blind by the sighted. Forms of blindisms vary by gender, age, and class.

332 as part of the elite production project (Matza 2018), the urge to pay attention to the emotional skillset of blind students signaled the intention of offering them tools to learn the habitus of the privileged.

Although intentional work on the self—corporeally and psychologically—can be interpreted as part of the modern tendency to normalize disability (L. Davis 1995; Michalko

1998b), I want to push back against using this framework for its little explanatory capacity for the context I am looking at in this chapter. In the context I am engaging with, it is not enough to be just like the majority (the sighted)—sometimes the point is to be exactly unlike the majority. For blind people who seek to carve their way through ocurlarcentric and ableist social environments in postsocialist Russia, this becomes normalization with a twist. The conceptual framework of work on the self is of more analytical power here for it allows to capture the complex processes of subject formation that unfold as the blind students engage and respond to the imperatives of social liveliness and good work.

More broadly, work on the self has become a common Russian strategy of addressing challenging life circumstances—in healthcare (Rivkin-Fish 2005) or in mental well-being (Matza

2018) or in addiction fighting initiatives (Raikhel 2016; Zigon 2010). They link this ethical practice as deriving from and being deployed in a particular political and economic system—the one of post-Soviet Russia. In privatizing their efforts, people worked on producing a person or a generation that would be different and disconnected from the experiences of the past. “For them, self-work was a response to social problems with historical roots in the Soviet period, whose contemporary manifestation lay in the callous attitudes and lack of social concern among the elite”

(Matza 2012, 808). The new people—in my context, the new blind people—must be different.

In ways similar to the ones described by Julie Hemment (2015) in her work on members of Russian progovernmental youth movements, my blind interlocutors and their audiences do not

333 just reject the memories of the past. Instead, they selectively reimagine the past, rendering some practices heroic and venerable, such as the collective participation of blind workers in city development, and other features shameful, such as the imagined lack of individual agency and individual responsibility. The carefully curated memories and fantasies about Russia’s past and the past of the blind community in Russia are mobilized today to design strategies for future development.

At school, one of the administrators who themselves is visually impaired, told us that it is so important to cultivate the need for the outside world and other people in blind children. Their experience of working at the special school inspired their idea that blindness is a profoundly isolating disability, a disability that affects one’s ability and desire to connect with others and seek new environments and communities. This essentializing idea about blindness as causing one’s preference for solitary pastimes and, by a leap of reasoning, egoism, served as a justification for this person’s conviction that the main goal of this program was to cultivate interest in others and interest in reaching others. Through this cultivated orientation from themselves (and idle pastimes) toward others (socially meaningful activities), children were invited to transcend the “natural” inclinations that blindness inspired in people.

Shaping oneself into a lively subject is adjacent (but not identical) to the idea of being socially valued for being productive. If both the socialist and capitalist worlds developed their own different regimes of productivity that both nevertheless naturalized the idea that individuals must be productive to be appreciated (Hartblay 2014; see also Ferguson 2015), blind people in Russia historically found themselves set up against a contradictory challenge—having to prove the positive value of their presence. If the majority of pensioners can and do mobilize the rhetoric of

“earning” their right to receive state funding (Caldwell 2004) and thus having already proved their worth, people with disabilities often cannot use this argument for a lack of employment experience.

334 And yet, social liveliness differs from productivity because it offers other—seemingly noneconomic—ways of achieving social valuation: having a relatable personality open to the circulation of positive affect, an ability to act as a spokesperson and disability expert (see also

Friedner and Osborne 2013) upon request, and soothe public anxiety around the exclusion of people with disabilities and lift the burden of responsibility from the nondisabled, to give just a few examples. Instead of occupying the position of “a social case” (Friedman 2009) or a critic of the nondisabled, lively blind people as a social project of my blind interlocutors act as neoliberally- minded but socially-oriented entrepreneurs who view others as potential partners and sources of capital increment and circulation. On the one hand, this is a way to valorize the multiple modes of work that have historically been devalued among disabled people (S. Taylor 2004). On the other hand, it is also open to exploitation (Friedner 2015).

Finally, the corporeal and social orientations and skills of lively subjects are profoundly classed and gendered; they are predicated on one’s ability to follow conventional codes and break them in a conventional fashion (Bourdieu 1986). Because of the prevalent exclusion of blind people from mainstream educational and employment circles (unless they were born into it or developed blindness later in life), they rarely develop sufficient expertise in what it means to do business, how to navigate the economy of favors and professional networks (crucial for capital accumulation in today’s economic system), and how to effectively switch codes depending on the interlocutor. To address this mismatch in bodily techniques and patterns of communication, blind students are pushed to work toward embodying the habits of middle- and upper-class elites.

Through these controlled and yet ludic experiments, my blind interlocutors attempt to cultivate a new elite among the blind community.

To sum up, the Business City program I zoomed into in this section worked as a platform for my interlocutors’ project to create a new kind of blind subjects in Russia—the lively blind

335 subjects who are public and publicizing, engaged in publicly recognized meaningful and valued activities, and outward oriented.

My blind interlocutors operate with the concept of extrabilities (ekstrabiliti, they use the

English word) developed by Oleg, who is currently working on a manuscript developing this concept, and Mikhail Pleshakov. Extrabilities stand for additional abilities that people develop as a result of coping with challenging experiences. Thus, people with disabilities often develop extrabilities as they develop unique coping techniques of living in a world that has not been designed for them. Semantically, they are closer to disability skills than to abilities, given that they embrace all sorts of practicoperceptual engagements, not only those that would be helpful in securing a livelihood. Unlike crip skills, extrabilities do not center on disability and the difference disability makes in the world. The ideology of extrability does not propose a new theory of justice or the redistribution of resources. It does not offer a critique to capitalism but instead views its postsocialist Russian iteration as a natural home that could be improved with the help of such extrabilities. What is important about extrabilities is the imperative to practice them and recognize oneself as a subject with them, as a subject who develops socially valuable niche skills.

Extrabilities become a proxy for the imperative to act on the environment and build your own world.

I use the Ingoldian interpretation of skills as a practicoperceptual engagements with one’s environment. Unlike abilities, skills do not have a semantic connection to the reference to the loaded dichotomy able-unable; instead, skill connotes an acquired embodied form of engagement that does not necessarily smuggle an assessment of the person’s individual and social worth. In this conceptualization, the practicoperceptual engagements that have been harnessed by capitalist ableist systems of production would only constitute a subset. Those practicoperceptual

336 engagements that have not been exploited by the system of capitalist production are resonant with the concept of crip skills, introduced and explored by activist Leah Lakshmi Piepzna-Samarasinha

(2018). By crip skills, Piepzna-Samarasinha understands the unique skills that people with disabilities develop as a result of living in an ableist, capitalist society. Crip skills are par excellence those that emerge in regard to and as a result of disability’s centrality. She gives examples of twenty-two crip skills, the highlights of which are empathy, clear communication, recognition of disability experiences, and support, among others.

Crip skills belong to an ontological universe different from the hegemonic discourse of rehabilitation and compulsory able-bodiedness. If rehabilitation promises a return (McRuer 2006,

103)—from the devalued condition of a disabled life (conceptualized as incapacitated) to the undisturbed condition of able-bodiedness and lifestyles associated with it—the concept of crip skills operates under the assumption that past and present experiences open up opportunities in the future through expanding the body and mind’s repertoire of engagements with the world. Thus, the focus on crip skills offers a reconfiguration of disability temporality (a new configuration of the past, present, and future) as well as the desirability of disability existence and flourishing.

Anthropological scholarship has engaged with the analytics of abilities as well as specific skills that people with disabilities have. Tyler Zoanni (2018b) looked at the productivity of the cultural genre of failure to meet the cultural expectations of personhood. In Uganda, the national context with which his scholarship engages, people with intellectual disabilities occupy a subject position of a failed person—as a result of chronically failing the expectation to get better, to follow the conventional milestones of childhood, adolescence, and adulthood, and to use language. And yet, Zoanni’s research showed, those same people provided care to other members of the communities in which they lived, although these acts of help often passed unrecognized as such.

337 Molly Bloom (2019) used an adjacent concept—that of competences—to capture her interlocutors’ conceptualization of their capability. For Bloom, it is important to emphasize that her interlocutors’ analytics and narratives did not use able-bodiedness as a desired reference.

Bloom writes: “tropes of competence allow storytellers to weave experiences with disability into narratives that demonstrate their meaningful life trajectories” (2019, 122). Her interlocutors’ narratives were not the narratives of passing (as able-bodied) or of overcoming disability. Instead, they constructed their position as nonliminal, as non-trapped. Theirs was the position of wheelchair basketball players, adept in their athletic endeavors and members of a community of practice.

Herbert Muyinda (2019) examines skilling as a translation process. Muyinda engages with the post-war Ugandan context characterized by dramatically increased numbers of people with disabilities and substantial shifts in sociality. Muyinda argues that

skill is linked to people’s lives not only through bodily (dys)-functions alone but also through social connectivity and interaction, making skill a function of sociality. With both deliberate and unintended sociotechnical (dis)connections that emerge during the process of acquiring them, skills can be looked at as every PWD’s necessity-in-the-making that has to keep developing, and in the process, it reshapes sociality and the disability worlds of the PWDs. (2019, n.d.)

In other words, skilling changes individual bodies, the sociality within which these bodies partake, and the world they inhabit. Providing skill education to people with disabilities is located in between the global and the local, the formal and the informal, the individual and the social. Global standards and protocols often influence local agendas in prioritizing enskillment as a way toward the integration of people with disabilities. As a result, “[these globalized guidelines] tend to create new sociotechnical (dis)connections between the body (disability), skill, and the social relations involved, sometimes to the extent that whatever does not satisfy their set parameters may not be considered as skill” (Muyinda 2019, n.d.).

The importance of disability intervention and mattering in the world has been approached in the recent edited volume The Matter of Disability (D. T. Mitchell, Antebi, and Snyder 2019). A

338 collection of literary analyses, this volume proposes a posthumanist disability theory that foregrounds matter’s agentive qualities and destabilizes the artificial distinction between the social and the material. They take “as a starting point the fact that disability is already a part of the process of materiality’s active, unfolding participation in the world” (D. T. Mitchell, Antebi, and Snyder

2019, 3). The misfit becomes conceptualized as a productive excess within matter itself. The editors’ resolution is to approach disability without reducing it to a pathologized condition. Instead, they direct their attention to the ways in which disability moves and is materially moved, initiating changes, being part of the ongoing formation of the world. Posthumanist disability theory is based on Karen Barad’s theory of intra-activity and agential realism based on the principle of fundamental interdependence between humans and the world (Barad 2007).

For my interlocutors, it is important to highlight that people with disabilities participate in the making of the world in which they live in ways beyond exposing the oppressive effects of ableism (see also D. T. Mitchell, Antebi, and Snyder 2019, 9). Instead, they focus on constructive and new changes that participants with and without disabilities make and the processes they launch. They cocreate their communities, make their parks cleaner, perform music in city festivals, offer care. They care for their world and intervene into it with responsibility.

In 1993, Joan Tronto remarked that “care implies a reaching out to something other than the self: it is neither self-referring nor self-absorbing” and that “care implicitly suggests that it will lead to some type of action” (Tronto 1993, 102). She then provided a definition of care, co- authored with Berenice Fisher:

On the most general level, we suggest that caring be viewed as a species activity that includes everything that we do to maintain, continue, and repair our 'world' so that we can live in it as well as possible. That world includes our bodies, our selves, and our environment, all of which we seek to interweave in a complex, life-sustaining web (Tronto 1993, 103).

339 From Tronto, we learn that a practice and a disposition, care is intentional and other-oriented, it is ongoing and multifaceted. Care is universal—“a species activity”—yet it takes multiple forms depending on the cultural, socioeconomic, and political contexts within which it unfolds. Care is fundamentally mending, repairing, world-oriented, and concerned with the world’s resilience. For

Tronto, in both her earlier (1993) and later work (2013), foregrounding care (through a just system of distribution of caring responsibilities) as the center of political life is crucial for the survival of democratic societies in the age of late capitalism.

Maria Puíg de la Bellacasa (2017) continues Tronto’s political and ontological project of reframing care, enhancing the ecological grounding of care as a practice and disposition of tending to the world. From Puig de la Bellacasa’s analysis I take the conceptualization of matters of care.

Activist Leah Lakshmi Piepzna-Samarasinha (2018) explores the movement from the system of state-provided disability care fraught with:

Sometimes we call them care webs or collectives, sometimes we call them “my friend that helps me out sometimes,” sometimes we don’t call them anything at all—care webs are just life, just what you do. The care webs I write about here break from the model of paid attendant care as the only way to access disability support. Resisting the model of charity and gratitude, they are controlled by the needs and desires of the disabled people running them. Some of them rely on a mix of abled and disabled people to help; some of them are experiments in “crip-made access”— access made by and for disabled people only, turning on its head the model that disabled people can only passively receive care, not give it or determine what kind of care we want. Whether they are disabled only or involve disabled and non-disabled folks, they still work from a model of solidarity not charity—of showing up for each other in mutual aid and respect.” (Piepzna- Samarasinha 2018, 41)

Piepzna-Samarasinha talks about cross-disability solidarity. She counterposes this form of webs to emergency-response care webs for temporarily disabled able-bodied people: “These models have a lot to learn from disability justice models of centering sustainability, slowness, and building for the long haul. They tend to come from people who don’t know, well, that disabled people or community or activism, um, exists. Since they don’t know (or have been firmly ignoring) that we

340 exist, they often reinvent the wheel(chair)” (2018, 53). These webs wither as they discover ableism.

Salih Can Açiksöz (2019) writes about the gendered ways in which injured veterans

“remake a world unmade by war through intersubjective forms of care, fleshly intimacy, and activism. This newly assembled world is populated by supernatural beings, the ghosts of dead friends, shadowy political figures, and ‘terrorists,’ all affectively charged by the sense of crisis, betrayal, conspiracy, emergency, and agency” (2019, 3).

In his 2019 paper, Patrick McKearney joins other anthropologists in critiquing the use of the model of the autonomous rational subject as a reference point to determine the worth of other people, including people with intellectual disabilities (Biehl 2012; McKearney 2019; J. S. Taylor

2008). Instead, he offers to approach ability not as something individually possessed but a dynamic relationship full of reversal and reflexivity; his is the call to pay attention to the ways abilities get to be ascribed, the authority of those who anchor the label of able or unable, and the changes that occur within these authoritative subjects during the process of ability determination (McKearney

2019). McKearney provides a brilliant account of the dramatic unfolding of his own experience and struggle with understanding if his interlocutors with intellectual disabilities are able or not.

This unfolding is a process and a power game—the able-minded narrator and the protagonist with intellectual disabilities engage in the play of control over who has the authority to evaluate the ability of the other. In the process, importantly, the able-minded narrator changes, as a result of their initial disbelief in the ability of their interlocutor and their interlocutor’s subsequent revelation of their ability. This process is emotionally and intellectually moving, personally moving even, as it calls into question the assumptions about personhood and authority.

“I do not know who is disabled of the three of us. With Vladimir and Oleg, I totally felt like I was the disabled one. With everything they have done, you know, I am asking myself—what

341 have I done?” my mother told me over dinner. Vladimir is a blind punk rock band leader who lives in Krasnoyarsk, a city where my mother and I were having dinner after a busy day of events. Oleg is a person already familiar to the reader—an ideological and an organizational leader of White

Cane, blind. Before that trip to Krasnoyarsk in November 2017, my mother had not met my interlocutors in person. In Krasnoyask, a city 2400 km to the east of Yekaterinburg, where she came to catch me on our journey across the Trans-Siberian Railway and to visit her relatives, she spent two days with us. During that dinner, I asked her what made her feel that way. I wanted to understand what it was from that day that encouraged her identification with being disabled, what her understanding of disability was, and what underlay her questioning.

That day, she had hung out with us as Oleg and Vladimir led a special workshop on inclusion and extrability at the regional library for the blind. She sat in the audience, full of other blind and partially sighted people, as well as library and social workers, throughout the entire workshop, participated in group exercises, listened to other people’s life stories and anecdotes, and shared her own story. She had a moment when she had to introduce herself to a group of blind people; her turn was coming after people with spectacular stories, those of community leaders, artists, activists—“people with stories,” as she called them. She told me she felt awkward that her introduction was not as interesting, it was not a story even. She said this interrogation of her identity and subjectivity was new to her—all her life she just “worked to bring up her children.”

She accompanied us to the city festival, went on a tour guided by an app on Vladimir’s phone and prompted by Oleg’s knowledge of the highlights of Krasnoyarsk, although this was his first visit to the city. She shared uber rides with us and heard Oleg engage the drivers in vibrant conversations about the area. She witnessed their phone calls to arrange their work-related affairs. She walked blindfolded with Oleg, in a completely unfamiliar area. She talked with Vladimir about community activities they organized in local schools. And she felt something close to what Patrick McKearney

342 (2019) describes—a reversal of the positionality of who gets to prove their abilities to whom. She felt that it wasn’t all that clear now who was disabled and what disability actually was. What am I doing with my life? matters as a way of posing a question to oneself, challenging and tasking oneself with figuring out an answer to it. My mother’s posing this question to herself was not exceptional or unique. In the field, many nondisabled people who came across White Caners followed a similar trajectory. On the one hand, it is easy to characterize this trajectory as being affected by “inspiration porn” (Young 2002). According to this analytic, first, nondisabled people configure people with disabilities as exceptional subjects living under exceptional circumstances; then, this exceptionality gets to be projected onto ordinary lives of people with disabilities and, from this tension between exceptionality and ordinariness, a moving affect emerges. Nondisabled people get moved and inspired by anything that a person with disabilities does—be that an everyday activity or an exceptional achievement.

On the other hand, I am interested in the effects that such narratives and experiences produce. There is no doubt that inspiration porn narratives circulate in Russian media and public spaces. They are produced and presented by various groups and inclusion practitioners. Yet the affective impact of inspiration porn onto the nondisabled is frequently ephemeral. With White

Cane, I saw that this impact materialized as increased participation in community engagement and the intentional cultivation of relationships with White Caners beyond the frameworks of charity.

My mother, Alina, Olga, and other nondisabled acquaintances keep coming back. I argue that it happened because the focus of directed effort was on dwelling and building a shared world, as opposed to framing the inclusion discourse in terms of rights and political justice.

Contagious liveliness

In 2017, city festivals, workshops, and volunteering work organized by White Cane began to attract a range of nondisabled individuals whose presence I did not entirely comprehend at the

343 beginning. Without any clear connection to disability, these nondisabled professionals would come to participate in White Cane activities in the dark, psychological training sessions, seminars, presentations, environmental actions, city clean-ups, city festivals, and activities in elementary and middle schools. Yoga teachers, commercial photographers, entrepreneurs, high-rank managers of large companies, waiters at a local restaurant, journalists, life coaches, policy makers, post-rehab ex-drug-users would come to White Cane’s events to participate and be present in these spaces.

For the disability scene in Russia, this was and still is exceptional. Other initiatives would usually attract nondisabled participants if they were family members or caregivers, or else those nondisabled individuals who would consider their participation an act of charity. Such acts of participation would most often be done in the form of donation or otherwise as a one-time visit to a hospital (yet this is a rare occasion). Given that White Cane’s events are mostly free and solicit no donations, this was an exception that attracted my attention.

I then started to notice that some of the nondisabled guests and participants would meet with White Cane’s members during their free time; they would form friendships and return to join activities of White Cane time and again. A high-rank employee of a large corporation camped with us during a clean-up operation of the city lake. They worked with us to pick up garbage, set up garbage bins, tidy up the area, and set up benches. And this was without publicity, without their company’s or their remuneration in terms of any form of capital or value return. A professional photographer took unpaid leave from their job to join White Cane members on their tour to organize city festivals and inclusion seminars in various Russian cities and smaller towns. A range of middle-rank employees from a different large federal company joined the inclusion strategic- planning session aimed to design a plan for the further development of inclusion, given that this person had no prior connection to disability. The instances of participation of nondisabled

344 individuals in White Cane’s inclusive events and projects were many and they generated substantial benefits for the network, although they were often unsolicited.

I initially thought that the nondisabled individuals who attended events and then proceeded to form long-term friendships and professional relationships with different blind members of the network were outliers and exceptions with little significance for my research. When I realized that almost every town and city where the members of the network lived had these nondisabled allies,

I started to pay more attention to it and ask them what brings them to inclusion and why they care, given how detached from inclusion- and disability-related matters many of them were. Some told me that the network’s inclusive events gave them access to a community of people who do something tangible and affect the world they live in, and they wanted to be a part of such a force, as opposed to sitting and waiting for change to come. Others said that they were fascinated by the ways in which the persons with disabilities they had met in the network lived an engaged life and how they motivated my interviewees to get of their comfort zone and try something new. By finding a community to belong to, these nondisabled allies engaged in the project of inclusion dissemination that called for cross-ability collaborations and mutual indebtedness.

One such chat took place during a week-long camping project where a group made up of the network members, persons from a local drug-rehabilitation center, and nondisabled allies were cleaning an area on the shore of the city lake. I saw Olga painting over an abandoned and broken pylon and walked toward her. It was unusual for me to see her in a track suit with a trash bag tucked into her pocket, standing against a pile of the trash bags that we had filled up with garbage on previous days and stockpiled for pickup. I caught myself thinking about how strange this now very normalized presence was. The previous night, Olga, two blind women, four men from a local rehabilitation clinic, and I were sitting around our evening bonfire after a day of cleaning. It was that moment of the day after dinner when we were drinking tea, talking, and decompressing from

345 the day, before going to our tents to sleep. Guys were watching three rats fight in the grass a few feet away from us. I was trying to distract myself from the rats and the utter bodily discomfort that

I felt there. A blind friend started playing the guitar, Olga sang along. Among my fellow circle participants, Olga was the odd one. She was simultaneously a figure whose presence was desired by all funding agencies that finance inclusive activities—a nondisabled person who participates in an inclusive activity just because they consider it an option was perceived to be a sign of inclusion’s sustainability and value for broader population—and a figure whose presence is hardly ever secured in practice. I was perplexed and could not understand why this nondisabled woman, who overtly says that she does not care about disability or inclusion per se, would come here, to voluntarily camp at this dump, to pick up all this broken glass, used condoms, blood-stained tampons, to dig up syringes, to empty bottles of liquor and ketchup and oily cans of sardines that are now full of maggots and worms, and to carry heavy stones and tiles around. All this without any plumbing—no showers, no toilets on site. Why would anyone who is not forced to be here, be here? The next day, when I saw Olga painting over a pylon, I asked her how she was holding up and what makes her stay. She told me that she had passed by this place a thousand times in her life. On their way to a restaurant a bit further down this road, she and her friends would always drive by this place, sometimes blaming the city authorities for neglecting the lake and leaving it in a shamefully undignified and dirty condition. Not even once had she or any of her companions thought of doing anything about it themselves. It just never even occurred to Olga and her friends that there were ways to address the situation that had been bringing her frustration. She never even thought of herself as a subject who would directly address this issue. She says that when she learned about this project on the network’s social media, the idea of it struck her in multiple ways.

Because these people who have way fewer resources than her, who experience more resistance and barriers in their lives than she does, they are just doing and solving the issue that is of relevance

346 to others. They take an active part in developing their environment—social and material—to make it an enjoyable place to dwell in. She told me that she had great skills as a person who thinks about how to emigrate and fantasize about how great it is elsewhere, how the grass is greener in Europe, but she realized that she had very few skills as a dweller, a person who resides in a place and makes a home. This activity of cleaning up this shore became her introduction to homemaking, a formative activity that had a profound formational effect on her. Before leaving, I asked her about her painting, what was she trying to do with this pylon. She moved her arm so that I could see the scripture she’d written: “Stroim Svoi Rodnoi Mir,” which translates as “Building your Home

World,” one of White Cane’s mantras. She added that she hoped that someone could see it and maybe be moved too.

What moved Olga is the ways in which my blind interlocutors positioned themselves in relation to the place and community they lived in, which was captured in this motto “Building your

Home World.” Coming from persons conventionally labeled as incapable and dis-abled, projects and activities that had tangible effects—cleaner parks, more accessible and convenient public areas, new ideas and skills, opportunities to access sailing for free and try freediving, city festivals, creativity workshops, team-building and brainstorming sessions—with little demands placed on the able-bodied population, had an intensified effect on able-bodied participants. In the atmosphere of collective debilitation and failed expectations for the state to organize the world for its citizens, my blind interlocutors created precedents of self-organization and tangible social change, albeit on a smaller scale. Such forms of participation drew a wide range of able-bodied individuals to come in and join the events. Although I did not myself observe the tangible changes in the lives of able-bodied participants, colleagues, and acquaintances, many of them commented that meeting my interlocutors was a life changing event—for they felt they learned something about their abilities and capacity through such interactions. By observing and recognizing my interlocutors as

347 subjects capable of intervening into and caring for the world they inhabit, some of the nondisabled allies were challenged to renegotiate their own positionality and subjectivity. Months later I would hear stories about decisions they took while under the influence of these encounters—people changed jobs, addressed some pressing problems, made radical changes in their relationships.

One of the common problems with conceptualizations of inclusion is insufficient attention to how environments and subjects come to matter together. In other words, an acknowledgement that they are tightly implicated in each other’s formation. My interlocutors critique those inclusion schemes that neglect to take into account how people with and without disabilities produce a world and their subjectivities performatively and through active implicatedness with their environments.

In this regard, my interlocutors’ work, phrased as projects carried out not for people with disabilities, but with the participation of persons with disabilities, contributes an account about a new configuration of inclusion, which is based on the cultivated collective liveliness of communities and the world they inhabit and dwell in.

Fig. 23 Vmesto Vmeste s invalidom (Instead of Together with a person with disabilities). One of the visuals created by White Cane and used as their promotion and ad materials.

348 I argue that through cultivating individually lively and caring subjects (symbolically and materially) who dwell in their environments and community, White Caners experiment with the contagiousness of care and intentionality of intervention at the broader level. Through cultivating lively subjects interested in inclusion, they cultivate lively communities that host residents that desire and find opportunities to care for their surrounding human and nonhuman environment.

Liveliness through dwelling

“Building Your Home World” intricately connects the ideas of home, as in dwelling, and the world, as in the environment, rendering the world an arena of care and intervention—it is this sense of possibility and the opportunity to participate in the world-making that attracted nondisabled participants, I argue, and that appealed to different social groups who on the broader level experienced political debilitation and increased policing of civic initiatives in the mid-2010s.

With caution,56 I turn to Heidegger’s (2001) ideas on dwelling expressed in his essay

Building Dwelling Thinking, to theorize dwelling and its opposite—homelessness. Writing in the conditions of the housing shortage after World War II, Heidegger wrote:

the real plight of dwelling is indeed older than the world wars with their destruction, older also than the increase of the earth's population and the condition of the industrial workers. The real dwelling plight lies in this, that mortals ever search anew for the nature of dwelling, that they must ever learn to dwell. What if man's homelessness consisted in this, that man still does not even think of the real plight of dwelling as the plight? Yet as soon as man [sic] gives thought to his [sic] homelessness, it is a misery no longer. Rightly considered and kept well in mind, it is the sole summons that calls mortals into their dwelling. (2001, 159)

Heidegger theorized homelessness to be the real plight of humans. In his understanding, homelessness is not predicated on a lack of housing or overpopulation or insufficient opportunities

56 I say with caution, for several reasons. First, because he derives universalizing claims from his analysis of etymology. I find such an analysis highly selective and reductionist. Second, because he exercises no reflection over the bias embedded in his work. I use his essay without fully committing, but selectively borrowing ideas.

349 to access buildings and housing. Rather, in his conceptualization, homelessness manifests itself as one’s inability to dwell. To dwell is not merely to inhabit a building or to use a space. It is not simply to have a shelter to return to after work. It is not having a feeling of being at home. Instead, dwelling is a fundamental manner of existence, it is a human being’s life on the earth as a mortal realized to its full potential. As dwellers, humans build and cultivate, they make things and participate in the world. As dwellers, human beings belong—they belong to this and the other world, the domain of the divinities and the domain of the mortals.

Dwelling is intentional, it is a conscious staying with things, caring for them, saving them, letting them be “in their presencing” (2001, 149), nurturing them. “Dwelling itself is always staying with things” (2001, 149), Heidegger wrote. Humans make things through gathering “the fourfold” —such aspects as the earth (the aspect of materiality), the sky (the aspect of spirituality related to eternity), divinities (the aspect of divinity), and mortals (the aspect of humanity defined by their mortality and finitude). By making things—through intentional cultivation and building— humans participate in the world, they tend to it, make it a home for themselves.

Building Your Own Home resonated with this fundamental implicatedness of humans in the world, with the idealized and romanticized idea of recognizing oneself as a participant of the world, a builder, a dweller.

In anthropology, Tim Ingold (2000) and Jarett Zigon (2014b) continued a Heideggerian line of thinking, theorizing the deep immersion of humans in the world. Although they theorize distinct regions of human life, both Ingold and Zigon offer conceptual tools to capture the longing for recognizing oneself as a participant.

On the basis of his conceptualization of the deep connectedness and co-constitution of humans and their environments, Ingold conceptualizes the dwelling perspective as “a perspective which situates the practitioner, right from the start, in the context of an active engagement with the

350 constituents of his or her surroundings” (Ingold 2000, 5). The Ingoldian dweller is the subject who is engaged in the holistic practicoperceptual project of unfolding and collective becoming-with- the-world. To go even further, Ingold explained cultural variation as a variation of skills, defined as “the capabilities of action and perception of the whole organic being (indissolubly mind and body) situated in a richly structured environment” (Ingold 2000, 5). Cultural and biological, skills are embodied interactions between the individual and their environment. In a concise form,

Ingold’s theoretical construction can be articulated as follows:

Humans, I argue, are brought into existence as organism-persons within a world that is inhabited by beings of manifold kinds, both human and non-human. Therefore relations among humans, which we are accustomed to calling ‘social’, are but a sub-set of ecological relations. (Ingold 2000, 5)

Ingold does not discuss disability or the profoundly politicized distribution of skills and abilities to exercise those skills. Neither does he acknowledge the centrality of the analytics of ability to the definition of human worth. Yet in his conceptualization of skills, I recognize a helpful tool to think about the centrality of ability foregoing its profound connectedness to the tropes of productivity and labor extraction—the ability to intervene in one’s environment and life and thus recognize (and recruit) themselves as an ethical subject of such an intervention.

Jarett Zigon (2014b) adds an analysis that linked the postulated metaphysical longing and its ethical materialization with the political. His protagonists are not “natural human beings” with unidentifiable backgrounds and life conditions. He writes about people with drug addiction who have been systematically abused and targeted by classist and racist systems of policing. In order to be able to dwell in this world, they (as all of us) need more than just a volition or an intentional practical effort. For them, being-at-home in the world necessitates access to networks of support and opportunities specifically offered to them to create chances for a dignified life. Zigon makes an important point—moral tools and ethical moments are not universal, totalized, or obvious—

351 individual subjects make their dwelling, configure their thinking and positioning in the world in unique ways, in close connection to the social position they have access to. He defines dwelling as the following:

To dwell is to be-in-the-world such that one’s being is not reduced to such a degree that being-in- the-world becomes something like being trapped in a world. (Zigon 2014b, 757)

He counterposes dwelling to being trapped in a world, immobilized by it, suspended in one’s ability to move with the world, move it, and be moved by it. As he comments about Ingold’s intervention on dwelling, dwelling is about the possibility to changing and becoming otherwise:

Becoming otherwise, then, is a process of poetic dwelling, of building and maintaining a world in which such dwelling always remains possible (cf. Heidegger1975a:161; Povinelli 2011). This is an ethic of dwelling as a politics of world-building. (Zigon 2014a, 757)

An ethic of dwelling becomes an ongoing concerted effort to make the world into such a form where being otherwise is possible. It is about creating appropriate conditions of possibility. For

Zigon, dwelling is an ethical imperative: to be human is to be concernedly connected to the world in which this human find themselves with others. The effects, parameters, and shapes of the practice of dwelling cannot be defined a priori—instead, one’s unique positionality and actions materialize themselves and their world in unique ways.

Anthropologists have demonstrated the ability to partake in building one’s world is unequally distributed. Elizabeth Povinelli’s (2011) research on the politics of abandonment and the poiesis of corporeality shows how zones of precarity and potentiality in late liberalism map onto zones of abandonment. She writes about a way of killing that materializes as the exhaustion of subjects unsupported and suffocated by the state and other institutions. She writes about the violence of enervation performed through quasi-events, unregistered by the radar of late liberalism.

The question is: Will anybody notice that decomposition is occurring? Does anybody know that someone’s capability of dwelling has been exhausted? This is a new necropolitical technology of late liberalism that suffocates and starves its unappreciated subjects.

352 A fundamental concept here is precarity (Han 2018), which is connected to globally distributed poor access to employment and means of sustenance under late capitalism. Precarity is distinct from precariousness, which connotes “a general, pervasive ontological condition of vulnerability, displacement, and insecurity, not explicitly tied to the contemporary form of neoliberal capitalism or class relations, but instead characteristic of transhistorical and existential forces” (Kasmir 2018).

Judith Butler conceptualizes the distinction between precarity and precariousness differently (2004; 2010). For her, whereas precariousness connotes a universal human condition of vulnerability and incompleteness, rooted in human profound interdependence, precarity captures the unequal distribution of pressures and threats. The complex social system of social de/valuation selectively protects some bodies and exposes others, to the pressures of targeted violence and the effects of global and mass threats.

In anthropology, Anne Allison (2013) discusses the nuances of living with precarity and precariousness. In looking at the crisis of social withdrawal, or homelessness at home, in postindustrial Japan, she examines the ways in which one recognizes one’s own precarity and the precarity of the other. Facing precarity in Japan, she writes, amounts to “having a life that no one grieves upon death and living a precariousness that no one cares to share with you in the here and now” (2013, 14). As a response to this materially resistant world that chronically exposes marginalized groups to precarity, Allison observed the formation of “different alliances and attachments, new forms of togetherness, DIY ways of (social) living and revaluing life” (2013,

18). Without centering their work on the category of precariousness or precarity, many other anthropological and critical works address the disproportionate degree of vulnerability and unprotectedness of some social groups: labor migrants (Holmes 2013; Horton 2016; Leon and

Wells 2015), undocumented persons (Castañeda 2019; Gonzales 2015; Ticktin 2011), people with

353 disabilities (Ben-Moshe et al. 2014; Das and Addlakha 2001; E. A. Davis 2012; Eide and Ingstad

2011), care workers (Brodwin 2013; Parreñas 2002; Matza 2018), indigenous people (Povinelli

2002; Simpson 2014; Stevenson 2014), sexual minorities (Dave 2012; C. Howe 2013; Manalansan

2003), intermittent and flexible workers (Han 2012; Millar 2018; Muehlebach 2012), the homeless

(Knight 2015; Höjdestrand 2009; O’Neill 2014), people with drug addiction (Carroll 2019; Zigon

2010), and geopolitically targeted populations (Al‐Mohammad 2012; Puar 2017), to name just a few. For all these people, who are a multitude, dwelling in the world—the Heideggerian thinking and building—as in participating in the building of the world has been repeatedly interrupted by conflated forces of racism, ableism, classism, sexism, oppression of linguistic minorities, undocumented persons, transphobia, homophobia, religious hatred, and other forces of targeted oppression.

And yet, in the midst of these zones of social abandonment and compounded pressure, alternative worlds may come to grow (Cadena and Blaser 2018; Blaser and de la Cadena 2018;

Halberstam 2011; Povinelli 2011; Zoanni 2018b). Through recognizing themselves as actors and cultivators of these zones, some of my interlocutors experienced their disability not as a pedagogical device to uncover ableism (Kulick and Rydström 2015) but as a source of unique expertise, nonnormative embodiment (D. T. Mitchell and Snyder 2015; D. T. Mitchell, Antebi, and Snyder 2019).

354 Broader climate of political and civic participation

Fig. 24 Homunculus loxodontus, by Margriet van Breevoort. In Russian, this sculpture was dubbed “Zhdun” (the Awaiter). Zlelik2000 / Wikimedia

Patterns of passivity in relation to the outside world and the expectation of a benevolent external force to positively improve one’s immediate environment were captured by the Zhdun

(the Awaiter) meme that became popular on Russia’s internet in January 2017. Zhdun is a Russian name for Homunculus Loxodontus, a sculpture by Dutch artist Margriet van Breenvoort. Zhdun translates as “the Awaiter” and carries the meaning of eternal waiting for something—for a change, for improvement, for someone else’s intervention. Dmitry Travin, a political theorist, writing for

Vedomosti, calls Zhdun a new national symbol in his article “Russian Zhdun.” He writes:

Russian zhdun is our great army commander who lured the enemy to Moscow and is waiting for the enemy to devour themselves. Russian zhdun is the opposition, waiting at the heart of Siberian ores that their heavy chains would fall for some reason, that some brothers would come and return their sword to them. Russian zhdun is the active youth who releases its energy at parties listening to “Change! We are waiting for the change!”57 Russian zhdun is business that has been waiting for years and years for the Central Bank to lower the interest rate and create all the conditions for domestic producers. Russian zhdun is the power itself that is waiting for the oil and gas prices to go down instead of creating those conditions for domestic producers. Russian zhdun is diplomats, who are waiting for Trump to come and lift the sanctions. And if he doesn’t, we’ll wait for four

57 This is a line from a very famous song by Victor Tsoi, the leader of post-punk Russian band KINO. The song was released in 1986 and became the anthem of the generation.

355 years more, until someone else lifts them, because the power in the US changes but our Zhdun remains unchanged. Russian zhdun is the church that suggests waiting until the Last Judgment when those who have been waiting quietly and who have submitted themselves to the authorities will rejoice, and those who have been in a hurry to do something will be fried on pans somewhere not far from the hot stove. Russian zhdun is the revolutionary who is waiting for objective conditions that make change possible. … How great is Russian zhdun! Through Lenin’s hands, it reached its complete success. During socialism, waiting became truly all-encompassing and universal. In the morning, he [zhdun] waited for his bus to get to work. At work, he waited for their boss’s orders, as sadly. But more than anything he waited for the end of the workday because none of those orders made sense. In the evening, he waited in line for deficit goods. He waited for hours. For months he waited for imported furniture. For years he waited for a separate apartment promised to him by the authorities. For some time, he waited for communism and the world revolution, but he refused them earlier than groceries, furniture, and decent accommodation.58

Travin provides a reading of Russian history through the trope of passive waiting, epitomized in

the figure of Zhdun. This interests me as a diagnosis (as opposed to a right or wrong explanation of the course of history) that opens up further discussion of civic participation in the making of the world in which people dwell.

The figure of Zhdun is the one that epitomizes popular frustrations with the inability to drive and partake in social change. The prioritization of active and intentional intervention at the expense of stasis is endemic to liberal ideologies (Daggett 2019) but not limited to them. The ideology of state socialism praised the figure of an active and engaged worker, who actively cares about the wellbeing of the broader collective. It is dangerous, however, to only locate this figure within the domain of ideology, counterposing it to the “real experiences” of people who lived through socialism. Such a construction that relies on rigid binary oppositions—what Alexei

Yurchak called “binary socialism”—has received strong critique:

What tends to get lost in the binary accounts is the crucial and seemingly paradoxical fact that, for great numbers of Soviet citizens, many of the fundamental values, ideals, and realities of socialist life (such as equality, community, selflessness, altruism, friendship, ethical relations, safety, education, work, creativity, and concern for the future) were of genuine importance, despite the fact that many of their everyday practices routinely transgressed, reinterpreted, or refused certain norms and rules represented in the official ideology of the social state. For many, 'socialism' as a system of human values and as an everyday reality of 'normal life' (normal'naia zhizn') was not necessarily equivalent to 'the state' or 'ideology'; indeed, living socialism to them often meant

58 https://www.vedomosti.ru/opinion/articles/2017/02/09/676764-zhdun accessed on 12/31/2019

356 something quite different from the official interpretations provided by state rhetoric. (Yurchak 2006, 8)

A country of soviets, or councils, was set up to be administered as a country of councils. It was supposed to reward initiative. Yet combined with censorship and ideologically motivated policing—which was certainly equally strong throughout the lifetime of the Soviet state—it certainly was not always the case. There has always been initiative and civic activity, along and against the grain—punks, stilyagi, underground publishing, to give but a few examples. These initiatives took different forms—clubs, organizations, teams, movements, informal networks—but often forms different than those sanctioned by liberal ideologies.

After the collapse of the Soviet state and as a result of the subsequent period, various sociologists and anthropologists registered the diminished quality and deintensification of civic activism in Russia (Sedova 2015; Petukhov 2006; 2012)—of all diverse forms of civic participation, Russians identified voting as the single most important focal point. Harsh economic struggles together with a highly volatile political situation left people focused on figuring out individual solutions and allergic to collective action and rhetoric (Crowley and Ost 2001; Rivkin-

Fish 2005; Petukhov 2012). Julie Hemment (2015, 10) argued that this ongoing renegotiation of the division of responsibility and roles between the state, NGOs, and private individuals is not unique to Russia but instead is a global phenomenon.

Importantly, in the 2000s and the 2010s, the civic action has gravitated toward various nuclei, clearly identifiable as forms of citizen care: self-organized communities that addressed very practical needs in a collective fashion (Yadov, Danilova, and Kleman 2010). Among the common examples were cooperatives of apartment owners, workers, and online communities housed on social media platforms such as vk.com and Facebook. The triggers for these forms of collective organizing were raising prices of utilities, the poor condition of apartment buildings, poor labor

357 conditions, and insufficient student activities. Additionally, this period has also featured several prominent political protests where demographically different groups took to the streets to publicly express their disapproval of a course of events: in 2005, a protest against the monetization of benefits, then anti-Putin protests in 2010, massive protests against election fraud in 2012 (soon after which the freedom of gathering was limited), a mass truck driver strike in 2015, and anti- corruption protests and marches against the new pension reform in 2018. 2019 saw protests against the fabrication of a criminal case against journalist Ivan Golunov and election fraud in Moscow, against converting a city recreational zone into a church in Yekaterinburg, numerous individual protests against cases of injustice. By the end of the 2010s, massive protests—permitted and not— made it onto federal news often.

Every year, the Civic Chamber provides a report on the conditions of civil society in

Russia. These reports capture annual tendencies in what the Civic Chamber identifies as markers of civic activity, markers of the development of the third sector. In 2017, the definition provided for civil society was “engaged and active citizens involved in the care for the common future”

(The Civic Chamber of the Russian Federation 2017, 1). It also stated that despite the growing number of volunteers and grassroots initiatives, the number of NGOs is dropping as public trust of them remains low (the report contains no data on how this trust is measured and no acknowledgement of the fraught relationship between the military security apparatus and the cultivated atmosphere of distrust). In 2017, they identified the main public demand as being one for justice. In particular, the most discernible markers of injustice were detected in the “luxurious life of state bureaucrats and their relatives, inexplicable and unavailable to common people” (The

Civic Chamber of the Russian Federation 2017, 1). They saw the injustice to be based and manifested through a universal stratification of different domains—from medicine to law. “The

358 mission of civil society is in eliminating such injustice, given that existing inequality became a brake in the development of the country” (The Civic Chamber of the Russian Federation 2017, 1).

Among all activities captured and claimed under the banner of civic activity, the work of social institutions and projects that mediate between the state and private citizens was presented to be of primary importance. Among these mediators are the Civic Chamber of the Russian

Federation, regional civic chambers, and All-Russian Popular Front, as well as a vast network of regional and federal councils that advise the executive branch. The work of mediation takes the form of large forums such as the “Social Forum of Russia,” “Forum of Social Innovations in the

Regions,” and “Community.” Additionally, these organizations are famous for sponsoring youth projects—about which Julie Hemment wrote her 2015 book.

Julie Hemment (2015) examined state-run youth projects between 2001 and 2011 and demonstrated that against the stereotypical assumption of the state-control nature of these interventions, these youth projects, all driven by motifs as diverse as interest in professional growth, network expansion, and interesting pastime, in fact did create platforms for civic engagement, yet of a hybrid kind. They hijacked the discourse of individual empowerment and entrepreneurship, on the one hand, and were driven by the “animus, complex sense of nostalgia, and disappointment and disaffectation—with liberalism, with the West” (Hemment 2015, 13), on the other. The state-run youth projects embodied the double-logic, endemic to broader Russian contexts at the time: that of “a bold and optimistic insistence on Russia's path toward modernization, its determination to become more competitive in the global economy (by training a new cadre of entrepreneurial leaders, encouraging ‘talent’ and ‘innovation’)” and that of a

“defensive and belligerent xenophobia that is deeply suspicious of external, foreign forces and the consumption, markets, and liberalism they represent” (2015, 22).

359 The link between political and nonpolitical activism in Russia, however, is not fixed or clear. Although many forms of action indeed seek the label “nonpolitical,” N. Sedova (2015) argues that there is a connection between the degree of activity and its political status—the more active a nonpolitical project is, the more political it is. Sedova reports: “At present, Russians’ active involvement in practices of political activism can be rated at the level of 12 percent, which constitutes a kind of nucleus of the political life of society. Almost four times greater is the number of those who show an interest in politics but limit themselves to for-show types of involvement in politics (45 percent). Remaining uninvolved in any kind political life are 43 percent of Russians, who practice no kind of political participation at all” (2015, 287). When writing about the general population, Sedova is not optimistic: “Russians who are not involved in political life these days

(43 percent) are also not likely to come out of their ‘political oblivion’ (41 percent). The main possibilities for any growth of political activeness may be found in population groups and strata who are already involved in the sphere of politics, even if it is just at the level of demonstrations, for show” (2015, 287). Sedova’s narrative constructs a population disengaged with the political situation, a population with little interest in participating in the political (see also Arendt 1998).

In sociological literature, there is a distinction between the somewhat indifferent and alienated majority and an activist nucleus (Kleman, Miryasova, and Demidov 2010; Petukhov

2006; Sedova 2015), or an everyman [obyvatel’] and an activist [activist]—who populate contemporary civic society in Russia (Yadov, Danilova, and Kleman 2010, 75). Petukhov (2012) reports the pessimistic outlook of Russian youth onto the possibilities in contemporary politics:

Russians note the “elitist” nature of Russian capitalism and Russian democracy, when a certain increase in the level of material well-being of the population is accompanied by a narrowing of the “corridor of opportunities”, especially for young people. This is confirmed by the estimates of some experts who believe that the current socio-economic system is able to provide a modern standard of living for approximately 25% of the country's population, while 75% of Russian citizens under the dominance of this system do not even have a chance at the current level income, as well as quality education and medical care [Yavlinsky, 2011: 17-18]. (Petukhov 2012, 50)

360 Petukhov connects this with the intensified pessimism of the masses:

Hence the desire to “live in the present day” without making plans for the future. The increased level of pessimism in assessing the opportunities for most people to engage in entrepreneurial activity and especially to participate in public and political life today distinguishes residents of the two capitals. Both of these areas—entrepreneurship and socio-political life—are closely related to issues of administrative regulation. Apparently, it is precisely its redundancy in Moscow and St. Petersburg that largely determines this pessimism. This is indirect evidence that a base is formed in these cities for protest moods of people who have a need for freedom of social and political activity and demand for it, but who do not see real opportunities for this. (Petukhov 2012, 50)

He raises an important point—with contemporary technologies, it is not only the question of numbers of citizens, it is about how loud they can make their voices sound and intervene in the fabric of the everyday. I argue that events and activities organized by White Caners provide an outlet for interventive action in the ways in which individuals’ communities and environments work.

Tomas Matza (2018) offers a different approach to tackling the question of the political that emerges at the everyday level. He closely examines the ways in which the formation of political subjectivities in Russia takes place without organized collective action but instead through management of intra- and interpersonal relations, on the one hand, and through encouraged work on the self. Although distanced from the domain of professional politics and decision making— and often intentionally rendered antipolitical—these forms of intentional action remain within the domain of the political as they still produce subjects linked together through the webs of power relations, points of knowledge, and intentional ethical values. Matza’s use of a Foucauldian framework to address power relations and subject formation in antipolitical contexts proves helpful in demonstrating how intentionally antipolitical actions, those that in emic terms belong to the domain of the social (prevalent popular interpretation) or the cultural (preference of my blind interlocutors), configure new political formations and cultivate new forms of collective being.

The inclusion activities organized and carried out by my interlocutors offered nondisabled participants a way to join interventive forms of action protected by the signature of the state,

361 exempt from the label of the political and yet constitutive of the desired self and the desired community. They cleaned parks, organized free workshops for children and adults, held language classes, performed onstage, and in general organized an economy of common action through which they were summoned to focus on practical ways in which to make their home communities better.

Further, without focusing on tailoring the environment to the needs of a specific social group, mixed projects organized by White Cane under the banner of inclusion (these projects are not for people with disabilities, they are organized with the participation of people with disabilities to achieve a third goal) produce the conditions in which nondisabled people recognize themselves as involved with the world and intervening into it.

The discourse produced by White Cane is built in opposition to this trope of waiting and expecting others—family members, the government, God, cosmos—to take care of oneself, the place, and the community one belongs to. In practice, this calls for coalitional work. They model an ethos of applied care, care that is resonant with familiar patterns of individual and collective action. Lively communities are those that are made up of subjects animated and driven enough to provide care for the place it occupies and the social fabric it’s made of.

At the same time, such a position remains risky as it reinforces individual responsibilization as a universal remedy to almost all problems. The individualization of responsibility, as it is known

(E. A. Davis 2012; Trnka and Trundle 2017), risks shifting attention from dealing with the systemic cause (located at the broader, systemic level) to focusing on amending the negative effects of a given problem. And yet, as I argue in this chapter, in the absence of functional mechanisms available to lay citizens to influence decision- and policy-makers, such an approach produces new forms of citizenship and community. It works as a form of prefigurative politics (Graeber 2004), as practice without articulated political platform, as a shifting platform for social changes that bear micropolitical effects.

362

Conclusion

Being full of life—enamored by it, driven, caring, entangled with it, being of it—is a characteristic that White Caners were routinely attributed with. New blind acquaintances and old and new nondisabled allies alike voiced this fascination with my interlocutors’ ability to live as if they loved living their lives, as if they savored both the good and the bad, as if excitement was something that came to them easily, as if even tedious bureaucracy did not get them, as if broken promises did not matter. In this chapter, I conceptualized this form of perception and image as a constructed and carefully cultivated personal feature—liveliness—which has the potential of spilling over well beyond the boundaries of individual life. This expansive potential of individual liveliness always connected one to others—this form of individual liveliness was always constructed in relation to others. Or at least, it was designed to be.

In the case of blind persons, becoming lively was a quite regulated process—as only certain kinds of activities and forms of engagement were suggested to deliver the value of becoming a lively and valued individual. In this chapter, I reviewed a series of choices and options that blind children were offered at their school as a promise of a more included continued presence in the future.

White Cane’s inclusion events and programs attracted an unusual contingent of participants, namely, a motley crowd of adults without disabilities who seemingly had no obvious ties to the disabled community. Their interest and ability to serially join inclusion-themed actions was connected to the broader grammar of civic action and intervention that emerged in the mid-

2010s. Through coalitional practical action focused on the improvement of community life for all, people without disabilities were converted into routine allies who would allocate their time and resources to the building of the world they live in, to tending to this world, and dwelling in it.

363 Through this serial engagement, people with and without disabilities cultivated themselves as subjects capable of inclusion, oriented to a broader goal.

Conclusion

As I was completing this dissertation, my blind interlocutors were still working on inclusion—they launched research on the immediate and long-term effects of inclusive experiences on nondisabled people, kept building their collaborations with international and domestic partners, organized and presented at conferences, held seminars, events, educational modules, ran a training program at the regional school for the blind, organized city festivals, and

Oleg was writing a manuscript on extrability. As Tania used to say, inclusion cannot actually be achieved in our lifetime and it would always demand more of us: more effort, more commitment, more creativity, more people. Although the priorities of some interlocutors shifted toward more immediate concerns such as building a family and fixing their apartments, others engaged with inclusion-themed activities in a deeper and more engaged fashion. They seemed to grow professionally as the field of inclusion grew too.

Although it is hard to find a person today in Russia who would openly admit to holding a belief that people with disabilities should not be included (which is not to say that nondisabled people do not in fact hold such opinions), the terms of this celebrated inclusion differ dramatically, given the broader vagueness of the concept and the underdeveloped oversight of or any kind of reflection on its implementation. If for some, inclusion in Russia connoted the provision of targeted services for people with disabilities, others used inclusion as a tool for gaining access to funding or for inspiration of predominantly nondisabled audiences. As the legal system incorporated the concept of inclusion and mandated it at a systemic level, nonprofit workers, schoolteachers, state actors, businesses, and employed and unemployed people with disabilities were offered

364 opportunities for coalition-building. In this dissertation I sought to explore these coalition-building attempts and specifically the moments and ways in which inclusion stops being about disability per se and instead summons a different sort of subject, that of a fellow dweller.

I began my exploration with the aesthetic configuration of inclusion—what I called here the phantasmagory of inclusion—a cluster of plots, representations, images, and sensations associated with inclusion. The phantasmagory of inclusion gained salience in opposition to the phantasmagory of disability as scandal, a historically entrenched affective and aesthetic cluster associated with disability in Russia. Both kinds of phantasmagory, tied together in their opposition, were deeply depoliticized, although through different means. If disability as scandal lost its ability to materialize its critical impulse as a result of the historical disenfranchisement of people with disabilities in Russia, inclusion was intentionally and decidedly made apolitical by the practitioners themselves. By pushing inclusion to the domain of the economic and the social, inclusion practitioners sought to secure political support and attract more allies.

Given the principally underfunded nature of the inclusion complex and its broader reliance on invisible and often unremunerated labor, I tracked the ways in which inclusion workers derived different kinds of value from their being implicated in the inclusion complex. In offering a platform for coalitional collaborations, the inclusion complex attracted unexpected members, throwing inclusion far out of the confines of the domain of disability affairs. Researchers, larger and smaller private businesses, regional governmental structures of diverse levels, volunteers, students, parents, and people from a local rehabilitation center coordinated their efforts to pull inclusion in different directions and strain its conceptual potency. How could inclusion be helpful to someone recovering from drug abuse? Where would inclusion take a small business? Would inclusion save the face of a local government with low rates of public approval? Would inclusion carry all these different people to their desired destinations? Precisely because of inclusion’s vagueness and

365 reliance on thick lateral and vertical connections, the answers to these questions differed dramatically: inclusion could become a powerful tool to propel careers and, at the same time, sink and exhaust people.

During fieldwork, I got a chance to work with a segment of this inclusion complex—a segment populated and inhabited by a group of blind interlocutors who kept branching out and recruiting other people, with and without disabilities, into their inclusion-themed programs and events. These loosely organized networks centered around a nonprofit organization called White

Cane. The chapters that reviewed White Caners’ work and the dynamic conceptual edifice helped me approach the affective and ethical sides of inclusion work. Specifically, I was preoccupied with the question of what it takes to produce subjects capable of prefigured inclusion and what kinds of broader conditions enable and disable inclusion to be experienced, recognized, and reproduced.

The four last chapters of this dissertation offered an analysis of the pylons on which the conceptual edifice of White Cane stood—being needed, vkluchenie, trust, and extrabilities (which

I approached through an analytic of individual and communal liveliness).

The uniqueness of my interlocutors’ approach to inclusion has different layers to it. First, to my knowledge, it is the first engagement with disability inclusion theorized from a position of blind subjects, albeit subjects occupying different social positions and statuses in postsocialist

Russia. I was drawn to exploring this conceptual and practical cluster due to its prioritization of sociality and mutual relatedness, at the expense of the focus on improving accessibility of the built environment. Second, this iteration of inclusion was and still is openly about reconfiguring the social. Its goal has never been the wellbeing of a group of individuals with particular forms of bodies or minds. Instead, through using the experiences and knowledge derived from living with blindness, my interlocutors recruited a multitude of persons with seemingly unrelated and dissimilar backgrounds to the project of collective dwelling in an environment that resists one’s

366 comfort and easy solutions. Finally, this inflection of inclusion in practice demanded and solicited new subjects which would begin their formation as ethical subjects through recognizing themselves as free and responsible, acting within the constraints of their communities and environments, yet responsible for bringing about change, regardless of its scale and size.

Without entering the agora as rights-bearing subjects who demand legal recognition and the provision of functional mechanisms of ensuring these rights, my interlocutors and their allies created a tool of generating localized and personalized ad hoc interventions in their communities.

This tool was not and is not perfect. It still contributes to tearing and wearing them as persons implicated in the operations of underfunded and demanding productive machines that prioritize economically sustainable and socially resonant practices at the expense of those that do not fit within normative frames. Yet, as Masha, the most recent member of White Cane I met, told me, when one has a community to go back to, her weathered body would find a way to tend to itself in that community, as they “always, always emerge together.”

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