Reproductive Citizenship: Experiences of Mothers with Disabilities in Russia
BY ALFIYA BATTALOVA B.A., Omsk State University, 2007 M.P.A, University of Maine, Orono, 2011
THESIS Submitted as partial fulfillment of the requirements For the degree of Doctor of Philosophy in Disability Studies In the Graduate College of the University of Illinois at Chicago, 2017
Chicago, Illinois
Defense Committee: Sarah Parker Harris, Chair and Advisor Carol Gill Akemi Nishida Michael Rasell, Lincoln University, United Kingdom Kateřina Kolářová, Charles University, Czech Republic ACKNOWLEDGMENTS
This dissertation is the result of several years of careful thinking about what should be the focus of my research. The components that I had in mind – disability in Russia – took a long time to coalesce into a clear idea of the research project. I am indebted to people around me who were patient and supportive as I was working through the different stages of this process.
I would like to acknowledge my deep gratitude to my academic advisor and the committee chair, Dr. Sarah Parker Harris. Sarah’s guidance and her ability to map out a vision kept me going even after the break that I took from the pursuing my degree. It is this reassurance that things are possible and things are doable that was crucial for my decision to finish my PhD.
In the times when everything seems vague and disorganized, Sarah brings in clarity and a calm balanced perspective that are so crucial during the dissertation writing process.
I remember that when Dr. Michael Rasell agreed to serve on my committee, I was beyond excited. Throughout the last few years of working with Michael, he proved to be an indispensable source of my critical engagement with the scholarship on post-Soviet Russia. His insightful feedback and challenging questions pushed my own thinking and encouraged me to keep focused.
I cannot express enough gratitude to Dr. Carol Gill who introduced me to the rich and exciting domain of qualitative research in disability studies. The kind of critical engagement with the processes of qualitative methodology and the deep appreciation of the knowledge production based on qualitative methods taught me to be a much more reflexive researcher who values ambivalence and in-betweenness.
At the crucial time of my dissertation research, I was extremely fortunate that Dr. Akemi
Nishida and Dr. Kateřina Kolářová had agreed to step in and serve on my committee. Akemi’s
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ACKNOWLEDGMENTS (continued) expertise on transnational feminism and social justice and Katerina’s critical work in cultural studies were instrumental in shaping my own thinking.
I would like to thank Aly Patsavas, a friend and a colleague whose support and kindness sustained me during the year of writing my dissertation in Chicago. Aly’s active listening and expression of solidarity made a huge difference during some hard times. I also want to express gratitude to my fellow colleagues and friends in the Department of Disability and Human
Development at UIC whose interdisciplinary work gives me a lot of hope in thinking about the future directions of disability studies as a field.
As a non-native English speaker, I appreciate all the people who provided editorial assistance in my writing process. I would like to thank Dorian Lebreux for her editorial suggestions. My great group of friends in Vancouver, especially friends from the disability community there, offered me their encouragement and thought-provoking conversations.
I could not have done it without my wonderful family. My mom has been by my side through ups and downs and has always been my source of strength. I cannot imagine doing this work without my sister and my niece who provided me with a much needed distraction from sometimes frustrating writing process. I cannot thank enough my husband Pratick who believed in me and supported me from miles away.
Finally, I want to express my sincere appreciation to all the research participants who agreed to be interviewed and whose stories of motherhood informed this research in a truly transformative way.
AB
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TABLE OF CONTENTS
CHAPTER PAGE I. INTRODUCTION ...... 1 A. Background ...... 1 B. Goals and Research Questions ...... 4 C. Methodology ...... 7 D. Definitions...... 9 E. Dissertation Outline ...... 11
II. GENDER AND MOTHERHOOD IN THE CONTEXT OF CITIZENSHIP ...... 14 A. Introduction ...... 14 B. Gendered Citizenship ...... 15 C. Maternal Citizenship ...... 17 D. Motherhood and Disability ...... 19 E. Exclusion of Disability in Citizenship Debates ...... 20 F. Gender and Motherhood in the Soviet Context ...... 22 G. Gender Discourse in post-Soviet Russia ...... 23 H. Families and Disability in Russia ...... 28 I. Invisibility of Disability Discourses around Motherhood ...... 31 J. Conclusion ...... 35
III. CONCEPTUAL FRAMEWORK ...... 38 A. Introduction ...... 38 B. Citizenship Debates: Shifting in Depth and in Breadth ...... 39 C. Intersectionality...... 45 D. Care and Citizenship ...... 48 E. Subjectivities and Citizenship ...... 53 F. Belonging ...... 57 G. Reproductive Citizenship ...... 60 H. Conclusion ...... 61
IV. METHODOLOGY ...... 63 A. Introduction ...... 63 B. Exploratory Qualitative Research ...... 63 C. Intersectional Research ...... 64 D. Feminist Disability Studies Methodology ...... 65 E. Experience, Context, and Discourse ...... 68 F. Post-Soviet Research Space ...... 70 G. Research Site ...... 71 H. Recruitment Strategies: Negotiating Access ...... 72 I. Research in Virtual Spaces ...... 74
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TABLE OF CONTENTS (continued) CHAPTER PAGE J. Research Participants ...... 75 K. Semi-structured Interviews ...... 77 L. Translation ...... 78 M. Data Analysis ...... 79 N. Insider-Outsider ...... 83 O. Reflexivity...... 85 P. Limitations ...... 86 Q. Conclusion ...... 88
V. AMBIVALENT SUBJECTIVITIES ...... 89 A. Introduction ...... 89 B. Constructing the Mother ...... 91 1. Independence discourses ...... 95 2. Feminine subjectivity ...... 97 C. De-essentializing Motherhood ...... 101 1. The role of barriers...... 104 2. Seeing yourself through children ...... 105 3. Having the right partner ...... 111 D. Contestations of Disability ...... 113 E. Conclusion ...... 121
VI. MULTI-TIERED SUPPORT SYSTEM ...... 123 A. Introduction ...... 123 B. Mediated Care Practices ...... 125 C. The Safety Net of Marriage ...... 129 D. Invisible Help of Maternal Grandmothers ...... 134 E. Peer Support ...... 137 F. Negotiating Children’s Help ...... 139 G. Macro-level Support: From State Support to Self-sufficiency ...... 145 H. Conclusion ...... 150
VII. CLAIMING SPACES. ENACTING AGENCY AND BELONGING ...... 152 A. Introduction ...... 152 B. Conceptualizing Belonging ...... 153 1. Justification in the context of belonging ...... 159 C. Enacting Agency ...... 163 1. Positivity ...... 165 D. Claiming Agency: Finding Ways Around ...... 171 E. Conclusion ...... 174
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TABLE OF CONTENTS (continued) CHAPTER PAGE VIII. CONCLUSION ...... 176 A. Summary of Major Findings ...... 177 B. Contributions...... 180 C. Limitations of this Dissertation and Future Research ...... 184
APPENDICES ...... 187 Appendix A ...... 188 Appendix B ...... 191 Appendix C ...... 192 Appendix D ...... 193 Appendix E ...... 194 Appendix F...... 195 Appendix G ...... 198 Appendix H ...... 201 Appendix I ...... 203
CITED LITERATURE ...... 206
VITA...... 227
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SUMMARY
This dissertation explores the lived experiences of mothers with disabilities in Russia in an environment that associates motherhood with a preferred social status and practice for a woman. The dominant narratives of the gendered policy of encouraging higher birth rate
(pronatalism) exist alongside a failure to recognize reproductive and sexual rights of disabled women. Using the framework of reproductive citizenship that engages with the ways a sense of self, systems of formal and informal support, and a desire to belong within a community shape the claims for citizenship, this dissertation seeks to analyze how mothers with physical disabilities conceive of their lived experiences and negotiate their membership in the post-Soviet society. By focusing on the non-Western context, this dissertation expands the theoretical and empirical boundaries of disability studies.
The analysis is based on the empirical data obtained from the qualitative interviews with
14 mothers with disabilities whose experiences demonstrate how the interaction of disability and gender shape new meanings around motherhood with disability. More specifically, the narratives demonstrate the ambivalence of balancing the subject positions of a mother that has a cultural value and that of a disabled woman that is often denied this value. Despite foregrounding and assigning value to the experiences of motherhood, mothers with disabilities recognize that disability introduces a much more profound perspective on life in general and child-rearing in particular. Mothers with disabilities also push against a narrative that neatly divides care into something that is either received or provided. From the care and support embedded into the kinship networks of family and friends to the macro-level governmental monetary support, mothers with disabilities negotiate multiple layers of care depending on the context and their
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SUMMARY (continued) sense of self-sufficiency and independence as a mother. Finally, in their narratives describing the physical and attitudinal barriers, mothers with disabilities resort to strategies that justify these barriers prioritizing a need to belong over the issues of social justice. The stories of mothers with disabilities provide a nuanced understanding of the ways in which citizenship can be claimed and negotiated and further the discussion of the inherent ambivalence of the disability experience.
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INTRODUCTION
A. Background
When Russian narratives of traditional values and pronatalism, the policy or practice of encouraging the bearing of children, especially government support of a higher birthrate
(Dictionary.com, n.d.), gained momentum in the early and mid-2000s, I started wondering how the lived experiences of mothers with a disability might align with these narratives. Today in
Russia, a woman with a disability who decides to become a mother against cultural stereotypes that position her as unfit and incapable of motherhood must work through multiple barriers to do so. For example, Russia’s Department of Child Protection social policies list disability as a criterion for excluding people from becoming adoptive parents (Adoption in Russia, 2016), associating disability with incompetence and a state of perpetual infancy, and parents in Ukraine1 with spinal cord injuries that were interviewed by Phillips (2011) reported experiencing negative reactions from agents of state structures of power such as social services and housing authorities.
When maternity and disability register visibly in the same body, they sometimes create a visual and cognitive dissonance, as if one can be either a mother or a disabled person – not both at once
(Lindgren, 2011).
Gapova (2016), who coined the term public patriarchy (obschestvenny patriarkhat) to denote that discussions around reproduction reveal values around gender, argues that social policies focusing on biological difference as a foundation of citizenship are aimed at legitimizing specific national agendas. This then raises the question of what social policies in Russia say
1 The shared history of the Soviet Union makes Ukraine similar to Russia in the ways disability is constructed.
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2 about the national agenda concerning women, motherhood, and disability. Researching this question, it is clear that the ways in which disability and motherhood operate against the backdrop of Russian nationalist policies have not been sufficiently explored. The pronatalist agenda has helped shape a horizon of imaginative possibilities regarding state power and gendered citizenship (Rivkin-Fish, 2010) by bringing into the spotlight the voices of those who are barely visible in the conversations around what it means to enact motherhood and disability in Russia. Thus, struggles over these meanings are entangled with state power and citizenship.
In this dissertation, I seek to further the discussion around citizenship theory as it pertains to motherhood and disability and contribute to the understanding of citizenship as a process rather than simply a legal status. To suggest that citizenship is a process is to recognize that citizenship is fluid in nature and that national belonging is always in flux. This dissertation also seeks to contribute to the theorization of the citizenship by providing qualitative data, gathered by interviewing mothers with disabilities in Russia about their perceptions of motherhood and the perception of them as mothers. In doing so, I developed a framework of reproductive citizenship built around the concepts of subjectivity, care, agency, and belonging. The interviews are grounded in the broad overview of the discursive field surrounding motherhood in Russia.
Mothering with a disability challenges assumed notions of what it means to live with a disability, and problematizes the question of whether mothering is a universal or differentiated practice. The task of this dissertation is to foreground the role of the lived citizenship and to examine it critically. I invoke dominant narratives of motherhood and pronatalism to contextualize the experiences that are informed by them, rather than to normalize their effects.
By challenging the traditional notions of femininity and motherhood, mothers with disabilities highlight the importance of developing a techne, a creative and productive way of seeing and
3 being in the world when new forms of knowledge and values emerge from the constraints and tensions of actual embodied situationality (Lewiecki-Wilson & Cellio, 2011). In other words, by trying to reclaim a right that is deeply informed by essentialist and uncritical perspectives, a disabled woman might seek to conform to gender expectations but her embodied experience of disability transforms the meaning of gender and, ultimately, disrupts the very narratives that she seeks to adhere to. Such ambiguity is what characterizes mothering with disability.
The framework for this dissertation draws on the notion of mothering as a citizenship practice (Longman, De Graeve, & Brouckaert, 2013) that places caregiving at the center of socio-political citizenship since mothering involves fostering the reproduction of cultural values and/or faith practices, social values, and identity in children. The context of disability expands this framework by recognizing the a priori transgressive nature of mothering with disability and by arguing that this politicization stems from the way mothers with disabilities renegotiate their sense of self, the notions of care, agency and belonging. These renegotiations do not exist in a vacuum but are rather embedded in the politics of exclusion as they are manifested through socio-economic, physical, and attitudinal barriers against women with disabilities. By invoking reproduction, the framework pushes back against societal attempts to regulate disabled bodies and dominant discourses of motherhood.
This dissertation is driven by the work of feminist disability studies that foreground the experiences of women with disabilities. There is a tension between arguments in feminist disability studies’ that demonstrate how public assumptions reinforce the idea that women with disabilities do not conform to any of the societally sanctioned roles (Blackwell-Stratton, 1985;
Mintz, 2007) and the impact of the state project on reproduction that creates an ideological background for creating the conditions for that femininity. Cultural stereotypes that imagine
4 disabled women as asexual, unfit to reproduce and outside the sphere of true womanhood and feminine beauty put women with disabilities in a position of having to struggle to have their sexuality and right to bear children recognized. In this line of thought, disability thus both intensifies and attenuates the cultural scripts of femininity (Garland-Thomson, 2005). What happens when the discursive field in which such struggle takes place provides no alternatives for expressing that femininity in different ways? If the only way to demonstrate one as a woman is through motherhood?
B. Goals and Research Questions
This dissertation seeks to answer the following questions.
1. In what ways do mothers with disabilities construct their sense of self?
2. How do support systems (within and outside families) influence the experiences of
mothers with disabilities?
3. How do mothers with disabilities claim citizenship and belonging?
These questions are formed in response to gaps in citizenship theory literature, feminist disability studies literature and Slavic studies literature and addressed by asking women with disabilities directly about their lived experiences.
The sociology of citizenship has evolved over the years to include a feminist critique of the illusory universality of citizenship and its exclusionary nature (Isin & Turner, 2002; Lister,
1997), specifically on the basis on disability (Meekosha & Dowse, 1997) as well as a wider discussion of whether citizenship is confined to the public domain (Plummer, 2003). Yet citizenship theory fails to take into account how lived experiences are shaped by intersecting categories of race, gender, and ability. Therefore, one of the contributions that this dissertation seeks to make is to introduce an intersectional perspective to the study of citizenship. This
5 dissertation project seeks to further the discussion around citizenship theory and contribute to its understanding as a process rather than a status. Here, to invoke process within citizenship debates is to recognize the fluid nature of living on the margins, and mothering with a disability reexamines the question of whether mothering is a universal or differentiated process. The framework of citizenship serves as a tool for expanding our understanding of disability because as much as citizenship is about how people as subjects are defined and shaped by authority, it is about how they view themselves and act to makes claims, demand protection, communicate and seek help (Whyte & Ingstad, 2007). This dissertation thus seeks to further contribute to the theorization of the citizenship theory by providing an empirical depth to the concepts of care and agency that are an integral part of the citizenship framework.
Feminist disability studies informs this dissertation’s theoretical (Garland-Thomson,
2005; Lloyd, 2001) and empirical (Malacrida, 2007; Prilleltensky, 2003) underpinnings that center around the application of intersectionality (Christensen & Jensen, 2012; Collins & Bilge,
2016) to the context of disability and motherhood. This dissertation seeks to build on this research by introducing a different contextual background that exists in-between the theoretical and geopolitical constructs of Global North and Global South. However, this dissertation also problematizes feminist disability studies by discussing enactments of agency as practices that are confined by discursive and cultural canvasses that dominate the lived experiences of women with disabilities rather than viewing the experiences of women with disabilities in the context of having or lacking empowerment. By problematizing feminist disability studies, this dissertation aims to not only expose its limits but to also recognize the possibilities that a sense of belonging to a dominant discourse can create. It uncovers the flexible and innovative practices of subjectivity, care, and agency by mothers with disabilities in Russia. Examining how women
6 with disabilities disrupt the discourses of womanhood, motherhood, and disability that marginalize them can help shift those discourses to include the corporeality and material knowledges of their lived experiences, which are pivotal to the conceptualization of both gender and disability.
Finally, I focus on post-Socialist space as a geographical location and as a conceptual lens (Koobak & Marling, 2014) that can inform disability studies research dominated by the
Western ideas. Therefore, it is critical to examine key texts from Slavic studies to understand the historical development of “gender” (Ashwin, 2000) in Russia and its embeddedness in Russian discourses of nationhood (Gapova, 2016). Disability across cultures can hardly be encapsulated by universal models. Yet, the practices of neocolonialism are reproduced when the majority world is talked about with little or no engagement with the complex and heterogeneous socioeconomic, political, and cultural landscapes that make up these spaces (Grech, 2012).
Instead of assuming the relevance of so-called universal definitions, we need to question people’s understandings. As part of the so-called “second world”, Russia does not quite fit into the category of the Global South. Yet in the period after the collapse of the Soviet Union, “crip epistemologies” (Kolářová, 2014) were made unintelligible by Russian attempts to build a neoliberal future free from its “disabling” Soviet past and, by bringing together perspectives from the Global South and the so-called “second world,” we can foster the formation of a better global understanding of feminism, gender, and disability, in their multiplicities.
Much of the academic literature on the post-socialist period revolves around the concept of transition that refers to the uninterrupted embrace of the neoliberal paradigm in post-Soviet space but the major focus of these studies is on large-scale economic processes, political elites, and evolutionary trajectories. Although these studies provide a macro-scale perspective on the
7 post-Soviet changes (Cook, 2007), they explain little about how people in Russia experienced actual political, economic, and sociocultural changes since the collapse of socialist rule (Berdahl et al., 2000). When the party state collapsed and administered economies broke down macro structures that were characterized by the permeation of the political system in all spheres of life, a space for micro worlds was created (Burawoy & Verdery, 1999). By focusing on the micro,
Burawoy and Verdery challenge frameworks using the concept of transition, which is often applied to the analysis of post-Soviet states, and argue that transition cannot be thought of as either rooted in the past or tied to an imagined future. Rather, transition is a process suspended between the two. The shift from the monolithic approaches of “torn safety nets” (Field & Twigg,
2000) to micro-level, bottom-up analysis (Rasell, 2011) helps articulate a more nuanced understanding of welfare, human rights, and marginalization. Recent studies on Russia recognize the need to provide less totalizing characterizations and to foreground individuals within their specific contexts. For example, Turbine (2012) focuses on women’s agency and their understanding of human rights to capture how human rights discourses engage with everyday experiences. By shifting the focus on women’s voices, the researcher can foreground women’s agency in the processes of meaning-making of their everyday lives.
C. Methodology
Russia is a vast geographic region that spans eleven (11) time zones, varying climates, ethnic cultures, and economies. For the purposes of this qualitative project based on qualitative interviews, the scope is limited to several cities in provincial Russia. The study participants are from the cities with a population size of more than 1 million. The focus on the provincial Russia is necessitated by the scant research in this area, mostly due to the weaker network of the organizations that can serve as gatekeepers. Face to face interviews were only conducted in the
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Siberian city of Omsk, the author’s hometown. Additional interviews were conducted via Skype with women living in other provincial cities of Russia.
One methodological issue in researching the lived experiences of women with disabilities in Russia since the break-up of the Soviet Union is that there is a danger of reducing them to survival strategies without engaging in a critical discussion of the problematic nexus between the state and the individual at the macro/micro-scale. An additive approach to intersectionality when a combination of several categories (i.e., race and gender, gender and disability) is perceived to create a gradation of oppression has been widely criticized for failing to recognize the interactive rather than essential nature of these categories and their embeddedness in wider power relations
(Davis, 2008). In contrast, the micro-level approach brings the questions of power and negotiation to the center of the analysis. It explores the interaction between actors and structural constraints and focuses on the “micro-politics” of everyday life (Mladenov, 2013; Salmenniemi,
2008).
In my effort to recruit women with disabilities, I was intentional about including mothers whose disabilities were not necessarily recognized by the medical commissions to emphasize the narrow approach to defining disability instead of looking at it from the broader social model perspective. One of the participants who has epilepsy, Lidia, was denied a disability designation and the accompanying pension and other supports. The reason she was given for being denied a disability designation is that she had no visible symptoms of epilepsy. In her interview, Lidia explained that she needed to have a seizure in front of doctors for her claims of disability to be treated as legitimate. The denial of disability designation has tangible consequences for this participant. As someone who is not considered to have a work capacity limitation, she can officially seek employment. However, Lidia says, whenever an employer would learn about her
9 condition, they “don’t want to take responsibility” and refuse to hire her. In other words, they do not want any trouble if something was to happen at work. Hiding her condition from potential employers is not an option because she cannot risk not having anyone help her if she has a seizuere. Lidia’s example demonstrates how conceptualizations of disability within a certain geographical and cultural settings shape who gets to be considered disabled and, even though determination of who is disabled is not the focus of this dissertation, I want to acknowledge how these conceptualizations impact people and their experiences. Lidia’s experience of motherhood was significantly influenced by the fact she is not considered disabled.
D. Definitions
Before outlining the structure of this dissertation, it is important to clarify a few definitions and set the conceptual and geographical boundaries of this research.
Women with disabilities are commonly referred to as ‘women – invalids’ or women with invalidity, both by women themselves and by Russian policymakers. There are very few policies for women with disabilities, and they are mostly developed in the Moscow region (specifically, through the advocacy efforts of such organizations as Katyusha).
The study was not limited only to heteronormative women, however, none of the women recruited for this research identified as Lesbian, Gay, Bisexual, Trans, and Queer (LGBTQ). The only eligibility criteria included a woman’s identification as disabled and the age range of 18 to
60 years old. Considering the current environment of discriminatory policies towards LGBTQ population in Russia, the deeply embedded beliefs that associate motherhood with heteronormativity and taboo around alterative sexuality discourses, the lack of open representation of non-heteronormative women among the research participants is not surprising.
While focusing on the invisibility of one intersection – disability and motherhood, the research
10 questions could not address many other important intersections, including LGBTQ and motherhood. As such, the research questions employ the dominant narratives of the essential woman to deconstruct them and intervene at the level of disability studies. Although such approach forecloses a potential for diversifying a group of research participants and deepening the understanding of lives at multiple intersections, it avoids diluting the complexity of contexts and attempts to set the groundwork for pushing the limits of intersectional research further.
Invalidnost’, a phrase used to describe disability in official, usually medical documents, in Russia originates from invalid, or inform, sickly. Its other meaning refers to something as having no legal force. The term invalid has been used in the Russia official discourse on disability for centuries. It has been prevalent in the disability determination process that requires people to go through a highly bureaucratized medial system of being assigned a degree of disability based on the notion of the loss of work capacity. As such, the term is not considered offensive despite its etiology (“worthless, sick, weak”). In the recent years, an alternative term
“people with limited health capacities” emerged. The term is considered more sensitive, however, “invalid” is still widely used. Invalidnost’ is closely related to the discourses of health.
There are several ways to describe a state of good health in English from different angles
(fit, well, healthy, good, able-bodied). In Russian, though, a single word zdorovyi encapsulates different meanings and can mean everything from sturdy to splendid. Bolezn, bolnoi for sick, is also quite broad and can denote unhealthy, sickly, and even mental illness (Davidova, Manning,
Palosuo, & Koivusalo, 2009). To distance my analysis from the medicalized meanings of invalidnost’, the terms “mothers with disabilities” and “disabled mothers” will be used interchangeably throughout this dissertation. Although both terms reflect different underlying principles (person-first language vs. the societal oppression), they associate disability with value
11 and a life worth living. It is the appreciation of this principle that makes me reluctant to opt for one of them.
E. Dissertation Outline
In the chapters that follow, I examine the research questions mentioned above and address them using the critical framework I have outlined.
Chapter I contextualizes this dissertation project in its relation to the gendered nature of citizenship by providing an overview of literature from Slavic studies that relates to questions of family, disability and motherhood, and an overview of research that applies citizenship framework to the study of disability. Finally, this chapter tracks the history of research on gender and motherhood in Russia to set the contextual foundation for this research, and analyzes the current narratives that inform our understanding of what it means to be a mother in Russia today.
Chapter II develops a conceptual framework of the research by identifying the gaps and strengths of citizenship theory, which stem from the years of critical work by feminists and interdisciplinary scholars who pushed against narrow conceptualizations of citizenship (Das &
Addlakha, 2001; Fleischmann & van Styvendale, 2011; Kershaw, 2010). It then highlights the debates around citizenship that include intersectionality, subjectivity, care, agency, and belonging to demonstrate the multi-layered potential of the theory. The key theoretical underpinnings of these debates contribute to what I define as reproductive citizenship, a framework that informs my understanding of the lived experiences of mothers with disabilities in
Russia.
Chapter III discusses the methodological approaches of my research. It sets out the contextual environment of conducting research in cross-cultural contexts and reflects on the ethical questions involved in recruitment, data collection, translation and the researcher’s
12 positionality and reflexivity. It also explains the underlying principles of feminist disability research and its commitment to honoring experiential knowledge without discounting a larger context. Garland-Thomson (2005) summarized the goals of feminist disability studies:
Feminist disability studies wants to unsettle tired stereotypes about people with disabilities. It seeks to challenge our dominant assumptions about living with a disability. It situates the disability experience in the context of rights and exclusions. It aspires to retrieve dismissed voices and misrepresented experiences. It helps us understand the intricate relation between bodies and selves. It illuminates the social processes of identity formation. It aims to denaturalize disability. In short, feminist disability studies reimagines disability (p. 1557). Chapter IV demonstrates how the subjectivities of mothers with disabilities are enacted to reproduce and challenge the essential views of motherhood at the same time. A multiplicity of subject positions along motherhood–disability continuum suggests that despite a seemingly essentialized construction of motherhood, one’s self is never absolute and is always renegotiated based on relationality to people (i.e., family members) and structures (i.e., physical and attitudinal barriers). Disability thus enacted occupies a space between outright disassociation or rejection and embrace of its motivational potential.
Chapter V analyzes the support system as a multi-tiered practice entangled with the emotional life of a family. The complexity of separating support and care from what is thought to be family responsibility is evident in the role of maternal grandmothers whose support is critical, yet oftentimes invisible. The chapter engages with the concept of kinship to foreground the different meanings that support can have, including peer support and governmental or state support.
Finally, Chapter VI seeks to understand how mothers with disabilities create spaces for belonging in environments that remain unwelcoming to them. In order to do so, this chapter analyzes the role of justifications in women’s personal accounts. It will also highlight the ways they enact agency. Such enactments by mothers with disabilities do not necessarily suggest a
13 politicized or radical nature, rather they reflect practices of what is possible within the limits of the discourse.
II. GENDER AND MOTHERHOOD IN THE CONTEXT OF CITIZENSHIP
A. Introduction
This chapter identifies the relevant contributions of the Slavic literature in my exploration of the gendered aspect of mothering with disability. It also highlights some of the disability- related research in Russia that focuses on families, children with disabilities and the notions of biological citizenship as it relates to disability. This chapter identifies gaps that my research aims to bridge by merging the research on gender and disability in Russia. In addition, this chapter sets a context of this research by introducing the ideas of gendered citizenship and its connection to the project of nation-building that serves as a starting point for my own interest in what it means to be a mother with disability in a pronatalist Russia.
I start this chapter by providing an overview of the gendered nature of citizenship that constructs membership within a community along the continuum of inclusion-exclusion.
Motherhood as a status and a practice is deeply embedded in the discussion of what it means to be a citizen, especially as it relates to the nation and nation-building. The chapter continues to examine discourses around gender and motherhood in in the last decades of the Soviet Union and in the 1990-2000s in Russia and discusses the major areas of the current empirical research. In other words, I explain the cultural and sociopolitical foundations for understanding experiences of mothers with disabilities by drawing a connection between nationalism, gender, disability, and citizenship. The overarching goal of this chapter is to underscore that the categories
‘motherhood’ and ‘disability’ are not private but socially and politically mediated conditions. By demonstrating how these categories, which are assigned to individuals, are manipulated in the interests of larger state projects, especially as they concern matters of reproduction, I argue that the experiences of mothers with physical disabilities cannot be separated from the context of
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15 gendered citizenship. After pointing to the invisibility of motherhood in Russia within disability discourses, I argue that the concept of lived citizenship must be extended to include a discussion of the role of gendering practices and disability.
B. Gendered Сitizenship
Richardson and Turner (2001) argue that the relationship between reproduction and nation-building, i.e., the questions around who has a right to reproduce, how it is valued and how crucial it is for the nation-building is a fundamental component of the rise of modern citizenship that in addition to employment helps secure the access to certain rights through population growth within heterosexual household. The connection between citizenship and reproduction require an examination of gender relations in Russia as they are currently configured.
Following Verdery (1996), the “nation” is a construct that mediates the relationship between states and subjects. As such, “nationalism” is a discourse that connects the subjects and the bodies to the nation-state through a set off meanings and values. Gender, as a construct, mediates the relations between the state and the bodies of its subjects in a way that structures access to citizenship differently based on gender. Yuval-Davis (1997) suggests that nationalism is gendered because its meaning is already constructed along a public-private divide, metaphorical representations of nation through the tropes of femininity and family and devaluation of certain bodyminds (Price, 2011). Thus, nationalist projects are often built around gender relations. The nation, as Yuval-Davis argues, is often viewed as an extension of family and kinship relations.
National projects serve the purpose of justifying the creation of a new social order by providing a noble national goal (Gapova, 2016). Biological reproduction (Yuval-Davis, 1996) that is steeped in the discourses around natural mission of women, eugenics and health of the
16 nation is one such national project. Often constructed as a strategy for overcoming a national disaster, a national emphasis on increasing the biological reproduction of a state’s population serves as a direct response to negative narratives of population depletion (Yuval-Davis, 1997).
Beneath the argument that, faced with a low population reproduction rate, Russia needs to be saved from extinction or its women need to be saved from the morally degrading influence of the
West, lies an underlying motivation of returning to the order that existed during the Soviet times which, ultimately, requires the reallocation of state resources (Gapova, 2016). Gapova (2002) views nationalism as not only a phenomenon that is gendered but also classed in the sense that the emergence of a new middle, bourgeois, and business class after the collapse of the Soviet
Union is tied to certain gender arrangements and ideas of appropriate masculinity and femininity, in which the latter category is constructed through reproduction, sexualization, and objectification of female bodies, displacement of women from public life, and relocation of childcare back into “women’s hands”.
Albanese (2006), however, suggests that nationalism is a way to delineate the nation into a family. Through nationalism, groups that were traditionally fragmented come to see themselves as united. Nationalism has a direct impact on the place of women and families in societies by shaping the relationship between polity and culture. There are multiple theories of nationalism, which agree that nationalism brings together otherwise heterogeneous groups, erases existing divisions within a society and unites a group against an ethnic other. The image of a “family” and the idea of coming back to it is part of nationalism’s promise of a return to an imagined lost community.
Because sexuality, reproduction, and child-rearing acquire such strategic importance with the rise of nationalism, controlling women becomes a way of protecting or controlling the nation.
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Women participate in national and state practices in different ways: from participating as biological reproducers of the population, as transmitters of national culture, to participating in national and civil struggles (Anthias & Yuval-Davis, 1989). Unlike the latter, reproduction encapsulates a central concern for the nation about health and strength, as well as ethnic and racial composition (Roseneil, 2013). The regulation of reproduction by the state revolves around who can reproduce, who has the intimate citizenship, “a concept which sets about analyzing a plurality of public discourses and stories about how to live the personal life in a late modern world where we are confronted by an escalating series of choices and difficulties around intimacies” (Plummer, 2001, p. 238) to claim national belonging. The next section discusses maternal citizenship and its potential for challenging difference-based claims for citizenship as well as its weaknesses as an activist-driven phenomenon.
C. Maternal Citizenship
Motherhood is often argued to be grounds for claiming citizenship. One of the dominant approaches to viewing motherhood in citizenship theory is through the lens of civic republicanism that sees motherhood as a form of public good and a way to participate as a citizen in the public sphere (Lister, 2003). Instead of maintaining and consolidating women’s marginalization by limiting options for civic engagement to motherhood, a feminist citizenship approach drew on traditional female identities but took them outside the private domain and promoted a transcendent worldview through women’s causes (i.e., anti-militarist, environmental movements). Ruddick (1989) developed a concept of maternal thinking to refer to the qualities that women have as mothers, which allow them to claim political citizenship. The most common manifestation of such thinking is through activism that focuses on improving communities while defying the definition of motherhood as something that is confined to the private sphere. Political
18 motherhood introduces new human qualities into the public sphere and thus shifts public/private demarcation (Reiger, 2000; Werbner, 1999). Lister (2003) points to the danger of marginalizing women within existing sexual division of labor. The emphasis on the activist aspect of citizenship is a defining characteristic of this claim for citizenship. One of the prominent manifestations of maternal activism in post-Soviet Russia has been the soldiers’ mothers movement. It unites mothers who express concern about the situation in the Russian army that is based on the mandatory conscription and about their sons in the army (Lonkila, 2008). Mothers’ claims are based on both reference to human rights and the affirmation of their right and duty as a mother to protect her child (Lebedev, 2012). The configuration of gendered citizenship creates conditions for mothers to make claims for citizenship in a variety of ways. In the context of post-
Soviet spaces, such active citizenship in the arena of civil society provided spaces for a process of subject formation (Regulska Lukić & Zaviršek, 2006). Claims based on motherhood become a strategic articulation of women’s concerns that rely on the legitimacy, respect, and even veneration associated with the figure of the mother within Russian culture. Such claims are built around negotiating access to the public domain by relying on values associated with the private domain, an approach that automatically excludes women who live at the intersection of gender, race, ethnicity, class, and disability. Not only are these women denied access to motherhood (i.e., history of forced sterilization of women with disabilities) in the first place but, if they then do become mothers, their legitimacy as mothers might be questioned. Maternal citizenship brings to the forefront macro level discussions of citizenship without engaging with less prominent, yet still very illuminating, experiences of motherhood, especially in its intersectional context.
How does human agency manifest in the context of the everyday? The experiences of mothers with disabilities shed light on these less visible aspects of citizenship, which are still
19 rarely explored. The next section provides an overview of the existing literature on motherhood with disability and its potential to rethink what motherhood means.
D. Motherhood and Disability
Although research on mothers with disabilities is intersectional in nature, it will continue to fall short of its emancipatory potential if researchers continue to decontextualize the experiences underlying this intersectionality. I engage more deeply with the growing literature on the experiences of mothers with disabilities (Grue & Lærum, 2002; Malacrida, 2009; Parish,
Magaña & Cassiman, 2008; Prilleltensky, 2003; Thomas, 1997; Walsh-Gallagher, Sinclair, &
McConkey, 2012) in my empirical chapters. For now, the most important conclusions to draw from these scholars is that the disablist environments mothers with disabilities encounter result in limited access to reproductive rights and services, pressure to perform ideal motherhood, and intensified scrutiny by state welfare services, accompanied by a heightened risk of surveillance.
Parish et al. (2008) analyze the experiences of mothers with disabilities from low socioeconomic status and draw attention to the multi-layered nature of the challenges, exacerbated by neoliberal policies of austerity that they face. A handful of studies on the experiences of mothers with disabilities in the post-Soviet region (Wołowicz-Ruszkowska, 2016; Zaviršek, 2006) further emphasize the importance of contextualization, whether it means including discussion of the long history of institutionalization of people with disabilities in the region (Zaviršek, 2006) as a backdrop for understanding violence and sterilization in relation to motherhood in Russia, or examining differences between Russian and Polish cultures (Wołowicz-Ruszkowska, 2016) as a lens for grounding interpretations of motherhood narratives. My research builds on existing scholarship to bring forward the post-socialist space as a site that is still largely missing in both feminist and disability studies fields.
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E. Exclusion of Disability in Citizenship Debates
The idea of lived citizenship encompasses a range of everyday activities through which people claim political and social belonging when the state denies it. It opens a potential for navigating the modes of being that reflect creativity and ingenuity that might not be available within the framework of liberal citizenship of rights and responsibilities. Mothers with disabilities provide material through which to open the idea of maternalism and citizenship to critical scrutiny. They provide for a way to recognize a more just conceptualization of national belonging. If citizenship reflects the links between an individual and the state, how might someone who is not part of these links provoke new ways of thinking about belonging? Women with disabilities who are also mothers force us to rethink the parameters of exclusion and inclusion when they demonstrate that being excluded from society by one dominant discourse does not prevent being embedded in society by another one.
The exclusion of disability in discussions of citizenship is symptomatic of the rigidity of the framework for analyzing the dynamics of nationalism. Once the gendered nature of nationalism is acknowledged, we also need to question its ableist undertones since hierarchies of gender are imbued with assumptions that what is considered a man or woman is by definition able-bodied. One of the somber reminders of the use of disability as a foil in much twentieth century nationalist rhetoric is the history of eugenics. Baynton (2016) provides a powerful account of how governments, working toward nationalist projects, used eugenics to curtail the reproduction of ‘undesirable citizens’ through institutionalization, sterilization, marriage laws, public education campaigns, as well as the restriction of immigration, while encouraging the production of ‘worthy citizens’. Although Baynton’s work focuses on eugenic history in the
USA, Hartblay (2014) reminds us that the domination of ableist agendas is not only a condition
21 of capitalism but, of modernity in general because it glorifies productive labor. Accordingly, this was also the case in the Soviet Union, where physical labor is valorized and disabled are rendered dependent. Phillips (2009) tracks the history of institutionalization of the disabled in imperial Russia, the Soviet Union, and the new Russia and describes the prevalence of specialized residence institutions called doma-internaty or “home-internaty”. Similarly, in the few accounts of how the question of reproduction of women with disabilities has been dealt with, it becomes clear that historical justifications for limiting women’s reproductive function were not very different from eugenic ones used in the West. In his analysis of institutions for the disabled
(invalidnyi dom) in the 1930s, Kovalev (2013) discusses how eugenicist concerns about
“unhealthy offspring” were used to force the termination of pregnancies among women with disabilities who lived in these institutions.
People with disabilities historically have experienced exclusion from citizenship status and belonging to the nation, based on the imagined threat they present to the gene pool.
Meekosha and Dowse (1997) argue that gender, disability, and the denial of citizenship rights come together most starkly around sexuality, reproductive, and marriage rights. People with disabilities are viewed as a disruptive force in the construction of the race and nation. In addition, women with disabilities cannot represent the nation because they do not embody “perfect” women. Gender norms are enacted through bodies, making it easy to imagine constructing the
“wrong” kind of nation if using the “wrong bodies” (McQueen, 2014). Meekosha and Dowse argue that a gendered politics of nationalism sees women with disabilities as enemies of the nation who represent potential breeders of inferiority. Thus, the state, in policing the boundaries of citizenship and the nation, also polices the sexual freedom of women with disabilities
(Meekosha & Dowse, 1997).
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Compared to women with physical disabilities, women with psychosocial disabilities2 who are at a higher risk of sterilization and surveillance of their sexuality in Russia. According to the 2016 investigative report by Kommersant newspaper (Allenova & Tsvetkova, 2016), people with mental disabilities are often institutionalized and have their legal capacity, which is defined by the Russian Constitution as the status that a Russian citizen reaches at the age of 18 when he/she is able to execute his or her own rights and responsibilities, withdrawn. The lack of legal capacity is then used as grounds for controlling an individual’s sexuality, either by forcibly terminating pregnancies (often performing sterilization) or by taking away the children after their births. People with psychosocial disabilities are consistently denied the right to raise their own children. The government places these children in the orphanages instead of providing people with psychosocial disabilities with the support they might need to raise children independently.
Institutions become the official guardians of an individual with psychosocial disabilities and her offspring. Challenges to these legal mechanisms are often the only way to reinstate the rights of people with psychosocial disabilities. With the help of the advocacy organizations, people appeal to the European Human Rights Court (Pushkarskaya, 2016) to get their parental rights denied under the Russian Family Code back. Despite violating the ratified UN Convention on the Rights of Persons with Disabilities (2006), the article 73 of the Russian Family Code (Konsultant Plus,
2017) that makes psychosocial disability or other chronic conditions grounds for denying parenting rights is still in full force.
F. Gender and Motherhood in the Soviet Context
The notion of nationhood in Russia has historically been associated with the gendered tropes of masculine-feminine duality. In fact, the masculinity of the state’s organizational
2 Term coined by Margaret Price.
23 structure and sovereignty is contrasted to the feminine nation steeped in symbolic constructs, practices and traditions (Goscilo & Lanoux, 2006).
Soon after the 1917 revolution that eventually gave rise to the USSR, women were perceived to differ little from men. The Family Code of 1918 introduced the civil registration of marriages and legalized divorces. The focus on equality, rather than difference, intended to draw women into labor. It was during this time that the certain protections for pregnant women were introduced. These measures include paid maternity leave and socialized child care. In theory, women in the Soviet Union enjoyed full equality with men, but in practice they bore a double burden of paid employment and domestic work. Women were expected to be economically productive and leave the bulk of the work around childcare to the state (Albanese, 2006). The
Soviet Union is an example of public and private domains, which I discuss later in relation to citizenship theory, being combined.
G. Gender Discourse in post-Soviet Russia
In theory, the Constitution of the Russian Federation of 1993 proclaimed equality between men and women, however in practice there has been a sharp rise of worsening socioeconomic situation for both sexes. The political and economic changes that came with perestroika were accompanied by a “celebration of masculinity” and the “denigration of the strong capable woman worker,” who had been, “glorified in the first decades of Soviet history”
(Attwood, 1996, p. 255). The goal of restoring Russian nationalism was seen to require the restoration of the maternal role of women, which was encouraged by measures aimed at the “re- feminization” and “domestication” of women (Attwood, 1996). These processes cannot be separated from the new market system (Marsh, 2013), which made these changes possible but, they were also very much shaped by a changing gender order.
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Equality during the Soviet era was perceived as the reason for the burdens felt post- perestroika. Divorce, lone parenthood, under- and unemployment were characteristic of that time and it was this reality that created the perception of an existing threat to the biological survival of
Russia. Russian politicians sincerely believed that the re-domestication of women was a precondition for the liberal democratic government in Russia that would save them because it was the opposite of the previous approach, which had been deemed harmful to the state and society. Legislative initiatives at the time attempted to provide a solution to both demographic and economic problems of the nation by redefining women primarily as mothers. Both radical and conservative politicians viewed women in essentialist ways and legislative discussions framed women mostly as mothers, while fathers were defined as breadwinners, i.e., workers.
Women were told that the democratization and economic revitalization of Russia was a man’s job. The fact that many men were unemployed made it easier to justify rampant job discrimination of women. It was thought that driving women out of the labor force would ease the economic crisis, provide jobs for men, and ultimately save the nation. In fact, the new
Russian vision of returning women home was unrealistic and unattainable. The Russian economic crisis weighed heavily on women and they continued to struggle to feed their families and make ends meet. Ultimately, however, women’s roles were defined and redefined, and continue to be molded and idealized for the sake of the nation (Albanese, 2006).
In the early 2000s, gender played a key role in the call for a more paternalist state to take control over a society that was thought to be lacking in direction and ideology. The development of a pronatalist discourse was shaped by the rise of an etacratic (i.e., state-centred) gender order that sees the state as the main agent shaping and monitoring gender relations. The shift towards pronatalist discourses has had a significant influence over the gender order in Russia. Indeed,
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Kay (2000) sees this shift as logical in the context of Soviet approaches to motherhood and some researchers describe Russia’s move toward authoritarianism over the past decade as a “gender regime change” (Johnson & Saarinen, 2013). Sperling (2014) associates the pronatalist agenda with larger discourses around patriotism and its revival. She argues that support for military service and pronatalism reflect two sides of the same coin. The former signals hypermasculinization of society, whereas the latter – its heteronormativity and femininity.
Chernova (2012), meanwhile, analyzes the change of the position of the state in relation to the family common for this period and describes how the state gave families more independence and stopped filling the role of the patriarch, expecting that the man of the family would take over traditional male responsibilities. According to Rotkirch, “in a society with a changing gender landscape, with increasing uneasiness over gender relations, gender conventionalism stood for a search after unquestioned, solid ground” (as quoted in in Pietilä & Rythonen, 2008, pp. 1081-
1082).
Broader trends in the community also contributed to the potency of the patriarchal model.
According to Rivkin-Fish (2010), by making an explicit connection between the problems facing women and the broader problems facing Russian society, the new gender order, epitomized by the maternity capital program, appeared to signal shifting symbolic and material relationships between women and families on the one hand, and the state on the other. The state’s demographic crisis necessitated the improvement of women’s role as mothers. The new
“maternity capital” entitlement for mothers who give birth to a second or third child went into effect on January 1, 2007. It provides mothers with a payment of $10,000 (at the time, 250,000 rubles), adjusted to inflation, when the child turns three years old. Importantly, the money is not given in cash, but in a voucher to be used for any of three purposes – improvement of housing
26 conditions, the mother’s pension savings, or the child’s education. Putin also significantly raised monthly allowances for family members who are caretakers of their children. The significance of this law is not based on its institutional characteristics in the context of the welfare state but rather on the discursive knowledge it generates to make sense of gendered subjects, symbolic boundaries of citizen rights and responsibilities, and culturally legible forms and reach of state power it legitimizes.
In his address to the Federal Assembly in 2006 (Rossiyskaya Gazeta, 2006), Putin mapped out the priorities of the government and emphasized the demographic policy. Low fertility was defined as a key problem for the country and a matter of survival. Policies for increased child benefits and the so-called maternal capital encouraged women to give birth to more than one child. Along with other policies that were introduced, cultural discourses were starting to change as well. The Committee on social policy established a new holiday – the Day of Family, Love and Faithfulness. Initiators of the holiday invoked images from ancient Slavic chronicles that recorded the lives of recognized saints, Peter and Fevroniya, who were a romantic couple. The creation of the holiday aligned with an overall strategy of promoting “healthy moral values” (Chandler, 2013) that were associated with heteronormative marriage, children, and the traditional distribution of gender roles. Similar to the discourse underlying the creation of the holiday, the program “The Sanctity of Motherhood” was developed by the fund that promotes religious and moral values as the foundation of the Russian nationhood. The All-Russian Forum on the sanctity of motherhood held in 2014 brought together the public and the spiritual leaders to discuss the restoration of the spiritual and moral potential of the Russian families (Center of
National Pride, 2014). The speakers at the Forum raised concerns about the institute of family being in crisis. They also juxtaposed the philosophy of materialism propagated by the West to
27 the philosophy of spirit embedded in the Slavic culture and suggested that the notions of family needed to be restored.
The policies and the cultural discourses embedded in the policies signified changes in other areas of reproduction. Turbine (2015) argues that the shift of focus to maternity care happened at the expense of programs that facilitate women’s reproductive choice and bodily autonomy. The shift to pronatalism is also seen as a shift from individualism and neoliberalism to a patriotic ideal of motherhood and state (Chandler, 2013). It is this idea of restoring the nation that the president referred to in his speech that requires a closer examination of the connection between motherhood and the discourses that promote it and the politics of nation- building.
The context that constructs womanhood through motherhood raises questions about the ways the feminist approaches and “rhetorical possibilities” could be introduced. Rivkin-Fish
(2013) discusses the debates around surrogacy and reproductive rights that face hostility in the environment that praises “traditional values”. Along with the argument that a feminist value of choice needs to be put into context, a different intervention can be suggested. Women with disabilities live in the space of in-between where their status as disabled people is continuously devalued and their sexuality is questioned, whereas motherhood becomes a desired positionality.
Such dichotomy does not suggest that these two statuses can be easily separated but that we need to pay a closer attention at how intersectionalities provide a deeper understanding of the phenomenon and how invisibility of disability creates potential for creative approaches to analyzing motherhood that push against the dominant narratives.
Along with research that focuses on the larger context of demographic discourses in
Russia, researchers foreground the role of autonomy and agency in making decisions about
28 becoming a mother. Issoupova (2000) argues that a sense of self-fulfilment is as important in the decision-making process as circumstantial factors are. In the environment where “social structures can thwart autonomy” (Meyers, 2001, p. 755), women express ambivalence towards motherhood and support shared parenting (Kay, 2000). Neoliberal ideas of responsibility and the governmentality of motherhood practices adds another layer to pronatalist discourses. By focusing on mothering practices of middle-class women, Shpakovskaya (2015) argues that competence, expert knowledge, personal responsibility, consumption become the attributes of the modern motherhood. The question then becomes how class and privilege constitute and are constitutive of the pronatalist discourses. In her discussion of whether individual autonomy can be recognized amid the “the rush to motherhood”, Meyers (2001) says that “disentangling one’s own desires and values from internalized social ideology seems vital, yet any boundary demarcated between them seems artificial” (p. 752). In other words, we cannot analyze one without the other because they are closely intertwined. However, she agrees that the impact of pronatalist discourses on one’s autonomy is tangible – it obfuscates women’s motivations concerning motherhood and trivializes or mutes reluctance or resistance.
H. Families and Disability in Russia
It is this history that determines the configuration of the research on families and care.
Research on families, parenting and reproduction in Russia in the context of disability is still very limited. Families represent a microcosm of exclusionary practices that remained invisible due to the prevalence of institutionalization and an overall medicalized approach to disability.
Iarskaia-Smirnova was one of the first Russian researchers who focused on disability as a social construct and engaged with the Western frameworks without discounting the local context. In her analysis of lived experiences of women with disabilities, Iarskaia-Smirnova (2011) demonstrates
29 how the forces of exclusion operate on a micro-level, the level of families. She concludes that families can both provide a potential for social mobility and reproduce the social inequality that people with disabilities experiences outside the families.
The main focus of disability related research in Russia in the 1990s and early 2000s was on children with disabilities. The grim statistics presented in the international reports (UNICEF,
2005) necessitated a closer look to the lived experiences of people with disabilities and families that have people with disabilities. The focus on children with disabilities was driven by the impact of transition in Russia on the increase of children with disabilities, the prevalence of institutions and the impact of poverty on families that have children with disabilities (UNICEF,
2005). In her research on mothering children with disabilities, Iarskaia-Smirnova (1999) explores how defined gendered stereotypes (as in many other places, the caring responsibilities are associated with women), insufficient services, and discriminatory attitudes toward children with disabilities reflect entrenched exclusionary policies that affect these families. Helping families to rear a child who is disabled is a new idea for post-Soviet history, however, the prejudices persist and the parents’ efforts are not well supported. The shift from the macro analysis of the institutional practices to the examination of the lived experiences signals a multi-layered approach that recognizes individuals’ agency in the face of structural injustices and marginalization. Kaplan (2010) examines coping and support of mothers of children with disabilities through their stories that reflect defiance in the face of daily challenges that revolve around a lack of social support, limited financial resources, and a lack of comprehensive approach to their children’s health. Oates’ (2013) research into the online activism of parents of children with disabilities demonstrates how the issues around disabilities become politicized through parents’ attempt to demand the treatment for their children with genetic disabilities.
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Families are often the prism through which the issue of rights is analyzed. Oates suggests that
Russians appear to be more willing and able to discuss their relationship to power structures in the context of families.
The focus on the family and kinship gives a glimpse into the unstable nature of social support and welfare. Even during the Soviet times that were characterized by the dominance of the state in providing the services, the role of kinship, ethnic, and religious communities, patronage networks played a significant role in individual social security arrangements. The role of personal networks has grown even more in the period after the collapse of the Soviet Union
(Read & Thelen, 2007). Through a closer analysis of the micro-level, the contested nature of the public-private divide is revealed. This contestation avoids a one-dimensional view of the state as a singular entity with clearly defined boundaries and acknowledges the dynamic reconfigurations of spaces, institutions, and subjectivities.
Two strong factors that have a significant impact on the conceptualization of care in
Russia are family relations and state support. Because families play a substantial role in provision of care, the structure of relations vary from the patterns of domination to the various forms of resistance (Iarskaia-Smirnova, 1999). In other words, families are the main caregivers but they are mostly left without additional support. The state’s approach to helping is applied based on the arbitrary definition of what constitutes adequate fulfillment of parental duties and unfavorable families and conditions. Such approach does not make it possible to extend the definition of help beyond taking a child away and subjecting parent(s) who tend to belong to lower socioeconomic status to having to prove their worth as parents in court (Khlinovskaya-
Rockhill, 2010). The scholarship around care practices in the post-Socialist space encompasses a nuanced discussion of the meaning of kinship that transcend the biological family ties and
31 embraces informal networks. Caldwell (2004) interrogates the role of soup kitchens in a new
Russia. She argues that even though the conditions of material poverty that make their existence necessary are problematic within the aims of democratization and capitalization, the program is a safe haven from these processes, where recipients respond to the threats of individualization, isolation, social fragmentation by establishing a vital community where members help each other. Similarly, Kay (2013) uncoupled kinship from biological relatedness by exploring the emotional work of homecare workers with the elderly clients in rural Russia. Just like it requires a rethinking of kinship to broaden the understanding of support and care, we also need to rethink what mothering means. Mothering with a disability is a set of practices that also go beyond the narrow familial definitions of kinship. A disabled mother’s need for assistance does not preclude her from carrying out the caring role (Mintz, 2007). In fact, this mother’s caring role involves not only informal networks of people for support, but also the physical and social structures that can foster a much more fluid process of care. A lack of support from medical professionals, continuing stigma, and the barriers of existing and moving around the spaces create barriers to care. The failure to recognize care is also exacerbated by the discursive limits that narrowly define family, kinship, and care, as it is the case with the heteronormative and disablist pronatalist policies.
I. Invisibility of Disability Discourses around Motherhood
There is no monolithic understanding of disability in Russia. Even in identifying women with physical disabilities as a target group of my study, I recognize there is no one unifying experience that defines the lives of these women. All the experiences are contingent, fluid and relational and should be placed in the broader context of historical, economic, and social realities of a place and a life within that place. Yet, considering the relatively recent interest in disability
32 issues in this region, a general overview of the major discourses is needed to develop a larger canvass that brings together the individual stories. Although the lives of the women I interviewed bear traces of broader processes and shifts, the relationship is in no way direct or determinative.
Singular stories need to be placed in productive tension with the larger narratives (Raikhel,
2016).
The experiences of women with disabilities in the Soviet Union were invisible, however, the dominant discourses around gender and labor imply why that might have been the case. The state played a significant role in forming the prescriptive norms for women and men within the new Soviet family and polity. Motherhood and work were two major areas in the time of the building of the Soviet state. The redefinition of motherhood was built around the idea that the privacy of the family would be dismantled by passing on some of the private functions to the public sphere (Ashwin, 2000). The state sought to forge an alliance with mothers by defining motherhood as a noble and rewarded service to the state. In addition to that, women were integrated into the labor force to flee the dependence within families to find themselves dependent on the state. The gendered nature of the caring responsibilities never dissipated, and women were still responsible for the domestic duties. Labor was strongly associated with productivity. In fact, productive capacity was equated with a moral worth for all Soviet citizens
(Hartblay, 2014). Such valorization of productivity as a responsibility to the state created what the state saw as the opposite of the productive Soviet laborers – people with non-productive bodies, including, arguably, people with disabilities. Within such configuration mothers with disabilities could not have fit the model of mother-worker.
The beginning of the post-Soviet era was marked by the redefinition of motherhood as a private institution and responsibility. Work and motherhood are no longer defined as duties to
33 the state; the traditional family has been rehabilitated, and the state no longer monopolizes the patriarchal role. Yet, mothers with disabilities were still absent in the discourses of decoupling motherhood experiences from the government.
Despite the pronatalist character of family policy oriented towards heteronormative and
“traditional” families, everyday life does not always reflect the support associated with pronatalism. Parents face significant physical barriers around them - absence of ramps for children’s carriages, lack of elevators in the metro and other public transportation, and the need for swaddling tables in the restrooms and public places. Hartblay (2017) discusses the so-called inaccessible accessibility when building codes serves as centralized attempts to standardize across time and space, and through chains of command resulting, ultimately, in lack of accessibility. All of these barriers are a reminder of the issues that people with disabilities in
Russia face but there is rarely a discussion of potential intersections and collective modes of resistance. Yet, recent years have seen a rise in the number of organizations initiated by people with disabilities. Most of them seek to increase awareness about disability. One of such organizations is Katyusha which advocates for the rights of parents with disabilities. In spite of the prevalence of the pronatalist discourses in 2000s, policies that support motherhood co-exist with policies that categorize a family with three or more children as “unfortunate families”. The definition of the latter is quite arbitrary and was shaped in the process of the social service provision (Iarskaia-Smirnova & Romanov, 2012). In fact, families from low-income groups that need state support more than middle-class families do often have fewer actual opportunities to use maternal capital (Borozdina, Rotkirch, Temkina, & Zdravomyslova, 2016). For example, if a family does not have enough money for the down payment as part of the mortgage, the maternal capital is useless. It is the discord between the government’s pronatalist ideology of motherhood
34 that evokes the old Soviet gender contract, in which the woman is seen as the main provider of child care as well as a passive object of paternalistic state support, and the inadequacy of the program that makes it financially challenging to be viable in the sole breadwinner family (Ibid).
Although the actual experiences of disability might be absent from the dominant narratives, disability is often used as a metaphor (Couser, 2009; Mitchell & Snyder, 2000) to characterize practices that do not embrace motherhood as a woman’s main mission in life as abnormal. For example, official discourses enact aggressive politics towards alternative approaches to women’s subjectivities. Some women in Russia started openly claiming their
“childfree” stance, an idea that motherhood is not a destiny of every woman and that any reproductive decisions concerning a woman’s body is her choice. The attacks of the pronatalist supporters are filled with disability-related metaphors. In response to one of the participants of the online discussion forums explaining their reasons for not wanting to have children, the respondent referred to all people identifying as childfree as freaks. One of the deputies of the
State Duma requested the Ministry of Health to recognize childfree as a mental disability
(Avetisyan, 2015). In the environment of the dominance of one discourse, anything that might potentially threaten its strength (even if the family and/or motherhood are not challenged per se) is perceived as dangerous, disabling, freakish, and abnormal.
All these examples create a disconnect between what is prescribed and whether daily experiences reflect these prescriptions. The framework of citizenship provides a focal point for exploring this disconnect. The framework of citizenship provides a lens for understanding broader ideas about personhood and difference. Citizenship avoids the pitfall of applying
Western theories to the non-Western contexts uncritically. Rather, citizenship elucidates what it means to exist within shifting subjectivities, destabilized care structures and discursive
35 prescriptions. For example, understanding disability as a lived experience requires contextualization of this experience. By centering or de-centering one’s “loss of health” or
“extent of bodily defects” to claim official status as a citizen and assert one’s rights to requisite benefits and entitlements; and variously playing up or playing down invalidnost’ as a more or less central aspect of personal and social identity – are indicative of the creative strategies being used by people on the margins to assert claims to full citizenship (mobile citizenship) (Phillips,
2011). When analyzing how scientific knowledge and Chernobyl-related suffering were tooled to access social equity in a harsh market transition, Petryna (2003) points out that where suffering becomes a bureaucratized admission ticket to the “entitlement” of life itself, the disabled subject becomes a form of common sense and is enacted by people to gain protection in the form of biological citizenship.
J. Conclusion
This chapter outlines the embedded nature of gender in the configuration of citizenship on the level of the nation-state. It provided an analytical overview of the ways the normative citizenship is constructed on a macro-level of the nation-state. By controlling certain types of bodies, citizenship and nationalism operate as a driving force behind the regimes of inclusion and exclusion based on a gender and other identity categories. The chapter discusses what role motherhood plays in organizing lives.
As a way to identify the narrow definition of citizenship embedded within nationalist discourses of motherhood, the chapter provides an overview of the scholarship on motherhood and disability that challenges the dominant narratives and provides alternative claims to citizenship based on difference and reconceptualization of the category “woman”.
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The chapter moves on to discuss the growing attention to disability as a ground for denial of citizenship. More specifically, it focuses on the perceived threat of women with disabilities to the gene pool of the nations that is regulated through surveillance over their sexuality and reproductive rights.
The second half of the chapter maps out a historical and sociopolitical context of Russia and its construction of gender politics over the decades. It is through the overview of the current literature on the ways narratives about motherhood and disability are constructed, I emphasize the invisibility of the intersectional experiences and their potential to challenge the paternalist view of motherhood and families, on the one hand, and the pathological attitudes to disability, on the other. I demonstrate that Russia’s current gender regime reflects a historical trajectory that explains the discourses of pronatalism. Disability can introduce a nuanced understanding of motherhood, however, most of the research on disability in Russia positions it within the context that rarely foregrounds the complex subjectivities of people with disabilities within families and other social locations.
The next chapter will delineate the framework of citizenship, analyze its components that inform the understanding of lived experiences of mothers with disabilities in Russia and argue why and how the lens of reproductive citizenship can address the questions raised in this dissertation.
III. CONCEPTUAL FRAMEWORK
A. Introduction
In this chapter, I develop the conceptual framework necessary for this project of exploring the lived experiences of mothers with disabilities. The framework of reproductive citizenship provides a theoretical understanding of these experiences and allows me to analyze them critically. The transformation of the citizenship theory and its openness to change makes it less prescriptive in its application. More specifically, the concept of lived citizenship (Lister,
2007) explicitly invites the analysis of individual experiences to inform theoretical debates.
Citizenship theory, in recent years, has evolved thanks to the critical work of feminist and interdisciplinary scholars who have pushed beyond traditional conceptualizations of citizenship that were quite narrow (Das & Addlakha, 2001; Fleischmann & van Styvendale, 2011; Kershaw,
2010). In the first section of the chapter, I outline debates around citizenship, identifying their strengths and weaknesses, and provide a critical overview of major developments in citizenship theory as it has grown in recent years in both depth and breadth. I trace the contributions of feminist scholars in advancing the theory and identify the weaknesses that are being addressed by contemporary scholars of citizenship studies.
One of the tools that can be used for developing and applying the framework that serves as both conceptual and methodological way of approaching the topic is intersectionality. The key theoretical underpinnings of these debates contribute to what I define as reproductive citizenship and inform my understanding of the lived experiences of mothers with disabilities in Russia. The most significant domains of citizenship which inform the framework of reproductive citizenship and provide a lens to analyze the experiences of mothers with disabilities in Russia are: care and
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39 citizenship, subjectivity and citizenship, belonging, each of which I examine in detail in their respective sections before developing the framework for reproductive citizenship. Throughout the chapter, I blend the discursive and the experiential to argue that the framework of reproductive citizenship has much to offer to our understanding of the experiences of mothers with disabilities. My goal is to demonstrate the multi-layered potential of the theory to inform the meanings around mothering with disability.
B. Citizenship Debates: Shifting in Depth and in Breadth
The growth of citizenship studies in recent years has opened many discussions of the very definition of citizenship. Citizenship is a contested concept (Fleischamann & van Styvendale,
2011). Thus, the focus of my critical overview of the major discussions within the field aim not at developing a universal definition of citizenship but at understanding the domains of citizenship such as its substance (what we refer to when we talk about citizenship), citizenship subjects (what and/or who the focus of citizenship is), and location (where citizenship exists in geospatial terms) (Bosniak, 2006).
Citizenship is seen as comprising three elements: membership, rights and duties, and conditions necessary for practice. The major theories of citizenship developed in the
Enlightenment period informed the relationship between the individuals and the state.
• Classical liberalism has emphasized the rights of the individual and the freedom of the
individual citizen from the constraints of the state where the ideal citizen is the
autonomous citizen (Siim, 2000). Independence in the liberal tradition is understood in
terms of individual rights enabling us to make choices in the free market and pursue our
own interests.
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• Civic republicanism has focused on the need to create a political community, a common
bond between citizens. The ideal citizen participates in the public arena and is abstracted
from the individual business of the private world (Ibid). In the republican tradition,
independence is understood as something that enables us to act for the common good,
rather than out of immediate material interests.
• Social liberalism that underpins the welfare state has emphasized the need for social
rights as a precondition for political equality and democracy. T. H. Marshall introduced a
comprehensive theory based on the evolution of rights in British society from the 18th to
20th century. He differentiated between three types of rights: the civil element that
includes individual rights of freedom; the political element that includes the right to self-
determination and to participate in the exercise of political power; and the social element
that includes the tight to a guaranteed minimum of social and economic welfare
(Marshall, 1950).
The contemporary ideas of citizenship formulated by T. H. Marshall (1950) has long moved beyond the discussion of rights and responsibilities within a nation-state. Even with the expansion of citizenship to include social rights, the discussion had mostly revolved around the public realm. Irrespective of narratives – liberalism, civic republicanism, social democracy – values inscribed in them as well as the language used could be manipulated to define someone as worthy or unworthy of bearing rights and/or responsibilities (Carey, 2009). For example, the emphasis on rational and autonomous human beings who enter a social contract embedded in liberal philosophy, leaves out people with intellectual disabilities. In the same vein, civic republicanism imagines a citizen who is created and fulfilled through his or her participation suggesting that there is no a pre-formed citizen prior to a social contract. False universalism was
41 fashioned in a male image of the “public” citizen masquerading as abstract, disembodied individual.
The feminist critique of the exclusionary nature of citizenship that devalues a private domain traditionally associated with caring serves as a starting point for further rearticulations of what can count as citizenship and who can be considered a citizen. This shift that broadened citizenship theory to make it more inclusive questions its universality and pushes for pluralization of actors in citizenship debates. For example, in her analysis of statelessness in the context of Hurricane Katrina, Margaret Somers (2008) suggests that civil society is a new actor that serves as an intermediary between the state, the market, and the individual. In other words, citizenship is not confined to the relationship between an individual and a nation-state.
In addition to shifts in-breadth, there have also been shifts in depth that have begun to reckon with new spatialities of citizenship as they relate to processes of migration and transnationalism (Martin & Paasi, 2016) and lived citizenship (Lister, 2007). In other words, in- depth shifts occur at a level of analysis that transcends the nation-state or looks beneath overarching state structures to focus on the individual. Of course, these different levels never exist in a vacuum and have informed and been informed by each other.
Despite their largely successful interventions into citizenship theory, feminist citizenship scholars (Lister, 2003; Voet, 1994; Young, 1989) who criticized the gender-neutral approach of the Marshallian framework still maintained and reproduced the dualism that was embedded in it.
While they certainly recognized the disproportionate value that society placed on the political sphere and employment compared to the domestic sphere, they ultimately still upheld the traditional separation of the public sphere from the private.
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Feminist approaches that were aimed at reconciling difference and universality—from
Iris Marion Young’s (1989) differentiated citizenship based on group membership to Ruth
Lister’s (2003) politics of solidarity in difference, which was premised on the acknowledgement of a commonality of interests that went beyond identity politics—reflect a commitment to citizenship’s universalist promise (Lister, 2003) but also maintain a need to incorporate difference (Young, 1989). In cautioning against gender-differentiated citizenship (as opposed to
Young’s differentiated universalism built around the claims of marginalized groups), Lister
(1997) suggests that it has the potential to essentialize women as mothers, ignore differences between women, or trap them in the private, domestic sphere. With the increased attention to citizenship claims based on group identities, there are still some omissions in the feminist debates, specifically as it relates to disability and the way it complicates the seemingly unitary category of “woman”.
Amid the debates around the intersection of gender and citizenship, disability remains largely invisible. Citizenship theory has historically assumed “able-bodiedness” as a criterion for belonging (Hirschmann & Linker, 2015). Throughout much of the 20th century institutionalization was the main method of excluding disabled bodies in the USA (Carey, 2009).
However, in the second half of the 20th century, civil rights legislation and, more specifically, the
Americans with Disabilities Act of 1990 expanded the arena of citizenship for people with disabilities. However, the rejection of disabled bodies from familial and social bodies is ongoing
(Rapp & Ginsburg, 2001). The private sphere, or domain of the personal and familial, is important because it often is the first point of exclusion of the disabled body from larger social life, which then transitions into exclusion from public arenas (i.e., education, employment, etc.).
For example, gender, disability, and the denial of citizenship rights come together most starkly in
43 the area of sexuality, reproduction, and marriage rights. As seen in Chapter I, people with disabilities are often seen as potentially disruptive to the imagined purity of race or nations and are imagined to constitute a threat to the gene pool (Meekosha & Dowse, 1997). In other words, disability that was previously seen as irrelevant to the public discussion of rights and responsibilities, is in fact at the forefront of these debates.
The sheer scope of new issues that emerged over the last few years, from single parenthood and surrogacy to sexual rights, illuminates new aspects of social life that have not been taken into account by traditional citizenship theories. Boundaries and ideas of inclusion and exclusion inherent in citizenship theory are being reworked. The idea of lived citizenship refers to how people understand and negotiate their rights and responsibilities, belonging and participation within the nation-state (Lister, 2007) and reflects this shift in depth within citizenship theory. Lived citizenship encompasses both what is traditionally viewed as the public sphere and what is traditionally viewed as the private sphere. Plummer (2003), meanwhile, suggests citizenship theory consider the idea of intimate citizenship to acknowledge the emergence of different types of intimacy groups built around people’s sexualities and reproductive rights that became part of the public discourse further blurring the distinction between the public and the private.
In these new approaches to defining citizenship, the body becomes a political site. By locating citizenship in the body, we recognize the ideological weight pressing down on bodies marked as different (Russell, 2011) and recognize that access to citizenship hinges on whose bodies are considered legitimate or viable for participation in social life. Beasley and Bacchi
(2000) not only challenge the disembodied nature of traditional citizenship and introduce the body and its materiality as a way to challenge what citizenship means. They question the many
44 feminist discussions concerning bodies, which focus on issues of bodily integrity and autonomy.
More specifically, they reject the idea that the body is important only insofar as it is a site of struggle for control. They seek to politicize the very materiality of the body. Such recognition of the body is very important for people with disabilities. Like that of women, disabled people’s politicization has its roots in the assertion that “the personal is political,” that the source of social injustices is not located within the body but in the social, environmental, and attitudinal barriers
(Morris, 2001). The researchers contend that “placing center-stage bodies conventionally regarded as mired in biology, marginal or “lacking” enables new ways of considering citizenship and policy agendas (Beasley & Bacchi, 2000) by challenging the very assumptions of hegemonic masculinity underlying citizenship theory.
Roseneil et al. (2013) suggest that “the biological, sexual and technological realities of natality, and the social realities of the intimate intergenerational material and affective labor that is generative of citizens, and that serve to reproduce membership of, and belonging to, states, nations, societies and, thus of citizenship itself, have largely remained marginal to citizenship studies” (p. 901). The comprehensive framework I develop in this chapter is meant to fill the abovementioned gap and interrogate the various aspects of women’s lives in the context of reproduction. In other words, it is not only one’s right to become a mother that matters but also the contextual factors around that right and an individual’s life as a mother. One of the tools that can be used for developing and applying the framework that serves as both conceptual and methodological way of approaching the topic is intersectionality.
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C. Intersectionality
The sociology of everyday life closely connected to lived citizenship is constituted by elements from different disciplines which open new paths to transdisciplinarity (Kalekin-
Fishman, 2013) and, as I argue, intersectionality. Christensen and Jensen (2012) call everyday life a point of departure that makes a non-additive model of intersectionality possible. In other words, they argue, in order to address one of the main concerns of intersectionality – a static conceptualization of categories that treats them as additives, we need to resort to lived experiences, through which intersectionality captures historical and contextual conditions and treats categories as anchor points. Furthermore, intersectionality challenges the epistemological erasures and silences (May, 2015).
When thinking about my own project, I am cognizant of how intersectionality is manifested methodologically and what intersectionality should and should not do to adhere to its social justice potential. Intersectionality as a theoretical tool illuminates the workings of social inequality, power, relationality, social context, complexity, and social justice (Collins & Bilge,
2016). As such, it intends to examine how power and privilege operate on several levels at once with structures, categories, and institutional formations that are contingent on the cultural and historical contexts (May, 2015). Thinking intersectionally has evolved since the 1970s when
African-American women began to develop intersectional analyses to account for power dynamics along the axes of race and gender. Today, the multi-faceted nature of intersectionality creates a situation where we are more adept at calling for intersectionality and proclaiming its importance than we are actually doing it (Hirschmann, 2012). May (2015) demonstrates how intersectionality can often be used as a way to reify the logics of separation, hierarchy, and false universals by flattening and simplifying the identity factors it addresses. As such, one of the
46 major dangers of intersectionality is the temptation to treat it as an additive model. Choo and
Ferree (2010) discuss intersectionality as a characteristic of the social world rather than the inclusion of specific categories into the research. By treating the categories of race, gender, ability, ethnicity, and other equally important positionalities, as something that can be neatly combined into a frame of analysis, we risk failing to recognize different levels of analysis (i.e., personal, cultural, structural) (Yuval-Davis, 2006b) and creating a hierarchy of oppressed groups, both of which hide the fact that intersectionality operates in complex and fragmented ways (Conejo, 2013). Indeed, a focus on subordinated groups risks fetishizing difference (Choo
& Ferree, 2010). Ultimately, what is important is not social identities but the social power embedded within them (Yuval-Davis, 2006b).
Following the intersectional tradition and logic of treating gaps in knowledge as meaningful and reflective of institutionalized injustices (May, 2015), my project turns to the invisible experiences of mothers with disabilities in Russia to try to “impact knowledge dynamics and political possibilities” (Ibid). Disability not as a category but as a larger configuration of interactive forces introduces a new vantage point for intersectional research.
Hirschmann (2012) suggests that disability is intersectionality within intersectionality. Disability captures the embodied, social, political, economic dimensions of being, however it has long been excluded from the multiplicity of human experiences and considered the ultimate other. In highlighting disability studies’ contribution to feminism within debates around body, care, reproduction, and the creation of feminist disability studies (Garland-Thomson, 2005), more of intersectionality’s potential has been uncovered. For example, where feminist discourse has moved from the construction of motherhood as a burden to the rights of women to make choices about and within motherhood, disabled women still need to prove that they can fit the
47 stereotypical mother role (Lloyd, 2001). Garland-Thomson (2005) encapsulates the role of disability in intersectionality by saying that “feminist disability studies can make us all reimagine more deeply what it means to have a dynamic and distinct body that witnesses its own perpetual interaction with the social and material environment.” It is the unique positioning of disability as intersectionality within intersectionality, rather than its marginalized status, that needs to be an integral part of basic intersectional analysis. Considering that disability has long been used as an analogy (i.e., race is like disability), it is important to consider it in its own right (Ben-Moshe &
Magaña, 2014). In the context of foregrounding the experiences of mothers with disabilities, intersectionality functions, not as way to homogenize and categorize the experiences of disability but, as way to further develop the multiplicity and complexity of our theorizations of privilege and oppression, exclusion and inclusion.
Intersectionality reshapes the context of citizenship theory by including the different strands, the interwoven threads, the different levels, and the nuances of meaning (Abraham,
Ngan-ling Chow, Maratou-Alipranti, & Tastsoglou, 2010). Context and experience are the main aspects of intersectionality that are constitutive of lived citizenship and how questions about how one’s subjectivity, meanings of care and a sense of belonging are shaped. Finally, intersectionality contributes to citizenship framework because it encompasses the dimension of substantial citizenship rather than simply focusing on formal levels of legal status, entitlement to rights, and legal structures (Cherubini, 2011). The following sections focus on the domains of care, subjectivity, and belonging as a way to analyze them in the context of their contributions to citizenship theory and to generate sites for further empirical analysis.
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D. Care and Citizenship
Care has been a central question of citizenship theory. Lister (2003) summarizes the question of care as a dilemma between the citizen/worker and citizen/carer. By distinguishing between the public nature of work and the private nature of care, Lister questions the exclusion of claims to citizenship based on care. Social citizenship (besides civil and political citizenship), includes many human rights, such as the right to housing, education, employment, and income, but it leaves aside the right to give or receive care (Knijn & Kremer, 1997). At the heart of this exclusion is the value, or lack-thereof, placed upon each of these activities and their relegation to different domains. Yet, human interdependency and the need for care that it creates exists outside public or private domains. Tronto (1993) suggests that, our inability to think of care in other terms (not privatized and gendered) is not a failure of care, but a constraint in the social context, in which caring practices occur in our society. In other words, the very framework of thinking about care does not allow us to accept it as part of citizenship without having to argue that it is as valuable as traditional work because it makes such work possible in the first place through the invisible care provided within families.
How do we validate and support caring responsibilities, which are carried out predominantly by women, and how do we liberate women from their gendered responsibilities?
Is care an obstacle to citizenship or a resource for citizenship? When these questions were first formulated by feminists, they were not underpinned by a comprehensive view of care that included people with disabilities (Hughes, McKie, Hopkins & Watson, 2005) nor did they consider the power imbalances that exist between care providers and care receivers (Keith,
1992). In recent years, however, the field of citizenship studies has begun to redefine the role of care in claiming citizenship. Herd and Meyer (2002) consider carework to be part of civic
49 engagement in the sense that care fosters social and reciprocal ties between individuals. Kershaw
(2010) and Longman et al. (2013) recognize that caregiving contributes to political citizenship through mother’s efforts to cultivate children’s affiliation with their cultural history. However, this discussion focuses on the intersection of motherhood and ethnicity. It is still rare to come across a discussion of care and citizenship as it relates to disability and gender.
Before discussing how mothers with disabilities are redefining care, I track the history of divergent views on care within feminist and disability studies. A dyadic definition of care
(caregiver/care receiver) was one of the main stumbling blocks of the divisive approaches to it.
Feminists have emphasized that the relegation of care to the domestic sphere and the inherently gendered, classed and racialized nature of care have resulted in the social devaluation of care.
Tronto (1993) contends that the moral boundaries of a world constituted by the capitalist work ethic cannot recognize the importance of care. An ethics of care has been developed as a response to the dominance of individualism and autonomy, and now calls attention to the necessity of redefining moral foundations of human life so that they recognize the inherent need for care that all people have at varying points in their lives. (Kröger, 2009; Tronto, 1993). Kittay
(1999) calls such inherent need the inevitable dependencies.
Disability activists have responded to the development of an ethics of care, which is based on the notion of responsibility, with an ethics of justice, which is based on the notion of impersonalized rights (Kröger, 2009). Western disability rights scholars and activists have argued against maintaining the invisibility of receivers of care in discussion about care and suggest that a conception of care that presents disability as an individual problem makes the act of receiving care disempowering and obscures the agency of a person who has a disability
(Beckett, 2007). This denial of agency then results in the denial of the right to make decisions
50 about one’s own life (Kröger, 2009). Thus, people with disabilities stress the importance of having choice and control over their own care and their citizenship. Glenn (2000) argues that the right to receive care is a core right of citizens. However, some researchers view the personal assistance system as mechanical and flawed. Watson, McKie, Hughes, Hopkins, & Gregory
(2004) critique an approach that underplays the reciprocity and emotional involvement and argues that the empowerment of people with disabilities does not protect them from potential exploitation.
In recognizing the truths of the feminist and disability studies approaches to care, a number of researchers identify points of intersections between them (Beckett, 2007; Hughes et al., 2005; Watson et al., 2004). By using Irigaray’s framework, Hughes et al. (2005) argue that both positions are two sides of the same coin in a sense that both are constructed as the “feminine other” when the value of care is measured against the autonomous adult male who neither requires, nor delivers care. Watson et al. (2004) developed a concept of caringspaces to acknowledge the spatial and temporal dimensions of care and reflect the complexity of the terrain negotiated by women with family responsibilities and by people with disabilities. Beckett
(2007) brings the discussion back to the inherent devaluation of care that affects both women and people with disabilities. She says, “in the narrowness of the present position, actual resources are allocated within a matrix of social expectation and cultural norms. The argument becomes oppositional because the groups affected, disabled people and women, are competing for resources by using claims that depend on the extent of their neediness and deservedness”.
Women with disabilities and, specifically, mothers with disabilities demonstrate that care cannot be simply divided according to who provides and who requires it. Care, in all its manifestations, can be embodied by one individual, which complicates the discussion of
51 citizenship. Lloyd (2001) argues that women with disabilities have helped reconceptualize care in three ways. First, by challenging the argument about the inherently oppressive nature of care for women, women with disabilities suggest that caring is something that women might genuinely want to do, especially if it concerns an intimate relationship. When it comes to caring in the context of families, people tend to view themselves as parents, husbands/wives, etc. In other words, care does not have to be about social structure or psychological phenomena. Tronto
(1993) refers to the exclusive focus on caring relationships as a parochialism that forecloses the possibility of situating care in the structural configurations of welfare policies, family, and informal care. Second, the caring role is not equivalent to the caring function. Motherhood transcends a set of tasks like bathing, feeding, dressing and the like and encompasses affective dimensions as well. Third, the successful fulfilment of caring responsibilities is not reliant on one individual and unsupported caring tasks – it requires interdependence. However, the idea of interpersonal interdependence that focuses on relationality and equal reciprocity, while providing an alternative to medical models of disability (Dolmage & Hobgood, 2015), should not be romanticized. Recognition of interdependence should not minimize the importance of recognizing that people with disabilities may have needs that are qualitatively different than those of other people (Morris, 1993; Wint et al., 2016). Similarly, Fine and Glendenning (2005) ague for an idea of interdependence as the acknowledgement of relations of dependence.
In rejecting the dichotomous nature of care, mothers with disabilities, especially, in non-
Western contexts, challenge conceptualizations of care as only a service or transaction. The question becomes not about whether care provided is paid for or not but about whether care allows for self-determination and personal choice (Rummery & Fine, 2012). The concept of informal care expands the domain of care to include families where much care occurs. However,
52 informal care can create what some researchers call “compulsory altruism” (Harris, 2002) where personal choice is not there. The recognition of informal care as a way to redefine citizenship from the position of disabled mothers must take into account the so-called “active citizenship”
(Harris, 2002), which pushes for individuals to provide informal care as a way to fill the gap in public resources and promote neoliberal notions of self-help and the marketization of care. Such context complicates the navigation across analytical entanglements of informal care.
Furthermore, not all countries’ care systems are the same or have been impacted by the neoliberal policies to the same extent. For example, informal care in Russia has existed prior to and after the collapse of the Soviet Union. This recognition is not meant to naturalize the gendered and unacknowledged nature of care that exists within informal care, rather my intention is to situate care within a broader context.
Care is often a vague analytical category that transpires differently across cultural boundaries. It can be understood as a feeling or emotion toward others, a physical activity, or a social relationship (Rummery & Fine, 2012). A focus on families and kinship structures localizes care and makes it more tangible. For example, Eichler and Albanese (2007) discuss household work as a variation of care. In fact, both household work and traditionally conceived care involve the same kinds of work, but the former emphasizes the activity involved, whereas the latter stresses the relational aspect of that activity (i.e., “I cleaned the house” vs “I cleaned the house for my father”). The daily experiences of mothers with disabilities can reveal these nuances of care on an empirical level.
By rejecting the dichotomized thinking that separates the private from public, dependence from independence, caregiver from care receiver, we can recognize the potential in a multi- faceted view of care infused with intersectionality. We also need to reject seeing ethic and justice
53 as separate. Through their practices of care, mothers with disabilities construct a non- individualized notion of citizenship where, “the idealized self-sufficient subject is replaced by one embedded in a sense of other-relatedness” (Fisher, 2007, p. 293). Moreover, motherhood with disability can be positioned within “caring through” disability that recognizes disability as the fundamental condition of possibility for caring since, “to care through is not to contain, define, or discipline disability but to provide space for what disability is and, more so, might become” (Dolmage & Hobgood, 2015, p. 565). Disability provides a foundation for thinking about citizenship through the lens of care by recognizing the creative and productive nature of disability.
E. Subjectivities and Citizenship
Although my research explicitly identifies participants who belong to a specific social group, my research has not found that this group of participants felt a shared sense of social identity. Following Goldenberg (2007), who argues that the act of categorizing is the act of deciding what distinctions matter and is therefore itself a political act (as it reflects the interests and positions of the categorizer), some level of generality about women is necessary because it grants explanatory power that otherwise would not be there.
The focus on subjectivity in this chapter is not an indication of my rejection of the concept of identity within the context of Russia. Rather, it is a recognition of the instabilities and fractures in the way motherhood with a disability is simultaneously produced and delimited. The participants’ lived experiences destabilize Russian identity categories and I am reluctant to apply
“identity” to a context where identification with disability is not desired and is still widely stigmatized. In western disability studies, “identity”, specifically “disability identity,” has acquired a positive and desirable meaning following the beginning of the disability rights
54 movement, at least in its cultural realm (Shakespeare, 1996; Shapiro, 1994). Abrams (2015) suggests that the social model of disability often does not take subjectivity into account because the embodiment associated with subjectivity is addressed in discussions about barriers and oppression creating disablement. By distinguishing between the subjective experiences of disability and impairment, Abrams (2015) critiques the social model for failing to recognize embodied subjectivity, and argues:
It (subjectivity) does not wholly reflect human existence. It does, however, reflect the way that disabled persons use their own subjectivity in the course of doing disability politics. (p. 228) Abrams emphasizes that, while subjectivity is not a holistic experience, it is strategic.
Identity, on the other hand, is embedded in the cultural realm (Hall, 1996). “Disability” in other geographical contexts, specifically Russia, exists outside the cultural realm. The dissident movement active in 1970s and 1980s included some activists with disabilities, however, their activity was limited by being closely monitored by the state, which only allowed for a narrow set of politically safe issues (i.e., disability sports, facilitation of communication among people with disabilities across the country) to be discussed (Phillips, 2009). Such “rumblings of dissent”
(Phillips, 2009) had little impact on dominant understandings of disability in Russia, which revolve around bureaucratic categories embedded in the social welfare system. Disabled identity often became a survival strategy rather than a category associated with pride. As demonstrated by Petryna (2003), people who were at the epicenter of the Chernobyl disaster had to rely on their damaged/disabled bodies and medical knowledge of the harms associated with nuclear fallout to gain political recognition and access some form of welfare inclusion.
My research indicates that being a mother, in the context of the pronatalist state, is a much more desired identity category than being disabled. However, the concept of subjectivity allows us to see beyond rigid lines of identify politics and recognize structural as well as
55 subjective factors that come into play when creating one’s “I”. The lack of common diagnostic labels among the participants raises the question of whether the broad category “mothers with disabilities” is viable. As one of the participants with a hearing impairment told me, “Our problems are very different from women who use wheelchairs.”
In an effort to distinguish between identity politics and subjectivity as it is related to the
Foucauldian idea of biopower, Whyte (2009) suggests that the former focuses on the assertion of difference and the witnessing of discrimination and looks to gain recognition and change social conditions. Scholars and activists in this tradition tend to assume conscious actors with intentions. The latter, however, problematizes the workings of discourse and technology in the shaping of subjectivity and new kinds of social relations. Staunæs (2003) provides a more specific differentiation between the two. She suggests that,
compared with the concept of identity, which is used in both postmodern and modern literature, the concept of subjectivity can grasp stability as well as change and rupture. Furthermore, the concept is built upon a certain understanding of the relation between this sense of self and the social context in which subjectivity is in an ongoing process of becoming. (p. 103)
This emphasis on social context is also echoed by Whyte (2009), who argues that if we focus squarely on the formative effects of subjectivity, we can lose sight of the political and economic bases at the root of inequalities and injustices that people experience. Iris Marion
Young (2002) offers a concept of a lived body to bring the importance of embodiment to the forefront that is rendered invisible within the gendered social structures. Staunæs (2003) is concerned that by focusing on the structural within identity and identity politics, we risk overlooking the processes taking place at the subject level. Complexity and the changing nature of lived experiences require a different approach. This need for nuance and complexity is reflected in Utrata’s (2015) exploration of the experiences of single mothers in Russia. Utrata reflects on the category of single motherhood as “ambiguous, fluid, and almost up for grabs with
56 little agreement on who single mothers are” (p. 7). She suggests that shifting definitions of family and family relations result in ambiguous positions.
The understanding of subjectivity presented in this chapter draws from Shildrick’s idea of fluid and slippery categories (2009). She argues that disability posits a challenge to the normative desire to establish security and predictability about the nature of a human being. It is when we destabilize the category that we are forced to rethink “all sorts of epistemic and ontological claims.” In their well-researched and thoroughly insightful monograph, The Worlds of Russian Village Women: Tradition, Transgression, Compromise, Laura Olson and Svetlana
Adonyeva (2013) investigate how three generations of rural Russian women relate to tradition.
They demonstrate that these women exercise their agency through relational processes. The embeddedness of women’s subjectivity within a web of social relations illuminate the subject’s irrational, embodied and non-unitary position. Personal narratives, associations, and stories, which are always part and parcel of history, act as an “interface” between self-formation, cultural memory and socially accessible forms of symbolic self-representations (Oushankine, 2000).
Building on the abovementioned relational nature of subjectivity, I argue that subjectivity is also very contextual. How a person sees themselves at any given moment depends on the context of that moment. Zigon’s (2011) idea of subjectivity is also useful here. In his ethnographic account of drug addiction rehabilitation within the Russian church, he argues that the production of subjectivities goes hand in hand with the production of an object. By enacting their agency and claiming their right to be a mother, mothers with disabilities become objects of discursive practices. Understanding citizenship through the lens of agency helps avoid the construction of women and other marginalized groups as passive victims. At the same time, agency is embedded
57 in and shaped by the social structures, making it important to remember that the expression of agency can be constructed by the discriminatory and oppressive practices (Lister, 1998).
F. Belonging
The concept of belonging is an essential component of citizenship and identity.
Ultimately, citizenship is about the delineation of belonging. Some argue that belonging is a thick concept that allows us to focus on location, positionality, and the preconditions for quality of life rather than focus on cultural identity, which can be reductive (Anthias, 2006). Anthias
(2006) notes that one may identify with a group but not feel that they belong to/feel accepted by that group, or one may feel accepted by a group but may not fully identify with it. Antonsich
(2010) warns against conflating citizenship and belonging because the latter is about more than simple membership, it is about the construction of social place and the resonance that social place has for one’s sense of self. Belonging is conceptualized as a personal, intimate feeling of being “at home” in a place (Antonsich, 2010). Feeling needed, important, integral, valued, respected, or feeling in harmony with a group or system also characterizes belonging (Mahar et al., 2013), which can also include the dimensions of spatiality and territoriality (Lovell, 1998) that encapsulate the phenomenology of locality and histories surrounding place. The intersecting and the fragmented nature of belonging is reflected in the spatiality of belonging that focuses on the geographical, social, and temporal spaces occupied by ethnic, racial, or national minorities and/or otherwise marginalized groups (Lähdesmäki, 2016).
Unlike the affective aspect of belonging discussed above, the politics of belonging comprises specific political projects aimed at constructing belonging in particular ways to particular collectivities that are, at the same time, themselves being constructed by these projects in very particular ways (Yuval-Davis, 2006a). The politics of belonging is about boundaries that
58 cut across gender, class, age, disability (Anthias, 2006) and about discourses which construct, claim, justify, or resist forms of inclusion/exclusion (Antonsich, 2010). Although conceptually distinct, belonging and the politics of belonging are more connected in empirical research. The intimate feeling of “I belong here” is conditioned by the working of power relations (Antonsich,
2010). In her study of the Roma living in Finland, Nordberg (2006) observes that a sense of belonging to the citizenry of the nation-state is produced through historical narratives, predominantly of participation in war, through religion and language. However, the marginal position of the Roma derives from the same national culture. Feeling like a citizen is as much about affect, as it is about legislated identity, and by challenging a traditionally masculinist and rational underpinning of citizenship, affect in fact can disrupt this rationality (Fleischamann & van Styvendale, 2011).
The aspect of resistance and claims-making embedded in belonging is closely related to agency. The idea of agency is used to characterize individuals as autonomous, purposive, and creative actors, capable of choice (Giddens, 1991). Lister (2003) sees agency as being in dialectical relationship with social structures that allows us to avoid blaming women for the inequalities that disadvantage them but also to avoid casting them as passive victims. The study of citizenship requires an acknowledgement of ordinary people’s ways of resisting as they build themselves as particular kinds of citizens, but these processes are not necessarily liberatory
(Lazar & Nuijten, 2013). For example, in their study of women with intellectual disabilities in abusive relationships, Pestka and Wendt (2014) argue that the need to belong and seek socially desirable status results in many women remaining in violent relationships. “Women living with intellectual disabilities fight very hard to conform to the ascriptions that give women value, and
59 possibly settle with or accept abuse in their lives to gain social value that has often been missing throughout their life course” (Pestka & Wendt, 2014, p. 1042).
In the context of disability, belonging is often discussed in relation to inclusion.
Belonging and inclusion are closely connected. Belonging does not automatically bring inclusion, but through practices of social inclusion, a sense of stake and acceptance in society is created and maintained (Anthias, 2006). But unlike inclusion that exists in relation to its opposite
– exclusion, the concept of belonging is multidimensional and is never a zero-sum game
(Antonsich, 2010). Moreover, by focusing on dichotomy inclusion-exclusion, we hinder the analysis of what constituted this dichotomy in the first place. Disability only matters as the problem of exclusion (Titchkosky, 2003). In analyzing community connectedness, Milner and
Kelly (2009) recognize that the contexts of inclusion might be limited in that they might treat inclusion as a dominant status quo configuration that perpetuates assimilative logic that forecloses the alternative imaginings of experiences that shape the values and social practices of people with disabilities. The concept of belonging responds to the changing scale of citizenship and puts a task of looking beyond the formal rights to recognize the mutual embeddedness in larger social relations and the intertwining of politics with ethics, economics, and social status
(Hirschmann & Linker, 2015).
The most influential political project of the politics of belonging is the nation-state with nationalism forming the ideological ground (Youkhana, 2015). The gendered nature of the project is manifested in women’s role in the construction of the nation-state specifically in the context of reproduction. Without closer analysis of gendered nationhood, the issues around subjectivity, care, and belonging remain on the level of the individual rather than the social.
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G. Reproductive Сitizenship
Reproductive citizenship draws on the earlier scholarship recognizing the private, however it also gestures toward a debate that carries a special significance to disability rights movement. Historically, people with disabilities have been deemed as having no value as reproducers, they have been subject to forced abortion and sterilization. In recognition of these histories some of which linger now I seek to draw a connection between the politics that defines who is worthy to give birth and be a mother and the lived experience that pushes against the definition of worthiness. By focusing on the embodied aspect of citizenship, we can bring the discursive and the experiential together. I view reproductive citizenship as a precursor to the debate on mothering as citizenship because a larger context of the politics of reproduction will inevitably impact the actual processes and practices of mothering.
Reproductive citizenship also attempts to break away from the underlying dichotomy of public and private domains as a starting point for alternatives. The contextual and discursive conditions of gendered nationalism and able-nationalism converge and intersect to inform reproductive citizenship of mothers with disabilities. It suggests that to break the duality of the private-public debate is to question the very meaning we attach to what a private or a public domain is. By disrupting the underlying need to have a separation, we can move beyond the discussion of how women can fit it. Das and Addlakha (2001) suggest that once we displace domestic from its conventionally assumed reference to the private, we create a sphere in which it is always on the verge of becoming political. It is this disruption and creation of dispersed sites that makes it possible to claim citizenship. By refusing to locate reproductive citizenship within the private or the public by questioning the very foundation of this divide, I acknowledge it is a priori political and structural nature entangled with the possibility for enacting one’s agency.
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A second component that informs reproductive citizenship is lived experiences of mothers with disabilities. Instead of viewing the lived citizenship squarely in the realm of the private, I argue that boundaries between the discursive (the macro-level) and the lived (the micro-level) are much more permeable. In fact, the links between the self and society are reflective of relational nature of citizenship, such that it helps to assess the ways in which people with disabilities see their lives in complex relationship with hegemonic (state) discourses
(Phillips, 2014).
Third, reproductive citizenship pushes further the debate about citizenship as a process rather than citizenship as status. Whether it is the subversion of the sense of immediate identity or the shifting understanding of kinship, mothering with a disability encapsulates the process. If reproductive rights reflect a status (one either has access to them or not), reproductive citizenship reflects a process. As Lister (2007) distinguishes between the two, to be a citizen is to enjoy the rights of citizenship necessary for agency and social and political participation, however, to act as a citizen involves fulfilling the potential of that status. That status might formally be there, but it might only be visible in the process of enactment.
The process of pulling different strands of citizenship theory to apply to a specific empirical context is indicative of the framework’s malleability. The recognition of the framework’s creativity is the only way to overcome what Roseneil (2013) calls “the fundamental flaws in citizenship”.
H. Conclusion
Citizenship framework crystallizes the main debates underlying the logic of negotiating an individual’s citizenship. The scholarship around the framework of citizenship accumulated rich debates around care, belonging and agency, subjectivity that provide a useful lens for
62 shifting meanings of mothering with a disability. Reproductive citizenship operates at the level of lived citizenship without discounting the contextual environment that essentializes the role of women as mothers. Disability that has always been regarded as an exclusionary category complicates not only the discursive field but also the material conditions and the experiences of mothers with disabilities.
The inquiry into the reproductive citizenship as it is applied to the post-Socialist context provides a disability studies perspective into the debates around living on the continuum exclusion - inclusion. Most importantly, the framework of citizenship serves as a tool for expanding our understanding of disability because as much as citizenship is about how people as subjects are defined and shaped by authority, it is also about how individuals understand themselves and act to makes claims, demand protection, communicate, and resist.
IV. METHODOLOGY
A. Introduction
This chapter will focus on the methodology used in this dissertation. Besides discussing the procedural aspects of data collection (selection criteria, qualitative interviewing), I will discuss cultural and ethical aspects of conducting cross-cultural research. I suggest that the underside of qualitative methodology, the path that created a context and shaped our thinking, is as important as the actual results. That is why this chapter will focus on the questions of recruitment and analysis as well as on the issues of conducting research in cross-cultural settings, on being an insider-outsider, and issues around reflexivity. The chapter will focus on feminist interviewing as a powerful tool for exploratory research.
B. Exploratory Qualitative Research
This research is exploratory in nature. Stebbins (2008) defines exploratory research in social sciences as “broad-ranging, intentional, systematic data collection designed to maximize discovery of generalizations based on description and direct understanding of an area of social or psychological life.” My exploration of this topic started with a general interest in disability in the post-Soviet space; however it took me several years to narrow down my interest on the experiences of mothers with disabilities in Russia. My original interest in analyzing disability policies in Russia has shifted to the cultural realm, as I realized that that personal stories cannot be separated from the contextual frame that made these stories possible. In discussing the use of discourse analysis in qualitative research, Cheek (2004) argues that the goal of analyzing the transcripts is not in exploring the content or meaning of the text. Rather, it is about explaining how certain things came to be said or done, and what has enabled and/or constrained what can be
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64 spoken or written in a particular context. The discursive component of my research is introduced prior to data analysis. In fact, my research questions are driven by the ideas identified in wider social structures that position motherhood and disability in a particular way.
The need for exploratory research is also justified by the scarcity of research on disability and gender in modern Russia. My search has led me to the Summer Research Laboratory on
Russia, Eastern Europe, and Eurasia at the University of Illinois at Urbana-Champaign. The lab provides access to comprehensive resources on the region. After spending a week at the lab, it became clear that my research will be exploratory as there is simply not enough information on the topic. Exploratory research is characterized by the following features that are incorporated in this research: it tends to be qualitative, inductive in data analysis and deductive in verification.
C. Intersectional Research
When reflecting on how to incorporate intersectionality, which has received significant theorizations in the last twenty years, I incorporate the following characteristics put forward by
Windsong (2016). First, she suggests that intersectional research should move away from additive analysis that has been criticized for the reductive view of the lived experience. Second, such research should incorporate relationality and, thus, recognize the importance of interactions and social structures. Finally, intersectional research adheres to the principles of social constructivism in analyzing how different categories are constructed in relation to each other and larger structures. To expand on the last thought and complicate often taken for granted essentialist approaches to categories, I will also draw on Staunæs (2013) who developed the view of categories not as the prerogative of certain actors but rather as categories that are produced, sustained and subverted in relation to one another. Intersectionality as both theoretical but also methodological practice holds a great potential for excavating the knowledge about disability
65 that is not confined either by the discursive or by the material. If intersectionality is reconceptualized in a way that it accounts for both agency and structures, it can be invaluable to anchor the formation of subjectivities and agency within a nexus of social relations and structures (of race, class, gender) that work together to (re)produce power and privilege (Bilge,
2010). Agency can be defined as an individual’s positioning within a network of power relations, which defines a set of limits and freedoms shaping action (Choby & Clark, 2014). An intersectional approach to agency needs to turn its focus on specific contexts and articulated social formations from which different forms of agency and subject positions arise (Bilge, 2010).
D. Feminist Disability Studies Methodology
It is the intersectional nature of feminist disability studies that creates a myriad of possibilities for inquiry. “Intersectionality, by virtue of its vagueness and inherent open- endedness, initiates a process of discovery which is not only potentially interminable, but promises to yield new and more comprehensive and reflexively critical insights” (Davis, 2008, p.77).
Disability studies research has traditionally criticized the postitivist and medicalized approach to studying disability calling instead for personal experience to be the epistemological basis (Kitchin, 2000). Positivist approach is characterized by the medicalized views of disability that devalues individuals’ experiences. The disability research paradigm with its focus on reciprocity, collaboration, and advocacy echoes the feminist research model (Alcalde, 2007). The key features of this model include a redefinition of the social relations of research production, a rebuttal of positivist and interpretive claims to “objectivity” and assertions about the political position of the researcher (Stone & Priestley, 1996).
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The development of feminist methodology has been based on several levels of critique of the dominant methodological paradigms. The philosophical level involved a critique of positivism with its pretense of value-free science and the presumption of objectivity. On a moral level, feminists have criticized the objectification of subjects and their exploitation by researchers. The practical critique derives from the opposite interests of the researcher and researched. However, “giving voice” was a progressive development in the history of feminist theory (Gorelick, 1991). It is understood in feminist research that by listening to the voices of those who are made “other”, and taking full account of their experiences in their struggles against oppression, the “truth”, or at least a form of truth, can be revealed (Fawcett & Hearn,
2004). The process of listening, quintessential to qualitative research, becomes a powerful tool of meaning-making in the context of emphatic listening. Emphatic listening means exposing ourselves to the unknown; it involves giving up our usual frameworks and immersing ourselves, intellectually and affectively, in the viewpoints and experiences of the other (Josselson, 2013).
Disability studies just like feminism is based on the value of personal stories and the voices of those who have been marginalized. Individual stories serve as a basis for theorizing and transforming the idea about what knowledge is and how it is produced. The disability movement has taken on the feminist principle of the personal is political, and in giving voice to such subjective experiences, it asserts the value of the lives of people with disabilities (Morris, 1992;
Shakespeare, 1997).
Further discussion of the use of interviewing as a technique in my research expands methodological debates in feminist disability studies. Feminists embraced interviewing as a method of making experience hearable. The process of interviewing is a rigorous process that includes not only adherence to the technical aspect but also a constant struggle as to the type of
67 relationship a researcher should strive for with the participant and to the accompanying power dynamic that could significantly affect the data from the field (Tighe, 2001). Feminist interviewing is aimed at breaking down the hierarchy between a researcher and a respondent and allows for interaction to occur. Participants raise issues not previously thought of by the researcher (Letherby, 2003) ultimately resulting in the generation of new research questions.
Letherby (2003) reminds us that it is not the use of a particular method or methods which characterize a researcher or a project feminist, but the way in which the method(s) are used.
When the voices of people that have been previously discounted are included in the research agenda, not only do the research questions expand, but methods themselves become more refined. For example, the inclusion of voices of women with disabilities brought forward the issue of violence and abuse of women with disabilities (Gilson, Cramer, & DePoy, 2001;
Plummer & Findley, 2012).
Feminist disability studies necessitates qualitative methodology by virtue of its very arguments about the erasure of the experiences of women with disabilities from the public discourse. The goals of feminist disability research are
to establish collaborative and nonexploitative relationships, to place the researcher within the study to avoid objectification, conduct research that is transformative, and apply a disability interpretive lens, i.e., the idea that disability is a dimension of human difference and not a defect. (Creswell, 2013, Kindle 5.14, location 849) Acknowledging stories about lived, experienced embodiments is a first step away from the notion of one standard body and towards an understanding of the link between difference and sameness (Ahlvik-Harju, 2015). Qualitative interviewing allows the feminist researcher to access the voices of those who are marginalized in a society; women, people of color, homosexuals, and the poor are examples of marginalized groups (Hesse-Biber, 2007). Hesse-Biber (2007) cites
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Reinharz who explains how interviewing is a way in which feminist researchers have attempted to access women’s hidden knowledge:
Interviewing offers researchers access to people's ideas, thoughts, and memories in their own words rather than in the words of the researcher. This asset is particularly important for the study of women because in this way learning from women is an antidote to centuries of ignoring women's ideas altogether or having men speak for women. (p. 19) DeVault and Gross (2007) also discuss how the traditions of research interviewing have been strongly linked to social justice concerns, concerns that are relevant for historically marginalized populations, such as people with disabilities. Interviewing allowed to shift authority and “truth” from the traditional positivist disciplines.
E. Experience, Context, and Discourse
Despite the importance of including the voices of people with disabilities in research focusing on understanding the lived experiences of people with disabilities, we need to be aware of the limitations of solely relying on this method of knowledge production. Susannah Mintz
(2007) cautions against relying on the first-person narrative of disability just because it is not a positivist methodology. In order to revise cultural understandings of disability, we cannot solely rely on confessional writing. Rather, in the process of constructing a narrative we should not retreat from conceiving of identity in political and/or communal terms. In other words, an individual story does not exist in a vacuum but in relation to the larger fabric of society. It is this connection between a personal narrative and a contextual environment in which it is told that interests me for the purpose of my dissertation.
In the process of conceptualizing the data that I have collected and some of the themes that emerged, I was struggling with how to reconcile some of the internalized notions of exclusion expressed by the participants and my internal sense of disagreement with some of the participants’ views. Not only do we as researchers need to be reminded of the “myths of the
69 friendly ethnographer” (Fine, 1993) that challenge the presumptions of impartiality during the research process, we also need to interrogate the value of experiential knowledge.
To deny the importance of the context in which an experience occurs is to suggest its fixity. Scott (1991) posits the question of whether evidence presented in experiential knowledge can be taken in its own right. She suggests that it is the very appeal to experience as uncontestable evidence that can weaken the analysis. When we perceive the identities of those whose experience is documented as self-evidence, what is lost is the discursive nature of this experience. What concerns me is the limits of the agency that a subject has. This agency is constructed by a variety of contextual factors that play a role in what is said, how it is said, and what is left unsaid. Scott (1991) argues that,
the project of making experience visible precludes critical examination of the workings of the ideological system itself, its categories of representations, its premises about what these categories mean and how they operate, and of its notion of subjects, origin, and cause…It is not individuals who have experience, but subjects who are constituted through experience. (p. 778) The challenge, then, is to how balance the importance of materiality, the embodied lives with what structures these lives.
My thinking about the analysis of the interview data is informed by van den Berg’s
(2008) discussion of contextualization of qualitative data as an important component of analysis that connects “theoretical” to the “empirical”. Critical discourse analysis helps to make sense of contextualization.
Critical discourse analysis is informed by critical theory, Foucaldian analysis and critical linguistics. It explores the social aspects of language (Grue, 2016) and emphasizes the importance of context in the analysis. However, van den Berg sees critical discourse analysis as too broad. What is suggested instead is contextualization informed by the conditions of discursive production. This approach suggests that certain conditions may contain relevant
70 contextual features that the analyst should know to interpret the text. It is viewed as an interface between general characteristics of social structure (such as pronatalism), on the one hand, and talk (such as the accounts that valorize motherhood), on the other hand. It becomes important to view the individual stories in the context of the dominant cultural values and the individuals’ social location in relation to class and access to resources (i.e., information, supports). And yet, contextualization does not suggest causal connections or any reductive conclusions but provides additional tools for understanding the meaning of the experiences as a source of “truth”. In the absence of any other specific criteria of the kind and measure of contextualization, van den Berg
(2008) suggests using the principle of parsimony. The principle implies the recognition that complete contextualization is unattainable and that contextualization is always limited. However, its incorporation into any qualitative analysis is paramount precisely because of its in-depth focus.
F. Post-Soviet Research Space
When I went back home during the winter break in 2012, I was determined to identify potential recruitment opportunities for my research that I was still designing. The first place I thought of was the All-Russian Society for the Disabled. Formed in 1980s by the state, this organization is the most visible disability advocacy organization, yet I had second thoughts about it. The secretary of the organization seemed very suspicious of me and asked me why a Russian citizen getting her PhD in the USA was interested in the topic. Then she asked me whether I was aware of the Foreign Agents Law (Konsultant Plus, 2014) that requires all groups that receive foreign funding to officially accept the status of the agent. Supporters of the act claim that it defends the interests of the Russian voters who would be better informed about the sources of income of certain politically-active non-profit organizations (NGOs). The critics argue that the
71 law is targeted against human rights NGOs, including disability organizations. The secretary did not seem convinced when I told her that I actually did not represent any group and act on my own. Perhaps, I should have walked away right there but I was curious to meet the chair of the organization. What the chair told me exposed some of the challenges of conducting research on disability in Russia. In response to my question about the possibility of connecting me with some women with disabilities, she said that they would have to “screen” them to make sure those who participate are not too “negative” about their situation. The image of the country, she said, is at stake. But what became the last straw for me was when the chair informed me that they would have to review what I wrote. Essentially, she was suggesting that I would be censored. This experience demonstrated that I needed to become more creative in my recruitment tactics because gatekeepers can certainly become a barrier. Lofland et al. (2006) notes that “recent political and legal trends around the world have exacerbated the problem of ’getting in’, rendering some naturalistic studies exceedingly difficult, if not impossible” (p. 48).
G. Research Site
The research was conducted in the Russian city of Omsk located 1,389 miles away from
Moscow. It was founded in 1776 as a fortress during Russia’s expansion. It has grown to become one of the largest cities in Russia with a population over 1 million people. During the Soviet times, the city relied on the military industry. After the collapse of the Soviet Union, it was affected by the economic crisis along with the rest of Russia. It still boasts a few major universities, but its major economic lifeline is in the services sector and businesses related to natural resources (i.e., natural gas). The selection of the site was based on two major factors.
First, Omsk is my hometown, which made it logistically easier in terms of staying there and entering the field despite the challenges related to recruitment. Second, social research from the
72 provincial Russia is still rare. Even though the regional differences might not be as stark as in some other countries, provincial cities are less economically vibrant than Moscow or Saint
Petersburg, and this adds an important socioeconomic context.
H. Recruitment Strategies: Negotiating Access
The selection criteria included mothers who self-identify as disabled ages 18 to 60.
Kristensen and Ravn (2015) question the tendency to omit an in-depth discussion of recruitment as part of the methodological process and argue that this lack of focus on recruitment hinders important methodological discussions that could enhance the strategies and lines of action in qualitative research in general and qualitative interviewing in particular. Specific criteria and hard-to-reach status of the population makes recruitment an important component of the research process.
Cultural context also adds a layer of complexity to this process. For example, individuals who are not officially disabled (for example, due to bureaucratic barriers), but who consider themselves disabled might be hard to reach if the selection criteria focus only on the medical aspects of disability. In the process of thinking through the criteria for my research, I wanted to make sure women who do not have an official status of disabled assigned by the medical commission could also participate.
The political environment made the recruitment process more challenging. As I mentioned earlier, there is a general sentiment of distrust toward people and/or organizations associated with anything “foreign”. Since I represented the University of Illinois, I was acutely aware of that. Although my research did not involve any organizations in Russia, I could not dismiss the role of the environment of distrust in the recruitment process. Access to the field is not something that should be taken for granted in international settings. My example
73 demonstrates that it can be fraught with pitfalls. Obtaining access is part of building trust
(Korczynski, 2011). Although this process is important in any fields and settings, I argue that it is especially important in cross-cultural settings.
My own positionality as a person with a disability, amputee, provided me with an invaluable entry point to the field. My prosthetist in Russia and friends with disabilities connected me with either people who could help me identify potential participants for my study or people who matched the criteria for potential participation. I was open about my disability in my initial communication with the potential participants to demonstrate the connection between my own disability and the interest in this topic and to minimize the suspicion toward my request.
In the settings where a particular topic and a population group has not been studied, foregrounding one’s positionality might be one of the few ways to gain access to the field. My prosthetist in Russia who has grown to be my friend over the years connected me to some of her other clients who were mothers. Her role as a gatekeeper was indispensable.
A second strategy used in my recruitment was snowball sampling. Snowball sampling starts with a set of people (“seeds”) from the hard-to-reach population who eventually help the researcher contact more respondents (Kristensen & Ravn, 2015). Once initial contacts helped me establish a convenience sample, other recruitment strategies emerged. Once I conducted my first interview, I engaged in snowball sampling by asking the interviewees to refer me to other mothers with disabilities they might know. The challenge of recruiting participants through such a variety of means has its strengths and weaknesses. It certainly goes outside the institutionalized limits of a specific organization and has an intention of diversifying a group of my research participants. However, it also limits potential participation in research to proactive women who are more open to sharing their experiences and to women who have access to Internet. There is
74 also an issue of trust and how likely someone is to respond to online inquiry. Accessibility concern is a real concern for many disabled people in Russia, and finding an accessible location for conducting a face-to-face interview is challenging.
Finally, a third strategy involved my reliance on the virtual spaces that require a separate discussion.
I. Research in Virtual Spaces
Another important factor that made my research possible was the presence of people with disabilities in digital spaces - online. What Hartblay (2015) calls pixelization (particular pattern of social segregation that people with disabilities inhabit and make livable – physically isolated in a family apartment, but digitally networked) is a phenomenon that requires to be studied, but it also becomes a channel for connecting with people who otherwise cannot be reached. Hartblay
(2015) draws parallel between pixels on a screen and people isolated in the physical “cells” of their apartments. Despite this isolation in the physical spaces, a lot of people with disabilities are embedded and enlivened in networks that produce meaning-making interactions.
Due a very low presence of social services and advocacy-oriented NGOs in Russia, most people with disabilities build connections with other disabled people in virtual spaces. Social media platforms open up new opportunities for breaking the barriers in communication. I targeted a Russian social media website “Vkontakte” by posting a recruitment flyer on pages that indicated their focus on women with disabilities. I found my first Skype interview participant
(discussed in the next section) through the website Agency of Social Information (2017) that told her story and her involvement in disability advocacy. The agency covers the work of non-profit organizations in Russia and provides information resources. I also emailed local disability
75 organizations. Some of them responded, but some did not. Personal contact certainly proved to be the best approach.
J. Research participants
The final group of research participants consists of fourteen (14) mothers with physical disabilities. Patton (2002) argues that convenience sampling is the least desirable because it is neither purposeful nor strategic. Purposeful sampling, according to Patton (2002), can be defined as “selection of the information-rich cases for study in-depth. Information-rich cases are those from which one can learn a great deal about issues of central importance to the purpose of the research, thus the term purposeful sampling” (p. 230). However, when the research is transnational and when it involves hard-to-reach population, convenience, and purposeful sampling can coalesce. In other words, although a convenience of my contacts allowed me to access certain people in the targeted group, I can still consider them as being part of purposeful sampling because by the virtue of belonging to hard-to-reach population, these individuals’ accounts present a particular value.
Faced with time constraints for finding the participants for the study and taking into account the accessibility challenges of the location, I included an option for conducting interviews over Skype/phone. Online interviews are recognized as one of the tools for reaching people that are less physically mobile, that are socially isolated or living in dangerous areas
(Deakin & Wakefiled, 2014). The technological shift meant that I expanded the borders of my research to include interlocutors from other cities of Russia. As I mentioned earlier, regional changes are not as poignant in Russia, especially within the administrative borders of the cities.
The smallest city that one of the participants was from has a population of 150,000 people.
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The discussion of the sample size and overall rigor is related to the discussion of generalizability. The study that I set out to do is exploratory, which means that the nature of the study is to indicate rather than conclude (Crouch & McKenzie, 2006). Such studies “formulate propositions” (Ibid), or convincingly demonstrate them. In the context of exploratory research, each case can lead to new insights and depth. For this depth to be achieved, it is much more important for the research to be intensive, rather than aim to be extensive through enumeration.
Generalizability can be partly achieved through a transparent discussion of the research steps, not through the claims of exhaustive conclusions provided by the research participants.
Related to the issue of generalizability is an issue of saturation. O’Reilly and Parker
(2012) suggest that although saturation has become an indicator of quality, researchers tend to associate it with a sample size rather than with a discussion of why that sample size captures saturated data. They offer a paradigmatically different approach to thinking about saturation, not as a finite result, but as a process. They argue the uniqueness of each life makes it nearly impossible to reach saturation because there will always be new things to discover. However, saturation is one of the important indicators of rigorous research. Although there is no one-size- fits-all when it comes to reaching data saturation, Fusch and Ness (2015) conceptualize it not in terms of sample size, but in terms of depth of data that reached the limit of recurring theoretically rich themes. Some of the ways to achieve data saturation that are applied in my research are the inclusion of diverse group of participants and the consistent use of the interview protocol (Guest et al., 2006).
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K. Semi-structured Interviews
Each interview was preceded by the description of the project and a small talk that inevitably brought up the reason for my interest in this project. I discuss the ramification of self- disclosure further in the chapter.
Gaining informed consent might be difficult in the case of cross-cultural research
(Liamputtong, 2010). The decision to acquire informed consent verbally stemmed not from the fear that the research goal or the benefits and risks might not be fully understood by the participants. Instead, it stemmed from culturally sensitive knowledge about cultural connotations that associate any paperwork with bureaucracy that inundates the life of a person with a disability in Russia. The language of the research protocol was official enough to evoke such association. To avoid this negative association and to build rapport with the participants, I requested the ethics board to grant me permission to record the consent using the voice recorder.
I was also concerned that some participants might think that signing informed consent was equivalent to signing away their rights mainly to protect the researcher from legal responsibility
(Liamputtong, 2010).
The interview questions revolved around the perceptions towards motherhood, the daily experiences, the presence of other people in a woman’s life. The questions were constructed in a way that do not automatically imply the inherently challenging nature of mothering with a disability to make sure the participants’ accounts are not influenced by these views.
Most of the face-to-face interviews were held in public places (i.e., cafes, playground in front of the house, participants’ workplace). Two participants invited me to their homes because it was challenging for them to go out. I kept field notes throughout the process. Below I will describe some of the ethical and other considerations in conducting this research.
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L. Translation
Language can be viewed as a reflection of the cultural features of a society or a social group. It conveys understandings and assumptions held by a socio-cultural group. Such unique role of language in constructing the understanding of the culture cannot be underestimated in qualitative research. Al-Amer et al. (2014) questions the invisibility of translation in discussion about qualitative research and considers it vital for validity of data and analysis in general.
Translation is more than just a technical skill; in addition to finding linguistic equivalents in different languages, it is also a work of interpretation that intends to explain culturally specific meanings into a different language. One of the main challenges with translation is congruence, that is the agreement and consistency of the source and target language. Such agreement is often difficult to achieve during translation due to a range of possible interpretations. Translation is as much part of the research process, as the actual data analysis. It is argued to be imbued with power because capturing the content is a form of interpretation (Wong & Poon, 2010).
In addition to the technical aspect of translation, its ethical component is not less important. What does it mean to be both a researcher and a translator? What kind of negotiations are taking place when both of these roles are combined? I recognize the complexity of ethical dilemmas entangled in these questions. Although I do not offer solutions, I advocate for transparency as a way to move the conversation about the invisible side of the research process.
To ensure translation validity, I asked a graduate student who is a fellow University of
Illinois student and a native Russia speaker with several years of experience of teaching Russian to perform a back translation of portions from the interviews to make sure there are no major discrepancies. Translation/back-translation is recognized as being a substantial source of language transparency (Behling & Law, 2000). Ideally, the way to validate the translation is to
79 consult with the participants, however, none of my research participants speak English. Below is an example of some of the translation related challenges. Some of the words require an understanding of the cultural context. For example, the term “a pregnant woman of an older age”
(starorodyaschyya) is a term that is slowly fading away from the Russian medical lexicon but it is still occasionally used. It refers to women who are giving birth after thirty (30). Not only is the age associated with more health problems that an expecting mother with face, it also carries a negative connotation of a woman who waited too long and who is thus irresponsible. Such views are less prevalent now. In one of the chapters, I explained an etymology of the word “married” in
Russian. It refers to “being behind your husband”. This meaning is relevant to one of the participant’s account of the support she receives from her husband. One interesting aspect of the
Russian language is that sometime people can use “we” when they actually refer to “I” or
“he”/”she”. “We got pregnant” was a way for one of the participants to refer to her pregnancy and include her husband as an indicator of his level of involvement. Similarly, the phrase “We would not be able to pour a soup into a plate” captures a sarcastic reference that one of the participants makes about her son who is described as not very independent.
M. Data Analysis
My research was driven by interpretive induction as it is inspired by the exploratory research. Distinct from inductive analysis that characterizes the grounded theory (Patton, 2002), interpretive induction approaches a problem from the perspective of theoretical sensitivity to existing concepts, ideas, and theory (Kuczynski & Daly, 2003). The process is described using the following metaphor:
The explorer is motivated and guided by theories, beliefs, and suggestive leads from previous explorers about the nature of the world and, so equipped, sets out on a voyage of discovery. (Kuczynski & Daly, 2003, p. 383)
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To apply this metaphor to my data analysis, I kept my conceptual framework in mind, however, I was also very open-minded about where my data will take me. There were some expectations based on the existing research, however, there was a willingness to modify initial research questions. For example, the final empirical chapter on claiming spaces is an example of letting analytic induction lead me.
The coding process was driven by thematic analysis (Braun & Clarke, 2006). One of the features of this method is that it is contextual in nature. In other words, this method acknowledges the ways in which individuals make meaning of their experience (in accordance with a feminist methodology) but also recognizes the ways in which the broader social context impinges on those meanings (in accordance with a critical discourse analysis).
All the interviews were transcribed verbatim. The coding was conducted with the Russian version of the interviews. I have not translated the interviews in their entirety into English.
Instead, I translated the sections that were part of the original codes. I started with descriptive coding and then moved on to more analytical codes.
My theoretical framework informed my interpretation of the data. It allowed me to hone in on data without forgetting a big picture. After doing a first round of coding, I reiterated the process to identify more unifying codes. When it was time to develop the themes, I went back to my data and realized that my analysis should be supplemented with contextual analysis that might even require me to explore a deeper level of the participants’ accounts in the context of the dominant narratives that their accounts often fell into. The need for this process of digging deeper became apparent when I was working on my third empirical chapter about making claims. Below is a map of the initial themes and subthemes that lay the foundation of my analysis. The theme of supports has not changed from the moment of the initial analysis,
81 however other themes were refined in the process of my engagement with scholarship on subjectivities and the discursive nature of experiential knowledge. Three major themes lay the groundwork for all my empirical chapters.
The quotes associated with the themes that emerged after the first two rounds of descriptive and analytical coding in all the interviews were combined in separate documents.
After another round of close readings, the themes were refined. This time my conceptual framework of reproductive citizenship gave me the vocabulary to rethink the themes. For instance, my deeper engagement with the literature on citizenship revealed that “subjectivity”, not “identity,” is at the center of major debates within that body of scholarship. Literature on care has also helped me solidify the themes around support system.
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Figure 1. Preliminary Data Coding Doctors' fear to take responsibility Reacting positively to a negative attitude
Motherhood as an essential part of being a woman Responsibility Self-advocacy
Providing the best for
the child/preparing Fear of passing for the future disability to a child Asking for help
Supports
Help from family Identity Disidentification and friends
Policy Individualized Invisibility of help Foregrounding a (maternal nature of (grandmothers) mother identity capital and attitudinal disability Motherhood as a barriers motivation for benefits) personal growth Responses to barriers (agency) Housing/car Self-reliance
Femininity Professional Connections Popular psychology
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The themes of responsibility and responses to barriers were combined and reconceptualized in terms of agency and belonging to reflect on the ways in which mothers with disabilities rationalized the attitudinal barriers they face. The visual serves to demonstrate the initial stages of thinking through the themes.
N. Insider-Outsider
I find the ethical component of what it means to exist in both worlds the most daunting.
How do I build rapport? How do I decide what is the most important thing the interviewees need to know about me as a woman with a disability who grew up in Russia and about me as researcher from the US university? Do I stress the former and downplay the latter? Is it ethical?
If the value of both my insider and outsider personas are equal, then how do I make sure that my distance from home does not create distance between me and my participants?
Am I even an insider or an outsider in the field? Bourdieu (1990) in his Logic of Practice disrupts this binary and argues that we can never be one or the other. As a woman with a disability who was born in Russia, who speaks Russian, I can be a perfect insider. But to assume that is to essentialize myself and not think of multiple markers of my identity that might not let me relate to my participants at all. For example, is my not being a mother forecloses opportunities for different insights from the research participants? In a way, there is always an outsider within.
In one of the interviews when I was telling about my experience of disability, I briefly mentioned that I have a prosthetic leg and that I became an amputee at the age of twelve following a cancer diagnosis. I remember my interviewee expressing empathy; her body language (face expression and the way she nodded her head) suggested she “felt for me.” To a certain extent, my disability legitimized my position at that place and time. In addition, my
84 cultural affiliation with the women as someone who grew up in the same city and spent most of their life there created a sense of being close to home. But does that proximity have limits? I argue that it does through shifting positions along insider-outsider continuum.
I could immediately relate to some of the disability experiences shared by the interviewees because I lived them. One of the weaknesses of such relationality can be an unquestioned acceptance of this experience of which I was very aware. My different positionalities certainly contribute to the kind of interaction I have with the interviewees. I tend to agree with an observation that for each of the ways that being an insider enhances the depth and breadth of understanding of the population, new questions about objectivity, reflexivity, and authenticity of a research project are raised (Dwyer & Buckle, 2009). To disrupt the dualism embedded in this dilemma, I want to challenge the identity-based understanding of insider- outsider status. What does belonging mean – an absolute acceptance or a conditional and context specific potential for a connection? Intersectional approach to research that posits the complexity and multiplicity of experiences and identities suggests a continuum of insider-outsider status and rejects a simplistic alignment along certain identity markers.
What about the role of passion and an internal driving force of social justice that underlie the research of so many scholars in disability studies? Can we draw parallels between the emotional proximity to research and the identity-based proximity? I raise these questions to further problematize the research driven by the field committed to social justice and examine the issues of the researcher’s role that often remains invisible. The next section discusses reflexivity that can start addressing these questions.
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O. Reflexivity
Reflexivity involves reflection on self, process, and representations; it examines power relations and politics in the research process as well as the researcher’s accountability in data collection and interpretation (Sultana, 2007). Reflexivity allows us to be aware of power imbalances and differentials and prevents us from taking research that involves interaction with and/or observation of other people for granted. What does it mean to be aware of the process of situating oneself and recognizing the way knowledge is produced? I would suggest that reflexivity allowed me to pay attention to the details that might pass as insignificant.
I realize that by mentioning my own disability as part of introducing what I was doing, I was not trying to decenter my participants and draw attention from them. Such attempts to turn the focus onto the researcher is one of the criticisms of reflexivity (Rinaldi, 2013). However, I saw sharing my story as a way to establish rapport and build the commonality, at least, in the initial stages of recruitment and facilitation of communication. As someone who is conducting research by representing a foreign institution, I was conscious about the way I would be perceived.
It would be dishonest not to recognize that a more obvious common experience of disability seemed like a necessary step for demonstrating why I am grounded in this topic and why I find it important. It also felt that I needed to talk about my experience of disability even if it meant a partial reliance on the medicalized explanation of what happened to me.
However, strategizing disability disclosure does not make disability the defining factor in building the dynamics between the researcher and the participants. Whether we proactively decide to disclose or not, researchers’ social and personal identities are significant during the interviews – from our presumptions, values, experiences, to our vulnerabilities (Brown &
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Boardman, 2011; Tregaskis & Goodley, 2005). Disability is always perceived differently, and to assume that it becomes a marker of shared identity is to totalize this experience and neglect the complexity of our subjectivities. Sharing the experience of disability, specifically growing up with disability in Russia, facilitated rapport, however, inequalities of power did not dissipate.
P. Limitations
The study has a few limitations that are unavoidable due to the exploratory nature of this research. In discussing these limitations, I am also addressing what measures I took to address them.
• Little time for fieldwork. I had around three months to collect the data. The data
collection took place in the summer and had to be completed before the beginning of the
school year. I tried to address this limitation by keeping the field notes. Observation was
not part of the methods used, however, I consider the discussion of the research process
from the description of the participants to the kind of social dynamic that existed during
the interview to be part of the contextual richness.
• Selection bias. There is always a concern that individuals who volunteer to participate in
the studies are a priori more active and that their experiences will differ from those who
do not respond to the request. I think that a variety of ways I used to recruit (through a
gatekeeper and social media) helped address this limitation.
• Difficulty following up with the participants. Some of the following up was done via
social media. The opportunities for follow-up interviews were limited due to an 11-hour
time difference between Omsk and Chicago. As a way to address this limitation, I am
planning to write a short summary of my research findings in Russian and share it with
my participants.
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• No participants from rural areas. The experiences of disability in rural areas are shaped
by the lower level of availability of social services and more limited economic
opportunities. Researchers emphasize the importance of rural contexts for providing a
more nuanced understanding of disability in both Western countries (Bryant & Pini,
2010) and in Russia (Kokovina, 2016). People living in rural areas are generally harder to
reach, and expanding the scope of disability research to include the rural areas is the next
and logical step of future research.
• Transferability and focus on women with physical disabilities. The research participants
includes only women with physical and sensory disabilities. Inclusion of women with
mental and intellectual/developmental disabilities would facilitate a broader scope of the
research and transferability of the research findings. Transferability occurs when the story
of the research resonates with the readers in a way that suggests an evocative feeling
(Tracy, 2010). Transferability is not equivalent to repetition expected in quantitative
research (Delmar, 2010). The study design and the research questions will be different if
the research subjects are women with mental/developmental/intellectual disabilities. It is
related to the continuing experience of institutionalization and forced sterilization that
these individuals experience. Despite the seemingly different social locations of these
women, “there will be typical traits and recognizable patterns…It is this recognizability
that contributes to the ‘generalizability’ of qualitative studies” (Delmar, 2010, p. 122).
Related to this recognizability are two considerations: (a) how closely the participants are
linked to the context being studied; and (b) the contextual boundaries of the findings
(Jensen, 2008). The analysis that accompanies the participants’ accounts demonstrates the
contextual proximity to the stories. As for the boundaries and inclusion of mothers with
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mental/intellectual/developmental disabilities, future research needs to engage with the
histories of institutionalization and interrogate the issues of gender within this context.
Q. Conclusion
This chapter focused on the epistemological foundations of my research analyzing the contribution of qualitative exploration, intersectionality, and feminist disability studies. It discussed the mechanics of accessing the filed in cross-cultural contexts and the challenges associated with it. I explored sampling procedures and the opportunities that virtual spaces create for conducting research with hard-to-reach population. I also discussed the ethical dilemmas of being an insider-outsider and the ways in which reflexivity can engage with the procedural aspects of research. Finally, I discussed limitations that exploratory research inevitably has. The next chapter will set out to explore the contestations of subject positions of mothers with disabilities along disability – motherhood continuum.
V. AMBIVALENT SUBJECTIVITIES
A. Introduction
By introducing the concept of ambivalent subjectivities, this chapter will focus on the fluidity of how we construct our subjectivities and the contextual factors and discourses that prevent subjectivities from being solidified. Even though the chapter is divided into two separate discussions of motherhood and disability, I do not view them as separate. One is always present in the theorization of the other. In the spirit of intersectionality and the belief that we cannot be reduced to a category, I am reluctant to bifurcate motherhood as something that exists outside the disability, however, I will demonstrate that depending on the context, a specific way of constructing your sense of “I” is more prevalent than the other. In answering the question about the ways mothers with disabilities construct their sense of self, I will focus on the multiplicities of subject positions and their instability depending on the value associated with the position. The chapter seeks to answer the following question:
In what ways do mothers with disabilities construct their sense of self?
The meanings of motherhood have been a prevalent theme in disabled women’s narrations necessitating a deeper interrogation of the role of motherhood in disabled women’s lives. Feminist literature has contested maternity as an essentialized experience that naturalizes what it means to be a mother and a woman. Looking at subjectivity through the prism of disability brings forward the embodied nature of subjectivity. When the motherhood is mythologized and reduced to narrow conceptualization of acceptable motherhood, mothers with disabilities “find themselves in an acutely difficult position, striving to be fully acknowledged as persons rather than a set of mythologized, vilified body parts” (Mintz, 2007, p. 138). I will argue that as much as motherhood with a disability is a transgression that pushes against an ableist
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90 understanding of motherhood role, it can still be conceptualized in essentialist terms by mothers with disabilities. By foregrounding the context, I will explain why that might be the case.
Reconciliation of motherhood with disability is a challenge when an intersectional self remains invisible in the public discourse and when one subjectivity (motherhood) is valued, whereas the other one (disability) is not. I will interrogate this dichotomy and the negotiation of the disabled subjectivity in the context of compulsory able-bodiedness and heteronormativity
(McRuer, 2006). Disability is highly relational and is understood through women’s relationship with other people and structures. Disability is not thought of in the same essentialist terms that are used to define motherhood. Yet, such range of meanings and contestations is what pushes the boundaries of motherhood and makes it less stable.
Citizenship has long been understood as not only the status but also the process. This process is identified as a relation of belonging to specific communities, or as a set of social practices that define the relationships between peoples and states and among peoples within communities (Lister, 1997). Conceiving of citizenship as both status and practice renders it a useful category for unearthing the dualities and contradictions of belonging and exclusion. It also serves as an entry point for understanding subjectivity produced by both discursive and experiential dimensions of citizenship (Canning & Rose, 2001). I suggest that motherhood with a disability is a basis for claims-making that links experiential and discursive dimensions of citizenship. Mothers with disabilities appropriate different subject positions in relation to other actors and practices for the purpose of challenging and redefining the boundaries of citizenship.
By relying on the discursive instruments of reproduction and nation, mothers with disabilities push against the reified notions of motherhood and womanhood. In theorizing the need to focus on subjectivities, Canning and Rose (2001) explain that the philosophical and administrative
91 framings of citizenships are important for understanding the formal rights and obligations, however, it is the process, not the status, that helps the marginalized groups challenge the entrenched prescriptions and delineations of citizenship. The notion of subjectivity is both individualized and collectively invoked. The experiences of mothers with disabilities demonstrate that citizenship contains the personal and the psychological dimensions. On the other hand, these experiences are always informed by the ways discourses about citizenship collectively embody citizens by gender and ability. Subjectivity’s collective aspect is also constituted in the relational dimension and in being able to create a sense of self through connecting to other people.
B. Constructing the Mother
O’Reilly (2010) argues that modern motherhood continues to function as a patriarchal institution which is “largely impervious to change because it is grounded in gender essentialism, a gender ideology that establishes a naturalized opposition between public and private spheres”.
It is not surprising, then, to come across an essentialized notions of motherhood in the accounts of most of the participants. Motherhood is associated with a life-changing experience that is essential in the process of becoming a woman. Some participants noted character changes that they experienced with motherhood.
It gave me more confidence. When you see that a baby depends on you both physically and emotionally and that you manage not worse, maybe even better than everybody else, then yes, it certainly gives me more confidence. (Evgeniya)
Evgeniya got pregnant about a year after her injury. She remembers the time after the injury as being challenging for her self-confidence. Her decision to become a mother has become a way for her to regain that confidence. Motherhood is associated with a “valued social role” that can give back a sense of control over life (Dorsett, 2010).
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Most of the women I talked to impart a special meaning to motherhood in their lives.
They define it as an essential part of who they are. They equate motherhood with a lifetime purpose. In the environment where motherhood is understood as a hallmark of being a woman, disabled women who are excluded from it have to question their social location (Walsh, 2011).
In thinking about the stakes of motherhood for disabled women, we cannot neglect the histories that deny them not only the right to be a mother but oftentimes a basic personhood. In light of the histories that still linger and continue to affect many women with disabilities, especially women with psychosocial and intellectual disabilities, unpacking the meaning of motherhood for the participants of this research cannot be explored solely from the point of view of patriarchal motherhood. Instead, the lived citizenship of mothers with disabilities allows us to recognize the moments of agency-driven fractures in the dominant discourse and fluid positions. Walsh (2011) demonstrates such fracture by reclaiming the right for her body to have power. She says,
I want my body to have “power” in the sense that I want to struggle with cultural rights of passage such as childbirth. I want to struggle with those choices embraced in my body, not through the separation of myself from my body, not in the erasure of the “disabledness” of my body, but with it. I want my body to have the power of choice, of discernment, of experience. (p. 86)
Walsh identifies embodiment as a starting point for rethinking what it means to conceptualize disability and motherhood in tandem. Even hypothetical motherhood should be an option. Before we start questioning the underlying notions of compulsory heteronormativity that accompany the dominant discourses of motherhood, we first need to get to the point of incorporating disabled body into that discourse. In other words, if disabled women are not part of the motherhood discourse, how can we start challenging it? I argue that such negotiation is only possible through recognition of the regimes of silence around sexuality and intimacy that are suppressed by the official discourse of procreation and family values (Kondakov, 2014).
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The silencing around sexuality of disabled people is often presented as frivolous and inappropriate in the environment of more “serious” problems that disabled people face
(Mladenov, 2013). In other words, sexuality is excluded from the political project that makes it a prerequisite for social change. Yet, silences may signal a potential for other words to emerge, they can be generative (Shildrick, 2009). It was not surprising not to hear any narratives about sexuality from the interviewees because motherhood and family discourses exist in strictly delineated traditionalist domains in Russia. Despite a variety of different models of femininity in post-Soviet Russia ranging from working mother and housewife to sexualized femininity, these models are similar in that they appeal to biologically determinist practices of citizenship
(Temkina & Zdravomyslova, 2003). In her research on disability in Ukraine, Phillips (2011) confirms that women’s sexuality is never directly mentioned in media coverage of disability issues; rather, any allusion to disabled women’s sexual lives is channeled into consideration of childbearing and motherhood. All the interviewees kept strictly within such frame. In fact, one of the participants, Maria, who mentioned that being a lover is one of her husband’s roles apologized to me for mentioning that and thus implied the impropriety of not only the discussion of sex but also the very hint of its discussion.
Instead, Maria talked about her experience of growing up in a loving family. Her mother had the same kind of vision impairment that Maria has. It is her mother’s example that inspired
Maria. The special school for the blind that she attended taught her the skills to be independent.
Maria who is a head of the district branch of the organization for the blind projected confidence during the interview. Motherhood was never a matter of doubt and consideration for her, it was a matter of time.
There was no question whether I can be a mother because of my disability...To be a mother means everything... What’s life without children? (Maria)
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Maria added,
The very feeling of being pregnant...I was approached by strangers during my pregnancies, and they told me “You are posing yourself as if you are the only pregnant woman in the world, as if they were no pregnant before you and there will be no pregnant women after you”. (Maria)
By projecting pride in being pregnant, Maria emphasizes how unique it feels. For her, marriage was not just a regular phenomenon, but something that is truly special and something that she can be proud of. The event of becoming a mother and having a child makes it possible for women with disabilities to draw other people’s attention away from their disability. In a way, the child makes it possible to “become known”, not as a disabled woman, but as a mother (Grue &
Lærum, 2002).
A significant number of women talked about the essential nature of motherhood for women.
I think that every woman should give birth. Unfortunately, doctors don’t want me to have a second child, but I am dreaming about it. All women are born to have children. (Lidia)
Alina expressed a similar thought,
I think if a woman does not give birth, she will not experience the beauty of this life as a woman. (Alina) It is notable that a biological aspect of motherhood rather than a social one is stressed.
However, one participant did not agree with the idea that motherhood is for all the women.
Indeed, how much motherhood becomes a way for disabled women to prove their capacity and capability as mother?
I don’t think that motherhood is for everyone. If it didn’t happen, I would own a fish, no big deal. I’m happy it did happen, not all women should be mothers, not everyone are good or mentally stable. Life is diverse, I’m thankful to God it happened. If I didn’t have her, I would have a different life. (Galina) Galina draws alternative futures for herself that are not tied to motherhood. She recognizes that her personhood is not contingent on her becoming a mother. In her essay
95 exploring the cultural perceptions around disability and motherhood, Walsh (2011) reflects on the conversation with her friend who questioned her hypothetical plans of becoming a mother by suggesting that it would be “a mayhem” should she decide to give birth. Walsh raises two important questions. First, what does it mean when society cannot imagine a motherhood with disability? Second, how much is disabled women’s desire to become a mother driven by the demands of culture that expects women to be mother and how much is it an independent choice?
Answering this question in the context of disability becomes challenging because both factors can play a role. As I demonstrate in this dissertation, the said (personal experiences) and unsaid
(discourse) are equally powerful. However, we cannot avoid the idea that there is a certain pressure to gravitate toward a more socially desirable status. As Blackwell-Stratton et al. (1985) argue, women with disabilities often find themselves in a state of diminished societal expectations, or “rolelessness”, that might create pressure to identify with a more valued role.
1. Independence discourses
The ideology of maternalism/essentialism has been used to persuade women that they are destined to become mothers. This ideology is further used in reproductive policies with a larger goal of addressing the national demographic concerns (Hoffmann, 2000).
In my interviews, most of the women discuss motherhood as part of who they are as women operating within a dominant rhetoric of pronatalism, however, disability complicates their account by adding a degree of contextualism and relationality that help them make sense of their experiences.
Most of the women in the interviews emphasized the importance of carrying out the tasks traditionally associated with being a wife and/or a mother independently. Independence within home is viewed as an indicator of enacting the role of mother. The negotiation of dependence
96 and independence is more complex for mothers with disabilities. In the public arena, they experience more challenges in achieving independence (Malacrida, 2007) due to multiple barriers, both physical and social. Domestic sphere is the space where mothers are expected to fit the heteronormative ideal of nurturing mothers. The pressure of idealized motherhood is additionally fueled by the assumptions about the inadequacy and inappropriateness of disabled mothers (Ibid) making it difficult to ask for help when it is needed. The ways the interviewees discussed the importance of doing everything independently is narrated through their sense of self as a mother rather than through the care and support narratives. For them, independence in the domestic space was not a matter of contestation but something that aligned with their femininity and motherhood.
Svetlana reflected on how she found it important to do everything independently. The independence she discussed revolved around the housework, a domain that remains heavily gendered. The insistence on doing all the housework as a disabled woman without having to rely on someone’s help suggests the embeddedness of traditional gender roles irrespective of the woman’s disability. Svetlana’s living situation is different from the rest of the participants: she lives in a house (rather than an apartment, which is more common for urban Russia) with no amenities. Her living situations makes it by default more challenging for her to be independent, however, she simply does not imagine things to be any different.
(After acquiring disability) I still cleaned, tried not to burden my husband, wash the floors myself, I was just looking for ways that could help me do those things. I got a special mop, paid more attention to my wheelchair making sure it’s light. You do the same things, but they take more time. You end up being busy during the day. (Svetlana)
Nadezhda further emphasizes the importance of the independence within home by making a comparison to her own childhood. She does not think it is fair to ask her children to help her even though she has a disability. Disability does not change the rules.
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I think I am not a very good mom because I don’t like making my children do anything. I try to do everything myself...Nobody made me, and I’m not making anyone. (Nadezhda)
A more detailed exploration of what is behind this eagerness to be independent and the reluctance not to rely on anyone else is needed. Oxana associates it with the fear that inability brings.
The scariest thing for me is the thought that I can’t do something. That’s why I do everything I can, I do everything. (Oxana)
The narratives of independence within what can be viewed as a hierarchical and dependent environment where the private space becomes the epicenter of invisible labor can be analyzed differently from a disability studies perspective. Disabled women who have long been excluded from the norms of femininity and sexuality might see an approach that positions women as naturally belonging to the private sphere as an opportunity to claim that space. In the context of highly inaccessible public spaces in Russia and the discourse that normalizes women’s role as ‘a guardian of the hearth’, the claim for private spaces is an attempt to rebuild one’s identity and confidence as a woman.
2. Feminine Subjectivity
A majority of the participants discussed not only the importance of self- sufficiency when it comes to carrying out most of the tasks, they also brought up femininity either as something they had to discover again through involvement in certain activities (i.e., dancing) or as a way to counter disease and/or impairment. The latter was discussed in terms of an outside influence. One of the participants who has an unapparent disability asserted that her disability never made her question her femininity that she associates with the attention she is getting from men.
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Gradskova (2007) argues that regulations of beauty and maternity played a particularly important role in shaping femininity in the Soviet Union. Beauty during that period was performed through the discourses of aesthetics or taste, functionalism, hygiene/health, modesty.
These discourses were institutionalized through the practices of uniforming, centralized distribution of goods, queuing. Although the enactments of beauty regimes changed with the introduction of free market reforms, the interconnectedness of beauty and motherhood discourses remained. Instead of analyzing femininity as an indicator of oppression, Markowitz (1995) suggests that “while on one hand the values and practices of femininity (in the early 1990s
Russia) may unwittingly serve to perpetuate the status quo and thus women’s exploitation, on the other hand, femininity, as women’s mandate to bring beauty and light into an otherwise glum and desperate situation, operates as an avenue for women’s self-expression” (Femininity as resistance Section, para. 5). The culture of hyper-femininity in Russia (Rudova, 2011) creates fantasies (Porteous, 2016) and ideals that are impossible to reach. The fantasies of feminine beauty are deeply engrained in the able-bodied tradition placing disability in opposition.
However, by rejecting the fixed and binary theorization of the body and femininity and by thinking of it in terms of fluid subjectivities (Inahara, 2009), we can provide some space for expressing difference and for opening up new possibilities for all embodied subjects. This creative expression of subjectivity enabled mothers with disabilities find manifestations of femininity that are not reduced to corporeal domains.
Several of the participants I had in my study knew each other through the integrated dance program. The program includes disabled female dancers who are paired with non-disabled male dancers. In other words, the program is built along the traditional heteronormative binary.
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Galina is involved in the program. She finds that participation in the program gives her a different sense of herself and makes her more feminine.
(Dancing) is about beautiful movements, you are beautiful, have a makeup on, you are a queen. My husband likes to see me like this. Not that I am shabby in everyday life, but here I’m truly a queen. (Galina)
Olga discusses the search for her femininity. She acquired her disability in childhood, however even after her marriage and childbirth she was still trying to determine whether she is feminine enough. Olga views femininity as an important component of who she is. After many attempts to reconcile her disability with her pursuit of femininity at the increasingly popular in
Russia psychology trainings, Olga convinced herself that such trainings were not necessary and she simply needed to remember that her biological sex already made her feminine. The business of psychological trainings and self-help groups has become very popular in Russia in recent years. Russians are engaging with popular psychology of self-help as a technology of the self
(Salmenniemi & Vorona, 2014). Olga feels empowered that her self-realization was the result of the internal work rather than an influence of trainings that focus on fixing one’s embodied self as part of the personal project of self-governance. However, this project hardly challenges the very structures that create the standards of femininity (Sothern, 2007).
I was not looking in the right place (referring to the psychological trainings Olga used to attend), I am apriori feminine, I am a woman, I was born a woman, it is natural. However, it is hard to accept yourself “How can being without a leg be considered beautiful?” (Olga)
One of the participants Oxana does not only talk about self-perception, she also discusses the expectations of femininity within the medical setting. Cancer has very specific gender discourses around it. The image of boldness and paleness disrupts an image of what it means to be feminine. Oxana recounts that during her cancer treatment, her male doctor insisted on his female patients to wear wigs and makeup. Oxana expresses her support for this initiative arguing
100 that insistence on promoting a traditional form of femininity becomes a way of lifting the spirits of the patients in general. This act is supposed to return a sense of normalcy to the lives of the female patients. This act is also seen as reaffirming in a sense that disability does not take away from one’s “original” identity. The connection between womanhood and femininity is deeply embedded in the Russian culture. It seems that from the doctor’s perspective, illness should not be an excuse to divert from one’s femininity. Oxana sees the doctor’s actions as an act of affirmation of her femininity rather than an intrusive imposition of his views about who is considered beautiful. The authority associated with a medical profession gives more weight and legitimacy to the doctor’s initiative. In the environment where patients are expected to take more initiative in dealing with the medical system and when the doctors tend to be characterized as negligible, inattentive, indifferent, and callous (Rusinova & Brown, 2003), such engagement with the patients is understandably gladly embraced.
And he (the doctor) would come every morning and we (patients) would put on the wigs, he made us all buy the wigs and put makeup on. And he would come to check whether we had makeup on or not. If someone didn’t, he would not come in until it was done. He used to say, “A woman should always remain a woman no matter what the circumstances are”. (Oxana)
The doctor’s actions can certainly be critiqued from a feminist disability studies perspective. Garland-Thomson (2002) contends that the medical commitment to healing coupled with modernity’s faith in technology and interventions that control outcomes has increasingly shifted toward an aggressive intent to fix, regulate, or eradicate ostensibly deviant bodies.
Because women with disabilities often struggle to have their sexuality recognized, disability both intensifies and attenuates the cultural scripts of femininity. In her analysis of make-over programs for women who had breast cancer, Kendrick (2008) concludes that cancer is seen as a
101 threat to the able bodied, heteronormative femininity where the recovery of a feminine appearance is central to recovering health.
C. De-essentializing Motherhood
Along with more essentialized accounts of motherhood, women construct their sense of self in response to the circumstances in their lives signaling the inherent instability of subject positions. Not all women planned a child. When asked about the decision to become a mother, some women responded that they “just happened to get pregnant”. The expectations for women to get married and have children are embedded in the Russian culture. The idea that you simply fall into marriage and motherhood is closely connected with the social expectations. Marriage and children are discussed as constitutive of each other to suggest that childbearing is an integral part of marriage. The official discourse not only entrusts married couples with a set of functions that include childbirth, child-rearing and children’s socialization, it also defines such families as
“fortunate” (blagopoluchnaya) (Shpakovskaya, 2012), compared to people living as common- law partners, single mothers, and others who fall under this arbitrary definition of “fortunate”
(Iarskaia-Smirnova, 2010).
Olga who is a successful Paralympic athlete now was getting her undergraduate degree when she met her husband and married him. She reflects on her marriage as something that she rushed with. There was a sense that she needed to prove to herself and to everybody else that as a disabled woman she can be desired and she can get married. Olga sees her first marriage as a response to the outside pressure and internal sense of insecurity that she felt.
I got married and started the relationship as a sweeping move with no self-consciousness. I wanted to be ahead of time. It seemed as if I didn’t reach a certain milestone, it would get quiet and calm. That is why I was rushing...My mom had an influence, when I got pregnant, she didn’t tell me to go and do the abortion. (Olga)
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This decision to get married can be viewed as part of the overcoming narrative of having to prove that disability needs to be compensated. Olga discusses marriage as one of the benchmarks that needed to be reached. As Olga confessed later, treating marriage as a benchmark she needed to reach left her no room for critical engagement with the question of whether it was something she wanted.
Evgeniya shares a similar experience of not intentionally looking to get married.
I simply lived, studied, I needed to reach certain goals. I was into sports. I never planned for or dreamed of starting a family. It simply happened. (Evgeniya)
Olga was reflective about mothering and how it is approached in Russia. She commented that marriage is something that is simply expected. She emphasizes the importance of questioning the taken for granted assumptions. Furthermore, she is somewhat sarcastic about the way women with disabilities are dismissed as having no chance to get married. Olga echoes
O’Toole (2002) who notes that “it is amazing that disabled women have sexual partners at all.
The cultural pressure against partnering with disabled people, whether you are disabled or not, is very strong” (Myths and assumptions Section, para. 16).
I didn’t have a feeling that I want this baby, that I want someone to take care of. I realize now that we need to talk about this with our children. We need to tell them what it means to be ready to get married or to have children. We don’t talk about these things in Russia. We are simply told “How come you are still not married?” And if you happen to be an amputee, then your life is considered to be over. (Olga)
Motherhood is certainly not viewed as all-encompassing in terms of the way women perceive themselves. Lidia acknowledged that professional fulfilment is as important in the woman’s life as motherhood. For Lidia, the lack of access to employment opportunities creates a sense of unfulfilled potential. Lidia was an “A” student in school and the university that she could not finish when her epilepsy worsened. The medical-social commission does not recognize her condition as a disability depriving her of both a disability pension that can help her support
103 herself and her daughter and the rehabilitation program that can include a provision allowing her to work with certain workplace modifications.
The lack self-fulfillment certainly affects me psychologically. I feel depressed once in a while. You realize that you are not needed by society. (Lidia)
Similarly, Irina nostalgically described her experience of working prior to her illness.
Irina was noticeably cheerful when talking about her time working.
I really enjoyed communication, traveling by train (referring to work as a shuttle trader). I am the kind of person who takes interest in all kinds of things. If it wasn’t for this illness, I don’t know where I would have been now. (Irina)
According to statistics, there are officially more than eleven million people with disabilities in Russia, and only fifteen percent of working age people with disabilities are involved in professional activity (Paryagina, 2007). Noonan et al. (2004) discuss poor rehabilitation outcomes for women with disabilities and links them to traditional gender role socialization leading to an emphasis on passivity and a sense of powerlessness; women with disabilities are disadvantaged when gender interacts with disability, as restrictive gender roles and low expectations based on disability lead to nonwork outcomes.
The women in the interviews defy the negative cultural stereotypes about mothering with a disability. They position themselves as individuals with a strong agency as mothers.
Essentialization of motherhood in these accounts does not have to carry a negative connotation.
Even if motherhood might be considered an indicator of a lack of choice, women with disabilities might find this role empowering (Lappeteläinen, Sevón, & Vehkakoski, 2017). Yet, although motherhood is associated with independence and femininity, there is a noticeable regret about the lack of other avenues for self-expression.
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1. The role of barriers
The experiences of motherhood cannot be separated from the processes that precondition it. Women with disabilities face obstacles in the form of physical barriers perpetuating the divide between the private and the public and confining mothering with a disability to the private realm. Subsequently, their subjectivity is contingent on what is doable in the context of barriers because they shift the essentialized understanding of motherhood and renegotiate what it means to be a mother. By foregrounding the context, we avoid simplifying the experiences of mothers with disabilities as only joyous and fulfilling and expose the tension of the ideal motherhood (Malacrida, 2009) as unattainable goal. The concept of barriers is broad and encapsulates not only physical but also attitudinal barriers. The latter will be discussed later in the dissertation in my discussion of belonging.
The feminist citizenship debate around the responsibility for care manifests in how socio- material spaces are organized. The socio-material spaces are at the heart of the social model of disability that places the onus for disabling environments on the structures, rather than on individuals with impairments. Freund (2011) suggests that by focusing on structure, one can move from asking what bodies can function in a particular context to asking what types of structures can accommodate the widest range of bodies. From individual bodies, we need to move to the “social body” and its materiality. Space is important because of how it constructs bodies and offers bodily possibilities and constraints. The body is not just a cultural representation but a lived experience. Socio-material arrangements can be seen as a given and as historical constructions that favor some, but not others. Mothers with disabilities find themselves excluded from most of the socio-material spaces that exist in what is traditionally perceived a public realm. The inaccessible schools and daycares, hospitals and playgrounds create an image
105 of acceptable and non-transgressive motherhood that does not imagine disability. The participants recognized the challenges and discussed accessibility in the context of the child’s needs and their daily routine.
The expectations of mothers being involved in all aspects of children’s lives can clash with the limits of socio-material spaces. Yana found it very frustrating that she could not be fully involved.
The only thing I find to be difficult is that I can’t access the local clinic, the school, or the day care. So I have to ask my husband. (Yana)
Similarly, Olesya discusses not only the inaccessibility of the places but also the lack of accessible transit. The pervasiveness of barriers limits the scope of the motherhood roles that can be performed by mothers with disabilities.
The biggest problem is the lack of accessibility in our country. I can’t go to a doctor with my child, can’t get into a daycare, school, park, children’s store and many other places. My city doesn’t have public transit that I could take. (Olesya)
The discussion of inaccessible spaces raises the discussion of policy priorities.
Inaccessibility dominated my conversations with mothers with disabilities in terms of barriers they face. In her Human Rights Watch Report, Mazzarino (2013) provides a detailed account of the numerous physical barriers that people with disabilities in Russia face. Accessibility creates a demarcation line between a private and a public space. Whereas motherhood in Russia is certainly confined to a private space, disability makes that separation even more poignant.
2. Seeing yourself through Children
When discussing what the role of a mother comes down to, most women see it as an intangible experience manifested in the love for the child, rather than a set of expected tasks.
The expression of motherhood embraces the emotional and less tangible aspects. In her personal account of being a mother with disability, Killoran (1994) captures it perfectly when she says,
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The ability to be a good mother does not reside in the ability to chase around after a toddler, nor in the ability to teach your child how to ride a bike… Being a good mother has to do with making sure your child has a strong sense of self-worth, and an appreciation of the wonders and abundance of life. (p. 122)
By constructing their sense of self through the relationship with their children, mothers with disabilities shape a deeply emotional model of mothering that disentangles it from the physical tasks based approach. Maria discusses the importance of nurturing the relationship with her children, the importance of reminding them that they are loved.
There is a good Jewish proverb or saying. Love, hug and kiss your children. Always tell them that they are the best, the most beautiful, the smartest. You will reap the benefits of that. My mom was like that. We were loved, hugged and kissed. I always thought that when I have children I will do the same thing. (Maria)
Having a special connection with a child is credited for having a potential to put the rest of the worries and challenges aside. In other words, challenges are balanced out by the emotionally rewarding experience of motherhood.
The most important thing is to love a child. The rest can be overcome. I think as long as you love him, as long as you understand him, that’s the most important thing. (Oxana)
Lidia associates having a child with transitioning to a new stage as a woman. The priorities shift, and the well-being of the child becomes of primary concern.
You realize that you are a mother and that you have a responsibility. Your status has changed. You are not just a girl, you are a woman with your problems. All the problems become secondary, all you care about if a child to be fed, be dressed and healthy. (Lidia)
Svetlana summarizes the essence of her relationship with a child by emphasizing the sacrifice that is unavoidable especially when a mother has a disability. This sacrifice might involve asking for help when it is necessary even if it goes against your rules. She suggests that even if asking for help means making yourself look vulnerable and lacking ability, you need to do it if it means your child will be taken care of. It becomes a difficult and, yet, needed negotiation between your own needs and wants and the ones of your child. Becoming more
107 disabled for everybody else in order to become able for your own child is at the heart of feminist disability studies dilemma of trying to combine selves that are perceived as dichotomous and contradictory.
Most of the interviewees see the relationship between them and their children as the type of relationship that is built on friendship and trust. They contrast it to what their own upbringing looked like and want to use a model that is different from the top-down type of upbringing that their parents relied on.
Olga relishes the special connection she has with her daughter. She looks back at the time when she did not have time or effort to develop this relationship because she had to worry about providing for the family. Olga feels that she has much more meaningful relationship with her daughter now.
Every time I come back from the competitions, well, I am not the kind of mom who will be nagging “Put on this, go do the dishes”. When I come back, we want to catch up and chat, we really miss each other when I am away, so it is only natural we want to spend this time in a more meaningful way. (Olga)
Similarly, Oxana sees the relationship with her six-year old son as an opportunity to build trusting and supportive connection built on respect and understanding. Most of the participants express a longing for the kind of relationship with their children that they did not have with their own parents. They want to practice a different model that is less authoritarian and more friendship-based. Hart et al. (2000) conclude that although authoritarian methods of upbringing
(i.e., spanking) is viewed as uniformly negative by Russian parents, they still get used. The authors see authoritarian parenting as a synonym to corporal punishment. Starting from the
1990s, the major theme in Soviet/Russian educational writing appeared to endorse democratic childbearing and independent problem solving in children (Ibid). These changes reflect similar approaches that mothers with disabilities tend to adhere to – reliance on verbal explanation and
108 instructions (Prilleltensky, 2004a). In other words, mothers with disabilities in a way have to be innovative in their approaches to parenting to ensure their children listen to them and understand them. Oxana compares her own childhood with the way she treats her son.
Nobody (our parents) talked to us when we were children to discuss things. I want to communicate more with my child. (Oxana)
A lot of the interviewees stressed the importance of preparing their children for life in a way that they are ready both in terms of their education and in terms of their character.
Yana wants to make sure her children are involved in a variety of activities. She reflects the philosophy of parenting that believes in the importance of children’s multi-faceted development that focuses on education as an asset and investment into their future. It can be seen as part of the trend when parents view time outside school as valuable and, thus, open for additional education. The ability to speak foreign languages becomes a vital component of future educational and career achievement and advancement that can ultimately open up opportunities for a better paying job. Yana sees this effort as part of her contribution as a parent. Education is what she can give her children to guarantee them a solid starting point in their lives.
If some people find the most important thing for their children is to be fed and dressed, I certainly find that important too. However, I also want my children to be well-rounded. Each of my children is involved in some sport. I pay attention to their additional education. English is a must. My eldest son is learning Chinese. It has nothing to do with my disability, it’s just the way I am. I find it very important for my children to be well- rounded. While I can give them something. (Yana)
Galina explains her plans to teach her daughter a range of different skills by referring to instability around us. The skills become not only a mechanism for bettering oneself but also a way to protect oneself in extraordinary situations.
I want my daughter to sing, dance, I want her to know how to do everything. It might not be what she does for living, even if she decides to become an accountant, hairdresser, she needs to try everything. We have an interesting social situation in our country. I also want her to be a girl scout, so that she knows how to start a fire, put up a tent, orient in the
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forest, what if there is a war (laughing). I feel like I need to prepare her, so that she knows how to communicate with people, how to work and how to get information. (Galina)
Disability has been an extraordinary circumstance in the lives of most of my participants.
The increased concern for their children’s future encourages mothers with disabilities to equip them with the tools that will help them be successful in life. By recognizing the unpredictability of life, they want to make sure their children can embrace this unpredictability by being as prepared as possible.
Related to the idea of adjusting to the world is the notion of using disability as a teaching tool. Several participants agreed on the lessons their disability can teach their children when it comes to acceptance of difference.
When trying to explain disability to their children, mothers with disabilities use their experience as a teaching mechanism to contextualize it and make it clear that disability represents everything that the world in general represents – diversity and heterogeneity.
Nadezhda considers her life to be reflective of this diversity. Her husband is disabled.
Their friends are people with different disabilities. However, they are embedded in an able- bodied world. When explaining disability to her children, Nadezhda brings up an analogy that is not related to disability. She compares it to people’s different eye color. By bringing disability to the level of a more common form of different embodiment, Nadezhda hopes to normalize disability to her children. Along with some obvious pedagogical benefits of articulating a way to talk about disability, there is, however, a concern about minimizing the materiality of the disabled experience to a mere difference akin to an eye color.
My son is starting to say that other moms don’t use a wheelchair, whereas I do. I say that it’s true because all people are different. Your eyes are brown and dad’s are blue. All people are different. Similarly, there are people who use wheelchairs, there are people who have one leg, one arm. They see that we have friends of different abilities, that we
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don’t pay attention to that and they see that their father goes to work and works among able-bodied people, that he is respected. And they know the whole story about the car crash, I explained to them why my legs don’t work, that there is a spine that is responsible for that. (Nadezhda)
During her interview, Oxana expressed her concern about children’s cruelty. She talked about it in the context of wanting to protect her child from being mocked or bullied for having a disabled mother but she also raised this issue when countering cruelty to acceptance of difference. She expressed hope that her disability will teach her son to be accepting of difference.
I will try to raise him (even though he doesn’t realize it now) with the idea that people can be different and children can be different. I think this idea will be important in his life. I’ve already mentioned how cruel children can be. (Oxana)
In response to her son’s question about her disability, one participant tells him,
“You have a unique mom” “What do you mean?” “I’m not like everybody else”. So I am trying to present it in a way that he doesn’t get scared of it and so that he understands that his mom is different. (Alina)
A lot of the participants mentioned their friends’ circle as a way to demonstrate to their children that difference is ubiquitous and is not limited to their mother’s disability.
It is interesting that my child has seen a lot of people using wheelchairs and prosthetic devices. She knows my friends. When I worked as a psychologist, she also saw autistic children, children with Down syndrome, it is a part of life for her. She will not make a big deal out of it. (Olga)
Olga talks about the role of her daughter’s immersion in the environment with other people with disabilities. This frequent contact results in what Olga describes as something that is not “a big deal”.
It is important to note that consistent with earlier research, fathers have not been mentioned at length as equal participants in building the relationship with children in the context of their wives’ disabilities. Kay (2006) suggests that “the way in which parenting and upbringing are portrayed in Russia frequently conveys the sense that every child has a mother but may or
111 may not have a father” (pp. 127-128). In other words, the discourse around a special bond with a mother and not a father permeates women’s narratives, however it does not mean that a bond with a father does not exist. One of the participants told me that her husband felt jealous of the relationship she has with her son. Research into men’s experiences of fatherhood through the lens of disability is needed to better understand the role of fathers. Chernova (2012) associates this absence with the legacies of the Soviet family policy that divided the social care of children between the mothers and the state, excluding biological fathers from their family and parental role. Consequently, in crafting their subjectivities, women certainly recognize their husbands’ role, however they do so by situating that role within the institution of marriage rather than a discussion of partnership per se.
3. Having the Right Partner
When discussing the relationships of women with disabilities, the concept of
‘settling’ circulates in research (Crawford & Ostrove, 2003) and refers to women with disabilities choosing a partner based on the notion that these women cannot be seen as desirable marriage partners and they “settle” for the best option available to them. The narratives of my research participant counteract these narratives. Most of them were married prior to their injury.
The reluctance to discuss the period of adjustment in their family suggests a complex dynamic of renegotiating marriage post-injury. Two women discussed offering their husbands to leave. One participant elaborated on that episode in her life and said that her only priority was her child; marriage was secondary. Those who met their husbands after their injury (mostly online or in rehabilitation settings) discussed it not in terms of settling but in terms of regaining confidence and self-worth.
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Marriage in general is perceived as an integral part of being a mother both from the perspective of the traditional heteronormative value of family and from the economic stability perspective. The latter will be discussed in more detail in the next chapter.
Despite the prevalent perception of motherhood as a phenomenon that centers around women’s identity, some participants recognize the primary role of meeting the right partner to create a family with. In other words, a decision to become a mother was more resolute with a presence of a husband.
Maria emphasized the cultural significance of marriage by unpacking the etiology of the word “marriage” in Russia. Its literal meaning is “to be behind a husband”. In other words, there is a hierarchy embedded in the meaning of the word that recognizes husband as someone at the forefront of marriage, someone that plays a role of protector.
I was ready to become a mother also because I met a person who I knew could be someone I am ready to spend the rest of my life with, who would be my support. I realized that I am married (Russian etymology: behind a husband) and that I have all the preconditions to become a mother. (Maria)
Galina is very strategic and pragmatic about the role of marriage in her life and her decision to become a mother. She places marriage in the broader context of the socioeconomic realities that she considers important for raising a child – a need for a father, housing, and resources. Galina brings up the issues of affordability and the economic hardship of raising a child alone. The centrality of husband makes it possible for her to think of motherhood.
I thought that were I to become a mother, I needed a husband, because you can’t just rely on grandmothers. A child needs a father from the social, emotional and financial point of view. Especially in our country. You need an apartment. In order to have one, you need to work, so I couldn’t have a child when I was 25 because I was earning to buy an apartment. We were sharing the cost for the apartment. We certainly wanted (a baby). (Galina)
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This section focused on the relational aspects of constructing one’s subjectivity.
Everything from barriers, to relationship with children and husband is intertwined with how women negotiate their sense of self. This negotiation results in the model of motherhood that is fluid. Although it does not defy the dominant narrative of motherhood as a predetermined women’s role, it seeks to adjust to it through recognition of the physical barriers that mothers face, through construction of relationship with children that are not defined through the physical tasks, and through bringing in the importance of having a husband. The idea of relationality originates from feminist ontology that recognizes relationships, past and present, realized and sought, as constitutive of the self (Morgan, 1996). Thus, maternal subjectivity crystallizes how women shift their subjectivities. Disability’s role in constructing subjectivities, however, is more contested.
D. Contestations of Disability
The way women with disabilities I interviewed see their disabilities is in terms of how it relates to their other experiences. Disability becomes a challenge that creates a set of conditions necessitating adjustments.
Most of the women share the sentiment that motherhood itself was a motivating factor when the very nature of the circumstances either made it necessary to adjust and learn motherly roles or inspired these women to keep moving forward and achieve new goals. In the environment where motherhood itself can be considered a challenge, disability gets enmeshed into an array of other challenges. Disability then is always contextualized in relation to life circumstances.
Oxana spent several months alone when caring for her baby. Her husband held a shift job at the time working six months a year in a different city in Russia. Oxana lived in a five-story
114 apartment building with no elevator. She was also just fitted for her prosthetic leg and had to learn how to use it. Carrying a stroller up and down the stairs is arguably a challenging undertaking. A prosthetic device is certainly supposed to restore the ability to walk, however it takes time to learn how to use it. It requires months of rehabilitation in a specialized clinic with a professional psychical and/or occupational therapist. Oxana came back after months of treatment and she had to learn how to use her prosthetic along the way. Her disability was shaping her motherhood experiences, it was not a standalone journey.
I was fitted for a prosthesis. I just started to learn how to walk, it didn’t even have a cover yet. So I would go out using stairs twice a day holding a child in my arms along with a stroller. It was very hard. Perhaps that’s why I wanted to learn how to walk sooner. Imagine he would start running down the street. He just learned how to walk, and he was eager to run all the time. (Oxana)
Disability shapes people’s lives without becoming all-encompassing. Another participant
Alina thinks about her disability not as something that can be dismissed but as a starting point for new plans.
I have a goal, I have my son. Moreover, we are planning a second pregnancy. And I’m not thinking, I am trying not to think about the problems. (Alina)
One of the participants credits her motherhood for inspiring her to become a disability activist. She started protesting the inaccessibility of her child’s daycare, which served as a launching pad for her involvement in disability advocacy.
There is a big program of daycare construction that started recently. We had a new daycare open not far from us, I was looking forward to its opening. When it opened, I realized that it was as inaccessible as other daycares. I got so mad (laughing), I started complaining, started to make calls, started petitioning. I asked a non-profit organization for help. Their lawyer helped me file a lawsuit. My activism started with this conflict. (Evgeniya)
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Some participants credit their impairment in giving them opportunities that they otherwise would not have had access to. Women talked about new opportunities as well as an overall motivation that disability gives.
Svetlana is very proactive in terms of advocating for herself. She recognizes that some of the opportunities that opened up for her were the result of her disability. Svetlana is an artist, she paints beautiful portraits and finishes the post-secondary education to become a music teacher.
After her proactive advocacy efforts, the local authorities made some modifications in her modest home. These modifications allowed her to go outside. She did not provide details on other kind of help she advocated for, however her active involvement in the local branch of All
Russia Society of the Disabled (2017), a government supported network of disability organizations across the country, gave her access to information that she was able to use to advocate for herself.
Even though it’s not good to hear but if I didn’t become disabled, I wouldn’t have what I have now. I wouldn’t have gone on vacation that I have a right to go to as part of my in- kind benefits, I wouldn’t have met people that are in my life now. Completely different life. Sometimes, I even tell people who are in a similar situation “Just imagine you have a new life now in a different body, but you are lucky to remember your previous life. You need to appreciate that, you can live a different life. (Svetlana)
Oxana talked about disability making her more driven in her goals. However, the context is what makes disability such a driving force. For example, Oxana had to learn how to drive because there was no other way to get around.
I think that after acquiring disability I became more driven. Before losing my leg, I would not have probably considered driving. Once my physical abilities were limited, when you realize that you can’t even go outside, for instance, when I had no prosthetic leg, then I realized that I would not be able to live without it (driving). (Oxana)
Such incorporation of disability into a larger scheme of life is different from a widely criticized in disability studies trope of overcoming disability. The participants do not resort to
116 viewing their disability as something that needs to be overcome. Disability studies explains that society expects people with disabilities to work extra hard to “overcome” or “compensate” for their disabilities (Vidali, 2007). The juxtaposition of disability to something than can nullify and hide it is what disability studies scholars find problematic in this approach that implicitly devalues disability.
The essential nature of motherhood certainly dominates over any self-perception of being disabled. Motherhood is foregrounded in the context of the challenges that mothers with disabilities face. Despite the acknowledgement of the transformative role of disability, it is predominantly associated with a failure to be a mother as a protector of her child and a bureaucratic designation. What is reflective in these accounts is not necessarily the outright refusal of disability, but it is the refusal to accept it in its current dominant understanding as something that is associated with a bureaucratic label and weakness. Petryna (2003) provides a poignant image of how the bureaucratic state can become an overarching authority of knowledge about disability through the regimes of biopower. The continuing domination of medical discourses in the domains of disability determination process and welfare perpetuate a negative perception of disability. The participants barely discussed their disability in terms of the official disability categories weaving it instead into a more complex story of their lives.
Irina discusses the difficulty of accepting her disability. The image of what it means to be disabled does not coincide with how she views her life. She does not feel that her illness, as she refers to it, dominates her life in a way that people around her think.
Disability (invalidnost’) for me is a bureaucratic word. I don’t feel disabled...People often talk to me about my illness. It feels as if it is happening to someone else. I’m simply refusing to accept. I will not come to terms with it even though I experience the pain. I’m not being melodramatic. But when I hear “Become friends with your illness”, how can I? (Irina)
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The undesirability of disability status to many people with disabilities is theorized by
Watson (2002) as a way to confront “disablist stereotypes” to present of picture of herself as an active, resistant agent. It is a way of recognizing one’s bodily difference without ascribing to the characteristics associated with that difference. It pushes us to think beyond the dualism of ability-disability.
Maria explains why she did not want to pass her vision impairment to her children. She looks at it as a way to protect her children. She recognizes the challenges she experienced herself and simply wants to minimize them for her children. Maria sees disability as something that makes you vulnerable, unprotected. Thomas (1997) discusses the fear of giving birth to a disabled child in the context of the risk discourse. She suggests that women with disabilities defy these discourses embedded in the ableist rhetoric and suggests that women with disabilities do not necessarily evaluate risks negatively. They “take that risk” despite the pressure from the outside. Despite that risk, the underlying desire for a non-disabled child does not square neatly within the logic of emancipatory feminist disability studies. By positioning women with disabilities as part of the reproductive citizenship framework, we might be addressing one stigma
- being a disabled mother, however the underlying logic that devalues disability might still be present even among the subjects themselves.
Maria associates her desire to have a non-disabled child with the maternal instinct to protect her children. Disability is perceived as something that will pose a threat to a child. Not having a disability is equivalent to having less mistakes in life.
When she (a woman) is carrying a child, she is thinking about how to protect her child from hardships/challenges in life and make sure her child doesn’t repeat our mistakes. However, I don’t think it has anything to do with disability, it’s more of a maternal instinct than an attitude of the disabled person. (Maria)
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Alina expresses a similar sentiment of having a fear for her child. There is a degree of concern when it comes to imagining disability in the life of a future child.
I was afraid, I did not want my child to go through what I had to go through. (Alina)
Often, this refusal to be associated with disability was justified by the importance of presenting oneself as capable in front of the child. She focuses on the perceptions, but not in the sense of how they relate to her but how they will impact her child.
I always thought, well from the moment my leg was amputated that I would do everything, I would manifest something so that my child didn’t think of his mother as disabled. Overall, I don’t consider myself disabled (invalidom). I don’t associate myself with this word. (Oxana)
The underlying reason of this desire not to be associated with a disability is discussed as a concern about the child. This concern was related to bullying that a child might experience as a result of a parent’s disability.
I was worried about my child. You know, kids are cruel these days. Why they see that a classmate’s parents are different, they start bullying him. (Oxana)
Evgeniya agreed with this sentiment.
I had a lot of fears when I was pregnant. What if the child is ashamed of me, what if the child is bullied because his mother uses a wheelchair. There hasn’t been an incident like that once in these 7 years. (Evgeniya)
Prilleltensky (2004b) suggests that a desire to shield children from the effects of disability can be understood in the context of the institution of motherhood, on the one hand, and the medical model of disability, on the other hand. The romanticized notions of mothers as all- giving and self-sacrificing have been critiqued, however, mothers continue to be at risk of self- erasure, they are supposed to be on the giving end, not on the receiving end of care. In my interviews with mothers with disabilities it was not so much the perception of being a care receiver that the women were concerned about, but the stigma of having a disability as a mother in the first place. One of the participants described a general sense of society not being aware,
119 not being able to imagine a life as a mother with a disability. But beyond shielding children from the effects of their own disability, mothers with disabilities are not immune to the discourses that devalue disability and, thus, create a preference for a non-disabled child. Most of the research on disability in Russia focuses on the perception of non-disabled parents who have a child with a disability. How can we make sense of the discrepancies and non-linear narratives without providing a somewhat reductive explanation of internalization of ableism by these women? As
Grech (2009) contends, we need to engage with what surrounds disabled people and their families because the possibilities and limitations they confront are largely contingent on the broader socio-cultural, economic and political environment. The fear of raising a disabled child in Russia is born out of the very material conditions that shape these mothers’ everyday life. For example, when discussing the context of the Global South, Erevelles (2011) poses a question of how acquiring a disability can be celebrated as “the most universal of human conditions,” if it is acquired under the oppressive conditions of poverty, economic exploitation, police brutality, neocolonial violence, and lack of access to adequate health care and education.
Claiming the right to be a mother by emphasizing their mental fitness to take care of the child is often necessitated in the context of the negative attitudes of the medical personnel and the stigma toward mental illness. Thomas (1997) writes that living with the fear of losing the right to care for their children forces some mothers to “present” themselves as “normal”.
Normalcy has a specific connotation in the Russian context that places it specifically on the mental capacity scale. Nenormalny’ (not normal) can be translated as mentally ill. Noteworthy is a casual nature of using the term. The history of mental illness in Russia (Phillips, 2007) illuminates a less stigmatized view of mental illness there predicated on the idea that irrespective of one’s mental illness, people in Russia face palpable conflicts between their desired and state-
120 compelled roles. However, motherhood as an expression of responsibility for another life changes the stakes. Alcoholism and drug abuse are listed as one of the reasons for the termination of parental rights according to Article 69 of the Russian Family Code (Konsultant
Plus, 2017). Although a parent’s disability, including psychiatric disability, cannot be a sole reason for stripping of the parental rights, it can be one of the factors for limiting them.
By challenging the doctor’s question about her capacity to be a mother, Maria appeals to her mental health to be used for determining her fitness.
As for my first pregnancy, the doctor asked me what I was going to do with the baby, he asked why as a blind woman I intended to give birth. I asked him back whether a drug addict is asked the same questions. The doctor didn’t reply. And then I asked why he is asking me these questions, was I not being reasonable, was I not behaving like everybody else? (Maria) Svetlana complained about emotionally draining process of challenging the doctors’ assumptions about whether she can be a mother.
The director would be after me and say “You have a first degree disability3, you have no right to give birth. I said “Why? Am I intellectually disabled? Or emotionally unstable? Why not?” They are simply scared of taking that responsibility. They emotionally exhausted me, I ended up in the hospital”. (Svetlana)
Deal (2003) discusses the phenomenon of disassociation of one impairment groups from another impairment groups depending of what is more stigmatized. The study finds that some people with physical disability “may be annoyed at being labelled as having a learning disability.” It is rightly indicated that by distancing themselves from what they perceive as more severe and more stigmatized disabilities, people with physical disabilities perpetuate the notion that there is a hierarchy of disabilities depending on the diagnosis and rely on the mechanisms that have been used by non-disabled individuals to alienate them.
3 It is the most severe according to the Russian classification system.
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E. Conclusion
This chapter focused on the unstable nature of subjectivity in the context of mothering with a disability. The accounts of mothers with disabilities on what it means to be a mother and a mother with a disability might seem to reflect the pronatalist logic that essentializes motherhood, however the contextual analysis that unpacks the cultural devaluation of disability expressed in attitudinal and physical barriers creates a more nuanced understanding of how mothers with disabilities negotiate their maternal subjectivity.
What does it mean to be a subject? Butler (1997) suggests that we are used to thinking of power from the outside, as what subordinates us. We internalize the terms of this subordination, but paradoxically we are dependent on the very conditions that brought our “I” to existence. In other words, we never chose the discourse, but our agency is initiated and sustained by it. What does it mean to be a subject from the perspective of reproductive citizenship theory?
Reproductive citizenship creates a bridge from the essentialized notions of motherhood and femininity that are consistent with the dominant ideas of what motherhood is to more nuanced understandings of self that disability introduces. The fluidity of the mothers’ subject positions is informed by context and by the process of constant negotiation of roles and their meanings for claiming citizenship. The absence of totality in defining oneself suggests that citizenship is multi-layered and negotiated differently depending on the relation to barriers, partners, and children.
The research question that foregrounds motherhood can explain the dominance of a motherhood subjectivity, however, the accounts of motherhood reflect a practice rather than a stagnant identity. What can be helpful in thinking about such practice is a recognition of its potentially empowering potential. O’Reilly (2010) notes that it is important to delineate
122 motherhood in relation to reproduction and children from motherhood as an institution. Such distinction helps us recognize an empowering potential of motherhood, which becomes especially important at the intersection of disability and gender. By contextualizing the practices of motherhood in the current environment of pronatalism, I argue that the systems and the structures are engaged in the production of subjectivities through institutionalized discursive practices, however this interaction does not imply a unidimensionality. Through enactments of agency (discussed in more detail in Chapter VII), the subjects defy essentialization and do not let the discourse of motherhood be seen as an oppressive practice. In other words, the focus is not on domination and power as an oppressive force but on the interactive processes and structures in which meanings are produced and reproduced, and resisted in contingent and relational ways
(Dhamoon, 2011).
Neither motherhood, not disability becomes a totalizing experience. The subject positions shift and shape each other. They do not exist in a vacuum. Irrespective of how deeply entrenched the narratives of essential role of motherhood in a woman’s life are, the experiences at the intersection of motherhood and disability uncover fractures in the seemingly monolithic discourse. The lived experiences of mothers with disabilities are built around multiple subject positions infusing ambiguous meanings about motherhood - from the discourses of independence that reflect the neoliberal values of self-governance, to the centrality of motherhood in shaping the everyday experiences, to the ways disability serves as a tool in making motherhood more meaningful. The intersection of motherhood and disability reveals the complexity of our subjectivities that are differently and differentially constituted.
VI. MULTI-TIERED SUPPORT SYSTEM
A. Introduction
The support system that I characterize as multi-tiered will be discussed in this chapter.
The concept of care is essential for understanding citizenship, and while relying on its theoretical foundation, I expand its theoretical reach to include a more empirically grounded concept
“support” that was used extensively by the research participants.
This chapter will focus on different configurations of support. It will address the following question:
How do support systems (within and outside families) influence the experiences of
mothers with disabilities?
The chapter will focus on the notion of mediated care practices when the tasks of being a mother is contingent on the help outside the circle of immediate family members. The practice of asking for help contributes to the narratives of dependence and vulnerability of people with disabilities, however the material conditions of the environment manifested in multiple structural barriers make such practice unavoidable. In other words, if a mother with disability needs to ask for assistance in order to complete her mothering responsibility, she effectively transitions from care provider to care receiver.
I will reflect on the intersectional nature of care as it is underpinned by my research participants. Marriage and class will be discussed as significant, yet often invisible and unrecognized aspects of individual experiences that shape them. Cultural expectations around marriage as well as the role of husbands will be explored.
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Kinship as theorized by anthropologists as something that extends beyond a biological family and forces families whose lives somehow differ from the discursive normalcy into a “new kinship imaginary” (Rapp & Ginsburg, 2011). This new imaginary reframes expectations about a life with a disability, it reverberates through domestic cycles. This chapter will demonstrate how this kinship is shaped through relationship with mothers’ parents, specifically mothers, and with their children. The grandmothers’ involvement might suggest a smooth alignment along the cultural expectations of traditionally close connections between generations in Russia. However, kinship does not idealize the relationship. The invisibility of care from the Russian grandmother risks, I argue, to be further entrenched by the cultural expectations. I will then interrogate how mothers perceive their children’s experiences in the context of their disability and discuss the contested nature of children’s helping role in a family with a disabled family member. I will move on to the exploration of the peer support and its role in being a conduit to mediated kinship that brings recognition to disability in the public realm and expands connections beyond the immediate family. I will address some of the discursive practices underlying the invisibility of help, the structural devaluation of help, and the complexities of kinship in the context of care.
Without delving extensively into the policy realm, I will comment on the role of the macro-support and maternity capital. Although the discussion around this important piece of governmental support that is intended to stimulate the birth rate was not a significant part of the interviews, the emphasis on self-reliance, on the one hand, and deservedness of the state support, on the other, is important for understanding the process of negotiating citizenship. The larger questions that perhaps go beyond the scope of this dissertation revolve around the role of state and social welfare in constructing the social positions depending of gender and disability.
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B. Mediated Care Practices
The notion of support is intertwined with the idea of asking for help. The expectation that support simply exists without a need to facilitate it is flawed. By starting the discussion of support system with exploring what makes that support possible, I want to emphasize the relational nature of help in that it is through relating to other people, we create a meaning of care in its broadest sense. Although I use help, support, and care interchangeably, I recognize care as a more comprehensive concept that incorporates some of the most insightful and rigorous scholarly discussions on the topic. Care might be expressed in a single instance of a stranger helping to take a wheelchair out of the car or in a broader version of care from the family members. Herring (2016) goes as far as to suggest that relationality is at the heart of our identity.
Yet, the importance of recognizing each other’s vulnerability cannot be divorced from what makes the reliance on each other a form of accommodations. Disability complicates the relationship built around a disabled person having to ask for help, especially if that appeal can be avoided with availability of the accessible environment. One of the characteristics of the relationship that involves an appeal for help is the power imbalance, and that power imbalance characterize this relationship as dependent (Fine & Glendinning, 2005). Margaret Baltes questions the negative connotations around dependency by suggesting that seeking and accepting the help of others is a positive adaptation strategy which protects and maximizes the use of scarce resources and capabilities in other areas of life. (Baltes cited in Fine and Glendenning,
2006). Although I do not adhere to the dependence as a disability-friendly concept, I agree with the logic that often underlies the relationship of negotiating help. However, asking for help to lift the wheelchair up the stairs goes against the principles of Independent Living (Fleischer &
Zames, 2002; Pelka, 2012).
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Some participants see disability as something that legitimizes their appeals for help.
However, they still have a sense that they need to apologize for their disability, for being too much of a burden. But, ultimately, the participants acknowledge that disability forces them to reconcile with having to ask for help from the people around them, even if that means, as Irina said, “bothering” someone.
I will probably be asking for help many times more. There is nothing extraordinary about asking someone for help. Any person can do it. The only thing is that you don’t want to bother anyone. This is a main concern because everyone has their own problems. (Irina)
In an effort to balance these subjectivities, Svetlana does not seek help from outside.
Neither is such help readily available. Thomas (1997) concludes that much of professional help ends up being “unhelpful”. Instead, Svetlana refers to the help from friends and family. She recognizes vulnerability that comes along with asking for help, however she considers it a justified move when the children’s interests are at stake.
I think that a child wants for his mom to be around irrespective whether she uses a wheelchair or not. It’s important to always be with children. Ask someone for help if you go sledding with your child. We are scared to be a burden. It’s the hardest part. You want to do everything yourself. (Svetlana)
Yana’s reluctance to ask for help was overcome by the realization that people are actually willing to help. Yana reflected on how her workplace and other major health and social services facilities are becoming more accessible, however often objects that look like ramps fail to function in a way that facilitates access for people with mobility impairments (Hartblay, 2015).
Such accessibility fails not only reflect marginalization and discrimination but also produce locally specific experiences of disability (Hartblay, 2015). Furthermore, they help situate the negotiation of access.
It used to be very hard to ask for help. I will do everything myself, I will achieve, I will learn if I don’t know something. Then it turns out that it’s not hard to ask for help. If I
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need to go up, I can just smile and ask “Can you help me?” No one said no. Why couldn’t I do it earlier. All people are great. (Yana)
Related to the physical inaccessibility that makes many people with disabilities navigate their access through appeals to help is the lack of access to information about being a mother with disability. Physicians often counsel disabled women not to have children merely because it seems obvious to them that people with disabilities would not make good parents. Kallianes and
Rubenfeld (1997) invoke the history of eugenics as a contributing factor to denying women with disabilities access to reproductive health information. They suggest that since marriage and mothering signify sexuality and acceptance into the social mainstream, it is not surprising that disabled women face obstacles from the medical communities.
Several participants commented on how little information was provided right after the delivery of the baby. The medical professionals did not take the time to talk to the women about some of the specifics of caring about a baby while being disabled, about adjusting to being both a mother and a person with a disability.
Yana became disabled during the delivery of her second and third children as a result of epidural anesthesia. She visibly had a hard time recounting that episode of her life. I made sure to give her as much room as she needed to talk about it. The apathy that ensued after the injury when she felt very depressed was not something that the doctors warned her about or suggested some resources to help her go through this challenging time. This is not to suggest incompetence of specific doctors, but to indicate the gaps in care provision that fails to acknowledge any alternative motherhoods.
After my injury, I was lying on the bed, a neurologist came in and said “Make her the rails, so she could lift herself” and then she left. No information about how to live now, what I will be able to do, nothing like that was provided. (Yana)
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Similarly, Galina felt at a loss when she was discharged from the hospital with a baby.
Not only the maternity classes that were available for women were not held at an accessible location, there was no information available after the child’s birth. Galina had a few medical emergencies during her pregnancies, and even though she recounts these stories with a smile now, she was certainly sarcastic and, thus, critical of the medical services. It is only her acquaintance, a pediatrician she knew from her work as a children’s psychologist, who came over and helped her figure out the arrangements of taking care of the baby and provided her with some guidance.
It was very hard in the beginning. After the delivery, a baby usually stays with the mother for 2-3 days. I was in one hospital, my daughter was in a different one. I still was not feeling well. Then I finally came to pick up my baby. Our local clinic had motherhood training courses but they were held on the third floor, so I had little interest in that (sarcastically). I knew nothing about what do with this bundle of joy. A pediatrician checked in, made sure the baby is well and alive and left. No one explained how certain procedures are done, how to feed her. (Galina)
The lack of services that would attend to the disabled women’s reproductive needs, ironically, creates a space for negotiating accessible motherhood experiences, however, such negotiation hinges on the external support, such as spouse’s intervention. One of the participants reflected on her experience of giving birth to her daughter when the advocacy efforts of her husband allowed her to have the external support of the care attendant. He went to the administration of the hospital to request a caretaker for his wife. The hospital allowed them to find one, but if he did not ask, no additional help would have been provided and, arguably, the post-partum experiences would have been more challenging.
This (caretaker) was my husband’s initiative. The first time I was giving birth, I had no caretaker, and it was hard because you need to get up, take the child, sit down, stitches were there, so there were medical problems, not the problems related to the fact I’m disabled. Not at all. When my husband requested the head of the department to allow me to have one, he was told “Absolutely yes”. “Find someone who can take her of her
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medicals”. This woman was with me for the duration of my stay in the hospital for 8 days (6 days in shared room, 2 days in acute care). (Maria)
Negotiation of one’s maternal and reproductive citizenship is a process that is characterized by the practices and spaces of exclusion in public places more generally and in maternity hospitals more specifically. This exclusion necessitates what I call mediated care practices. In other words, by exercising one’s agency, women navigate these spaces through the help of people inside and outside their familial kinship – strangers in the streets and acquaintances. The fluidity of the solutions to the everyday challenges suggest their precarity and conditionality. It also suggests the need for creative acts of self-affirmation that push the boundaries of what is expected and what is possible.
C. The Safety Net of Marriage
The role of marriage and women’s status in relation to welfare support has been discussed in length by feminist citizenship theorists. The importance of gender dimension in state, market, and family relations areas is essential to understand the division of labor, care, and welfare policies (Sainsbury, 1999). The discussion of marriage in the Russian context is important for two reasons. First, it is the cultural expectations around marriage that play a significant role in how women with disabilities see their marriage and their husband’s role.
Second, it is social family policies that determine how citizenship is distributed along the marriage status.
In their analysis of marriage trends in Russia, Avdeev and Monnier (2000) summarize the discursive meaning behind the traditional marriage. The traditional image in Russia is viewed as an expected and logical step at the end of education or military service. As part of that discourse, a young Russian woman or man get married as an almost obligatory stage in the passage to adulthood. White (2005) observed the shifting gender roles of young women in Russia expressed
130 in higher acceptance of children being born outside marriage, of postponing childbirth for career.
However, she also noted that young women still believed that women should be mothers and that women who did not have children deserved pity. The combination of what might seem like conflicting views is reflective of the socioeconomic changes in Russia that saw a steadily high women’s participation in the labor market coupled with traditionalist views that were formulated in the context of the demographic crisis and the return to the stable traditional values that can counteract instability of the market changes.
Policies reflect and inform the cultural views of families. Teplova (2007) characterizes the system that exists in Russia as neofamilialist. Such system draws on a traditional understanding of gender roles (male–breadwinner, female–homemaker) and provides support for those who prefer to care for their children at home. In Russia, the job-protection and maternity- leave regulations have remained relatively unchanged since the Soviet times, despite a transformation of the social sphere. Payment during the maternity leave equals the woman’s average wage during the 12 previous months (Motiejunaite & Kravchenko, 2008). However, with benefits being quite low, husband’s employment becomes paramount.
The discussion of the financial aspect of husband’s role remained mostly invisible, although I associate it with a sense of security most of the women felt about their financial situation or a reluctance to discuss any material hardships that families might experience. Utrata
(2015) observed a similar phenomenon of avoidance of topics related to material hardships in her research with single mothers in Russia. What is emphasized by the interviewees instead is the physical, moral support from their husband.
With most of the participants being married, they agree on the instrumental role of their husbands’ support. This support does not necessarily translate in the actual child-rearing, but in
131 tangential tasks that facilitate accessibility and make things overall easier. For instance, teaching children tasks that makes it easier for their mother to move around is one of the examples.
Maria credits her husband for preparing their son to help his mother navigate inaccessible environment. There is so much love in the way she describes how her husband taught their son to differentiate the numbers on the buses, so that they could take the bus they need.
When my son was little, he couldn’t speak well, he was around 3. And his father taught him how to ride public transit. I didn’t work here (Organization of the Blind) at the time, we needed to use the bus, so his father taught him the numbers. Our son was still little and didn’t understand the numbers. So 72 was a hockey stick and a swan (laughing), 46 meant something else, 11 was drumsticks. He would teach him how to distinguish different bus numbers, which bus we can take and which one we can’t. (Maria)
Yana thinks of her husband’s role in the context of their children growing up. They grow out of some things and continue their socialization through involvement in other activities.
That’s where she sees her husband come in and fill that role. Moreover, Yana realizes that some of the things will remain physically unachievable for her.
(My husband and I) are looking in the same direction. He does not interfere in how I raise the children. All the activities are on him, though. They go to play soccer in the evening, he is taking them out. I used to do it when playing in the sandbox was enough for them, but now they are more active, so he is trying to do it. We are looking in the same direction. (Yana)
In her description of her husband’s support, Galina reflects on the physical aspects of care (carrying, lifting, washing) and the reluctance and tiredness associated with it.
I’m grateful to my husband, I would not be able to do it without him, he would wash me, carry me when our daughter was born. He took a leave for a month after her birth to be with us...I was confident that he would do everything. He might not be very interested or excited about that. He is doing everything. Sometimes, he would want to spend more time with Dasha, sometimes we let him take a break and go visit our grandmother, while he stays here and works till 4 in the morning. For 1.5 years after giving birth, I was quite sick. I couldn’t breast feed, constant treatment, antibiotics. (Galina)
Surprisingly, only a participant who is divorced from the father of her daughter discussed extensively the financial support and the lack thereof after divorce. The rest of the participants
132 have not raised this issue at all, except for the recognition that reliance on a husband’s income is unavoidable if a wife’s income is not enough even to cover the cost of the day care. For example,
Lyudmila, who was the oldest participant in her 60s, mentioned that financial help comes from children and the fact that her husband still works also helps. She certainly considers him a breadwinner. Olga, on the contrary, can only rely on herself. She is a Paralympic athlete, a member of the Russian Paralympic team. Her status certainly allows her to live a comfortable lifestyle and raise her daughter without worrying if she can afford supporting her. Olga confided that living on a Moscow-size salary in Omsk in easy. Indeed, the regional pay differential between Moscow and the rest of the country remains significant. She expresses annoyance not so much at the fact that she has to work to support her family, but at the fact she cannot take any breaks.
My ex-husband does not help me, I carry all the responsibilities. My mom is a pensioner, so I help her. Katya is still young so she does not earn. My mom is helping me by looking after Katya. This task of earning money whether I like it or not is not something I think about. Sometimes I don’t like it because I think “What the hell”. I want to go on vacation, for example. You think “Why do I have to do it alone?” On the other hand, my child loves me, she is giving me so much joy. I would not have made a different decision. No matter what, I am happy that I have a child. My child loves me, she hugs me, kisses me (Olga).
Even if women with disabilities that I interviewed held employment, they did not consider that employment the primary source of the family’s income relying instead on their husbands’ income. Galina who is a psychologist in the social center describes her salary as being equivalent to the cost of the child care. She considers this amount a minimum to consider her job worthwhile. Galina does not see her job only as a source of income. She enjoys working as a psychologist and has professional ambitions to become a teacher at the university. Nevertheless, finances are one of the concerns. Her husband works in IT and, arguably, makes enough to support the three of them.
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For one year after giving birth, I had a lot of fluid in my legs. It was hard. If there was some support. Our pensions are very small. I hope that after I go back to work, I will have a minimal pay, so that I can pay for the day care. If it’s not enough, then I don’t know. Then we will have to rely on my husband. (Galina)
The importance of a partner who can support a family becomes even more crucial when a woman cannot rely on disability benefits because she has not been officially recognized as disabled. Lidia is trying to keep upbeat, however the hardships and the struggles are noticeable.
Unfortunately, financial difficulties have an impact. Because I don’t have a job, you can’t provide the child with everything you want. It is hard and frustrating. Sometimes I get depressed because of it, however it is balanced by moments of joy and you forget about it for a while. (Lidia)
Partners’ support is manifested in two important ways: physical and childcare support and financial support. The former is discussed more extensively, whereas the latter in the context of marriage is viewed as a given.
Marriage becomes not only a security mechanism, but also the only framework that the women see as necessary to have children. When describing her family’s reaction to her news of getting married, Galina’s mother suggested for them to simply live together. Galina remembers feeling perturbed by such suggestion not only because of the implicit idea that disabled women are not good enough for marriage, but also by the potential consequences of not getting married.
She just could not imagine doing the housework, taking care of her husband just to be left with nothing. Marriage as a legal mechanism that gives her the right for fifty percent of the common property in case of divorce is a way to feel secured for her.
Marriage itself is an insurance and a way to maneuver the system. Research suggests that unmarried mothers and children born out of wedlock are excluded from the dominant discourses on motherhood (Carlbäck, Gradskova, & Kravchenko, 2012). It is not surprising then that heteronormativity is a goal for most of the women.
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D. Invisible Help of Maternal Grandmothers
The role of grandparents in helping to raise the children in Russia has been discussed by most of the participants, but often in a way that suggests the expected nature of such support.
Drawing the attention to how immediate family members occupy certain caring roles and responsibilities illuminates some of the cultural attitudes toward caring. The layout of the caring spaces also demonstrates the public/private divide and the way the private dominates the daily and the corporeal part of caring. One of the participant’s mother took the leave of absence to take care for her daughter and her grandchildren.
(My mom) tries not to interfere. She used to come when I wasn’t employed and she was on a maternity leave till they were 3 years old. She would come at 9 in the morning, start cooking something. It relaxed me because I knew she would be coming, so there was no motivation for me to get up. (Yana)
Oxana was diagnosed with cancer when her child was just three months old. Her parents stepped in without a question. This kind of continuity of care suggests the expectation that such care is natural, that it will always be there and that the micro-level system of support replaces any other institutional kind of support (i.e., government). The arrangement also reflects a gendered perception of care with women carrying the primary responsibility.
My parents are, I am very grateful to my parents. They carry the brunt of helping me. They have been raising him (her son) until he was one year old. I was in the hospital, and my parents took care of him since he was 3 months old and brought him back when he was one. Basically, my mom was raising him all this time. I stopped by rarely. He spends his school breaks there. (Oxana)
Nadezhda attributes her desire for more children to the fact that her parents helped significantly when her first child was born. Their help was so vital that Nadezhda did not even need to learn the skills she needed to take care of her first child. She was sharing how easy she felt it was to have a baby, and that sense of effortlessness translated in her desire to have more children.
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My parents could not help as much with the second child because both had changed jobs, the schedules changed. They still helped but it was minimal. We learned to do everything ourselves, there is some adaptive equipment that we did not have with Arisha. There is a special stroller that has a carrying capacity. We use it to put Vanya in. Lesha (husband) would carry it to the bathroom, and then I could lift him from there and wash him in the bathtub. I wasn’t scared as much, we had no way but to adjust. We had babies for ourselves, so we have to learn and manage on our own. It was hard with the second child. (Nadezhda)
Svetlana is almost dismissive of her mother’s help, however her comment is illustrative of embeddedness of the practice, it becomes something that both parties perceive as a given, but it also problematizes it by offering unromanticized nature of care where care providers can be doing some seemingly mundane work, like cleaning, without expressing much enthusiasm or just doing it because they know no one else will. It seems that a sense of irreplaceability underpins the acceptance of such arrangement that was not negotiated or agreed upon. Rather, it simply was already there prior to disability.
She (my mother) mostly comes to talk. We manage on our own. However, if she sees that something needs to be done, she will do it without asking. Sweeping the floors, dusting, grumble about something (laughing), one thing is wrong, another. (Svetlana)
Referring to the time when doctors insisted on her terminating the pregnancy (due the fear of the child’s potential disability), Lidia said that her parents supported her at that moment not letting her give way to the doctor’s pressure. That kinship can prove crucial at the time of the pressure from the medical community discouraging women with disabilities to give birth.
Coerced abortion is one of the manifestations of systemic prejudice and discrimination that women with disabilities around the world experience (Frohmader & Ortoleva, 2012).
I am grateful to my parents that they let me make a decision myself. (Lidia)
Lidia who was denied an official disability designation that I commented on earlier in my dissertation depend on her mother’s support not as much physically but certainly financially.
Lidia, her mother and Lidia’s daughter live in one apartment. Lidia is not officially married to
136 the father of her child, however they are together. Her mother supports the family financially.
Despite her expression of the overall happiness of being a mother and having mothering experiences, the burden of the financial problems and the stress they create could certainly be detected, especially when Lidia talked about her hopes for the future. That future involved a separate apartment that they would not have to share with her mother and her ability to afford things for her child that she cannot currently afford. This desire for independence emphasizes the reluctant nature of sharing the same space with the family members. Such living arrangements also de-romanticize kinship and care driven by the need, rather than by the availability of many options. Appreciation for her mother’s help is accompanied by frustrations and irritation over the fights that happen in the house. Research suggests that one of the consequences of family caregiving is an increased level of stress and burnout (Murphy, Christian, Caplin, & Young,
2006; Schulz & Sherwood, 2008).
Evgeniya discussed her plans once her daughter goes to school and the second child is born (she was pregnant at the time of the interview). She says in a half-joking way that her parents would be picking up her daughter from school, however they were not told about it.
There is an underlying assumption and expectation that this help is always there. Even if it is not used regularly most of the participants make a safe assumption that their parents will always be there if needed.
Along with recognizing the important role grandmothers play, the participants also insisted on the instrumental value of independence in their daily life.
My conscience and my understanding was changing gradually. At one point when we were staying with my mom, I said “Ok, we are moving, we already had our own apartment and I said that I would need very little of outside help”. When I occasionally ask my mom for help, she takes my kids to the extracurriculars or for medical appointments or comes with me. (Yana)
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Evgeniya waited until her child becomes independent enough for her not to rely on the help from others. She was eager to do the work caring for her daughter independently.
Grandparents (my mom and my husband’s mom) came every day in the first six months (after the child was born), then we hired a nanny who would come because I was not even able to take the child out of the crib while my husband was away. It was a regular crib that I could roll up sideways. (Evgeniya)
Evgeniya recognizes her parents’ support and demonstrates that once they stopped visiting her and the baby every day, she had to rely on a nanny, a solution that is contingent on the family’s ability to afford these services.
E. Peer Support
Peer support with its emphasis on emotional support is one of the manifestations of interdependence. Peer support is about understanding another’s situation empathically through the shared experience of emotional and psychological pain. A peer mentor is someone who has successfully faced a similar experience and can provide an empathic understanding to help the person adjust to the experience. Benefits to the recipients of such support, the mentees, include
“assistance in problem solving, opportunities for information sharing, goal setting, encouragement and motivation, role modeling for advocacy and social interactions, opportunities to practice new skills, and realistic observation and feedback” (Veith, Sherman, Pellino, &
Yasui, 2006).
Through affiliation with others people can feel “like” someone else, they feel a connection. This connection, or affiliation, is a deep, holistic understanding based on mutual experience (Mead et al., 2001). Peer support plays an important role either in helping to imagine what is possible after acquiring a disability or in providing encouragement amid daily challenges.
Irina did not have to search for her support group. She was connected to the group right after her diagnosis. For Irina, this support group has become a way to normalize her condition.
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We get together as a society of people with MS organized by Elena. She brings us together, we spend time together. People sing, perform, we listen. We relax mentally. If I was not a member of this organization and if I was not invited, I would not have been very cheerful. They are giving me confidence because I can see I am not the only one and that there are a lot of normal people like that. The communication is very important. (Irina)
Peer support is usually mediated through other activities. It is through involvement in other activities that women found community of support. Yana also notes that meeting someone with the same experiences allowed her to move forward and try something new. She also highlighted that if it was not for this person, she would not have learned what was possible.
I have not been involved in dancing before. My friend invited me, she is more active than I am. I have got to know her a year after I acquired my disability. I saw her outlook on life, I saw that she was not stuck (on her disability). She would suggest “Let’s go to the Achair monastery (one of the sights in Omsk region). I would say “How would we go?” “We will rent a van and go”. She became an example for me, I realized that it is not the end of the world.” I think there is not enough information. (Yana)
Nadezhda echoes this sentiment by sharing how seeing people with disabilities have a variety of life experiences made her imagine her own future. Falling in love for the first time after the injury made her realize that disability does not foreclose the opportunities in life.
I was in the rehabilitation center and met twenty-five other wheelchair users like me. They were living a full life, they were driving, falling in love, getting married, having children. At the time I knew only one person who became a mother, and she was the idol for everyone around. There are people who don’t give up, they travel, they dress up, put makeup on like everyone else, it’s not prohibited by everyone. There was a guy I had a crush on, the feeling was short-lived, but it was a push that made me realize that I should not be getting all depressed. (Nadezhda)
Some individuals found peer support important not only because of the benefits of bringing people with similar life experiences together but also because of its self-advocacy potential and its role in heling to teach about rights. Indeed, the bureaucracy of receiving assistive technology through the government offices involves attending multiple offices, procuring medical documents that prove one’s disability and waiting in long lines. Navigating a
139 complicated network of offices might be challenging for someone who does not know how to navigate it.
Sport helped me change the attitude toward disability, I would love to continue doing it. I would love to bring together a group of people who is looking for something in life and help our country teach people to take care of themselves, teach them to see their disability as a given and not some sort of tragedy. People with diabetes continue to live, they just know that they need to take a pill. The same is here, you just need to know certain laws and regulations that help you receive help, for example, help getting a prosthetic, help getting information about the organizations that provide this help. You learn what exercises you can do to strengthen your spine. (Olga)
Evgeniya recognizes that her overall friend circle has changed after her injury. New peer support became an entry point for making new connections and building new relationship.
Before my injury I mostly had my university and school peers as friends, after the injury I still have one friend from the institute and the rest are people with disabilities. It has to do with my activism. Quite a few people with disabilities. (Evgeniya)
Another way of building support network is through practices of interdependence by offering help to her friends (baby-sitting or tutoring), Lidia sees her way of paying her friends back. The reciprocal nature of the relationship is what makes her feel needed.
F. Negotiating Children’s Help
Following the work of Keith and Morris (1995), I would like to focus in this section on the social construction of the category children as carers. By suggesting there is a clear line that can be drawn between the receivers and providers of care, such construction trivializes the nature of care and its relationality. Indeed, the category might serve to draw attention to the excessive pressure on the family members to provide care in the absence of any public support. However, in the process of drawing attention to this problem, the division dismisses the role of parents as agents. The category also creates a discourse that parents with disabilities cannot take care of their children. A disabled parent’s ability to love and care for their children is not dependent on them being able to perform all the physical tasks that other parents might do (Keith & Morris,
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1995). Yet, this myth of self-sufficient parenting persists. This section will contribute to further demystifying this myth and exploring the fluid and the relational nature of care in the context of mothering with a disability in Russia.
Children’s help is hardly conceptualized as a separate from the family life in general.
When it comes to children’s participation in the practices of care, there seems to be a recognition of the importance of that role for navigating access, getting involved in regular activities, and acquiring the kind of maturity that other children lack. However, this recognition is paired with the expression of regret that this very maturity forced them out of their childhood and into adulthood too soon.
Nadezhda reflects on her experience of going shopping with her children and letting everyone (including the children) do their fair share. She also comments on how the children step in to help both parents. This ability of all family members to contribute in smallest things is appreciated and gets to the heart of interdependence.
We don’t have a shopping center nearby, so we go to a big supermarket to stock up for 1- 2 weeks. All of it has to be unloaded from the car, so when she (our daughter) was little, we would start with a loaf of bread, a box of pasta, a package of milk, so she would carry one thing at a time. Then she would start carrying a bigger package and then she would bring it in the house. Now, we have a conveyor belt. Misha is first, then Vanya, then Arisha, and the rest is carried by my husband. It seems like a small thing. My husband has a hard time dressing independently. He can’t put on pants and socks without help. He has spasticity, so when I’m not pregnant I help him, however it is harder for me now, so Arisha does it. (Nadezhda)
Interdependence suggests a universal condition of humanity. However, we need to keep in mind that by simply juxtaposing interdependence to independence or dependence, we risk idealizing the relationship of interdependence. Fine and Glendining (2005) caution against limiting the understanding of interdependence to the immediate family circle and friends. We still need to address the problems of inequality and access to care. Interdependence also suggests
141 autonomy and choice. Are these choice and autonomy available when other options of care work are not available or not very common?
The history of new Russia has seen the emergence of social work as a profession. Social workers are responsible for providing social services defined as social support, everyday household support, social-medical support. Similar to the status of the personal care assistant in the USA, social work is an overall devalued work both monetarily and socially in Russia
(Iarskaia-Smirnova & Romanov, 2002). The absence of help from “outside” in the participants’ narratives might suggest an embedded view of help confined by the family structure. By providing this context, I want to recognize the absences that stories have, but these absences suggest that interdependence cannot be theorized outside the ostensibly private space of the family structure.
Under the current system, informal care can be recognized as an official employment (the period of caring is calculated towards the total years of experience that determine the pension size in Russia). However, the conditions under which it is recognized are very narrow.
Individuals (irrespective of whether they are family members) who provide care to the severely disabled (the degree of disability is established by the medical social commission) or the elderly who reached 80 years old receive a monthly compensation (The Pension Fund of the Russian
Federation, 2016). All the disabled people who are not disabled enough and individuals who are not old enough have to rely either on informal private attendant or, in most cases, family members. In other words, care carries specific severity and longevity specifications that leave most of the people outside these definitions.
Going back to the women’s understanding of their children’s role in the family, they did not limit the discussion of their children’s help to the issue of house chores. Rather, they viewed
142 their children’s help in the context of the barriers that transcend the family-oriented nature of children’s help. Their help was a conduit for the mothers’ opportunity for social participation rather than a burden of tedious house work. This is not to say that they do not face the challenge of involving children into work around the house. They simply place their help in the context of their everyday experiences. Perhaps, such embeddedness and relational nature of help explains why women did not address one of the common criticisms that mothers with disabilities face around using their children as helpers. In her interviews with mothers with disabilities, Grue and
Lærum (2002) concluded that mothers found it difficult to balance their expectations about what can be expected of children and other people’s concern that the children were made into assistants who were exploited by their disabled mother. Children’s helping out was often seen in the participants’ accounts within a discourse of disability and not within a discourse of socialization (Grue & Lærum, 2002). The participants I interviewed view their children’s help as part of growing up and learning the skills of providing help, even if that means asking someone to help them carry their mother’s wheelchair.
I talk to some mothers. Most of their children 5 and younger stay at home. When they reach 5, they start going out. I have a friend, she asks her child to go out and ask someone to help her get out and bring her (chair) out, so they can go out together. (Svetlana)
Svetlana’s story demonstrates that help is relational in nature. It might involve several people with a child fulfilling a role of a negotiator of this help. After telling this story, Svetlana noted the danger associated with letting the child ask a stranger for help, however when the situation is truly desperate, some mothers with disabilities have to make that choice. Who is carer in this situation? Someone who is helping lift the wheelchair, someone who is asking for that help or someone whose mothering responsibilities will depend on whether that help is
143 provided? Care becomes a multi-directional phenomenon negotiated within specific contextual factors.
Some children of parents with disabilities are thought of as children who had to mature fast. There is some palpable sadness in the interviewees’ accounts of how their disability made their children grow up fast. Although the participants do not talk explicitly about the societal views around their children’s role in the families, mothers tend to think of their children’s maturity as an unfortunate thing. Maturity in children is associated with its unnaturalness, suggesting that knowing about disability and what the experience of disability is like goes against children’s “standard” development.
I told you in the beginning that our children grow up fast. Sometimes I feel bad for my children, feel bad that their mother has a visual impairment. It is not that they didn’t play with their friends, no, they had all of that but not as much as other children had. Our dad was working, now he is not, so it’s easier. Back then the work of accompanying me primarily fell on my son and my daughter. My son couldn’t even choose between playing or accompanying me, there was not even question about that. He accompanied me at the expense of his play time. That is why I lament that my children had a different childhood. They have more responsibility. (Maria)
However, despite some of the regrets, when this experience is thought of in perspective, women recognize that it played a positive role. In the context that promotes a masculine culture and that associates the ability to work hard with responsibility and maturity, Svetlana son’s help, such as bringing the firewood into the house to keep it warm in the winter time, can be interpreted as a building block toward his development as a “real man”.
It was hard for my child. We lived in a single-family home (chastnyy dom), firewood, charcoal. My son would chop firewood, bring in the coal...He became an independent man, he can take care of himself, he is serving in the army now, he grew up really fast. (Svetlana)
The relationships upon which caring is built are often fraught with tensions and should not be taken for granted. Some researchers observed that house chores should not be only
144 perceived from the point of view of help that is provided to a disabled mother (García, Martínez,
Loureiro, González, & Martínez, 2015). Rather, oftentimes, these chores are carried out as part of obeying parental authority. Similarly, disobeying and refusing to help might be the result of viewing a mother as any other parent. Additionally, children’s age might be an important factor in how they interact with the parents and how they respond to the requests for help. One participant recognized that her daughter’s enthusiasm in helping her might go away once she reaches adolescence.
Most of the work is on me but she likes helping. When I ask he if she wants to help me with something, she enthusiastically agrees. Then I ask her to go hang out the laundry. She gladly runs to do it. If I need her to fetch something for me outside, she always goes. I don’t want to do it because every time I come back in, I need to clean the wheels of my wheelchair. She does it now, I don’t know if it’s just her age, but she does it enthusiastically. It might go away later but I take advantage of it now. (Evgeniya)
Another mother is already experiencing the challenges of raising an adolescent daughter.
When talking to Irina, it was easy to sense her disappointment with her daughter who is not helping her as much as she used to. She associates her daughter’s reluctance to help with the influence of technology, specifically the cell phone. Irina who has five children with most children being under six years old certainly has a lot of do around the house. She complains that she is much slower after being diagnosed with multiple sclerosis, and she needs more time to complete certain tasks. Irina also seems to be regretting a special connection that she lost with her daughter.
We have had so many conversations, we have gone through a lot. Initially, Sasha helped me, when I had a morning sickness, she took care of me. I was so thankful to her, then something started to change, she was impacted by the negative influence and phone use. I can see that this is a source. If she has not communicated and has not used the phone, it would have been better. She would have worked hard, she would have helped me. She was such a good student, she was praised, she had so many interests from the music school to embroidery. We also learned knitting, and she started attending an arts school. She dropped it, she said she does not want to go there. (Irina)
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Mothers with disabilities are put in a challenging situation of having to prove their worth as a mother but also requiring some help that allow them to fulfill their mothering role. The relationship with children becomes a field of dilemmas and doubts. Women often blame themselves for putting too much burden on their children, especially if the living conditions are not conducive to relying only on yourself. Children often become conduits for accessibility – they can ask for help and they can help their mothers navigate inaccessible spaces. The notions of care and help are wrapped around class and marriage status, inaccessible spaces, and mother- child dynamics.
G. Macro-level Support: From State Support to Self-sufficiency
Discussion of the care system in its embodied forms will not be complete without the macro-level portrait of state support. The maternity capital is as much an institutional policy landscape that regulates gender relations as it is a discursively informed tool. The program was introduced in 2007 and serves as a monetary entitlement to women who gave birth to their second or third child in the lump sum amount of around $7,500 (adjusted to the cost of living over 10 years). The money can be spent for specific purposes: the purchase or improvement of an apartment, the mother’s pension savings, or the child's education costs. The fourth direction was added in 2016. The money can be spent on social adaptation and integration of children with disabilities (About Maternity Capital, 2016). Rivkin-Fish (2010) notes that in order to understand the program and its legitimacy among Russians, we need to analyze the women’s accounts in the context of current demographic discourses. First, the Soviet system also had features of pronatalism, thus the current trends did not emerge out of nowhere. Second, state power legitimizes the use of various instruments for national survival with pronatalism being one of such tools. Furthermore, Rivkin-Fish (2010) cautions against analyzing the programs through the
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Western feminist lens without taking into account the historical and localized knowledges. The discursive meaning of the program helps us understand its intended effect. Among the most important ones are the idealization of the nuclear family, the definition of the family’s function in terms of procreation and childrearing, and the promotion of femininity and masculinity.
Disability of the parents is not discussed due to its failure to conform to the discursive goals of the promoting “the ideal family”. The absence of disability in the official legislation is reflective of the interviewees’ accounts in which they talk about maternity capital in passing as something that they were easily able to apply for and use.
When asked about the kind of support that women are receiving outside their family circles on a macro level, majority of the participants either agree that they receive a sufficient state support (that is mostly reflected in the monetary benefits) or suggest that they do not need any additional support. Some women conceptualized their disability in relation to the kind of state support they are provided with. One woman expressed nostalgia about the way the system of support was set up in the Soviet Union. For her, the importance of disability benefits was much more important than motherhood-related benefits.
The only thing that disability helps me with is that I get a pension. It also helps me to receive a medical treatment. This all helps me. I went to the sanatorium, I received a treatment, I had some medical procedures done...It has never been difficult financially because the state has been supporting me financially and by providing the children's benefits. I have also been financially supported as a mother of a large family. I have always been supported. The only thing is that I have been struggling physically because I had to continue working. (Irina) Most participants do not think there is a need for additional support. As Nadezhda says, the belonging to several categories gives the families a variety of benefits.
I don’t get any special assistance. I don’t think there is much need in that, at least for my category of disability. There is certainly never enough money. If you ask an able-bodied mother if she needs help, she would certainly say yes. I think we are actually quite protected, for example we have a priority access to daycare, we also receive benefits as a multi-child family. We belong to several categories (laughing). (Nadezhda)
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Against the backdrop of the official policies are the lived experiences of mothers with disabilities navigating the exclusionary spaces and discriminatory attitudes, with a handful enjoying supportive networks and successful employment.
Yana discussed her employment in the context of the government support and insisted that some people are used to being dependent on the state.
I heard about (the bank) looking for employees. A lot of people (with disabilities) who came to be interviewed for a job said, “No, I don’t need this, I will stay at home.” I don’t understand such people, they got used to it. They got used to being at home. “I’m invalid, they ought to provide for me.” I don’t understand these people, they are waiting for the government assistance. Why? (Yana)
In contrast to that, one account stood out in its insistence on the need to have more state support for women with disabilities, specifically women with vision disabilities. In fact, the participant’s personal experience as well as her awareness of the existing protections or lack thereof allows her to identify how policies overlook people with visual impairments. The state supports are deemed not as an option that should be available but as a necessary component of the care system. Maria who is the head of the organizations for the visually impaired gave me a lot of examples of how the law might not work for mothers with visual impairments. For example, she suggested that there was a higher chance of being denied a housing mortgage (one of the ways to use the maternity capital) simply because of visual impairment. She raises the ultimate question of the citizenship theory – why do our children owe to the state from the moment they are born (they are expected to become productive citizens, they are expected to serve in the army, they are expected to create families), but why does the state owe us nothing?
This question is about the balance of rights and responsibilities, about what it means to be a citizen when your responsibilities outweigh what you can expect from the state. This question also gets to the heart of citizenship debates.
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We (mothers with disabilities) need specialized help. It needs to be spelled out. We have children’s benefits, and many single mothers, mothers that are below the poverty level have the right to these benefits. Meanwhile, people with visual disabilities do not have such right because if both of the partners are visually impaired, their pension is around 17-18 thousand rubles, they have two children, then it means that their income is above the official cost of living. The question is, however, that nobody realizes that these people might not have proper housing, they need to rent an apartment, they need to raise their children. Their children will receive a draft deferment, but it is only a deferment, their children will have to pay their debt to the state. Turns out that we owe the state from the moment we are born, and the state owes us nothing. (Maria)
Maria certainly holds a unique perspective as someone who comes across many stories of people served by the organization she work in. When discussing legislation in general, she expressed her criticism about the way certain legislation is applied to the specific context, she also highlights that bureaucracies and corruption impede the implementation of the Accessibility
2011-2020 initiative4.
Another similar perspective was articulated by the only participant who became a mother during the Soviet times. Lyudmila, a deaf participant, was reminiscing about the easier access to in-kind benefits during the Soviet times.
There were not as many difficulties during the USSR. In-kind travel, good wages. Nowadays, it is hard to arrange that, although we have a right to that. That is why it was easier and simpler back then. (Lyudmila)
Lyudmila considers financial situation to be the biggest barrier in the decision to become a mother. She said,
There is no difference (from able-bodied people), the problem is financial. That’s what people usually look at. If people can afford it, they have 5-6 children, if they can’t, then one-two children are enough. (Lyudmila)
Between these two extremes of not needing any support from the government and the requirement to designate mothers with disabilities as a separate group for policy purposes and provide them with more financial support, are the reflections about how these two positions are
4 This program is intended to improve accessibility across Russia.
149 related to the women’s access to other kinds of support, such as family networks and accessible environment, including the hospitals.
We started building this house before my injury. It’s a 2-storey house with a basement. We had to remodel it, install the elevator, make a ramp but now it’s fully accessible. I can fully maintain it, I can move around everywhere, I can reach everywhere. A lot of people live in inaccessible buildings. We have a greenhouse, I can wheel in, water and weed the plants. There are paths everywhere. It has a certain level of comfort, I feel very comfortable here. If I didn't have access, if I lived in an apartment and couldn’t get out of it, I would have a less active lifestyle. (Evgeniya)
Evgeniya recognizes the level of privilege that living in an accessible house has allowed her. For most people with disabilities in Russia, inaccessible housing is one of the major hindrances to social participation, including but not limited to employment, recreation, social relationship. In fact, one of the major criticisms of the latest reforms spearheaded under the initiative Accessibility 2011-2020 is that all the efforts to improve infrastructural accessibility fail if people cannot leave their inaccessible apartments.
Nadezhda notes that new perinatal centers that are built as part of the pronatalist campaigns comply with the European standards.
I usually go the perinatal facility in Zlatoust, 40 km from Miass (where she lives). They built a perinatal center 10-12 years ago, it complies with all the European standards. They have wide doors, separate rooms, you won’t find 4-6 women with their babies in one room. You won’t come across a situation when one baby starts crying and everyone wakes up. You won’t have only one bathroom on the floor. This one has a bathroom in every room, and your neighbor is not right next you, but behind the wall. There are elevators, not stairs like it used to be in the older building…It helped me a lot to have such center because when Arisha was born I delivered in a local old center in Miass. They renovated it but I don’t want to go there. They know me at the new center, it won’t be my first time. I don’t want to go to the old one. (Nadezhda)
Nadezhda foregrounds the importance of the accessible maternity clinics for her as a mother. Ironically, by investing in new and technologically advanced reproductive centers, the government inadvertently invested in accessibility because these centers are built in accordance
150 with the code that includes accessibility. Overall, additional support is mostly conceptualized as the efforts directed towards accessibility rather than financial help.
H. Conclusion
The chapter lays out different levels of care that surround the experience of mothering with a disability. None of these levels exist in a vacuum; they are relational and non-binary in that they do not have clear-cut boundaries, and they are permeated by the cultural discourses of help. Mediated care practices emphasize the relational nature of care that emerges situationally, thus pushing the conversation beyond the conventional perception of where and how care occurs.
Interdependence foregrounded as one of the contributions of disability studies is contextualized and reconceptualized as a relationship and a process that cannot be taken for granted and that is contingent of what we define as visible and invisible care. Cultural ideas about motherhood are deeply embedded in the narratives and practices threatening to render motherhood as a caring practice invisible. Similarly, kinship and support from the outside is under the same threat. It is through the close attention to these cultural forces that we can parse out the deep connections and relationality that undergird interdependence.
The chapter also destabilizes the discussion of family kinship to infuse it with contextual account of cultural expectations that can be seen as further essentializing care along the gender lines but simultaneously enabling mothers with disabilities. The chapter circles back to the debates around children’s role in families with a disabled parent by depicting the dilemmas of negotiating help. Even though any demographic policy carries a specific set of discursive meanings and configurations of gender relations, the stories of women with disabilities blur the image of the families with strictly defined roles.
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Care in its macro-perspective acquires a much more multi-faceted meaning transcending the traditional views of government support as monetary in nature. It is seen more in terms of access. Access as a tool minimizes the need for direct monetary help. Macro-support is also conditioned by intersectionality of disability, gender, and class in that individual positionality dictates the extent of the institutional level support.
VII. CLAIMING SPACES. ENACTING AGENCY AND BELONGING
It’s not people that are bad, it’s the circumstances (Nadezhda)
A. Introduction
This chapter will explore the experiences of mothers with disabilities in the context of belonging. It will apply the relational understanding of the experiences that strive for belonging.
The chapter will address the following question:
How do mothers with disabilities claim citizenship and belonging?
Accessibility that was briefly discussed in the previous chapter creates new contexts for understanding what belonging means. The physical barriers are closely intertwined with the attitudinal barriers that often come to the forefront in the lived experiences.
The chapter will analyze the kind of barriers mothers with disabilities encounter and explore why justification of the systematic exclusion becomes a way to position oneself in the world and claim belonging to it. Justifications, I will argue, is a way to bring disability closer to the non-disabled experiences and blur the lines between ability-disability divide. This section will demonstrate how justification is meant to place the experiences of exclusion in the context of broader socioeconomic challenges. As discussed in my Methodology chapter, experiential knowledge cannot be left decontextualized and, thus, apolitical.
The chapter will interrogate the contextual meaning of some of the barriers, such as disability awareness, or what the participants referred to as “literacy” (gramotnost’).
Informed by the discussion of agency within feminist citizenship framework, this chapter will explore the strategies and the micro-resistance mechanisms of enacting agency employed by
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mothers with disabilities. The notion of staying positive will be discussed as a prevalent strategy for addressing a lack of awareness. In fact, “negativ” and its avoidance is central to understanding the micro-level experience of disability. Positivity is rooted in psychological ideas that promote the importance of facing any adversities with a positive outlook. I will explore the neoliberal logic of self-help discourses and their connection to disabling practices. I will focus on the notion of positive outlook and its embeddedness into the tradition of popular psychology that places the onus on self-improvement and the development of “good” character and that has impact on the construction of the sense of responsibility and self-governance.
Reliance on alternative strategies appear to be one of the dominant ways of going about a barrier without challenging it. This chapter will also focus on what it means to identify ways of being that circumvent the barriers without necessarily taking them down.
B. Conceptualizing Belonging
Belonging is an integral part of citizenship theory that articulates the conditionality of membership and inclusion. Mahar et al. (2013) define belonging as a subjective feeling of value and respect derived from a reciprocal relationship to an external referent that is built on a foundation of shared experiences, beliefs, and personal characteristics. Relationality and commonality are two primary features in this definition. Belonging regulates the politics of inclusion and exclusion within citizenship studies. As Isin and Turner (2002) contend, the politics of belonging reflective in the continuing rise of new forms of cultural politics has challenged modern understandings of belonging traditionally limited by the authority of the state.
In other words, the claims for belonging expanded making certain forms of exclusion more visible and giving voice to the groups that have previously been denied it. I use Yuval-Davis’
(2006a) conceptualization of belonging as a starting point for analyzing how mothers with disabilities view what prevents them from feeling like they belong and what they do to make
154 claims for belonging. Yuval-Davis (2006a) defines belonging as a dynamic process rather than a reified fixity, whereas the politics of belonging is the actual struggle around the determination of what is involved in belonging. The dynamic nature of belonging creates several levels for its operationalization. Yuval-Davis (2006a) writes,
The first level concerns social locations; the second relates to individuals’ identifications and emotional attachments to various collectivities and groupings; the third relates to ethical and political value systems with which people judge their own and others’ belonging/s. (p. 199)
Social locations refer to belonging to a particular gender, race, class, or nation with various implications in the context of power relations in society. Ethical and political values refer to the values attached to social locations and identities. Identification and emotional attachments are stories that people tell themselves and others about who they are (and who they are not). It is through the last level that I view the experiences of mothers with disabilities. Constructions of attachments are informed by specific repetitive practices, which link individual and collective behavior. The cultural discourses that promote the narrative of motherhood will find its repetition in individual and collective behavior. Ultimately, belonging reflect the levels of citizenship that rights and responsibilities do not. Although a conceptualization of belonging as an emotional construct only addresses the politics of recognition (cultural aspect), I don’t suggest that the politics of redistribution (socioeconomic aspect) is less important but rather that it might be valued as less important depending on the context.
The sense of belonging needs to be analyzed through intersectional lens because it emphasizes the temporal and processual nature of the concept. As such, belonging is perceived as situational, constructed across one’s lifespan, and constantly negotiated (Lähdesmäki et al.,
2016). Mothers with disabilities are already positioned in the so-called “oxymoron reality”
(Haldar, 2015), when motherhood and disability are viewed as contradictory.
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By creating an emotional attachment to motherhood, mothers with disabilities think of the barriers they face in their everyday lives not only as material experiences that bring forward their exclusion but as a question of what it means to belong. I argue that the way mothers with disabilities discuss barriers and the way they rationalize the existence of the barriers through a practice of justifications is a mechanism for claiming belonging.
Barriers as they are understood in disability studies encompass a wide range of physical, socioeconomic, political and other obstacles that prevent parity of participation, or “social arrangements that permit all (adult) members of society to interact with one another as peers”
(Fraser, 1997). Depending on the nature of the barrier, the responses might differ. For example, disability awareness has become the focus of multiple information campaigns in Russia. Russian
NGOs have carried out a few successful campaigns over the years. A Moscow-based NGO
“Perspektiva” is one of the prominent advocates for inclusive education in Russia. Its campaign
“Children should go to school together” (NGO Perspektiva, 2007) includes socially-oriented advertising, “kindness lessons” with school children to educate them about disability, and other measures that have slowly introduced a vocabulary of “inclusive education” that has not existed in Russia before. Such campaigns emphasize that discrimination is often a result of lack of knowledge and not a malicious intent. When discussing the barriers that they experience on a daily basis, the research participants brought up the attitudinal barriers as the most prevalent, however, the framing of these attitudes as something that requires understanding rather than outright criticism is noteworthy, as it suggests the commonplace nature of such occurrences.
These brief, nuanced, and often unintentional slights and offenses that underlie verbal and nonverbal communication to the target person or group are referred to as microaggressions (Sue,
2010). In their analysis of disability inclusion in Russia in the last twenty years based on the
156 survey results, Romanov and Iarskaia-Smirnova (2011) note that a significant number of respondents, especially women with disabilities, experience hostile attitudes on a daily basis in the hospitals, public transit, shopping centers, education facilities.
The way most of the women conceived of the barriers was through the prism of their own past as able-bodied people. Oxana, who became an amputee in her 20s as a result of cancer, drew on her life prior to disability as a reference point. She associated the lack of understanding of disability by society with its failure to relate to these experiences. When asked about how society treats people with disabilities in Russia, Oxana noted that people have no idea before it happens to them. She aligns herself to the views of the rest of society and challenges the boundaries between ability and disability, by making a case that disability is something that can happen to anyone. The negotiation of belonging is built around disability’s proximity.
I think that a person is distant from that until he or she experiences this (disability). I know this based on my own experience. Until I experienced it myself, it was irrelevant to me. (Oxana)
Oxana went on to critique the depiction of sick children in different media as major tools for appealing for help in the environment where universal healthcare does not provide sufficient coverage for some cancer treatments. She suggests that pity is not what these children need. Pity is “othering” people with disabilities, denying them belonging.
When asked about the prospects of people changing their negative views of disability or when asked to identify what the problem came down to, there was an overall agreement among the interviewees that it is a human factor and that no matter what policy changes happen, there will always be someone who is not aware, or as participants said, not “literate” (gramotnyy) in these issues. A lot of participants invoked the idea of “gramotnost’” that can be translated as
157 literacy but, in this context, it is related to the notion of awareness. One of the participants noted that if people are literate, then interaction is positive.
I think it is slowly changing, but it will never go away, because it is all about being human. It is not even about all the medical professionals having this attitude, it all depends on a specific doctor, nurse, a person who is examining you. It’s purely a human factor. (Maria)
One of the poignant examples of disability stigmatization is reflected in Oxana’s narrative of her encounter with the medical professionals. Oxana was married and had a child at the time she was diagnosed with cancer.
The perception varied. What struck me the most was that medical professionals were coming up to me asking whether my husband had left me. Yes, that was there. At the time, I didn’t even care whether my husband would leave me or not. (Oxana)
Oxana has a strong sense that professionals and more “literate” people should be pioneers in changing the perceptions about disability. She argues that the low level of awareness among doctors makes the expectation of positive attitudes from the general public very unlikely. Olga associates literacy with a certain level of maturity that you reach when you acquire some life experience. She considers becoming a parent an example of such experience.
Now I can see that a lot of parents are quite literate. They look at me, they sympathize, they have an understanding now because they are parents now. Sometimes it is just education, no, I meant upbringing (vospitanie). People who had a good upbringing accept life as it is without having illusory thoughts that everyone is 90-60-905 and the public obsession with bodily difference is minimal then. (Olga) What does it mean to be considered “literate” when it comes to disability? The notion of literacy is closely associated with modernity, with possessing an understanding that suggests a certain level of progress. “Literacy” as it relates to disability means awareness, understanding of a certain etiquette around disability and people with disabilities. If literacy is something that can
5 The numbers refer to the “ideal” body measurements for a model in centimeters. It is a common reference in Russia to talk about ideal.
158 help change the attitudes toward people with disabilities, the interviews do not reflect the possibility of such literacy becoming widespread. As many women suggested, they could relate to people who were not accepting of them. The idea that awareness is very individual and that there will always be someone who is not literate reflects a micro-level understanding of the relational nature of disability that is separate from the macro-level interventions (i.e., laws or news coverage about disability). While recognizing the visibility that events like the Olympic and the Paralympic Games in Sochi in 2014 brought to disability issues, mothers with disabilities do not associate these macro-level events with their daily lives.
Olga’s perception of why the awareness about disability is still very low is informed by her observations of the pace and time it takes to accept something new.
Take, for example, the Paralympic sport, it’s growing, everyone talks about it; however, it has been a short time. There is an assumption that you can become an athlete in a week even if you have not been doing anything else in life. This (attitude) is similar. We have been denying it (disability) for so long, we have been scared for so long that you need a lot of time to come to the realization that this (disability) is a part of life. (Olga) What Olga is talking about is the historical legacy that continues to inform “postsocialist disability matrix” (Mladenov, 2016). From the denial of disability manifested in the phrase by the Soviet official “There are no invalids in the USSR” (Phillips, 2009) to the deeply entrenched system of medical commissions that regulated and continue to regulate the disabled people’s access to public support, state socialism shaped the system with no alternative visions, thus freezing the invisibility and the medicalized views about disability. With many mechanisms from the Soviet times surviving in the wake of neoliberal changes of 1990s, the cultural recognition of disability has existed within the limits set by these intermingled discourses. Perhaps, it is this disconnect that participants are referring to when they talk about the daily encounters that are still heavily influenced by the medical-productivist understanding of disability (Mladenov,
2016).
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Younger age is viewed as an indicator of more open-minded and “progressive” people.
By invoking the age of people that she interacts with, Svetlana discusses not just two generations of people, she discusses two groups of people that belonged to two different epochs and held different views about disability.
There are all kinds of people. Those who approach sixty years old are not used to it. They think that if a person is using a wheelchair, then she is mentally ill (s golovoi ne tak). (Svetlana)
Meanwhile, the responsibility to change the societal views is placed upon the disabled person, specifically by demonstrating one’s mental capacity and skills. Yana’s husband also has a disability (cerebral palsy) and works in information technology sector. She suggests that attitudinal change is a bottom-up process that should be driven by disabled people, by their ability to “prove” that their opinion has legitimacy and that this legitimacy confers value. Her words also provide a commentary on the national character of the Russian people who, she argues, become more accepting after the initial hostility.
Russian people always great you with a stone face at first, but after evaluating this person's behavior and mental status (adekvatnost’), they change their opinion and melt. Our dad (referring to her husband) is very good at providing IT help, he makes suggestions about optimizing some process in school, the rest of the parents react surprisingly “We didn’t even think that’s possible”. That’s how the attitude changes. (Nadezhda) 1. Justification in the context of belonging
Yana reflects on how she could not relate to disability before her own spinal cord injury, suggesting a sense of remoteness of disability to many people. Through such self- reflection came an attempt to rationalize and justify the behavior of people around her and society at large. She poses a paradox of remoteness and proximity of disability at the same time.
It is the realization of the body’s fragility that she associates with changing the attitudes about disability. The research in social psychology confirms that people who have recently acquired an
160 impairment are likely to hold pre-impairment attitudes towards disability and thus the disabled self (Morris, 1989), which tend to be predominantly negative.
I used to perceive disabled people…nobody understands what they need. I think this perception can be explained by the lack of information. No one interacts with the disabled, they cannot be seen on the street. And then I looked at it from a different angle. They are the same people who might have experienced trauma which can happen to anyone any second. Accident is just a second, but otherwise this person hasn’t changed. (Yana) Referring to her experience with her husband who died in the same car crash that left her paralyzed, Svetlana comments on the circle of friends that was centered around her husband.
Similar to other participants, Svetlana rationalizes why people who used to be close distanced themselves. She brings in an example of being invited to a picnic after the accident where people kept asking if she needed anything. Even though she tried reassuring her friends that she would ask if she needed something, the discomfort was palpable.
I don’t blame people. They didn’t abandon, they simply kept away. If I were them and I would have to interact with someone who used to be able-bodied and became disabled, I think I would be scared to come visit this person too. (Svetlana)
Nadezhda justifies someone’s negative attitude by the fact it was a bad day for this person. Rationalization and reinterpretation of the situation becomes a way to position oneself in the larger societal context.
I try to reinterpret a situation in a positive way - any negative look or a negative phrase directed at me and my daughter when we are together. You simply start saying to yourself that this person is having a bad day and is in a bad mood. If we met him on a different day, his mood would be different and he would treat us differently. It’s not people that are bad, it’s the circumstances. (Nadezhda) Irina justifies the lack of accessibility in the entrance to her apartment by suggesting that it helps her not give in to her disability.
Getting into the house (that has stairs) is actually fine. It is good for me to train my leg. The ramps are almost everywhere, and even if there are stairs, it is good for me. (Irina)
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When it comes to explaining why certain views about disability persists or why certain structural barriers exist, the participants were not indicating the macro-level issues. Rather, they were focusing on the context of the situation. Svetlana considers the money to be the main problem.
Yes, you can’t get into these lifts or get out of them (referring to the elevators in older Soviet-time buildings). This is our infrastructure that hasn’t adjusted yet, however our deputies, governors are doing their best, the problem is the lack of money. (Svetlana)
Nadezhda expresses a similar thought when discussing a crisis center for women that was not accessible. Nadezhda invokes history to explain inaccessibility. By drawing a connection between the buildings many of which are constructed in the Soviet times and their function in modern Russia, Nadezhda does not separate the past from the present and incorporates the past into her rationalization of why certain changes might not seem radical or inclusive enough.
When Nadezhda brought up a crisis center in our conversation as a solution for many pregnant women who experience financial problems, I asked whether it was accessible. When Nadezhda
(who is a wheelchair user) replied that it was not, she added quickly that there are a lot of people there who are willing to help. Suh approach to measurement and prioritization of what is just and inclusive reflects the process of negotiating one’s inclusion and belonging. By bringing in a sense of the past’s legacy and its impact, it becomes easier to argue that the terms of belonging are not as important as the belonging itself. Nadezhda justifies inaccessible spaces by disconnecting the structures built in the Soviet times from the Russian context.
There was so much buzz on TV about it (the crisis center), but the authorities simply can’t make it accessible because the buildings are old, there are no lifts or ramps, it’s impossible to do anything. The ground floor is rented out to stores6, so there is no way. (Nadezhda)
6 With a burgeoning trade and service businesses in the 1990s and 2000s in Russia, the ground floor of the fifth- or ninth-story apartment buildings are often rented out to small businesses.
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Cheung, Noel, and Hardin (2011) argue that system justification, or the endorsement of some of the ideologies and practices that create exclusion in the first place, can be explained by the need to feel connected with others. They argue that “from the viewpoint of the individual, the status quo is composed of groups that include them, groups that exclude them, everyday interactions with individuals who belong to these groups, and the perceived hierarchical relationships among these groups” (Cheung et al., 2011, p. 267). Belonging conceptualized in terms of daily interactions and interpersonal relationships arguably becomes more important than abstract ideas of inclusion and disability justice. Relationality embedded in understanding the experiences of mothers with disabilities suggests that system-justifying attitudes act as claims to feel included.
In their review of research on belonging Mahar et al. (2013) found that feeling valued and respected, and the influence of opinions and interactions of an individual with the group were identified as being important to a sense of belonging. A sense of belonging is seen as a desire to fit in and to feel “normal”. By normalizing the barriers that they encounter and by perceiving them as non-problems, mothers with disabilities try to fit in. Barriers serve as an external referent, something that anchors the subjective feelings, and create a contextual and relational tool through which belonging is understood.
The socio-material reality and the economic instability in Russia becomes an underlying and dominating framework for justifications of exclusion. By prioritizing what is deemed more important, mothers with disabilities align themselves with the able-bodied population to suggest that one cannot expect an improvement in one area, when the country itself is trying to get better.
As Kolářová (2014) noted in her theorization of the post-socialist “cruel optimism”, “the price for social belonging and the symbolic (self-)inclusion into the affective public” is “the
163 impossibility of expressing any political demands that would reveal the violence of ableism” (p.
266). Its critiques and demands can be deferred and postponed.
C. Enacting Agency
In accordance with the intersectional approach, the analysis of what the justifications represent and how to make sense of them necessitate the recognition of agency embedded in these accounts. Some earlier scholarship in disability studies argues that people with disabilities who express the ableist views are considered as someone who further stigmatizes disability, thus perpetuating oppression (Shakespeare, 1994). Is expression of such views can automatically be qualified as internalized oppression or internalized ableism? When discussing the meaning behind the rejection of the disabled identity by several people with impairments, Watson (2002) suggested that for many of the informants, disability was not about celebrating difference or diversity, but about defining disability in their own terms, under their own terms of reference. In other words, agency is important for allowing the voices of individual people to be distinct and to have a value. Feminist citizenship theory imparts a significant importance to agency. Agency respects the context of what was said and why. Instead of drawing a black-and-white picture of the complex reasoning behind the examples of justifying inaccessibility and negative attitudes, agency within citizenship framework allows us to view them above dichotomies. These acts, or the uttering of these acts, can be viewed not necessarily as transgressive, but as willing, voluntary acts within a particular discourse (Butler, 1997). The agency is not constrained, rather it is both constituted and constituting. Instead of foregrounding the discourse/structure, this approach places agency and discourse/structure on par with each other. Theorization of narratives from multiple vantage points expand the interpretation of the exploratory findings without prioritizing the structural over personal or vice versa. Ultimately, the strength of the
164 concept of belonging lies in the fact that it enables the inclusion of person-centered, emotional, subjective, social, and societal dimensions in the study (May, 2011).
As such, the complexity of belonging in its person-centered aspect inevitably invokes the question of its opposite – social exclusion and denial of belonging. Irrespective of whether mothers with disabilities identify with the rest of society, they still need access to belong. If access is denied, naturalization of the exclusion is unavoidable.
Belonging questions often emerge because we feel that there are a range of spaces, places, locales and identities that we feel we do not and cannot belong to, in the sense that we cannot gain access, participate or be included within. Collective places constructed by imaginings of belonging, however, are constructions that disguise the fissures, the losses, the absences, the borders within them. The imagining also refers to their role in naturalizing socially produced, situational and contextual relations, converting them to taken for granted, absolute and fixed structures of social and personal life. They produce a ‘natural’ community of people and function as exclusionary borders of otherness. Belonging therefore tends to become “naturalized” and thus invisible in hegemonic formulations. (Yuval-Davis, Anthias, & Kofman, 2005, p. 528) In other words, belonging is a starting point for challenging exclusions that are often naturalized. Furthermore, under such naturalization of belonging is often structural injustices. In their interviews with women with intellectual disabilities, Pestka and Wendt (2014) concluded that the search for belonging increases these women’s vulnerability to abuse. Societal devaluation, the want for social status, and the need to have a partner influence the women’s experiences to remain in violent relationships. In their analysis of the narratives of Lesbian, Gay,
Bisexual, Transgender, and Queer (LGBTQ) people amid anti-LGBTQ campaign in Russia,
Soboleva and Bakhmetjev (2015) found that some of their respondents reproduced homophobic stereotypes by blaming themselves and by recognizing the pervading cultural norms as dominant over individual’s values. Similarly, my interviewees’ desire to conform result in justification- based approach to belonging.
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The next section provides more evident examples of enacting agency. To reinforce the idea above, these instances have structural constraints and should be analyzed in the context of what is possible in that realm.
1. Positivity
One of the prominent mechanisms for approaching the barriers that participants talked about was positivity and a positive outlook. This positivity was directed both inward - in the way these women viewed themselves, and outward - in the way they wanted other people to see them. For Evgeniya, a positive approach opened the doors for engaging in assessments of how accessible the local schools are. The story of her collaboration with the local government started when she could not find a single accessible daycare for her daughter. Evgeniya was hoping that because the daycare close to her house was part of the large-scale construction of a new daycare facility, accessibility would be incorporated into the construction project. When the daycare opened and it was not accessible, Evgeniya felt outraged and started making calls to complain about this situation. That was the beginning of her involvement in accessibility assessments.
I realized that if I don’t start doing it myself, nobody will. I started meeting with mayor, conducted the assessment of all the schools designated as accessible in Novosibirsk. And that’s how it started (Evgeniya).
However, she doubts this opportunity and this involvement would be possible if she was critical and negative of the barriers that she faced.
It all started with a negative experience, but I got over that fast. You can’t go far with negative attitudes (negativ).(Evgeniya) This incident is reflective of how the collaboration with authorities is conditioned by the kind of attitude a person with a disability has. Russia had no history of disability rights
166 movements equivalent to the examples in the USA or UK. Instead, advocacy efforts are often carried out in collaboration with or under the supervision of the government.
The notion of negativ is very widely used in the participants’ interviews. Negativ7 refers to the overall negative sentiment surrounding an environment or a person. It can manifest in staring or rudeness or other ways of unfavorable expression that most of the interviewees reported encountering. However, there was insistence on the importance of not giving in to it and staying positive.
Anticipation of negativ makes people with disabilities prepare themselves mentally to use this strategy. It becomes a defense mechanism as well as a way to change societal perspectives, especially in the context of the maternity clinic, where a disabled body is less likely to be welcome. Nadezhda used this strategy when she had to go to the clinic for the first time as an act of deterrence.
My friend gave me advice. She told me that when I go to the doctor to register for the regular checkups, I needed to imagine that I wear a cap and that no one can see me. She told me not to pay attention to anyone. “Get in and tell them you are here to give birth, that’s it. This way you prevent all the unnecessary suggestions because the doctor will see your attitude (nastroi). Smile and don’t let anyone affect you.” (Nadezhda). In other words, there is readiness to encounter anything other than a positive reaction pushing people with disabilities to think through their actions. Moreover, the fear of encountering a doctor who might question a disabled woman’s right to give birth is not unfounded not only in the literature but also in the accounts of the women I talked to.
The introduction of new technologies that offers more control over reproduction brought in new forms of maternal responsibility. Women are increasingly accountable for their children’s disabilities if they can be detected during the pregnancy (Boardman, 2011). Considering the
7 It is a calque from the English “negative”, which is used as a noun in Russian.
167 deeply entrenched misconception that women with disabilities always pass on their disabilities or that they jeopardize the “health” of the babies, there is an increased pressure to “be responsible”.
This rhetoric of responsibility gives the medical professionals the leverage to dissuade these women from giving birth. Frederick (2014) observes the deep-seated legacies of eugenics that consider disabled women as incompetent to be mothers and that reflect in such practices as intensive mothering that create pressure to have child-centered homes that shield children from responsibility and hardship. Mothering with a disability challenges intensive mothering because its very existence foregrounds the realities of imperfection, risk, pain and suffering - the very hardships from which mothers are now expected to shield their children (Frederick, 2014).
Galina recounts the incidence that supports the deeply entrenched ableist attitudes towards women with disabilities.
I got pregnant. We (my husband and I) happily went to the clinic. Fifth week, just the beginning. And there they tell us “We are waiting for you tomorrow to perform an abortion. I ask, “Why?” “It’s the nature of your disability, your kidneys don’t function properly, you can’t walk, you have osteomyelitis. Can you imagine what it means? (Galina) In such environment of pressure, positivity for some becomes a necessity and what seems to be the only possible way to react. When it is a child that reacts with a sense of shock, the interviewees expressed hope that the parents will explain what the interaction with a disabled person should looks like, but the frequency of the incidents involving people’s reactions that women with disabilities experience on a daily basis suggest that the macro-level of disability policies that are discussed more often after Russia ratified the UN Convention on the Rights of
Persons with Disabilities in 2012 does not trickle down to the spaces of the everyday. Here is one of the incidents that Svetlana described,
To avoid reaction, you need to learn not to react yourself. Smile, look, wink. I had one incident when I went to the store and a child started screaming “Invalid, invalid, who let the invalid in?” As if I was a dog that was let in. I guess the parents have not taught the
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child, they probably talk about the disabled negatively. The child was shocked. I winked at him, he was taken aback. His mother pulled him closer and said “What are you doing, you can’t do it”. Usually children stare, the adults more or less got used to us. (Svetlana) Important to our understanding of the context of the responses that people with disabilities might choose to elicit is also the experience of being stared at. In her theorization of staring, Garland-Thomson (2009) explains that an act of staring is considered inappropriate and mutually embarrassing act. Etiquette cautions against untoward eyeing, and staree feels being intruded upon. She analyzes the logic underlying staring at a disabled body. She writes that rather than accepting disability and accommodating it as an expected part of every life course, we are stunned when it appears to us in others. The visibly disabled body compels our attention and obscures the personhood of the bearer. The relational nature of staring that involves at least two parties requires a response from the individual being stared at. With an intense sense of otherness that accompanies staring, mothers’ reactions involving smiling back and expressing cheerful attitude attempt to reclaim the personhood back and position disability in opposition to the image of dependent, unhappy disabled people.
Sometime smile and openness serve as a bridge for building communication that otherwise might not happen. Disability becomes a teachable moment when disabled people want to challenge the fear and anxiety many people have toward disability. When children express interest and initiate the contact, people with disabilities might feel the importance of reaching out to parents through their children. Nadezhda resorts to such technique.
Children come up to me in the local clinic, they see the wheels, they find it interesting, we discuss how big the wheels are. It is funny to watch their mothers when the children go back to them and tell them they want the same thing…I start smiling vigorously. And the moms have nothing left but start smiling back. (Nadezhda)
Positive thinking and the ideas around the power of positive thinking originates in popular psychology and the plethora of self-help books that flooded the Russian market in the
169 recent years. Self-help literature promotes the idea that words and thoughts directly produce social reality and that everything depends on oneself. It attempts to transform the reader’s personhood through the Foucaldian ideas of governmentality through self-regulation. The discourse of self-improvement is not new to Russia. During the Soviet times, manuals on self- improvement (samovospitaniye) were prevalent, however the difference between the past and the present effect of these practices is that self-improvement in the USSR was supposed to support the building of communism – while in the contemporary self-help discourse the telos is primarily to gain personal happiness and success (Salmenniemi & Vorona, 2014). Russia was not immune to the rise of popular psychology. Cultural production in Russia shifted from the didactic soviet model to a market-driven one (Salmenniemi & Vorona, 2014).
As a trained psychologist, Olga was reflecting on why people with disabilities feel down and why positive attitude, self-affirmation is much more productive way of living.
Why do we pity ourselves? Because you feel broken by your disability, you can’t create, you are not a human. You always feel sorry for yourself, you are hiding. Everything you do is interpreted through this. And then when you let go, when you say yes, this is the way I am. Yes, I have differences (osobennosti), yes, I have a strong personality. I can certainly take care of prosthesis for myself. It all becomes a matter of technicality when you perceive something as a regular activity without involving your emotions. (Olga)
Olga associates this positive outlook with agency. She believes that a high self-esteem is an act of expressing one’s agency that, ultimately, creates a tangible difference in the life of the disabled person through self-help.
Irina expresses a similar belief in the power of self-help that allows her to have more control over her condition. Irina was diagnosed with multiple sclerosis, and she is a mother of five children. She credits her support group in teaching her how to think positively.
The most important thing for any person with any disease is to have faith and a positive attitude. When you have negative thoughts, you feel down. The leg twitches, you have a headache. I learned how to deal with it. I learned how to control it. (Irina)
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Nonetheless, the discussion of self-help narratives acquires a deeper meaning in the context of disability. Because self-help narratives align with the neoliberal values of individuality and personal responsibility, the proliferation of popular psychology can create a dangerous environment in which disability is disentangled from the social. People with disabilities become responsible for “regulating” and overcoming their disability to become disciplinary citizens. Discussing the effect of self-help books in the context of depression, Philip
(2009) argues that by encouraging readers to regulate their conduct according to the liberal virtues, self-help books stifle debate about depression, disavowing the socio-political context and limiting how individuality can be expressed. Fritsch (2013) discusses how the contemporary production of disability is built on positive affects. She argues that,
the disabled have been positioned as the inspiring crip, the ones who will be cured through positive thinking, and as an individualized problem that is solvable. Disability is caught up in the ableist turn towards healthism and the imperative for everyone to have intensively enhanced bodies. (p. 144) The idea of self-sufficiency is also associated with neoliberalism and its emphasis on personal responsibility and retrenchment of the state. It is also embedded in the Foucauldian idea of governmentality and control of the self. Such discourses of governmentality are not limited to neoliberalism. In fact, Chatterjee and Petrone (2008) track the history of engaging with the notion of the Soviet subject and selfhood, while Oushankine (2000) and Matza (2012) theorize the post-Soviet subjectivity. If we position self-sufficiency only in the realm of neoliberalism, we reduce its meaning to the idea of engagement in the paid labor market in the wake of the government retrenchment from welfare without acknowledging its presence in contexts that are not purely neoliberal. Sanghera (2014) invokes the notion of moral worth embedded into the aspects of economic and social life, when moral economies, lay normativity, moral rules, and ethical beliefs are necessarily incorporated into people’s daily lives and encounters, from family
171 obligations and communal values to market norms and property rights. If we think of self- sufficiency as a matter of personal dignity, we might challenge the underlying dehumanization of people with disabilities that pushes them to foster it.
D. Claiming Agency: Finding Ways Around
The idea of finding ways and adjusting is closely connected to the avoidance strategy and to the access to alternative means of achieving a goal despite the barriers. I will interrogate how alternative ways of being are constructed by mothers with disabilities. The access to these alternative ways that I refer to as micro-strategies is dependent to a large extent on a woman’s socioeconomic status, marital status, personal connections, because they determine what it means to be able to secure access, whether it is an opportunity to give birth in the most accessible way or whether it is a desire to be involved in the children’s education through reliance on tutors.
This enactment of agency is a way to resist and find creative solutions for fitting in.
Yana expressed disappointment over the fact that she cannot participate actively in her children’s school life. Children’s education as well as the process of getting it is very important for Yana. To have a sense of how her children are doing and to make sure they are getting a quality education, Yana hired tutors.
There are some changes (improvements) in accessibility. As for bringing up my children, well I do what I can. If I cannot take them somewhere (due to inaccessibility), I hire tutors, for example a math tutor, so that they can come home. There is no problem with it now. So if I can’t go somewhere, they come here (Yana). Svetlana whose socioeconomic situation does not allow her to resolve an issue by paying for something, has embraced her status as a biological citizen (Petryna, 2003) tied to her diagnosis and fought for what she deserves (shto polozheno).
You should not be afraid to contact the authorities, the organizations of the disabled, you need to fight (dobivat’sya). For example, I had them (authorities) pave the area outside my house. We should not be afraid to ask for what is ours (polozheno). The way I see it is
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that I don’t need any special help, just take care of the things that will make my life easier to start with. (Svetlana)
By claiming her rights as a disabled person, Svetlana is not invoking a discourse of pity.
She rationalizes the need for help (it is mostly related to the accessibility of her otherwise very modest house) by saying that it will make her independent in the long run. The reliance on the originally Soviet system of monetary and in-kind support is supplanted by the appeals to the neoliberal values of responsibility and self-sufficiency in women’s accounts. However, by successfully claiming her rights to have accessible house, Svetlana realizes the physical limits of where these rights stop. The fence that separates Svetlana’s house from the street demonstrates a stark contrast between a modest but accessible area around her house and the street that the house sits on. The road on the street is not paved making it treacherous if not completely impossible to use this road when it is muddy after rain. Svetlana noted ironically that in order to get to her mother who lives on the street next to hers, she has to drive sometimes.
Maria’s take on strategizing stands out from the rest of the accounts, because she presents a perspective of not only a mother but also a head of the organization for the blind. This macro- level perspective on how a change can be achieved on a larger scale is underpinned by her organization’s contact with the local authorities. Maria expressed skepticism about the institutional level changes manifested in such initiatives as the federal program Accessibility
2011-2020 with a goal of improving accessibility of the key socially important facilities and the quality of social and medical services received by people with disabilities. Her commentary on the way the program is implemented is reflective of her skeptical views. According to Maria, the law creates animosity against blind people by authorizing the installment of tactile pavements,
Braille plates, and audible traffic signals in places where it was not necessary and where it brought in the complaints from the able-bodied people. For example, she continues, tactile
173 pavements along the road make people stumble, and the audible traffic signals that are not turned off during the night make the local community angry. Maria thinks that accessibility built on hatred is not what disability community needs. Authorities might follow the letter of the law but by doing so they do not take any input from the disability community. Moreover, Maria highlights that construction projects like that always involve some corruption when contractors are motivated by how much they will be paid for the project rather than by the opinions of the community.
Maria evokes the notion of access that extends the letter of the laws and regulations.
McRuer (2006) defines an accessible society as not one with ramps and Braille on buildings, but one in which our way of relating to, and depending on each other, have been reconfigured. Maria suggests that such reconfiguration has not happened yet despite the presence of the law.
Nevertheless, Maria recognizes significant improvements that have been made in the quality of relationship between the disability organizations and the local government. Maria is invited to the meetings with the mayor, government employees call her to ask questions. The personal level of connections she has built is seen as an effective mechanism for achieving change.
When you know specific people, then you have a chance at building relationship between the disability organization and the local authorities, because you know who is responsible for a certain issue. First, you can suggest your ideas and, second, you can hold this person accountable. (Maria) In other words, the collaboration with individuals in the position of power makes the power less abstract and creates a space for the actual dialogue. Working in tandem with the officials and invoking one’s deservedness based on the disabled status becomes a way to enact agency within the limits that foreclose systemic change but negotiate the spaces for belonging.
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E. Conclusion
This chapter explored one of the fundamental questions underpinning the citizenship and disability studies – belonging. How is belonging understood by mothers with disabilities?
Systems justification that might seems counterintuitive to social justice agendas of naming the exclusion and opposing it is one of the mechanisms used by mothers with disabilities in their drive for belonging. Despite recognizing the existence of barriers, whether they are physical or attitudinal barriers, mothers with disabilities tend to invoke history, people’s individual characteristics, and other factors to argue that the barriers are justified and that they fit within the context they live in. Belonging is not only about the abstract membership within a specific category, but rather a relational, daily engagement with the world that imparts a new meaning to the concept of belonging. Instead of conceptualizing these experiences in terms of internalization or “false consciousness”, I suggest that by reflecting on the pragmatic aspect of justifications, we open up a more productive discussion of different visions of belonging and expressions of agency.
Some of the ways that the mothers I interviewed responded to the barriers they encounter on a daily basis are based on the notions of positive attitudes that become a mechanism for negotiating belonging. The enactments of agency that prioritize collaboration and appeasement cannot be analyzed form the empowerment perspective that challenge the societal attitudes toward disability. These acts of citizenship reflect the limits that the interviewees are either unwilling or not able to cross. As such, the accounts of mothers with disabilities shift the ideas around agency and the presumption around its anti-oppressive nature. The stories also emphasize the role of belonging in conceptualization of citizenship. The urge to belong and be a part of the social body transcends some of the fundamental questions around the systemic disability
175 injustices. The lived citizenship prioritizes an immediate and more tangible mechanisms of achieving what mothers see as improvements for themselves and their families.
VIII. CONCLUSION
My dissertation explored the lived experiences of mothers with disabilities in Russia through the framework of reproductive citizenship. It provided an in-depth understanding of how intersectional categories of motherhood and disabilities shape the ways in which mothers with disabilities create meaning about themselves, how they view supports and how they make claims about belonging. The studies of lived citizenship can illuminate nuanced and intricate configurations of negotiating one’s right to be considered a citizen. As reflected in the experiences and discourses of the research participants, reproductive citizenship is best conceived of in intersectional terms, as a bundle of practices, attributes, and possibilities that encapsulate subjectivities, care, and belonging. The contradictions in how mothers with disabilities view themselves are reflective of the complicated ways intersections of gender, disability, motherhood, and class are manifested differently depending on the context.
The dominant discourse that associates motherhood with the primary role for a woman and explicitly highlights the heteronormative nature of this role keeps silent about whether this role is meant for all women. Yet, women’s absence in representations is not equivalent to their actual absence as historical actors (Lister, 2003). Mothers with disabilities might not be officially excluded from becoming mothers, yet their experiences suggest that access is conditioned by multiple factors. The path toward realizing a subjectivity of a mother is fraught with multiple barriers, necessitating interrogation of how disability shapes these experiences. In other words, the paradox of being a mother with disability locates these experiences on the continuum of inclusion – exclusion. This is not to deny the violations of bodily integrity against people with disabilities who still live in institutions. Reports of forced sterilization and other human rights
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177 violations in the psycho-neurological internaty (one of the types of institutions in Russia) abound suggesting that exclusion has very tangible implications for people with disabilities.
The dissertation focused on answering three research questions that were addressed in the last three chapters.
A. Summary of Major Findings
In answering the question about how women with disabilities construct their self, I examined how mothers with disabilities positioned themselves in their daily lives. Motherhood as it relates to ability to care for their children and have special connection to them certainly dominated the accounts that reflected maternal practice and maternal thinking (Lister, 2003).
However, this subjectivity was not all-encompassing. The desirability of motherhood was contingent on whether they could find the right partner recognizing that marriage was not just a matter of meeting the expectations of being a woman but also a matter of economic and social stability. Disability that is devalued in one context, specifically when woman’s right to be a mother is questioned by the medical professionals, becomes a way to assign a new meaning to their lives. What is notable is that reproduction becomes a ground for claiming citizenship that is otherwise significantly limited by the structural and attitudinal barriers. The only high-profile non-profit organization in Russia that represents the rights of parents with disabilities, Katyusha, works within the framework of reproductive citizenship promoting the role of people with disabilities as parents. By relying on the narratives of family values, the organization is expanding the scope of citizenship for people with disabilities and advocating for broader changes under the umbrella of motherhood and parenthood. The way disability is seen suggests its strategic value as a tool that helps to expand the limits of citizenship through motherhood.
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In answering the second question about how support influences the experiences of mothers with disabilities, I analyzed the complexities of being a provider of care and relying on care as a recipient. In the context where care is predominantly under the purview of the system of institutions, configurations of care within families remain invisible. The boundaries between care and child-raising are blurry. Cultural expectations of care provision by family members perpetuate this invisibility. What participants define as care encapsulate not only the daily tasks of providing physical support but also the creation of conditions (i.e., (in)accessibility) that will render such support (un)necessary. Relational nature of care when women rely on the help from the strangers on the street or from their children is normalized when no alternative mechanisms are available. By operationalizing care in terms of supports and help, this chapter broadened the empirical depth of care as an analytical category. The experiences of mothers with disabilities decrease the ideological divide between feminist and disability studies literature on care by arguing that care is neither only about dependence, nor is it an epitome of interdependence. It is a process and adjustments that become unavoidable in the context of informal care. It is important to explore informal care not as an example of “enforced dependency” and “compulsory altruism” when the carer has no choice but to keep on caring (Kröger, 2009) but as a system where care is entangled with mundane support. Informal caregiving entangled with cultural expectations is an important area of research that requires further exploration.
The last question that explores how mother with disabilities claim belonging can help illuminate our understanding of why social justice movements in a way they exist in North
America, specifically disability rights movement, cannot always be replicated in other cultural contexts. The participants might recognize the injustices they are affected by, however, they do not view them in the context of social justice. The protests in the recent history of Russia are
179 driven by the appeals grounded in everyday experiences (Evans, 2012). If we interpret the development of civil society in Russia mainly in terms of the struggles of human rights groups and political opposition movements, we will neglect most of the processes that reflect participation. For people with disabilities, social and economic rights emerge as prominent areas of concern, especially in contrast to political rights (Henry, 2012). The most significant protest among benefits recipients in general and people with disabilities in particular broke out in 2005 in response to the reforms that abolished benefits that existed since the Soviet times. People were concerned about very tangible effects of the reforms: deterioration of their financial situation and the state’s abandonment of its responsibilities towards groups that traditionally enjoyed high status in society (Wengle & Rasell, 2008).
Instead of conceptualizing the accounts that justify attitudinal and physical barriers as a sign of oppression, I locate these accounts in individuals’ agencies. Disabled women have challenged their construction as passive victims (Lister, 2003). I challenge a narrow approach to defining what is considered a political participation as an indicator of expressing agency. By navigating the realities of becoming and being a mother, these women are already acting as citizens and reflect a process-based rather than a status-based understanding of citizenship. Yet, the scope for acting as a citizen and expressing one’s agency can be limited by the access to resources that allow some women to bypass the barriers, by existing configurations of framing oneself as deserving citizen and by the structural limitations that makes personal connections the only way to achieve change.
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B. Contributions
The dissertation’s contributions are both theoretical and empirical. The theoretical tools of intersectionality and citizenship have been applied to foreground the ambiguity of the experiences of disability.
By focusing on the intersectional experiences of motherhood and disability, this dissertation sought to unsettle the binaries and uncover the instabilities of the subject positions, support practices and conceptualizations of belonging. The ambiguity of what it means to be a citizen is reflective of the intersectional nature of my research that attends to multiple patterns and that considers structural alongside the personal. By setting the experiences of mothers with disabilities alongside the contextual environment that includes discourses around motherhood and traditional values, the cultural and socio-economic configurations of families, and individual circumstances of each participants, I avoid flattening and universalizing the voices of mothers with disabilities. The socioeconomic as well as marital status of many participants locates them within a particular context that creates patches of privilege surrounded by the terrain interspersed with devaluation of disability and discriminatory attitudes. Along with individual level of context, there is a macro-level context of the country promoting motherhood as its national project and a valuable claim for citizenship. The intersectional approach aims to account for relationships, collusions, and disjunctures among forms and sites of power (May, 2015), however, this research demonstrates the subtle and invisible role of the larger systems that structure the everyday. Intersectionality allows us to recognize multiple levels of interactions that exceed the binary of macro and micro and avoid prioritizing the impact of one over another.
The dissertation continues the research into lived citizenship using the context of motherhood with disability to demonstrate how the practices of everyday are deployed in
181 opposition to hegemonic conceptions of motherhood and nationhood discussed in Chapter I. At the same time, the dissertation explores how these experiences can be infused with the dominant narratives that value one subjectivity over another. By breaking down the framework of citizenship into specific elements of subjectivity, care and belonging, this research grounds a less clearly defined lived citizenship in more tangible theoretical constructs. The construct of subjectivity underscores contradictions and tensions of forming and expressing the self. As the narratives of mothers with disabilities demonstrated, motherhood might exist as a distinct status position, however more often, women’s subjectivities shift depending on the context (their children, husband, barriers) with disability infusing additional and not necessarily negative dimension of the self. Motherhood destabilizes the category of disability and vice versa. In an environment where identity-based categorizations cannot be easily transferred from the Western contexts, intersectional analysis of subjectivities provides the researchers with a language to theorize at the level of lived experiences.
A second theoretical construct that has long been associated with citizenship theory is care. The gendering of care and the gendered division of labor in which women do more labor reveal the devalued nature of care. Motherhood with disability makes the distinction between providing and receiving care blurry. The local context (in the case of my research, the invisible help of maternal grandmothers), support from outside (peer support) renegotiate the conditions of care making it much more multi-faceted. Without romanticizing the nature of relationship embedded in care, such multiplicity reveals the privileges of relying on kinship, the relative financial security that marriage and the maternal capital provide. However, the same multiplicity exposes the challenges associated with relying on the children’s support in negotiating mothers’ accessibility needs and the lack of support directed specifically for mothers with disabilities.
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Such support would incorporate the needs of people with disabilities (i.e., accessible reproductive services) into such initiatives. The macro narratives of citizenship are still limited and lack intersectional understanding of the experiences.
The application of the construct of belonging reveals the mechanisms that motivate mothers to be seen as part of society. The lens of belonging foreground the individual voices and prioritizes the daily realities that necessitate proximity to the context that might not be inclusive from a disability studies perspective.
The danger of focusing on motherhood in the context of Russia creates a risk of reifying the category “woman” imposed by the dominant discourses. However, the silences and the absences that emerged in the research process as well as the instabilities of the ways mothers position themselves; the way they navigate different levels of support without minimizing their role as a mother and the way they see their belonging in terms of being able to relate to larger society, suggest that lived experiences disrupt the illusion of unitary and singular “woman”. In doing so, my research illuminates the instability of subject positions, complexities of being simultaneously a provider and a receiver of care, and systems justification embedded in the longing to belong.
From the Slavic studies perspective, this dissertation sought to problematize the unitary notions of “gender” and a monolithic view of lived experiences. As such, this research delved into the micro-level approach to citizenship infusing the cultural context of post-Soviet Russia.
The focus on mothers with disabilities at this historical juncture reflects the importance of bringing in intersectional perspective in the discussion of broader sociocultural changes in
Russia. The analysis of lived experiences and the prioritization of voices of people with disabilities demonstrates the universality of the myths surrounding women with disabilities as
183 weak and dependent and the specificity with which these women challenge the devaluation of disability through a complex and ambivalent set of practices and views that cannot be reduced to survival or resistance strategies. The latter would suggest a separation of the women’s experiences from the discursive values they inevitably incorporate and enact and treat their experiences as a priori uncontestable and “true”. This dissertation took the importance of the micro approach further by complicating it and revealing their inherently contradictory nature.
The post-Soviet context where the accounts of disability rarely reflect the social model and the notions of disability pride provides a unique locale for engaging in critical discussions of the inseparability of experiences from broader social structures.
The study also needs to be placed within a larger, more global context that goes beyond the nation-states. The study of transnational disability studies is a reminder that human rights framework is not sufficient to theorize the experiences of disabled people in non-Western context. The signing and ratification of the Convention on the Rights of Persons with Disabilities
(CRPD) by the nation-states is not equivalent to citizenship rights that might be easily eroded despite the legislation (Soldatic & Grech, 2014). In other words, citizenship and the lived experiences cannot be taken for granted. In fact, by focusing on citizenship, we can demonstrate more intricate and less visible areas or injustice and, simultaneously, the potential for expanding and reconceiving of the disability studies beyond the framework of rights and the idea of the unified and unproblematic disability identity.
There is growing body of literature on disability in Global South and the ways in which its interrogation is impossible without a close analysis of the history of colonialism/imperialism/neoliberalism of the Global North. Russia does not fall neatly under a category of Global North or Global South. The second, intermediary world of postsocialist
184 countries has been beyond the reach of postcolonial theorists. Russia that acts simultaneously as the colonizer and the colonized is unable to join any of the extremes (Tlostanova, 2012). As such, the transnational epistemologies generated within such postsocialist locales can provide an analytical complexity and new theorizations, specifically in disability studies.
To dismiss the importance of the non-Western context is to fail to recognize that the experiences of race, class, gender, sexuality, and disability in the national context exist in dialectical tension with similar experiences of race, class, gender, sexuality, and disability in global contexts (Erevelles, 2011). Erevelles (2011) critiques the mutual dismissal of feminist disability studies and third world feminism by each other. She warns that overreliance on metaphors rather than material experiences that do not always celebrate disability in feminist disability studies as well as the invisibility of disability in third world feminist analysis results in flattened images and conceptualizations and missed opportunities for common platforms. The research on the experiences of mothers with disabilities in Russia contributes to the conversations that help make the connections among different strands of disciplinary analyses and theories.
C. Limitations of this Dissertation and Future Research
The exploratory nature of this dissertation inevitably posed a few limitations that need to be addressed in future research. First, the research focuses on one tool of data collection – qualitative interviews. Other qualitative methods, including the focus groups, could provide an additional layer to the data. As these interviews and the women’s accounts barely scratched the surface in exploring mothering with disability, involving women’s families as focus group participants could have provided a more comprehensive, polyvocal perspective at the level of the
185 family rather than an individual. Future research needs to investigate the role of kinship in claiming relational citizenship that is not tied to the individualist notion of a citizen.
Second, the research involving people with intellectual and developmental disabilities as well as mental disabilities is still scarce in Russia. Yet, this population is one of the most marginalized groups that experience high levels of institutionalization and isolation. The lack of systemic, macro-level analysis of this group is reflective of the narrow understanding of accessibility and inclusivity that exists on the national level. Small organization like “Anton is right here” is an example of community-based efforts to reconceptualize what a life with autism can look like. The organization provides early education and social habilitation for people with autism. This emerging response from the bottom needs to be explored to connect citizenship framework to the local processes and community efforts. Such research is needed to gain a broader understanding of how disability is defined and how the transnational ideas about disability are adjusted to the local context and what new meanings emerge. More research on the experiences of people with mental as well as intellectual/developmental disabilities is needed to bring forward the silenced histories. However, by acknowledging this limitation, I attempt to make a first step toward a deeper engagement with the topic that makes an intervention on several levels.
Finally, this research provided a very broad and yet much needed discursive context that captures not only the inherently gendered nature of citizenship but also a brief history of gendered regimes in Russia that help explain why this moment in history with its anxieties around reproduction and the gender identity is important. The next step is to build on this discussion by addressing more tangible manifestations of the cultural discourses around disability by delving into policy documents, news coverage, social media to deepen the cultural
186 analysis. There needs to be a discussion of a more tangible impact of pronatalist policies and discourses on the experiences of mothers with disabilities.
By embarking on this dissertation project, I was driven by the disjunctures that existed between the official discourses and the lived experiences that reflect multiplicity and ambivalence rather than a neotraditionalist and unitary approach of what it means to be a mother in Russia. Though pronatalism was a starting point in my endeavor, the more I embedded myself into the research process, the more I realized how nuanced and ambivalent the experiences of disability are. I was very fortunate to have come across women who generously shared their stories and sometimes wondered about the potential of these stories to inform research in general. They offered a creative and productive way of being in the environment that continues to operate in the binary realms and that fails to recognize the potential of disability to intervene at both personal and structural levels.
APPENDICES
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Appendix A
Exemption Granted
July 15, 2016
Alfiya Battalova, MA Disability and Human Development 1640 W. Roosevelt Rd, M/C 626 Chicago, IL 60608 Phone: (951) 418-9651 / Fax: (312) 996-1233
RE: Research Protocol # 2016-0704 “Conceptualization of motherhood and disability through the prism of citizenship in Russia”
Sponsors: None
Please be reminded of the need to submit translated documents to OPRS via amendment. Please include with the amendment and associated documents: a) An explanation of who translated the documents; and) A basic description of this person’s qualifications for translating the documents. It is preferable that this person be independent of the research other than translating the documents.
Dear Alfiya Battalova:
Your Claim of Exemption was reviewed on July 12, 2016 and it was determined that your research protocol meets the criteria for exemption as defined in the U. S. Department of Health and Human Services Regulations for the Protection of Human Subjects [(45 CFR 46.101(b)]. You may now begin your research.
Exemption Period: July 12, 2016 – July 12, 2019 Performance Site: UIC Subject Population: Adult (18+ years) subjects only Number of Subjects: 30
The specific exemption category under 45 CFR 46.101(b) is:
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Appendix A (continued)
(2) Research involving the use of educational tests (cognitive, diagnostic, aptitude, achievement), survey procedures, interview procedures or observation of public behavior, unless: (i) information obtained is recorded in such a manner that human subjects can be identified, directly or through identifiers linked to the subjects; and (ii) any disclosure of the human subjects' responses outside the research could reasonably place the subjects at risk of criminal or civil liability or be damaging to the subjects' financial standing, employability, or reputation.
You are reminded that investigators whose research involving human subjects is determined to be exempt from the federal regulations for the protection of human subjects still have responsibilities for the ethical conduct of the research under state law and UIC policy. Please be aware of the following UIC policies and responsibilities for investigators:
1. Amendments You are responsible for reporting any amendments to your research protocol that may affect the determination of the exemption and may result in your research no longer being eligible for the exemption that has been granted.
2. Record Keeping You are responsible for maintaining a copy all research related records in a secure location in the event future verification is necessary, at a minimum these documents include: the research protocol, the claim of exemption application, all questionnaires, survey instruments, interview questions and/or data collection instruments associated with this research protocol, recruiting or advertising materials, any consent forms or information sheets given to subjects, or any other pertinent documents.
3. Final Report When you have completed work on your research protocol, you should submit a final report to the Office for Protection of Research Subjects (OPRS).
4. Information for Human Subjects UIC Policy requires investigators to provide information about the research to subjects and to obtain their permission prior to their participating in the research. The information about the research should be presented to subjects as detailed in the research protocol and the application utilizing the approved recruitment and consent process and document(s) only.
Please be sure to use your research protocol number (listed above) on any documents or correspondence with the IRB concerning your research protocol.
We wish you the best as you conduct your research. If you have any questions or need further help, please contact me at (312) 355-2908 or the OPRS office at (312) 996-1711. Please send any correspondence about this protocol to OPRS at 203 AOB, M/C 672.
Sincerely,
Charles W. Hoehne, B.S., C.I.P. Assistant Director, IRB #7 Office for the Protection of Research Subjects
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Appendix A (continued) cc: Tamar Heller, Disability and Human Development, M/C 626 Sarah Parker Harris, Disability and Human Development, M/C 626
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Appendix B
Recruitment Email
Greetings, You are receiving this letter because you have been identified as a potential participant in a research project led by Alfiya Battalova at the University of Illinois at Chicago in the Department on Disability and Human Development. This project concerns mothering with a physical disability. The project will combine interviews from several women with disabilities 18 to 60 years old who either have or used to have a child and who identify as having physical disability/disabilities. I am asking that you consent to an interview, either face-to-face or via telephone, that will last approximately one to two hours. If you cannot personally participate, I would ask that you identify an individual who is also a mother with a physical disability and forward this information to her. Please review the document that is included with this letter so that you understand the research process and the expected benefits of participation. You will be asked to review the included informed consent document and indicate your understanding of it before you will be able to participate in the interview. The interview will include topics that focus on your experiences as a mother, things you find the most important about mothering, the environment that shape(d) your perceptions. A researcher will contact you via phone in the next 2 days to discuss your participation in an interview and schedule a time to do so. Alternatively, you can contact the researcher by e-mail at [email protected] or at +7(951) 418-96-51. Thank you for your consideration and I look forward to hearing from you soon,
Alfiya Battalova Principal Investigator
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Appendix C
Recruitment Email (Russian)
Здравствуйте, Вы получили этот имейл как возможный участник исследования, которое проводит Батталова Альфия, кандидат наук университета штата Иллинойс в США на факультете изучения инвалидности и развития. Исследование посвящено изучению опыта матерей с физическими ограничения здоровья. Исследование будет состоять из интервью с несколькими женщинами с ограниченными возможностями здоровья, которым от 18 до 60 лет и которые являются матерями. Для участия в исследовании Вам необходимо согласиться на участие в очном или телефонном интервью, которое продлится от 1 до 2 часов. Если по каким-то причинам Вы не можете принять участие в исследовании, но знаете кого-то, кто мог им заинтересоваться, пожалуйста поделитесь этой информацией с исследователем. Прошу Вас ознакомиться с документом, приложенным к этому письму, в котором описывается процесс исследования, а также премущества участия в нем. Ознакомьтесь с документом информированного согласия и укажите свое понимание условий исследования до начала интервью. Интервью будет посвящено Вашему опыту материнства, тому, что важно для Вас как для матери, среде, которая формирует или сформировала Ваши представления о материнстве. Исследователь свяжется с Вами по телефону в течение следующих двуч (2) дней, чтобы обсудить Ваше участие в интервью и согласовать место и время встречи. Вы можете сами связаться с исследователем, отправив имейл на [email protected] или позвонив на +7(951) 418-96-51. Спасибо за интерес к исследованию.
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Appendix D
Recruitment Poster
Participate in Research! If you are: • a mother with physical disability • between 18 and 60 years old Share your experiences about motherhood! Become a participant of this study.
The interview will include topics that focus on your experiences as a mother, things you find the most important about mothering, the environment that shape(d) your perceptions. For more information, contact Alfiya Battalova at [email protected] or at +7(951) 418-96-51.
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Appendix E
Recruitment Poster (Russian) Участвуйте в исследовании!
Если:
• Вы мама с физическими ограничениями по здоровью • Вам от 18 до 60 лет Поделитесь своим опытом материнства! Станьте участником исследования. Данное исследование поможет углубить понимание опыта матерей с ограниченными возможностями здоровья. Исследование будет посвящено обсуждению Вашего опыта материнства, того, что важно для Вас как для матери, среде, которая формирует или сформировала Ваши представления о материнстве. По всем вопросам, обращайтесь к руководителю проекта Альфие Батталовой по адресу электронной почты [email protected] или по телефону +7(951) 418-96-51.
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Appendix F
Consent Form
University of Illinois at Chicago CONSENT FOR PARTICIPATION IN RESEARCH “Conceptualization of motherhood and disability through the prism of citizenship in Russia”
Why am I being asked?
You are being asked to be a participant in a research project about mothering with a physical disability conducted by a PhD student Alfiya Battalova (Department of Disability & Human Development) at the University of Illinois at Chicago. You have been asked to participate in the research because you are considered to be a key stakeholder in understanding the experiences of mothers with physical disabilities in Russia. We ask that you read this form and ask any questions you may have before agreeing to be in the research. Your participation in this research is voluntary. Your decision whether or not to participate will not affect your current or future relations with the University of Illinois at Chicago. If you decide to participate, you are free to withdraw at any time without affecting that relationship.
What is the purpose of this research?
This research is being conducted to gain greater understanding of the experiences of mothers with physical disabilities in Russia. The study will focus on discussing your mothering experiences, what your find the most important about it, the environment that shaped your perceptions. If you choose to participate, a researcher will interview you face-to-face or via the telephone. You will respond to questions, and share your opinions, experiences and expertise regarding being a mother with a physical disability.
What procedures are involved?
If you agree to be in this research, we would ask you to do the following things: • Schedule a suitable time with a researcher to participate in a 1-2 hour interview. • Verbally agree to participate in the study and digitally record the consent.
Approximately a total of 30 people may be involved in this research: all participants will be women with physical disabilities.
What are the potential risks and discomforts?
To the best of our knowledge, the things you will be doing have no more risk of harm than you would experience in everyday life.
Are there benefits to taking part in the research?
You may not directly benefit from participating in the research. However, the information you provide will help inform research and policy on disability and motherhood in Russia.
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Appendix F (continued)
What about privacy and confidentiality?
No information about you, or provided by you during the research, will be disclosed to others without your written permission, except: • if necessary to protect your rights or welfare (for example, if you are injured and need emergency care or when the UIC Institutional Review Board monitors the research or consent process); or • if required by law. Due to the cultural context that associates paperwork in Russia with red tape and creates an overall sentiment of distrust, the researcher will read the text of the consent form out loud and ask a potential participant to verbally state whether they agree to participate in the study. The interview will be audio taped and transcribed. You have the right to review and edit this. Only the researcher will have access to the tapes and transcripts. The tapes will be stored on the encrypted and password protected personal laptop of the PI. Personal data and identities will be assigned a pseudonym when transcripts are created and the link between data and an individual’s name destroyed as early as possible. If the data is published or reproduced in any way, names will not be used and major identifying markers will be changed. All of the research material, including audiotapes and transcripts, will be destroyed at the end of the research. When the results of the research are published or discussed in conferences, no information will be included that would reveal your identity.
Can I withdraw or be removed from the study?
If you decide to participate, you are free to withdraw your consent and discontinue participation at any time. If you volunteer to be in this study, you may withdraw at any time without consequences of any kind. You may also refuse to answer any questions you do not want to answer and still remain in the study.
Who should I contact if I have questions?
The researcher conducting this study is a PhD student Alfiya Battalova. You may ask her any questions you have now. If you have questions later, you may contact the researcher via email [email protected] or phone +7(951) 418-96-51.
What are my rights as a research subject?
If you feel you have not been treated according to the descriptions in this form, or you have any questions about your rights as a research subject, you may call the Office for the Protection of Research Subjects (OPRS) at 312-996-1711 (local) or 1-866-789-6215 (toll-free) or e-mail OPRS at [email protected].
Remember: Your participation in this research is voluntary. Your decision whether or not to participate will not affect your current or future relations with the University. If you decide to participate, you are free to withdraw at any time without affecting that relationship. You will be given a copy of this form for your information and to keep for your records.
Signature of Participant
I have read (or someone has read to me) the above information. I have been given an opportunity to ask questions and my questions have been answered to my satisfaction. I agree to participate in this research. I have been given a copy of this form.
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Appendix F (continued)
Signature Date
Printed Name
Signature of Researcher Date
Printed Name of Researcher
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Appendix G
Consent Form (Russian)
Почему меня просят принять участие в этом исследовании?
Вас просят принять участие в исследовании об опыте материнства женщин с ограниченными возможностями здоровья. Исследование проводит кандидат наук Университета штата Иллинойс. США, Батталова Альфия с факультета изучения инвалидности и развития. Вас просят принять участие в исследовании, т.к. Ваше мнение является ключевым для понимания опыта матерей с ограниченными возможностями здоровья.
Просим Вам ознакомиться с этим документом и задать имеющиеся у Вас вопросы перед тем, как соглашаться на участие в исследовании. Ваше участие в исследовании является абсолютно добровольным. Ваше решение об участии никак не повлияет на Ваши нынешние или будущие отношения с Университетом штата Иллинойс, США. Если Вы согласитесь на участие в исследовании, Вы имеете право в любой момент отказаться от дальнейшего участия в нем.
Цель исследования
Данное исследование поможет углубить понимание опыта матерей с ограниченными возможностями здоровья. Исследование будет посвящено обсуждению Вашего опыта материнства, того, что важно для Вас как для матери, среде, которая формирует или сформировала Ваши представления о материнстве.
Если Вы согласитесь на участие, исследователь задаст Вам несколько вопросов очно или по телефону. Ваша задача будет заключаться в том, чтобы ответить на вопросы, рассказать о своем опыте, связанным с материнством.
Процесс исследования
Если Вы согласитесь на участие в исследовании, Вас попросят:
• Договориться о встрече для проведения 1-2-часового интервью.
• Предоставить устное согласие на участие в исследовании и записать согласие на цифровой диктофон.
• Около 30 человек примут участие в исследовании. Все участники исследования будут матерями с ограниченными возможностями здоровья.
Возможные риски
• Насколько нам известно, потенциальный ущерб от участия в исследовании сведен к минимуму.
Преимущества участия в исследовании
• Вы можете не ощутить явную выгоду от участия в исследовании. Однако, та информация, которой Вы поделитесь поможет углубить понимание об инвалидности и материнстве в России. Защита и конфиденциальность данных
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Appendix G (continued)
Никакая информация о Вас, а также информация, предоставленная Вами во время исследования, не будет передана без Вашего разрешения, за исключением тех случаев:
• если необходимо защитить Ваши права или благополучие (например, если Вы получили ранение и нуждаетесь в неотложной медицинской помощи или когда совет университета по этике осуществляет надзор во время исследования или процедуры получения согласия на участие); или
• если того требует закон
В связи с культурными особенностями России, где документация часто ассоциируется с проволочками, бюрократией, а также вызывает чувство недоверия, исследователь прочтет текст согласия на участие вслух и попросит потенциального участника устно заявить о своем согласии на участие в исследовании.
Интервью будет записано на диктофон, а затем вопроизведено в письменном виде. У Вас будет право просмотреть текст своего интервью и внести в него коррективы. Только у исследователя будет право доступа к аудио записям интервью и его тексту. Аудио файлы с интервью будут храниться на зашифрованном и защищенном паролем персональном компьютере исследователя. Личным и опознавательным данным при вопроизведении интервью в письменном виде будут присвоены псевдонимы. Связка между данными и именами участников интервью будет уничтожена как можно скорее. Если данные будут опубликованы или вопроизведены любым иным образом, личные имена не будут использоваться, и основные опознавательные указатели будут изменены. Все материалы исследования, в т.ч. аудио файлы и тексты интервью будут уничтожены по окончании исследования. Когда результаты исследования будут опубликованы или представлены на конференциях, информация, которая бы устанавливала связь с личностью участника включена не будет.
Могу ли я отказаться от участия в исследовании? Если Вы согласились на участие в исследовании, Вы можете в любой момент отказаться и прекратить свое участие в исследовании на любом его этапе без каких-либо последствий для себя. Вы также можете отказаться отвечать на те или иные вопросы интервью и продолжить свое участие в исследовании.
К кому обратиться, если у меня есть вопросы?
Исследователя зовут Батталова Альфия. Она является кандидатом наук. Вы можете задать ей любые интересующие Вас вопросы. Вы можете задать Ваши вопросы, направив их по имейлу [email protected] или позвонив по телефону +7(951) 418-96-51.
Мои права как участника исследования
Если у Вас есть вопросы о Ваших правах как участника исследования, Вы можете связаться с the Office for the Protection of Research Subjects (OPRS) по телефону (312) 996-1711 или 1-866-789-6215 (toll-free) или [email protected].
Помните: Ваше участие в исследовании является абсолютно добровольным. Ваше участие в исследовании не повлияет на Ваши отношения с университетом в настоящем или будущем. Если Вы согласитесь на участие, Вы можете отказаться от него без ущерба для себя.
Вам будет прдоставлена копия этого документа.
Подпись участника
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Appendix G (continued)
Я ознакомился с данной информацией. Мне была предоставлена возможнось задать вопросы, и на мои вопросы был получен удовлетворительный ответ. Я даю свое согласие на участие в данном исследовании. Мне была предоставлена копия данного документа.
______Подпись участника Дата
______Фамилия участника (печатными буквами)
______Подпись свидетеля Дата
______Фамилия свидетеля (печатными буквами)
Если за участника исследования этот документ подписывает Законный Представитель его интересов, то ниже он или она должны поставить свою подпись.
______Подпись Законного Представителя Дата
______Фамилия Законного Представителя (печатными буквами)
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Appendix H
Interview Guide
University of Illinois at Chicago INTERVIEW GUIDE “Conceptualization of motherhood and disability through the prism of citizenship in Russia”
Welcome and thank you for your participation today. My name is Alfiya and I am conducting a study on the experiences of mothering with a physical disability. I would like your permission to tape record this interview, so I may accurately document the information you convey. If at any time during the interview you wish to discontinue the use of the recorder or the interview itself, please feel free to let me know. All of your responses are confidential. Your responses will remain confidential and will be used to develop a better understanding of how you and other mothers with disabilities experience motherhood.
At this time I would like to remind you of your verbal consent to participate in this study.
Your participation in this interview is completely voluntary. If at any time you need to stop, take a break, or return a page, please let me know. You may also withdraw your participation at any time without consequence. Do you have any questions or concerns before we begin? Then with your permission we will begin the interview.
• Tell me a little bit about yourself.
• Can you talk about your experiences as a mother? What has it been like?
• What are some of the things that you think shaped your perceptions about motherhood?
• Have these perceptions changed since you became a mother?
• How would you describe the person you were before and after becoming a mother?
• How has your life changed (if at all) since you became a mother?
• Tell me about your thoughts and feelings when you learned that are expecting.
• How did your family/friends react to the news? Tell me about their involvement (if any).
• Tell me about what your typical day looks like.
• Could you describe the most important lessons you learned from your experience as a mother?
• What do you most value about yourself now? What do others value in you?
• Where do you see yourself in five years?
• What helps you along the way?
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Appendix H (continued)
• After becoming a mother, what advice would you give to other women with disabilities?
• Is there anything that you might not have thought about before that occurred to you during this interview?
• Is there anything else you think I should know to understand your experience of mothering better?
• Is there anything you would like to ask me?
203
Appendix I
Interview Guide (Russian)
Здравствуйте.
Спасибо, что согласились участвовать в исследовании. Меня зовут Альфия, и я провожу исследование, посвященное опыту материнства женщин с ограниченными возможностями здоровья. Я бы хотела получить Ваше разрешение на то, чтобы записать наше интервью на диктофон, чтобы я ничего не упустила из сказанного Вами. Если во время интервью Вы хотите приостановить запись интервью на диктофон или само интервью, просто дайте мне об этом знать. Информация, переданная во время интервью, конфиденциальна и позволит углубить понимание исследователей о том, каким Вы и другие матери с ограниченными возможностями здоровья видите свой опыт материнства.
Я хотела бы Вам напомнить о вашем словесном согласии на участие в этом исследовании.
Ваше участие в данном исследовании является абсолютно добровольным. Если в какой-то момент во время интервью Вы хотите его прервать, сделать перерыв, или вернуться к сказанному ранее, просто дайте мне знать. Вы также можете полностью прервать свое участие в исследовании без каких-либо последствий для себя. Прежде чем мы начнем, есть ли у Вас ко мне какие-нибудь вопросы? Тогда с Вашего позволения давайте начнем.
• Расскажите мне о себе.
• Давайте поговорим о Вашем материнском опыте. Каков он?
• Что по Вашему мнению повлияло на Ваши представления о материнстве?
• Поменялись ли эти представления с тех пор, как Вы стали матерью? Если да, то каким
образом?
• Опишите каким Вы были человеком до и после материнства.
• Если Ваша жизнь изменилась с тех пор, как Вы стали матерью, то каким образом?
204
Appendix I (continued)
• Расскажите о своих чувствах и мыслях, когда Вы были беременны.
• Как Ваши семья/друзья отреагировали на новость о Вашей беременности? Расскажите о
том, какова их роль в Вашей жизни сейчас.
• Опишите Ваш типичный день.
• Чему научил Вас опыт материнства?
• Что Вы цените больше всего в себе? Что другие ценят в Вас?
• Какой Вы видите себя через 5 лет?
• Что помогает Вам в жизни?
• Какой совет мы можете дать другим женщинам с ограниченными возможностями здоровья?
• Хотели бы Вы добавить что-нибудь к сказанному ранее во время интервью?
• Есть ли что-то еще, что Вы могли бы добавить и что могло бы помочь мне лучше понять Ваш
опыт материнства?
• Есть ли у Вас вопросы ко мне?
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VITA
Alfiya Battalova Email: [email protected] https://uic.academia.edu/AlfiyaBattalova
EDUCATION PhD, Disability Studies, University of Illinois at Chicago, Chicago, Illinois, 2017 Certificate in Gender and Women’s Studies Dissertation Title: Reproductive Citizenship: Experiences of Mothers with Disabilities in Russia
MPA, Public Administration, University of Maine, Orono, Maine, 2011 Capstone Project Title: Are Employment and Public Support Programs Mutually Exclusive? A Study of Vocational Rehabilitation Practice
BA, (Regional Studies with additional certification in Russian-English translation), Omsk State University, 2007
TEACHING EXPERIENCE Department of Disability and Human Development, Chicago, Illinois:
DHD 201: Disability, Right and Culture (Teaching Assistant, Spring 2017)
DHD 204: Disability in Humanities (Teaching Assistant, Fall 2016)
DHD 203: Disability in World Cultures (Teaching Assistant, Fall 2016)
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PROFESSIONAL Research and Programs Coordinator EXPERIENCE Spinal Cord Injury BC, Vancouver, BC January 2014 – May 2016
Graduate Research Assistant Department of Disability and Human Development Chicago, Illinois August 2011 – May 2013
Advocacy Intern Center for Disability Rights, Rochester, New York May 2010 – July 2010
Exchange Programs Manager International Exchange Center, Omsk, Russia October 2007 – June 2009 SCHOLARSHIPS AND Charlotte A. Tate Multidisciplinary Research Award, AWARDS Department of Disability and Human Development, 2017
Summer Research Lab Grant on Russia, Eastern Europe, and Eurasia, University of Illinois at Urbana-Champaign, 2014
Fulbright Graduate Student Program, US Department of State, 2009-2011
PUBLICATIONS Battalova, A. (2017). Interrupted Trajectory: The Experiences of Disability and Homeschooling in Post- Soviet Russia, In Silova, I., Millei, Z. & Piattoeva, N. (2017) Childhood and Schooling in (Post) Socialist Societies: Memories and Experiences. Palgrave MacMillan.
Shaw, R.B.; McBride, C.; Battalova, A.; Martin Ginis, K.A. The ‘What, When and How’ of Spinal Cord Injury Peer Mentorship: A Brief Report (forthcoming).
Battalova, A; Maffin, J; Chernesky, J; McPhail, L; McBride C. (March 7-9, 2016). A Peer-based Approach to Enhancing Consumer Participation in SCI Research. Poster presented at ICORD Annual General Meeting, Vancouver, BC.
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Battalova, A. Review of Postcommunism from Within: Social Justice, Mobilization and Hegemony, ed. by Jan Kubik and Amy Linch. Women East-West, 3(10), 2014. Retrieved from http://files.ctctcdn.com/f916d256201/35d6c33f-16e8-42fc- 928a-8a9f60e58a8b.pdf.
PRESENTATIONS “Reproductive Citizenship: A Disability Perspective” – Paper presented at the Association of Women in Slavic Studies (AWSS) in Alexandria, VA; April 6-7, 2017
“Citizenship Theory and Capability Approach: In Pursuit of Enriching Disability Research in non-Western Contexts” - Paper presented at the Disability Studies Conference in Minneapolis, MN; June 11-14, 2014
“Disability in Russia through the Lens of Citizenship” - Paper presented at Central Slavic Conference, St. Louis, MO, USA (Nov. 2013)
“Disability and the Politics of Nationalism in Russia” - Paper presented at Canadian Disability 2013 Studies Association, Victoria, BC, Canada (June 2013)
“Epistemology of the Rejected Body” - Paper presented at Women's and Gender Studies et Researches Feministes conference, Victoria, BC, Canada (June 2013)
Heath Care Access among Adults with Disabilities on Medicaid – Paper co-presented at the American Public Health Association, San Francisco, CA (October 2012)
“Aesthetic Prosthetics: From Prosthesis as Extension to Prosthesis as Difference” - Paper presented at Society for Disability Studies Conference; Denver, CO, USA (June 2012)
“Technology Beyond Functionality” - Guest lecturer at Midwestern University; Downers Grove, IL, USA (May 2012)