Acknowledgments

It is humbling to reflect on the far-reaching network of people who have made this work possible. I am grateful for their labor, hospitality, camaraderie, support, and willingness to share stories and points of view. I am grateful for the formal support of numerous institutions and grant-funding programs that made it possible to carry out the research, writing, and revision of this book, and, equally important, for the informal support of intellectual and personal community that made the slow trot of writing and revising a thinkable feat.

I conducted an early phase of research that laid the groundwork for this book in the Department of Anthropology at Macalester College in Saint Paul, Minnesota, including research conducted as part of a School for International Training program in Buryatia, Irkutsk, and Saint Petersburg, Russia, in 2005. I am grateful to mentors Jim von Geldern, Arjun Guneratne, Joan Ostrove, Dianna Shandy, and Cindy Wu who encouraged me and helped me to formulate my way of thinking between anthropology, disability studies, and Russian studies.

The present work began in earnest in 2009 at the Department of Anthropology at the University of North Carolina at Chapel Hill (UNC), which continued until 2015. I am grateful for the grant support for language study and for funding from the National Science Foundation Fellowship Program, which made this initial fieldwork feasible. I also received support from the Sexuality Studies Program at UNC, and held a Kennan Institute Summer Research Fellowship at the Woodrow Wilson Center in Washington, DC, in 2015. I am grateful to my mentors at UNC, especially Jocelyn Chua, Arturo Escobar, Sue Estroff, and Michele Rivkin-Fish. In particular, I am grateful to the late Bill Lachicotte, whose work on disability remained largely unpublished, but whose teaching on anthropology of disability and collegial invitation to think with him about how to invent a disability anthropology course, grounded my ambitions and provided a container for thinking expansively. Michal Osterweil was a beacon of how to live ethically as a scholar-activist in an imperfect world. Comrades Adam Leeds, Tomas Matza, and Tamar Shirinian at nearby Duke University made me feel seen and heard and eager to contribute to the ethnography of the former Soviet Union. I’m grateful to my colleagues in anthropology, cultural geography, communication, social movements, Russian history, and public health for the late-night reading sessions, coffee shop writing dates, commitment to found texts, wine-infused read-alouds, potlucks, social media musings, and swimming adventures that built the Carrboro community that sustained us all, through the hard times and the good, and whose thinking pushed my own. These colleagues include, especially, but not only, Nadya Belenky, Ori Burton, Mike Dimpfl, Shoshana Goldberg, Aaron Hale-Dorrell, Sara Juengst, Anna Kirey, Stevie Larson, Kendra Lopes, Pavi Vasudevan, and Lindsey West-Wallace (and all the other mischief-makers who made these years magic).

I am grateful to a number of mentors in Russia who hosted me and provided visa support. In light of the current political situation, I will not name them here, but without their administrative labor and kind encouragement, this book would not have been possible. I am also grateful for the love, friendship, care, and logistical supported extended to me by numerous friends, loved ones, host families, and other kin in Karelia and other parts of Russia (some of whom are no longer there, others who are, and some who have passed away). I am also grateful to the numerous teachers, instructors, and patient friends who encouraged me along my long slow journey to Russian proficiency, reminding me to use the dative case more (rather than the very American nominative first-person singular), insisting that I spend the time to properly learn to roll my r, and inventing creative ways to drill grammatical endings.

From 2015 to 2017, I continued to work on this book through publications and conference papers. This work was possible thanks to a position at the University of California–San Diego, hosted in the Department of Communication as part of the UC Collaboratory for Ethnographic Design. I am also grateful to the UC San Diego Department of Anthropology for welcoming me as an occasional instructor and interlocutor in a variety of seminars, and to the Medical Anthropology working group and the Russian Studies working group, both of which read and commented on work that eventually became a part of this book. I am grateful to mentors, writing companions, and friends from my time in California, including Joe Hankins and Keith Murphy (whose comments on my American Ethnologist article in progress were what we might call the definition of “clutch”), Elana Zilberg, Amelia Glazer, Louise Hickman, Yelena Gluzman and Christina Aushana, Patrick Anderson, Lilly Irani, Ari Heinrich, Mara Green, Utpal Sandasara, and numerous others.

Throughout this trajectory, I was in ongoing conversation with disability studies as an interdisciplinary field, and my thinking was deeply informed by the then-active in-person conferences of the Society for Disability Studies. Likewise, the Disability Research Interest Group of the American Anthropological Association became an important space for meeting colleagues and organizing as well as envisioning what our corner of the discipline might be in the future. I was especially informed by the Cripping Development Conference organized by Kateřina Kolařova and Kathi Wiedlack in Prague in 2013. I am especially grateful to mentors Pam Block, Faye Ginsburg and Rayna Rapp (a.k.a. the entity known as Fayna), Devva Kasnitz, Robert McRuer, Karen Nakamura, and Sarah Phillips for welcoming me into the field and handing me leadership roles before I knew which way was up. I am deeply in awe of and beholden to fellow contributors to the Critical Design Lab, especially Aimi Hamraie, who convenes the space, and Louise Hickman and Jarah Moesch, among others. I have the deepest gratitude for doing this work in conversation with cotravelers and close colleagues Svetlana Borodina, Michele Friedner, Anastasia Kayiatos, Christine Sargent, Zoë Wool, and others. In Russia, I am grateful to Elena Iarskaia-Smirnova for her work to create Russophone disability studies and include me in those conversations. Likewise, I am grateful to the Russian area studies community at ASEEES (Association for Slavic, Eastern European, and Eurasian Studies), Soyuz, and elsewhere, especially José Alaniz, Fran Bernstein, Alexei Golubev, Anastasia Kayiatos, Larisa Kurtović, John Little (whose work on Soviet disability history unfortunately remains unpublished), Michał Murawski, Claire Shaw, and others. I am grateful to medical anthropology, design anthropology, and post-Soviet anthropology mentors, colleagues, and friends at AAA and SfAA, including Alexei Yurchak and Serguei Oushakine, who have each been supportive from afar, and Lyndsey Beutin, Cal Biruk, and Erika Hoffman-Dilloway, who brought me into a circle of raucous hope and scholarly praxis.

In 2017–2018, I was at Yale University at the MacMillan Centre for International and Area Studies and the Department of Anthropology, during which time I was actively writing this book. I received essential feedback on a talk integrating new material about design thinking in Russia that I presented as part of the Slavic Department colloquium; that has indelibly shaped the argument of this book. I am especially grateful to Marijeta Bozovic, Greta LaFleur, Jess Newman, Eda Pepi, and Doug Rogers for making space to share that year.

In 2018, I joined the faculty at the University of Toronto Scarborough and the Graduate Department of Anthropology at the University of Toronto. This privileged role has allowed me to continue to revise this book, through the support of generous research leave and an active intellectual community. I am grateful to my colleagues in sociocultural anthropology for their generous comments on a near-complete version of the introduction to this book in our work-in-progress series. I have benefited from support for new faculty at the Centre for European and Eurasian Studies, as well as the center's lively academic event series, including the opportunity to host several interlocutors. At the University of Toronto Scarborough, I am grateful to my undergraduate students in my Disability Studies and Health Humanities courses for asking tough questions, bringing their own intersectional praxis into the classroom, and showing up through the years of the global pandemic. I am especially grateful to my colleagues and graduate students at our fledgling Centre for Global Disability Studies, who have buoyed me on through difficult years with camaraderie and intellectual community. I have been honored to share time and space with outstanding graduate students at the University of Toronto. The direction of this book was particularly influenced by Gyuzel Kamalova, Vanessa Maloney, and Hannah Quinn, each of whom offered feedback on my work in progress and influenced my thinking in our disability anthropology seminar and disability anthropology working group. Thank you also to Miggy Esteban and Elaine Cagulada, whose critical thinking and lyrical work in disability studies advances the field as a whole, and with whom I’ve been lucky to share intellectual community. I am grateful to several research assistants who worked with me on this and other projects, especially those whose native knowledge of Russian was a welcome resource. I am grateful to my senior colleagues who saw a place for disability studies at the University of Toronto and University of Toronto Scarborough, and to fellow faculty for creating collegial spaces to write and offer feedback on works in progress. I’m especially grateful to colleagues Andrea Allen, Susan Antebi, Chloe Atkins, Rob Austin, Hilary Brown, Andrea Charise, Nais Dave, Nisrin Elamin, Vini Furuie, Kate Holland, Katie Kilroy-Marac, Anne McGuire, Andrea Muehlebach, Aparna Nair, Natalie Oswin, Ed Schatz, Dana Seitler, Michelle Silver, Alison Smith, Janelle Taylor, Tanya Titchkosky, Holly Wardlow, Katherine Williams, and Zoë Wool.

I am grateful to those who have taken the time and energy to invite me to share this research in campus talks, and whose generous engagement has advanced this book, especially the following: Michele Friedner and Eugene Raikhel at University of Chicago, Ilya Utekhin at EUSP, Julie Hemment and Krista Harper at UMASS Amherst, Sarah Sharma at UofT's then McLuhan Centre, Kristin Bright at Middlebury, and Jessica Hardin and colleagues at RIT. I am likewise grateful to those who have invited me to be an interlocutor in other ways, including Eli Elinoff, Elizabeth Guffey, and colleagues in Berlin. Chapter 2 of this book is closely related to an article previously published in American Ethnologist, and I am grateful for permission to publish here, and to the journal editors and numerous anonymous reviewers for encouraging and pushing forward that article, which influenced the present work in important ways. Furthermore, I am very grateful to the numerous collaborators who made my earlier book, I Was Never Alone or Oporniki: An Ethnographic Play on Disability in Russia (University of Toronto Press 2020), and the play script on which it is based, a living reality. The insights from that work, as well as shared ethnographic source material, shaped this book profoundly. Thank you especially to Anne, Carli, and Stephen.

I am deeply grateful and full of respect for the outstanding work of administrative staff in each of these institutional locations who make the university run despite the many pressures from all sides that quite simply make us all want to give up sometimes. Thank you.

I have enormous respect for my editors at Cornell University Press, and the many people in the press's extended production line whose labor has made the creation of this book possible. Thank you especially to Ellen and Jim for taking an interest in this project and carrying it through the review process.

Writing a monograph as a single author obscures the depth of communal care and social worlds that make this vocation thinkable and possible. This work would never have come into being without the family and friends who have made me feel at home as I have crisscrossed two continents in pursuit of a way to bring this book into being. Thank you.

It would absolutely be possible to continue revising this book forever, but the period of research now recedes swiftly into the past, and the only option is to launch this book into the world, come what may.