Notes
INTRODUCTION
1. Throughout this text, I use both person-first (person with a disability) and identity-first (disabled person) language, in recognition of the fact that language terminology is evolving over time and diverges in translation. I have tried to approximate as closely as possible a term that fits with how a disabled interlocutor/interlocutor with a disability would refer to themselves, though given that an entire chapter of this text is devoted to the incommensurability and divergence of disability terminology between Russian and English, this can never be more than an approximation. In many cases, I have offered a few words as to what I know of a person's diagnosis; I offer this not out of a desire to reify medical categories, but rather as a shorthand for readers familiar with disability community to grasp something about the kinds of impairments and disabling experiences the described person may encounter. I hope that a reader will understand that the insufficiencies of language here are very much part and parcel of the work of disability ethnography, that representation in text is imperfect, and that I have tried to reduce ableist bias in language wherever possible.
2. Hamraie and Fritsch also refer to frictions as “productive” in the abstract sense (2019, 2).
3. Disability expertise draws on the longstanding consideration in disability studies of the paternalistic attitude toward disabled people that ableism engenders, and the move to flip the ableist view that disabled people are in need of help (Finkelstein 1975). The concept of disability expertise is not intended as a either a euphemistic nicety or a totalizing positive reclamation of pride, but rather as an orientation derived from complex subject position. Sometimes this manifests as “a productive experience of difference […] a marker of innovation operating at the materialist edge of species innovation” (Mitchell and Snyder 2017, 26–27); at other times, no such innovation or benefit arrives, only embodied knowledge of how ableism operates. I also discuss disability expertise in the section of this chapter about disability anthropology, as well as in my 2020 article.
4. Reporting on the photo project, Davies (2019) explains:
Known by his alias Vreditel Li? (or “Is That a Pest?”), the Samara-based artist and his team took over a disused apartment block on the outskirts of the city. After taking two days to drill holes into the building's outer wall, they attached brackets in order to create a platform on the fourth floor of the five-storey building. Props were lowered down from the roof using a rope, while the artist himself wore a cleverly-hidden harness. The performance sees the artist sitting in a wheelchair trapped by the steps—and the dizzying drop—beneath him. According to the team, the piece was designed to highlight the challenges faced by twelve and a half million disabled people in Russia today. “For my disabled neighbour, the staircase is an insurmountable obstacle—which is why we so rarely see people with disabilities out and about,” Vreditel Li wrote on his Instagram page. “But the staircase is just the first step in a series of urban obstacles. There are unusable ramps, poor-quality materials, falling tiles, subways, and many other dangers within our daily environment.”
The @vreditel_li art collective Instagram account was still active as this book was going to press. Vreditel’ is a Russian word (styled for social media without the transliterated soft sign) meaning pest or vermin, with a specific political history related to the Soviet criminal category of vreditel’stvo (subversive acts or economic sabotage), used in a contemporary context (sometimes ironically) to describe those who sabotage others or ruin property. The artists called the series of photos gorodskaia sreda, which could be translated in several ways: municipal surroundings (emphasizing the governmentality manifest in the built environment), or, perhaps more simply, cityscape (with a sort of ironic bent). The photos of the wheelchair user and impossible ramp were one iteration of a project called 1m2, which also includes various other scenes taken on the same ledge.
Interestingly, both of these examples suggest an orientalizing vantage on the purported subject. We might consider the social forces that would also characterize accessible design or wheelchair users as seductive, simple, backward, or uncivilized, and other descriptors.
5. I use the term Euroamerican, following Ingstad and Whyte (2007), to designate a particular nexus of geopolitical power and attendant imperialism of related cultural formations.
6. The Russian Federation during the 2010s was a globally connected economic, social, cultural, and political space. The 2010s are in this way distinct. They follow the period of post-Soviet transition in the 1990s and early 2000s characterized by exploitative economic shock therapy, shortages, poverty, and instability. In contrast, the 2010s opened with a feeling of optimism and a sense of political and economic stability distinct in recent memory. The economic stability allowed for increased flow of consumer goods and cultural objects into and out of Russia as well as for the possibility for travel abroad for some classes, a situation quite different from just ten years earlier.
7. Nina Anatoliievna is a pseudonym. I use pseudonyms throughout for interlocutors, except in cases in which the person in question is a public figure, in which case, I use their real name, usually a last name. In most cases, I use a first name or the casual (shortened) version of a first name. When I refer to people of a more senior generation, I often use a first name and patronymic. These choices are intended to follow standard practices of expressing respect in Russophone address.
8. A complaint in medical practice refers to the “symptoms and ailments reported by a patient” (Chua 2012, 221), and Chua, as a medical anthropologist, identifies the practice of reporting one's symptoms and ailments as a particular register of speech or social performance. I consider inaccess stories in relation to Chua's observation, in that they, too, are a kind of speech act; however, in inaccess stories, it is not symptoms of disability as a medical condition being reported, but rather the social and relational concerns of living with a disability in a particular context.
9. Related to the separation of access objects from access knowledge is the way that the labor of actually disabled designer-activists becomes devalued. Scholars and activists argue that disabled designers are frequently excluded from the accessible design industry (see Jackson and Williamson 2023). Designs by disabled people may instead get coded as lay innovation or patient hacking, capitulating the dominant logics of medical paternalism.
10. Defining design requires distinguishing design from three neighboring fields: art, architecture, and engineering. Professionals in each of these fields may engage in a process of design, or do design work, yet, the professional terrain of design is distinct from each field. Design is distinct from art partially in terms of the disciplinary distinctions of professional training; but, perhaps most fundamentally, art can exist for art's sake, aesthetics over application. Design, as understood in contemporary professional usage, designates this shared attention to both aesthetics and function in the process of making. Architecture has to do primarily with the design of human dwellings and spaces on a civic and structural level. Engineering often involves the work of researching, devising, and determining how to structure an object, infrastructure, or system, but unlike design, art, and architecture, the aesthetic properties of the engineered object are secondary to concepts of efficiency and function. (The resulting object does work; its function is more important than its form; its value derives from its function; and attention to aesthetics is an inefficiency.) These definitions are useful, too, in distinguishing the anthropology of design (see Hartblay, Hankins, and Caldwell 2018) from anthropology of art, architecture, or infrastructure.
11. I use the metageographic descriptor “global North/West” in opposition to “global South/East” as an indicator of geopolitical hegemonies that accounts for both the post–Cold War move away from the rubric of a first, second, or third world, and the ways in which a global North/global South paradigm fails to capture material histories of state socialism. This use follows critical feminist scholars writing about post-Soviet and postsocialist Europe, including Suchland (2011) and Wiedlack and Neufeld (2014, 2016).
12 “Cripwashing” has been proposed as the corollary to ablenationalism that pinkwashing is to homonoationalism (Moscoso and Platero 2017).
13. I am hardly the first to use a version of this approach to study disability ethnographically, but rather I join a rich history of scholars working in this tradition.
14. Several minority languages are in use in the Karelian Republic—Karelian (a dialect of Finnish), Veps (a minority indigenous group), and various languages that Central Asian and Caucasian migrant workers spoke among themselves or at home—but I rarely encountered these languages in daily life, and Russian was the native language of all of my primary interlocutors. In a few cases, the novelty of my role as a US researcher who spoke Russian was elevated as spectacle—I was profiled in two human interest interviews—one published online, and one in print in a local newspaper. I am a white person of Slavic and Ashkenazi descent. I grew up in the Northeast United States the child of first- and third-generation immigrants, respectively. My father's parents spoke Polish in their home (although his father's first language was Yiddish), and throughout my childhood, we were in contact with the Polish side of his family, especially in the late 1980s and early 1990s, when Poland reopened to the West. My mother's grandparents and great-grandparents spoke Slovak and Ukrainian, and family holidays were marked with Eastern European cuisine. With this family background, no one was surprised when I opted to study Russian in high school. My ethnicity also meant that as I moved through public spaces in Russia, I was not usually identified as a foreigner until someone heard that I spoke Russian with a foreign (although not identifiably American) accent.
1. “I CAN DO IT MYSELF”
1. Dacha is a Russian summer house. Although the word could refer to the summer palaces and mansions of the Russian gentry and royalty in the pre-Soviet era, the Soviet dacha was more of a practical necessity. Many families were allotted small gardening plots outside of the city, constructing small huts, and growing food there. For many Petrozavodsk families, those with dachas relied on the food they produced to survive the lean years of the 1990s, canning cabbage and pickles and carrots and tomatoes, and storing potatoes on city apartment balconies. Today in Karelia, dachas might be newly constructed lake houses for the wealthy and upper middle class, or they might be inherited gardening plots or small hunting cottages for those without the means to conduct a full renovation. Many families will spend whole weeks or every weekend at the dacha throughout the summer season, or take advantage of the warm weather to send half the family from a cramped apartment to the unheated summer home.
2. Disability inclusion activists in Petrozavodsk in my experience (or elsewhere in Russia as far as I know), have not been subject to the accusations of “foreign” ideological influence that feminist and LGBTQ activists have (see Healey 2018; Kondakov 2022), although some disability activists are also feminist or LGBTQ activists. In cases in which disability has been represented as shameful, it has largely been in the context of longstanding endogenous tropes, sometimes remixed with global cultural imagery (e.g., see Wiedlack and Neufeld 2016).
3. “In theory,” explain Benevolenski and Toepler, “Russian nonprofits have principally had access to government and municipal contracts as well, as contracting laws did not favor one legal form or auspice over the other. However, in the implementation of these provisions, public funds for social services were almost exclusively awarded to public institutions in fields like health, education, and human services” (2017, 69).
4. “Working on the self” and notions of psychosocial development have a complex history in Soviet theories and practices that dovetail with contemporary neoliberal self-work as understood in the global North/West. For a discussion of Soviet influence on contemporary Russian concepts of working on the self, see Hellbeck (2001); Raikhel (2016); and Matza (2018), among others.
2. INACCESSIBLE ACCESSIBILITY
1. Parts of this chapter are similar to the article “Good Ramps, Bad Ramps” published in American Ethnologist in 2017.
2. The phrase “disability things” was coined by Katherine Ott, a curator at the National Museum of American History of the Smithsonian Institute. See the project “Everybody: An Artifact History of Disability in America” (2013) for an example of how her work uses material culture and technology to discuss the complexity of disability. Ott also published a chapter about the concept in an edited volume (Ott 2014). The phrase was a point of departure for a series of panels at the Society for Disability Studies conference for two years running (2013 and 2014), at which disability studies and design scholars unpacked the cultural associations in a given object that is often characterized as a disability thing but does not necessarily have to be (prosthetic limbs), or is not usually considered to be a disability thing but in fact may be (the iPhone). Thanks to Aimi Hamraie for their help tracking the origin of this concept.
3. The notion of good passage is one that I carry over from the article “Good Passages, Bad Passages” in which Ingunn Moser and John Law (1999) blend science studies and disability theory to argue that as cyborgs, humans rely on the confluence of a variety of technologies and material and human factors to facilitate smooth communication or passage from one state, stage, or place to another. For those of us negotiating nonnormative bodies, however, the links between the elements in these exchanges and passages do not align; and passage is rocky, incomplete, tumultuous, slow, or difficult. In crip culture, the choreography of discrete design elements and social factors into a “good passage” is a goal rather than an expected occurrence. Here I have used the phrase “smooth passage” to emphasize the concept of unevenness and friction.
4. Robert McRuer reported a similar phenomenon regarding a lone curb cut installed in a sidewalk outside of the British Embassy in Mexico City—although installed with much fanfare, McRuer argued that the curb cut did little to facilitate access in the city, nor to assuage the disabling and debilitating conditions of life in the city more broadly (McRuer 2013, 2018, 135–136).
5. People drink the water from the springs, which is also gathered and used for mineral baths. Each of the three springs has a its own composition of minerals, which are said to be healing for specific ailments.
6. Imgur is an online image aggregating site that allows readers to give a news item an up or down vote to signify whether a given content item should be promoted or get buried. The site's algorithm processes shares and response to provides constant new content to its readers. Imgur was designed to generate viral image memes and draws an international user base (Garber 2014).
7. Whether the ratification of the treaty holds an meaning for disabled Russians, or represents a manner by which the Russian government sought an easy acknowledgment and legitimization as the sole entity of justice in the territory of the Russian Federation is another story. For a critique of the role of the United Nations Convention on the Rights of Persons with Disabilities in non-Western contexts, see Meekosha and Soldatic (2011).
8. Thanks to Kevin Gotkin, Aimi Hamraie, and other members of the Critical Design Lab for a discussion of “forness” as a term to think with in Ahmed's book, which influenced this section.
3. HOUSING FATES
1. While streets elsewhere were named for monarchs, national heroes, and natural features (Oak Street, Lake Street), in the Soviet Union, the most ubiquitous streets names were those referencing Communist Party leaders, Soviet military heroes, and socialist heroes (from Karl Marx to Yuri Gagarin).
2. Stiob is a Russian word referencing a kind of performative ironic or sarcastic speech, described in detail by Alexei Yurchak (2006) in his account of the late-Soviet period in Saint Petersburg, Russia, and elsewhere. Like sarcasm, stiob involves voicing or enacting a rhetorical position or concept accurately, but unfaithfully, to draw attention to its absurdity. Like performances of ironic disbelief by Jon Stewart and Stephen Colbert in the United States in the early 2000s, stiob is a humorous form of speaking from the subject position that one is simultaneously mocking (Yurchak and Boyer 2010).
3. Of course, floor and building plans are reused in capitalist construction as well. The material and ideological production of the plans and the buildings, however, are predicated on the idea of a universal needs.
4. Throughout this text, I distinguish between post-Soviet and postsocialist, in the sense that post-Soviet is a time period and postsocialist is a global conjuncture (e.g. see Mladenev 2017; Gille 2010; Fraser 1997). However, recent scholarly attention to the Soviet and post-Soviet built environment suggests a potential different interpretation of the post-Soviet parti. Stephen Collier (2011) has explored the ways in which the built environment of the Soviet infrastructure has led to particular and culturally located configurations of public infrastructure, which are now repurposed into privatized and state-owned infrastructures that follow logics and arrangements of responsibility unique to post-Soviet space. Jane Zavisca (2012) has argued that the spatial confines of the Soviet family apartment, and the limited availability of housing in those now-aging apartment units in Russia today, create particular constraints on kinship and reproduction.
5. Readers who have also read I Was Never Alone (Hartblay 2020) will recognize this exchange as the eponymous excerpt from Portrait IV in that book.
6. For a discussion of the phrase “needed by nobody” in Russian, see Höjdestrand (2009).
7. At the same time, in 2012, Vera was saving money and hoping that if her husband sold an apartment that he owned in Saint Petersburg, they might be able to buy another apartment, leaving her parents to their own apartment.
8. This review of archival material was conducted by the author in collaboration with Gyuzel Kamalova, as of press time, under review for separate publication.
9. See, for example, Novopolianskii, D. “Razmyshleniia nad pis’mami: Neotlozhnyi Dolg” [Musings on Letters: An enduring duty].” Pravda, April 15, 1975, 6. https://www.eastview.com/resources/gpa/pravda/. For further discussion of veteran experience and organizing, see Edele (2008); Bernstein (2015); and Krylova (2001).
10. See Sazhko, P. “Udoben li magazin?: kak razvivat’sia torgovle [Is the store convenient?: how to develop commerce].” Pravda, No. 233, February 2, 1972, 3. https://www.eastview.com/resources/gpa/pravda/.
4. NORMAL, CONVENIENT, COMFORTABLE
1. Although the anglophone terms accessible and barrier-free may be used interchangeably in disability advocacy work, there are some differences. The phrase barrier-free environment came into widespread global usage following its use in architectural discourse, and subsequently in the United Nations disability rights documents and treaties. This term distinctively refers to a concept of removing barriers to access related to the so-called social model of disability. Accessible is clearly the preferred term in the landmark Americans with Disabilities Act (ADA) legislation and is widely used in the United States and Canada. It strikes me that barrier-free may be preferred in the international context because it is more readily translated across languages. The concept of barriers is also more closely aligned with the British context and the origin of the social model (Oliver 2009(1996)).
2. Galina's description of the disability law in Russia was extremely precise. She wrote:
The first legal acts that named dostupnaia sreda were the Presidential Decree of the RF from October 2, 1992 number 1156 “On measures for the creation of access for disabled people in daily surroundings” [O merakh po formirovaniu dostupnoi dlia invalidov sredy zhiznedeiatel’nosti] and in Legal Act of the RF from March 25 1993 Number 245 with an identical name. These were strengthened and further developed in the Federal Law Number 181 from November 24, 1995, with changes and amendments from August 8 2001, “On the social protection of invalidov in the Russian Federation.” In articles 14, 15, 16 the state declared the creation of accessible infrastructures and the necessity of free access of invalidov to information and related measures of responsibility for realization of the items laid out in the Law in 1990 starting with that they translate books, such as Kalmet Kh. U. “Living surroundings for the disabled” 1990. […]
The first standards [normy] for the implementation of accessibility [obespecheniu dostupnosti] in elements of infrastructure [infrastruktura] appeared in the USA at the start of the 1970s. Fairly soon after many other countries have made it mandatory to agree with accessibility standards [trebovaniia dostupnosti] for elements of the built environment [ob”ektov sredovogo okruzheniia] for individuals with limitations [lits, imeushchikh ogranicheniia]. The first standards [normativom] for barrier-free construction [bezbari’ernogo stroitel’stva] to appear were RSN 70–90, which have existed [deistvovavshii] since 1991. It follows to note that the law “On the social protection of the disabled” from 1991 prohibited the development and building of venues not equipped with elements of access for invalidov. (Galina Gorbatykh, personal communication, 2014)
3. So far in my review, the categories remain distinct and correspond to the anglophone concepts. However, the focus on “approach on foot” adheres more clearly to dostup, and the concept of modern infrastructure aligns more closely with udobstvo. Preobrazhenskiy's etymological dictionary (1951(1910–1926), 408–409) includes dostup, dostupnyi, dostupnost’, and nedostupnyi under the entry for the root stupat’ (to step), of Slavic origin. Müller's English Russian Dictionary (1965) in the entry for access offers dostup as the first translation, and prokhod and podkhod, nouns from verbs describing approach on foot, as the second. Müller's entry does include “ease of surroundings in a renovation” as the second definition of accessibility, suggesting the obvious and clear cognate concept to the subsequent anglophone usage in disability politics.
4. I thank Aparna Nair for this point.
5. I thank Larisa Kurtović for this point.
6. When interlocutors describe the gap between reality and an imagined good life, one interpretation is to consider how their inaccess stories are a complaint about corruption, or the moral failure of others, particularly those in power. Anthropologists understand corruption as a conceptual category that is instrumental in meaning-making at local and global levels (Gupta 2005, 2012; Haller and Shore 2005). When people narrate quotidian transgressions of social norms and in so doing outline the moral field of appropriate conduct as actors negotiating the rules governing social and political life, they are often making complaints about the category we understand as corruption (Haller and Shore 2005, 8). Although my interlocutors’ complaints might also be understood as narratives of corruption (Gupta 2005), I hesitate to use this category because Western accusations of Russian corruption have become overdetermined, and scholars argue that they flatten social and moral experience (Rivkin-Fish 2005a; Ledeneva 1998). Still, the confluence of infrastructure, power, and complaint do offer a compelling association.
7. “Udobstva zhizni, dostatok’’ i ukhod’’, usluga” (Dal’ [1880–1882] 2003, vol 4 294).
8. “Spokoinaia doroga, rovnaia; spokoinaia koliaska, netriaskaia. Spokoinoe pomyshchen’e, udobnoe” (Dal’ [1880–1882] 2003, vol 4 294).
9. This refrain is sometimes attributed to the writer Gogol (who indeed wrote much about driving carriages over rutted and potholed roadways), or to the historian and writer Karamzin, as well as to others. A Russian-language internet search turns up numerous circular blog posts pondering the origin of the phrase. I should note the potential for unpacking the deployment of “durak” here: specifically, the suggestion that moronic or stupid people (duraki) are seemingly harmless, at the same time that low intelligence or illogical reasoning are a “problem” that society must work to resolve just as poor roads ought to be fixed. But that's a topic for another project.
CONCLUSION
1. The suit was reportedly imported from the United Kingdom specifically for the event. The suit suggests that Gref was engaging in what critical disability studies calls “disability simulation”—donning limiting apparel (such as a blindfold) to simulate the experience of a disability, or temporary use of an assistive technology, for example, spending an hour or a day using a wheelchair to get around. The premise that disability simulation may be used to promote access and understanding is refuted by critical disability studies scholars and disabled advocates, who argue that such exercises often serve to reify difference and reinforce incorrect assumptions and attitudes of pity among nondisabled participants (Nario-Redmond, Gospodinov, and Cobb 2017; DAVT 2018).