I Was Never Alone or Oporniki: An Ethnographic Play on Disability in RussiaCassandraHartblay. Toronto: University of Toronto Press, 2020. pp. 218.
Notice bibliographique
Résumé
I Was Never Alone or Oporniki: An Ethnographic Play on Disability in Russia narrates the everyday lives of disabled people in Russia. Most of the text is a reproduction of the script that author Cassandra Hartblay, in collaboration with her interlocutors, wrote to stage a performance focused on six first-person narratives about disability. Through the script, we witness the characters navigate inaccessible architecture, negotiate push-and-pull with their concerned but sometimes overbearing parents and caregivers, and contend with the cultural forces that define the shape of disability in post-Soviet Russia. The second portion of the book is a methodological reflection, almost reading as a “behind the scenes” analysis that in earlier eras might have appeared as bonus scenes on a DVD. Like with such bonus scenes, the reader must hit a proverbial “play” button as the script and ethnographic essay are separated, with the methodological reflections and questions of process placed at the end of the book. Some readers of Medical Anthropology Quarterly may not be familiar with the differences between medical anthropology and disability anthropology. As Hartblay defines it, disability anthropology highlights the ways society disables people, rather than defining disability as something inherently wrong with the disabled person (86). Disability anthropology unyokes disability from its diagnostic meanings. Though she focuses on caregiving, Hartblay does not touch on medical “treatments” for disability or orientations toward cure. Instead, the script of the book is based upon interviews conducted in people's homes or other everyday settings. Disability studies has historically separated the medical model of disability from the social model, where the latter emphasizes the ways disability is made by social worlds and inaccessible infrastructure (86-87). Readers unfamiliar with disability studies may miss the nuance here. In Hartblay's book, the social model of disability is buried—in a good way. Despite all the inaccessible architecture and infrastructure Hartblay describes, she refreshingly does not dwell on this often-belabored point (though, since a performance is also always about audience, US readers and viewers might balk at the inaccessible worlds in a different, non–Americans with Disabilities Act sociocultural context of Russia). Instead, she establishes what she calls a relational-performative model of disability, such that performance itself becomes central to understanding disability in Russia, justifying her decision to stage a play. Disability is performed and enacted in everyday life, in perpetual interaction with an ablebodied world. It is not simply infrastructural. The jettisoning of the social model as the primary analytic framework allows Hartblay to complicate the primarily Anglo-American model of disability pride that deserves revising. This builds on the work of scholars like Jasbir Puar (2017) and Laurence Ralph (2014), who point out that disability is often not something people are proud of or identify with when it is caused by violent and disabling geopolitical conditions. Disabled people, in other words, do not share a singular politics. Some of the most provocative moments of Hartblay's script come when the characters speak frankly and sometimes resentfully about other disabled people. They push against both disability pride and disability-as-tragedy, through humor and flippancy, in ways that are not often found in Anglo-American disability activism or scholarship. Multiple characters in the play refer to nondisabled people as “normal” and themselves, by extension, as not normal. There is an interesting contradiction here. Take Anya, a power wheelchair user with a progressive muscular disorder, who first contrasts “people with disabilities and people who are just normal.” (54). But she does not take herself too seriously; disability is not pitiful. She asserts the existence of a “normal disabled person”: “It's a disabled person who can say, ‘I've had it with all these disabled people!’” (56). The idea of a “normal disabled person” is one who does not take disability too seriously and who can be critical of other disabled people—one who does not have to submit to an orthodoxy that ends up placing disabled people into a single polity. This exceeds a static version of the social model, instead offering a dynamic and contextual relational model of disability. “I was never alone,” the character Alina says (34). She's alluding to her connection to rich social worlds despite the profound isolation that comes with living with a disability amid the inaccessible infrastructure that characterizes Russia. But the “I” could just as easily refer to the ethnographer. Hartblay's form reminds anthropologists that ethnography is always collaborative. Whether or not one convenes a writers room full of interlocutors, the ethnographer is by definition never truly alone. In addition to the research, there is also the question of audience. Hartblay's discussion of North American readers and Russian contexts highlights this. The interface between the subjects and the audience serves here as a reminder of both the intimacy and distance any reader has with a text. Hartblay asserts in the ethnographic essay that follows the script: “Performance does things that text alone cannot” (90). This is a central, but underexplored, irony of Hartblay's book. Even though the play itself was indeed performed, the text that came after it is, after all, a text. The reader cannot witness the performative relational model performed. It reads, then, as if the reader gets the script and then gets a grafted-on interpretation. This flaw of the book is perhaps inevitable in a diptych-like structure where theory comes after content. Nonetheless, the reproduction of the script in a book is certainly a meaningful endeavor, as it allows these stories to spread much farther than any live performance could. This book would be well-received by undergraduates, as it is accessibly written, and the first-hand witnessing of these stories provides tangible examples for analysis. It would fit well in methodology seminars for graduate students, especially in the context of a turn toward more creative forms of ethnography in the discipline as a whole in recent years. As Hartblay ruminates on, the question of audience reception is a murky, ambiguous, and highly contingent one. So too will the reception of this text be to different disciplinary audiences, especially from disability studies to medical anthropology. This is of course also its usefulness: the script is enlivened in its relation to the reader, just as disability, as Hartblay successfully theorizes, is created through relational performances.
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| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,000 |
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| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,008 |
| Communication savante | 0,000 | 0,001 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
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