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In July 2020, Alexei Dymdymarchenko, Lyosha or Dym-Dym to his friends, an artist whose work I had been following, died of complications from the COVID-19 virus in St. Petersburg, Russia. His death, devastating for his community, is too easily characterized as one death among many stalking adults living in long-term care facilities. The pandemic has accelerated the slow emergency of disability incarceration affecting communities across the world. Anthropologists in Russia studying the question of deinstitutionalization are finding that the pandemic has shifted the possibilities for redesigning social care in postsocialism.
I learned of Dymdymarchenko’s artwork when I wrote to Sasha Ivanov, a curator and art studio manager in St. Petersburg, asking for samples of works by artists with disabilities for a gallery show in Toronto. I was immediately taken with Dymdymarchenko’s works. Untitled, they are typically an amalgam of seemingly random marks on the blank rectangles or European standard printer paper sizes. Ivanov described the work as “somewhere between sound art and performative practice” in a write-up for the international media art festival CYFEST, where the works were exhibited. Dymdymarchenko created each work by taking a bin of pastels (or crayons) and dumping it out over the paper, repeatedly, ceremoniously, as a tactile, gestural, and auditory process. In this way, each paper is a trace left over from a ritual sound performance, evidence of the repeated sound: the rush of small objects falling onto paper on a wooden tabletop. Dymdymarchenko himself was minimally verbal, and Ivanov typically represents him and other artists in the studio to the broader public. The studio itself is a program run by a nonprofit organization and housed in a small annex connected to a residential institution (called an internat in Russian) for adults with neurological and psychiatric disabilities near St. Petersburg.
I reached Ivanov via video chat for an interview about Dymdymarchenko’s passing and the broader impact of the pandemic on the studio community. Ivanov looked down for a moment, gathering his thoughts before describing Dymdymarchenko to me. He was, Ivanov recalled, light and willowy, tall and thin. He didn’t talk or hold conversations, but he had a unique kind of resolve and special focus and creative concentration in the studio that inspired others to consider their own work in new ways. He would sit quietly and turn the crayon bucket over, over and over again, with careful attention. And, his work was resistant to some of the common essentializing practices toward disability art that Ivanov finds frustrating, such as treating the artwork by disabled artists as “special” and apart from broader artistic conversations. To Ivanov, this way of siloing disability arts is paternalistic and bound up in the neoliberal production of value through inclusion, and does little to address underlying systemic ableism.
In the midst of the first few months of the quarantine imposed to tackle the spread of COVID-19, Ivanov explained, Dymdymarchenko ended up in one of the St. Petersburg city hospitals, one of two residents of his internat diagnosed with COVID-19. He was hospitalized for one month, and then returned to the internat. But he died of a heart attack soon after, a likely complication of the virus.
Receiving this news in Toronto, where the pandemic’s first and second waves swept nursing homes and residential institutions with devastating impact, I was struck by the cruel fact that Dymymarchenko’s death—as an Autistic adult living in a state-run institution—was profoundly unsurprising, even expected. His death reverberates with COVID-related deaths of others living in institutions in Russia, Canada, and around the world. As one woman with disabilities living in an institution in the United States told human rights interviewers, “people in institutions are not receiving adequate assistance or access to medical supplies. Staffing is insufficient and at dangerous levels.”
The moral calculus of determining how to prevent the spread of COVID-19 has consequences for particular communities, in this case the many adults diagnosed with intellectual and developmental disabilities, from autism to cerebral palsy, living in institutional care. Institutional care for disabled adults is typically contrasted with “community care”—the group home model that emerged in North America and Western Europe in the 1970s and onward, typically funded by government contracts and executed by nonprofit entities. While those nations juggle the challenges of community care, state-run institutional care persists in postsocialist Eurasia. The situation refracts an ongoing theme in ethnography of disability in the region: people with disabilities facing untenable situations that are at once uniquely post-Soviet in configuration, yet disturbingly quotidian in transnational disability advocacy. This theme is well established in anthropologist Sarah Phillip’s academic work on mobility disability in Ukraine, as well as in a both Russophone and anglophone works by the Russian sociologist Elena Iarskaia-Smirnova and her students, including a landmark edited volume. Beyond Russia, the harsh realities of life in institutional care across regions and cultural contexts have been well documented; ethnographers of disability experience have also attended to the resilient ways in which adults living in institutional and community care settings claim agency, pleasure, and a sense of self.
