Category: Health Humanities

Not long ago, I was in Russia, to take part in an event at European University at Saint Petersburg, DIS.ART – disability, ethnography & the arts on October 10, 2018. The event featured four creative works by a cohort of medical ethnographers working on disability at European University in Saint Petersburg.

The evening started with a screening of some research footage, which Ilya Utekhin and others filmed at Anna Klepikova’s research site, as a way of presenting Klepikova’s new book, Naverno Ia Durak, or, Probably I’m an Idiot. Out this year in Russian with European University Press, the book takes the form of a “novel” or a sort of ethnographic memoir, following Klepikova herself as she works to discover how international volunteers (from Germany, Poland, and other European countries) make meaning in their work at two state institutions for people with mental disabilities in the St Petersburg region.

With support from Ilya Utekhin, two scenes from my ethnographic play, I WAS NEVER ALONE, or OPORNIKI, were performed in a live reading by Olga Pavlova and Sergei Yakovenko, with musical accompaniment by Leonid Levin.  See the video, above (in Russian). This was the first public reading of the script in Russian, and this ethnographer delighted in observing how the jokes and emotive ups and downs in the script play differently in Russia as opposed to in North America.

Finally, the evening closed with the screening of a rough cut of a new ethnographic film by Anna Altukhova, about young adults living in assisted living in a rural town in central Russia after aging out of an orphanage for children with intellectual disabilities. The film documents how this cohort imagines what it means to live independently as adults, envisioning standardized ideals of heterosexual family units in separate homes, and pondering what kinds of work might be viable. The film is shot through with an ironic depiction of an unusual practice amongst the group, the standing challenge to spend a night, or several, away from the assisted living apartments that they share in small groups, living ‘independently’ in a seemingly abandoned house (without heat aside from a wood stove). The house, local lore has it, once belonged to a pre-revolutionary Baron, and, was visited by Lenin himself.

The event and all of the presented works were in Russian. Klepikova’s book has yet to be translated to English. My playscript has also been presented in English, and will be subsequently performed in English and Russian. Althukhova’s ethnographic film will be available with English subtitles shortly.

The event leaves us with several important questions. Is there something about disability ethnography that calls for visual, performative, or multimedia modalities? Is there something about experiential differences implied by the word “disability” that exceeds the authority of text to describe experience, or that suggests nonverbal avenues of communication? Or, is multimedia ethnography just a fun technological trick for engaging non-academic audiences? What schools of disability anthropology are emerging globally, and how does this new St Petersburg school differ from the Moscow school led by Elena Iarskaia-Smirnova? Is there a characteristic ‘Russian’ approach to disability? Naturally, this event included discussion with the gathered audience, which included documentary filmmakers and disability activists as well as academics affiliated with EUSP, including a variety of disagreements about how this content should be best presented, and whose consumption it might be for. Focused on ethnography and the arts, the event did not include related work on disability justice by young arts professionals in Russia, such as artisan workshops for adults with Autism, fine art studios attached to institutions, public art projects aimed at raising awareness and interrupting ableism, and critical curatorial practices that seek to make art exhibitions more accessible.