In Case of Emergency: Why it is so Hard to Normalize Intellectual Disability in Russia

The article analyzes attempts to “normalize” disabilities, particularly intellectual disabilities, in contemporary Russia. The NGOs that emerged in the 1990s put a lot of work into reforming the long-term state residential care system and changing the principles of care for people with disabilities. They offered so-called assisted living as an alternative — specially created conditions in which people who have no experience of living outside the state institutions can become familiar with a “normal” life. However, as the author shows, due to the depoliticization of their activities and ongoing financial crises, initiatives that could have influenced the integration of people who spent most of their lives in residential institutions — and could have put an end to Soviet segregationist policies have radically transformed the Western idea of “normalization” by adapting it to the local context. By drawing on Patrick McKearney’s theory of “transparency” on the one hand and Vincento Carpanzano’s “realistic” imagination on the other, the author examines the epistemology of NGO staff and investigates why, even in an intended normalizing project, intellectual disability still serves as a marker of radical alterity. Focusing primarily on practices of imagination and fantasizing about the future, the article demonstrates how the staff of one specific NGO, instead of advocating for their clients’ rights and expanding socializing opportunities, essentialized the psychiatric diagnoses and intellectual differences of its clients and fetishized the hope of financial security, locking former orphans with intellectual disabilities into the status of “disabled.”

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