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Poznań, Poland - Morasko Kampus, room: 3.160
Disability services in present-day Russia and medicalization of “special” childhood
Contemporary activist discourse in Russia, in line with the international trends, follows the diversity model approach to disability and tends to view disability as a permanent condition that has something to do with a person’s identity and self, as a socially constructed category, rather than an individual health problem. In the parents’ narratives, however, their child’s disability is most commonly represented as illness, a diagnostic category that needs to be established and cured. A parent’s story is usually a story of struggle for appropriate/desirable diagnosis and search for “the magic pill”. Here a child with disability seems to belong to the domain of medicine/psychiatry, rather than to the domain of childhood and pedagogics. The majority of disability services exploit this deeply medicalized view, and prosper on it. The socio-economic reforms of the 1990s lead to extreme commercialization of medicine and proliferation of various institutions and practices of alternative medicine. Nowadays popular diagnoses that lead to child disability status, like including autism, cerebral palsy, Down syndrome, and “mental retardation”, seem to create a whole industry of services, disability rehabilitation sphere becoming highly commercialized. In many cases the effect of the therapies might be described as placebo effect. The paper is based on the one-year long ethnographic research, conducted in 2016-2017 in several big Russian cities. The research methodology included 130 prolonged interviews with parents of children with autism, intellectual and multiple developmental disabilities, and experts, as well as participant observation in rehabilitation centers.