Separation, society and the state: Living with disabilities in Russia
Michael Rasell, University of Birmingham
Abstract
In 1986 the dissident Valerii Fedelov wrote with heavy sarcasm that "there are no disabled people in the USSR!" Disabled people were indeed rarely heard or seen in the Soviet Union, being separated from society at large by a set of special medical, educational and residential structures. The legacies of Soviet policy remain great today, with legal, infrastructural and societal factors continuing to pose large obstacles for many of the thirteen million people living with disabilities in Russia.
My paper presents the initial results of ten months' qualitative fieldwork on the role of social policy in the everyday lives of disabled people in Russia. It offers a bottom-up perspective on the Russian welfare state by discussing the various influences on the well-being of disabled people. In addition to looking at issues of education, healthcare and housing, I pay particular attention to the effects of two recent welfare reforms. First is the change in the official definition of disability, as a result of which disability pensions are now paid according to an individual's potential 'ability to work' rather than their ability to attain a reasonable quality of life. This marked a return to Soviet-era practices and ignored the many formal and informal barriers to employment faced by disabled people in Russia. The second major reform was the controversial replacement in 2005 of many in-kind services with cash benefits. This ended the free provision of transport, sanatoria trips and certain medicines. Although lauded by politicians as increasing consumer choice and well-being, the experiences of my respondents suggest that this move has not been entirely positive.
Overall, the twin shocks of 'monetisation' and the new definition of disability have led many disabled people in Russia to stop expecting support from the state. This raises the question of other sources of support. My paper therefore explores the crucial importance of close family to the well-being of disabled people, as well as the role and effectiveness of civil society organisations.
Ultimately, the experiences of disabled people in Russia reaffirm the thinking behind the 'social model' that disability is not an individual phenomenon, but constructed by society, institutions, infrastructure and not least the state. Limited successes notwithstanding, Russia's constitutional proclamation that it is a 'social state' does not seem to apply to disabled citizens, who are unable to fully realise their rights and participate in society.