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Issues » 2013/1 - Deinstitucionalisation of Social Services »

Jitka Nelb Sinecká

Looking over the Wall: Deinstitutionalization of People with Autism during Communism and after 1989 in Parental Narratives


Abstract:

During communism, people labeled with mental disabilities including those with autism were sent to large institutions. Five families with children and young adults with autism shared their stories and experiences with institutionalization in the past and deinstitutionalization after 1989. Using narrative analysis of interviews with mothers, I interpreted their personal accounts and memories to portray the struggles and success stories on issues like diagnosing children with autism, state support and services, life in institutions, bringing up their children at home, media coverage of institutions, deinstitutionalization, and alternatives to large institutions. Borrowing from the theory of structure and agency, I depicted how the power-holders often constructed and constricted their children’s and theirs agency through labeling and presuming incompetence and dependency. Peeping over the walls of large social care homes, I found similarities to total asylums described by Goffman more than 50 years ago. However, current small-size supported homes are far from an ideal. They also present characteristics of what could be called micro-institutions. The goal of this article is not to criticize large institutions but to critically asses the advantages and disadvantages of both former and current institutions for people with disabilities.


Keywords:

institutions, total asylums, autisms, communism, deinstitucionalization, family narratives




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