“Who Will Take Better Care of Him Than Me?!” Perpetuating Institutional Culture in Families of Children with Disabilities in Bulgaria

Abstract

The right to live in the community is fundamental and is directly related to the possibility of independent living for persons with disabilities, a central principle of the UN Convention on the Rights of Persons with Disabilities (CRPD), ratified by Bulgaria in 2012. The opposite of these principles is living in an institution, and being compelled to reside in a space where one does not have the ability or one is not allowed to exercise control over one’s life and day-to-day decisions. Through oral history and anthropological reconstructive analysis, with a special focus on the cultural contexts and social meanings of personal experience, we explore how families of children with disabilities are simultaneously victims of the local disabling legacies, environments and practices, and key agents that effectuate and perpetuate institutional culture. We highlight the dynamics and interactions of the traumatic images on the legacy of state socialism, the actual barriers during the transition period, the coping strategies chosen by families and, ultimately, the grim effects with regard to the affirmation and implementation of the idea of independent living for people with disabilities in Bulgaria.

Keywords

• deinstitutionalization
• institutional culture
• independent living
• postsocialism
• families of children with disabilities