Experiences of people with psychosocial disabilities and support on the path to independent living and community inclusion
Keywords:
independent living and inclusion in the community, deinstitutionalisation, independent living homes, psychosocial disability, United Nations Convention on the Rights of Persons with Disabilities, everyday lifeAbstract
This paper aims to reveal and reconstruct how the institutional features of X independent living home affect the projections of independent living and community inclusion of persons with psychosocial disabilities. An ethnographic study was carried out in the X institution in Z city, where data were collected by interviewing 6 persons with psychosocial disabilities and participant observation. The study revealed that people with psychosocial disability experience various institutional and systemic barriers to independent living and community inclusion. The analysis of the data organised the main barriers to (non)inclusion into two themes: institutional physical features and the existence of institutional culture. Institutional physical features included living arrangements resembling a hospital, cohabiting with an unselected person or residing in an inventoried environment. In contrast, the phenomenon of institutional culture was much more complex and dual. Persons with psychosocial disabilities revealed that various aspects of institutional culture made them feel that they had lost control over their lives and that someone else controlled their lives, i.e. their wishes for private life were not fulfilled, there was a hierarchical disposition of power, a sense of self-control of personal life was lost, and a feeling of being controlled by “someone else” emerged. Although the Convention and other deinstitutionalisation acts stress that living independently does not mean that a person with disabilities does not need assistance, the need for individual assistance when living in the X independent living home is only partially met according to the participants of the study. The features of institutional culture create a pseudo-help discourse, whereby the help, service and relationship provided to people of the X independent living home is not critically evaluated and is over-positively hyperbolised.