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Research

Profound Intellectual and Multiple Disabilities and a Good Life

2014-2018 (funded by the Academy of Finland)

Researchers: Dr. Reetta Mietola, Dr. Sonja Miettinen, Prof. Simo Vehmas

SUMMARY

This research project is concerned with understanding the lives and experiences of people with profound intellectual and multiple disabilities (PIMD). The main question of the project is: what makes a good life for people with PIMD? The aim is to provide thorough empirical and theoretical analyses of the well-being of people with PIMD and thus contribute to the ethical and political discussions about their moral and political standing in society.

Empirically, this project involves (1) developing a method of data collection in disability ethnography, (2) describing the lives of people with PIMD in various settings, (3) examining the views of family members and caring staff about the well-being and a good life for people with PIMD, (4) analyzing the institutional practices and values concerning people with PIMD in terms of a good life as well as Sen’s and Nussbaum’s capabilities approach, and (5) analyzing how central capabilities of well-being are fulfilled in the lives of people with PIMD. The project will involve a longstanding ethnographic observation of adults (20-60 years of age) with PIMD in varying places of residence, interviews of family members, focus groups including professionals, as well as written material and guidelines that direct everyday lives of persons with PIMD.

Theoretically, the project aims to make empirically informed contribution to the debates about the moral and political status of people with PIMD, the ontological formation of PIMD, and how plausible knowledge about the lives of people with PIMD can be gained.

Practically, the project aims to produce analyses that would enhance our understanding about the well-being as well as the moral and political status of persons with PIMD as well as other groups of people with cognitive disabilities such as people with schizophrenia, autism and dementia.