SEGEL Difficult Decisions - Mutual Solutions

«p>Self-determination and independent living are of central importance for all people. This holds also for persons with cognitive disabilities, who have rights and obligations like everybody else: That has been an undeniable fact at the latest since the adoption of the United Nations Convention on the Rights of Persons with Disabilities. This changed perspective presents very special challenges to institutions and to specialists and support persons working with persons with disabilities. This makes itself felt in particular when the aim is for everyone to discuss together moral questions that can arise in the area of conflict between the right to self-determination and the duty of care. The research project »Participatory ethical decision making: People with and without disabilities together clarify questions concerning self-determination” takes on these challenges. The aim is to develop an instrument for working on ethical questions in the area of tension between self-determination and control by others. The instrument will make it possible for people with and without cognitive disabilities to discuss together concrete questions. In addition, fundamental content-related questions on the significance of self-determination for persons with cognitive disabilities will be clarified within the framework of the project. The research project has a development part and a research part and is participatory in design. That means that all work steps will be executed together with persons with cognitive disabilities. In the development part, the main focus is on developing an instrument.

The research part has the following objectives: for one, clarification of norms and values that are involved in ethical decision making in the area of disability, and for another, clarification of the significance of the concept of self-determination for and with persons with cognitive disabilities themselves. In addition, the instrument for decision making on ethical questions will be tested, and the project’s participatory approach will be reflected upon.