Autonomy and people with intellectual disabilities

Abstract

This article discusses how people with intellectual disabilities experience individual autonomy in their daily lives. It draws on a qualitative research in Iceland with 41 individuals aged 26–66 and data was gathered with interviews and participant observations.
The research began in 2011 and is scheduled to end in 2015. The academic
fields of disability studies and ethics seldom intersect, but this research project brings together these two fields of study, which on the one hand creates space for new ways of thinking about disability and on the other hand ethical issues, such as autonomy.
The relational approaches fit well with the United Nations’ Convention on the Rights of Persons with Disabilities, which assumes that disability stems from interaction between people with impairments and attitudinal and environmental barriers. Furthermore, the convention recognizes the importance of individual autonomy and independence for disabled people, including the freedom to make their own choices. In an attempt to understand the complex forces that influence the actualization of their autonomy we examined their experiences in their homes and daily activities. We ask how the attitudes of employees and families, access to information and assistance in daily life contribute to or hinder their individual autonomy. Historically, people with intellectual disabilities were not trusted to make decisions and choices and this perspective was justified with the argument that due to their impairment they were not capable of developing their individual autonomy. However, the theoretical foundation of this research, i.e. the Nordic approach to disability and relational autonomy argues that all people exist in relation to other people and therefore it is important to examine how individual autonomy is developed through interactions with people and environment.
From these ideas and the findings of our research we conclude that staff
and family members are influential in the actualization of the research participants’ individual autonomy. The article demonstrates how attitudes toward people with intellectual disabilities have improved over the last decade and seem less protective and paternalistic. In spite of these positive results, however, numerous examples demonstrated that the assistance which the research participants received in their homes was characterised by many institutional practices and they were often met with belittling
views. Thus, the research indicates that the domestic help people with intellectual disabilities receive often has institutional qualities and they are often met with disparaging perspectives from staff and family members. Besides, many did not have access to important information needed to develop their individual autonomy and independence, including making their own choices. The research findings suggest that people with intellectual disabilities can, with appropriate support, develop individual autonomy and make their own choices. Furthermore, the research findings demonstrate that people with intellectual disabilities often lack information about social opportunities and also about their rights which can make it difficult to make choices or fight for their rights. It is too simplistic to focus on the individual and her or his abilities or impairment when seeking explanations for their lack of access to information. Access
to relevant information on which to base their choices and decisions is, according to the idea of relational autonomy, also the responsibility of professionals and family members and, as stated in the Convention on the Rights of Persons with Disabilities, those who work with disabled people should be aware of how their perspectives and practices influence individual autonomy and social participation.