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The Dutch ratification of the UN Convention on the rights of persons with disabilities put social inclusion high on the political agenda. The Convention defines social inclusion as ‘living independently and being included in the community’. However, this definition does not resonate with the daily life of people with profound intellectual and multiple disabilities (PIMD) residing in sheltered living institutions, who often need care for almost every aspect of their lives and have limited capacity for verbal expression (Simplican et al., 2015). It is unclear what social inclusion should mean for people with PIMD and what people with PIMD want from social inclusion themselves. As a result, care professionals and relatives struggle to implement social inclusion in their daily practice. The idea of social inclusion thus actually threatens to exclude people with PIMD.

 

This project sets out to examine ways in which the notion of social inclusion can be conceptualized for and implemented into care practices for people with PIMD, taking their own appreciations into account. Implicitly, care practices for people with PIMD are driven by two opposed understandings of social inclusion, that articulate two opposing ethical ideals. On the one hand, social inclusion is understood as stimulating equality, but on the other hand, social inclusion is interpreted as accommodating difference.

 

Seen through the lens of equality, social inclusion for people with PIMD is about participation in society and live a ‘normal’ life, just like everyone else. We call this interpretation of social inclusion ‘participative citizenship’ (Simplican et al., 2015; Bigby, 2011). However, it is unclear what a ‘normal’ life would look like for people with PIMD, who are dependent on care around the clock. This understanding of social inclusion runs the risk of further marginalizing people with PIMD, as most policies and practices that are derived from this conceptualization – like ‘normal’ participation in the labor market and ‘normal’ living in ‘normal’ homes – are not applicable to them.

 

This risk can be overcome by embracing the other understanding of social inclusion, which starts with the idea of difference. Seen through the lens of difference, social inclusion signifies a need to adapt to the needs and capacities of people with PIMD (Hall, 2004; Reerink et al., 2017). Social inclusion is then understood as inclusion of people with PIMD based on their own capacities, needs and views. However, this understanding of social inclusion is not without risks either. First, since it is difficult to know what their perspectives are, there is a risk that other people decide what their perspective would be, without giving them a say. Second, when ideals of ‘normal’ living are indeed abandoned, the alternative moral horizon is less clear. If we decide that ‘our’ criteria of a good life do not apply to ‘them’, what are alternative criteria that can protect people with PIMD against neglect and abuse? Therefore, just like the emphasis on equality, an emphasis on difference could also further marginalize people with PIMD.

 

This project seeks to address this ethical tension by looking at social inclusion as it unfolds in actual care practices for people with PIMD. By applying an empirical ethics of care (Pols, 2015) we aim to analyze how the ethical tension between equality and difference gets navigated in care practices. By triangulating the qualitative methods of shadowing people with PIMD (1), interviewing professionals and relatives who care for them (2), and additional focus groups (3), the project aims to uncover and describe the tacit normativities at play in care practices of professionals and relatives. In addition, it will pay attention to the appreciations of people with PIMD themselves (Pols, 2005) to consider how they undergo these practices. In doing so, the project will help care professionals and relatives cope with and discuss concomitant moral dilemmas in practices of good care.

 

This study has two major contributions. First, it will provide professionals and relatives with a new idiom to talk about and consider their practices of social inclusion for people with PIMD. This idiom will also support managers and policy makers implementing Article 19 of the UN Convention. Second, by innovating the research design to include the appreciations of people with PIMD as well as the views of their closest care professionals and relatives, the project will generate knowledge on bringing the perspective of people with PIMD into view. These findings will be developed into six concrete knowledge products: educational material, a guide for family advocacy groups, a photo exhibition, a research report, two peer-reviewed academic articles and a conference. These products can be distributed widely through members of the consortium, including KansPlus, VGN, SIEN, Platform EMG and the Quality of Life Center, as well as six collaborating care organizations.

 

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