Deltagelse i hverdagslivet: En empirisk baseret undersøgelse af de oplevelser og erfaringer med deltagelse unge voksne med intellektuelle udviklingshandicap har i hverdagslivet

This PhD thesis - Participation in everyday life – an empirically based study of how young adults with an intellectual disability experience participation in everyday life” examines the following two main research question; how do young adults with intellectual disabilities experience participation in their everyday life and what are the conditions forming these experiences.

Over time participation has replaced the ideal of ‘normalizing’ the living conditions made available to people with intellectual disabilities (Talman, 2018), in the sense that participation is currently prioritized as a guiding principle and goal in the policies reflecting the welfare state and its efforts to care for people with disabilities. The main source of influence promoting this trajectory stems from The Rights of Persons with Disabilities (CRPD) convention and WHO’s ICF-model – both key to the fact that participation currently features as a central aim in most disability legislation (Tøssebro, 2016, Arvidson, 2013). The tangible changes following this prioritization are clear, the effects following its practical ‘installment’, however, are less so. The objective of this thesis therefor is to
address how young adults with intellectual disabilities in fact experience participation in their everyday lives.

While researching this specific area of interest, I have, openly and empirically, sought to grabble with how young adults with intellectual disabilities themselves experience participation in their everyday life, meaning that I have south to promote a better understanding of how participation may be experienced from the perspective of young adults with intellectual disabilities. Thus, applying phenomenology and phenomenology of embodiment as my methodological steppingstones as means of making this specific perspective the primary object of investigation. Attending specifically to Maurice Merleau-Ponty and his work on phenomenology of embodiment as well as the scholarly developments that
this has prompted (Merleau-Ponty, 1994 &1999, Duesund, 1996, Finlay, 2014, Leder 1990).

Mindful of the fact that participation is conceptualized differently, pending on varying
theoretical traditions and their alternating definitions and understandings (Eide et al., 2017, Hallrup, 2019, Steinhardt et al., 2021), I turn to a tradition specifying that participation is best understood as a deeply embodied experience of being-in-the-world. Moreover, as way of attuning to the perspective of young adults with intellectual disabilities, I have sought to carefully consider the the conditions that are important to their specific way of experiencing and relating to the world. Essentially, using phenomenological theories of everyday life (Bech-Jørgensen, 2001, 2003), critical feminist theory (Kittay, 2011 &2019, Vorhaus, 2014, Bach, 2017) and new Nordic research on participation (Gjermestad et al., 2022, Skarsaune et al., 2021.) as backdrop for both researching and discussing how participation is conditioned by the surrounding environment.

As a way of ‘remedying’ the fact that individuals with intellectual disabilities commonly have been excluded from research attending to their needs and way of being-in-the-world (Nind & Stranadova, 2020), the fieldwork informing this thesis is carried out with young adults with intellectual disabilities and as such extends from the methods and approaches characteristic of participatory research (Nind, 2014, Walmsley & Johnsson, 2003, Strnadová & Walmsley, 2017). Also, by adapting a multi-sensory methodology (Pink, 2015, Rice, 2013, Finlay, 2014b, Feld, 2015), the thesis seeks to address the increasing critique that has been voiced against participatory research predominantly including people who
can communicate verbally (de Hass, et al.,2022, Mietola & Vehmas, 2019, Gjermestad, et al., 2022). Thus, constructing a methodological framework informed by phenomenology of embodiment, multisensory, and the method of choice, this thesis seeks to promote a line of participatory research that more ardently utilizes the potentials linked to multisensory informed research, meaning research that taps into and includes multisensory forms of input and expression such as hearing, vision and movement, etc., in the empirical production (Pink, 2015, Feld, 2015).

In this thesis the term everyday life is defined as daily life in its entirety (Bech-Jørgensen, 2001, 2003). Basically, approximating everyday life as life lived at home, at work, in leisure time and all the time in between. Informed by this definition, I have, as part of my fieldwork, “followed” four young adults, between 26-36 years with intellectual disabilities ranging from mildly to profound intellectually disabled, exploring how they experience participation in all aspects of their everyday life. More precisely, I have “followed” the participating young adults at their housing/living communities, while working at their sheltered employment, during their leisure time (as they participate in various recreational
activities, treatment offers, etc.) and in their local community, etc., using multi-sited fieldwork, observations through participation, informal conversations, field walks, qualitative interviews, and audio recordings (Wentzel Winther, 2018 &2015 Rasmussen, 2017). Due to this mode of approaching, the thesis in a way transcends the physical spaces in which the participating young adults live their everyday lives. And moreover, it also transcends the time in which they do so, in the sense that it attends to their everyday life as it takes plays out in the morning, noon, and night (Winther Wentzel, 2017). To that effect, it effectively grapples with all the variation and nuance essential to the experience of participation in everyday life.

In brief, the thesis shows that participation is not an unambiguous phenomenon as it details how young adults with intellectual disabilities tend to have different experiences with participation in their everyday life and that these different forms of participation can be more or less participatory. Participation is here understood as lived experiences with having influence on one’s own life, to take part in different types of activities, such as leisure activities, work, and household chores, to take part in social relations and interactions, social communities, and experiences in belonging and being able to move and take
part in the local environment. And when researching participation openly and empirically, across the time and space of everyday life, it effectively takes on rather different forms of expression, meaning that the thesis underscores how participation in one space is attributed huge value and meaning whereas it is attributed no noteworthy value and meaning in other spaces, that one form of participation can create a barrier between other forms of participation, and also that participation can be used to convey personality traits as in preferences and dislikes.

In sum, the thesis shows that young adults with intellectual disabilities experience different participatory challenges in their everyday life. Yet, given the emphasis and recognition placed on verbal communication by their surrounding environment, the challenges they face are often relate to their use of non-verbal communication. The thesis also shows that physical dependency on assistance to realize wishes and needs still is meet with an evaluation of whether or not they should then be realized, thus indicating that the outside world inevitably creates barriers for participation as it more or less implicitly accommodates
the average human. And lastly, the thesis shows that there is a felt pressure to participate in day-to-day tasks, which in turn, for some individuals with physical capabilities, can lead to a lack of belonging and participation.

Ultimately, the thesis concludes that different relationships have meaning for the young adults with intellectual disabilities participation in everyday life. It concerns relationships to the body, human relations, and relationships created by society. The body has meaning in terms of participation in everyday life. When the body steps into the forefront of attention it becomes significant for that person’s engagement or participation in the world (Kissow, 2013 a+b, Leder, 1990). But while engaging with the outside world, both in terms of the physical layout and its various demands as well as the changes in levels of functioning, the body can stand out as dys-appearing which in turn may mark possibilities for participating in everyday life (Leder, 1990).

The thesis concludes that relatives play a central role in the young adults’ participation in everyday life by offering both social interaction and practical assistance, typically by accompanying the young adults to leisure activities. Other contemporaries, however, also play an important role, like friends for example. They are truly important to the young adults with intellectual disabilities. But the few self-elected social relations they have often take place within the boundaries of the welfare offers and are sometimes subjected to
restrictions imposed by the staff. Moreover, the thesis concludes that the attention afforded to loneliness and isolation in specific social communities and in society at large does not equate the attention, help, and support afforded young adults with intellectual disabilities in creating and maintaining relations.

The thesis also concludes that professionals working in welfare state institutions catering to people with intellectual disabilities, play a role in the participation of the young adults. The way the professionals see and characterize individuals with an intellectual disability affects their possibilities for participation and experiences (Saevi, 2004. Folkestad, 2004). Furthermore, the professionals’ goals for the social pedagogy praxis play a role. Independence is presented as a main goal in the social pedagogy praxis and is equated with participation. Thus, impacting individuals with disabilities by civilizing them into independence,
though, for example, the performance of household tasks as well as through
the everyday encounters with professionals.

But despite the overriding prioritization of participation as a guiding principle and goal, this thesis concludes that the welfare and societal organization and administration catering to individuals with disabilities tend to contribute to the creation of barriers that actually further structural exclusion of people with disabilities. A view of human being, which favors individuals who are independent normal humans and a cognitive capable citizen, affects the Danish legislation and the efforts made for people with physical and mental disabilities. It impacts the risk of citizens with extensive disabilities being stigmatized and (further) excluded from society. (Kittay, 2011, 2019, Bach, 2017, Vorhaus, 2014). Municipal governance and management practices set the ground rules for the municipal offers for citizens with disabilities, and for the help and support they are offered. These are circumstances that limits the participation of the young adults in, for example, social communities.

In view of these conclusions, this thesis ultimately argues the need for more extended debate concerning the view on human being expressed in the Danish legislation, and the societal organization and administration of public care for people with intellectual disabilities, seeing that it implicitly seems to attribute to the exclusion of citizens with intellectual disabilities.