Research on the participation of youth with disabilities in leisure activities https://www.sjdr.se/articles/10.1080/150174192016.1264467/
The article examines what kind of activities youths with intellectual disabilities participate in during their leisure time, and when and how they participate. The analysis is based on qualitative interviews of 10 youths with intellectual disabilities (aged 13–16) and their parents (N = 20). The study reveals that youth with intellectual disabilities have the same preferences and wishes for leisure activities as their peers with no disabilities. Both genders prefer sports and cultural activities. However, a closer examination reveals marginalization of intellectually disabled youths from leisure activities organized for young people in general. In our society, the understanding that leisure activities are a private concern is based on the idea of the ‘normate’. The ‘normate’ emerges when we explore the social processes of participation that constitute otherness and systematically marginalize groups of people, here intellectually disabled youths, from organized leisure activities.
Keywords: Leisure activities, participation, youth, intellectual disability
Leisure activities are important because they are an arena for developing peer relations and social inclusion (Kampert and Goreczny 2007). Mentally disabled youth seem to participate less in leisure activities with peers than typical developing children (Solish, Perry, and Minnes 2010), and their degree of participation decreases with age Taking part in recreational and leisure activities provides opportunities for social interaction, promotion of friendships for learning and development Physical activities offer the opportunity to contribute to well-being, improved physical fitness and an increased perception of self-efficacy and social competence (Kampert and Goreczny 2007), and for learning and developmen (Wendelborg and Paulsen 2014). While activity is the execution of a task or action by an individual, we understand participation as involvement in life situations (World Health Organization 2001). Leisure activities are typically activities in which individuals freely choose to participate during their spare time because they find such activities enjoyable (Majnemer et al. 2008). The benefits of participation in recreational and leisure activities are well documented, and we will now point at findings that stress the importance of leisure activities as phenomena regardless of age. Taking part in recreational and leisure activities provides opportunities for social interaction and promotion of friendships (Kampert and Goreczny 2007), and for learning and development (Øia and Fauske 2010). Furthermore, involvement in leisure activities provides opportunities to express oneself in different ways (Kolstad 2011), and to challenge one’s existing identity (Devine 2004). For example, participating in cultural activities opens for presenting oneself as an artist instead of an intellectually disabled person (Høiseth 2012) or client (Gürgens 2004). Physical activities offer the opportunity to contribute to well-being, improved physical fitness and an increased perception of self-efficacy and social competence (Hutzler and Korsensky 2010). In other words, aspects of participation in leisure activities can contribute to enhancing the quality of life of people with disabilities (Badia et al. 2013).
The importance of participation in leisure activities has also been acknowledged by the United Nations, in Article 30 of the rights of persons with disabilities, which highlights that persons with disabilities (2006) should be able to participate on the same terms as others in cultural life, recreation, leisure and sport. Additionally, in accordance with Article 12 of the UN Convention (United Nations 1990) on the Rights of the Child (UNCRC), children and youths’ ‘voices’ and participation in matters concerning them is not just a model of policy-making, but a legally binding obligation (Lundby 2007).
This article examines the leisure participation of Norwegian youth with intellectual disabilities.
By asking both intellectually disabled youths themselves and their proxies (parents or foster-parents) what they do in their spare time, we obtained a balanced picture of their situation. When we see that intellectual disability is characterized by significant limitations in both intellectual functioning and adaptive behaviour, which cover many everyday social and practical skills (American Association on Intellectual and Developmental Disabilities 2014), we also find that the UNCRC has not been adequately implemented for these children, neither generally (Carpenter and McConkey 2012), nor when it comes to specific leisure activities. In 2003, Aitchison (2003) introduced a shift in the disability leisure research field with her article ‘From leisure and disability to disability leisure,’ developing a more integrated understanding of disability and leisure. Before this leisure studies belonged to the non-disabled sphere and disability studies had paid little attention to leisure. This shift led to an increase in research on disability leisure. The dominant focus of this research has been on the environmental dimensions of availability and accomodability in mainstream leisure activities (King et al. 2013), and this was also our point of departure. However, the importance of the dimensions’ accessibility, affordability and acceptability emerged in our findings, thus expanding the two above-mentioned environmental dimensions of participation. Our findings are in line with Granlund (2009) and Maxwell (2012), who highlight the frequency and intensity of participation. They relate frequency and intensity to (1) availability (is it possible to act?), (2) accessibility (can I access the context?), (3) affordability (is it worth it in terms of available resources?), (4) accomodability (can the situation be adapted to my way of functioning?) and (5) acceptability (do I experience acceptance in the situation) (Maxwell 2012, 21).
Leisure and barriers to participation
Children and young people with intellectual disabilities participate in some activities in the community, but the number of social and recreational activities they attend are fewer compared to what their non-disabled peers attend (Solish, Perry, and Minnes 2010). According to Cowart et al. (2004), these children have the same desires and benefits from the same types of activities as other children. However, disabled youths’ participation in leisure activities is reported to be somewhat contradictory. On the one hand, persons with intellectual disabilities take part more in passive, solitary activities compared to their non-disabled peers (Buttimer and Tierney 2005). On the other hand, they are members of voluntary organizations to a higher degree than their non-disabled peers, with the exception of sports organizations (Ødegård 2006). Another difference is that while the typical developing youth will take part in leisure activities together with peers, the intellectually disabled youth will participate more together with parents or other adults (Solish, Perry, and Minnes 2010). King et al. (2013) suggest that the reason for this difference is that the intellectually disabled are more dependent on support. This support might result in fewer opportunities to develop self-determination and independence. Furthermore, the type of school and the age of the youth are found to affect leisure participation. Intellectually disabled pupils attending regular schools are found to take part in more leisure activities than pupils in special schools (Badia et al. 2013; Wendelborg and Paulsen 2014), and the leisure segregation process seems to increase the further into childhood they have progressed (Wendelborg and Paulsen 2014).
Persons with intellectual disabilities seem to encounter more comprehensive barriers to leisure than persons with other types of impairments (Molden and Tøssebro 2009). These barriers include expenses, insufficient resources to accommodate a person’s interests, transport challenges and attitudes in the community (Reynolds 2002).
Children with intellectual disabilities not only take less part in social activities, they also seem to have less friends than children without disabilities (Solish, Perry, and Minnes 2010). For example, many of them have no or only a few close friends, and spend very little time with friends outside of school (Solish, Minnes, and Kupferschmidt 2003; Oates et al. 2011). Furthermore, compared with their non-disabled peers, children and youths with intellectual disabilities participate more in social activities at home (King et al. 2013) and with adults (especially their parents) (Solish, Perry, and Minnes 2010), and with family and other persons with disabilities (Dolva, Kleiven, and Kollstad 2014). Even though more integrated school systems are found to have positive influence on the level of participation in leisure activities of children with disabilities (including children with intellectual disabilities) (Ullenhag et al. 2012), physical proximity in the community alone does not appear to ensure social inclusion in peer activities and interactions (Solish, Minnes, and Kupferschmidt 2003).
When it comes to the participation in physical activities of persons with intellectual disabilities, the amount of research is limited (Ingebrigtsen and Petter Aspvik 2009). However, the research that has been conducted has found that many individuals with intellectual disabilities are highly inactive during their leisure time (Frey 2004), and not active enough to gain health benefits from the activities (Temple, Frey, and Stanish 2006). Children with intellectual disabilities seem to take less part in physical activities and rather more in recreational activities than children without disabilities (Umb-Carlsson 2008). King et al. (2013) suggest that this might be due to the fact that recreational activities are easier to get involved in and master, and that there are less external barriers when it comes to recreational than physical activities.
Briefly summarized, existing research tells us that youths with intellectual disabilities participate less in leisure activities than their non-disabled peers. This article will ask the youths themselves and their parents about this and listen to their stories to examine: In what kind of activities, and when and how do youths with intellectual disabilities participate in Disability Leisure? As part of the study, we will compare this group’s participation in leisure activities with the existing knowledge of the participation of Norwegian youth in general (Vaage 2013; NOVA 2014).
Before answering the research questions, we will briefly present the Norwegian context and the research methods used. In 1975, the Norwegian Education Act for Special and General Education was merged with the School Act to make the comprehensive Educational Act for compulsory school. This conferred the legal right to pursue an education within their local school for all children, included children in need of special education services. This shift also made it possible for intellectually disabled children to stay in their family home with parents and siblings. Moreover, all central institutions for intellectually disabled people were closed down in 1991, and the responsibility for all kinds of services – including leisure activities – was transferred from the state to the local authority level. The leisure activities were to be provided by the public and non-governmental organizations (NGO’s) (St. meld. nr. 45, 2012–2013). However, in spite of the intentions behind integrated leisure activities, a number of studies have found that people with intellectual disabilities in Norway still participate more in segregated than in ordinary leisure activities (Kittelsaa 2008; Kolstad 2011; Söderström and Tøssebro 2011).