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 ten youths with intellectual disabilities (aged 13-16 years) and their parents (N=20). The study reveals that intellectually disabled youths have the same preferences and wishes for leisure activities as their non-disabled peers. Both genders prefer sports and cultural activities. However, a closer examination reveals marginalisation of intellectually disabled youths from leisure activities organised 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 marginalise groups of people, here intellectually disabled youths, from organised leisure activities.
Sami people experience a wide range of challenges in their dealings with health and social services (Blix 2016). However, little is known so far about the circumstances for disabled people of a Sami background (Huuva 2014). Since previous research has shown that people with disabilities have poorer living conditions and fewer opportunities for social participation than the general population (Kittelsaa, Wik & Tøssebro 2015; Söderström & Tøssebro 2011), it would be reasonable to assume that disabled people of a Sami background may risk marginalisation along both dimensions or have a 'double disadvantage' (Wehmeyer 2007). Through narrative analysis of interviews with disabled Sami people, we discuss marginalisation processes faced by this category in their dealings with welfare services. We argue that research based on experiences from ethnic minorities are not sufficient analytical tools to understand the experiences of the Sami people. Rather than experiencing culturalisation (Fuentes 2015), disabled people of a Sami background still experience assimilation mechanisms when communicating with welfare services.
BackgroundA study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature.ObjectivesThe main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these.MethodsThe ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian).Findings and discussionThe researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability.ConclusionThe knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.
This article examines the role of the "differently-abled" researcher in facilitating inclusive research with adults (age 16 and older) with intellectual disabilities living in Sami areas of Norway. Topics discussed include challenges that may arise while conducting such research due to the nature of the project (externally-funded pre-existing project), methods applied (quantitative) and people involved (some being of Sami background and some with intellectual disabilities). In this study, for example, the research sponsors had predetermined both the topic of investigation (i.e. living conditions) and the method (i.e. by questionnaire), without first consulting people of indigenous background. I argue that, although such stipulations and the double-minority status of research participants may pose additional challenges in fully accommodating the ideals of inclusive research, it is possible and sometimes advantageous to use inclusive research designs to conduct studies involving people with intellectual disabilities. In performing such research, an important question is whether people who have experienced discrimination and stigmatisation should be forced to take on identities they are not comfortable with in order to be involved in research about themselves. The article additionally illustrates how to apply an inclusive design in quantitative research while working with pre-existing research projects.
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