ABSTRACT
Previous youth research has examined how prevailing ideas of youthfulness influence young people. Youthfulness is often regarded as something positive and a desirable ideal, associated with health, beauty, vitality, strength, hope and happiness (Ganetz 1991: 8; Barron 1995: 24; Hughes et al 2005; Slater 2012). Young people are often compared with and compare themselves with this idealized view of youthfulness, yet it rarely corresponds to their own experiences of their everyday life. This concerns the body as well as the life situation taken as a whole. ‘Although the ideal body is always young, the young body is not always ideal’, as the disability researcher Jenny Slater puts it (2012: 201). Commercial interests, media, educational institutions and the labour market put pressure on young people (Ganetz 1991: 8; Sandvin 2008: 72). High unemployment rates and difficulties getting into the housing market have led to increased dependence on parents and the institutions of the welfare state. As unemployed they have to be constantly available for labour market measures, such as courses, occupational training and therapy (Sandvin 2008: 72). This description of the situation for young people is valid for disabled
youth too, but the discrepancy between desired youthfulness and everyday life experiences is even larger. The qualities associated with disability are contrary to the above-mentioned signifiers of youth: ugliness, tragedy, asexuality, invalidity and frailty, and, as the sociologists Bill Hughes, Rachel Russell and Kevin Paterson (2005: 12) maintain, all this makes the two of them incompatible. As a consequence of attitudinal and structural barriers, young disabled people run a higher risk of being permanently excluded and marginalized (Sandvin 2008: 72-3). They may also have continuous need of assistance and help, as Barron (1995) points out in an interview study with men and women with physical impairments aged 17 to 24. Hence they are marginalized both as young in relation to adults and as disabled young people in comparison to able-bodied youth. They may, for instance, be dependent on their parents to be able to get to certain leisure activities. Further to this, they have limited options because some activities are not accessible, and as a result they are reduced to organized special activities (Barron 1995: 35; see also Hughes et al
2005). The environments of these special activities are often characterized by high social control, in comparison to alternative places where subcultural identities can be developed (Sandvin 2008: 73). Due to inaccessible public transport and built environments, young disabled people may also be denied access to public spaces of consumption, and hence cannot choose among the same consumer lifestyles as their able-bodied peers (Hughes et al 2005). Thus, compared with the picture of youthfulness, disabled young people and their everyday life risk being interpreted stereotypically – both by themselves and by others – as characterized by isolation and loneliness (Barron 1995: 25). Adolescence is also characterized by the search for one’s own identity and
detachment from the parents, which can cause emotional stress and anxiety (Ganetz 1991: 9-10; Barron 1995: 26). As the sociologist Gisela Helmius (2004) claims, disabled children often require more aid than other children and the parents are often regarded as the self-evident providers of help. The parents’ protection can also aim at avoiding disappointments for the children. However, the parents’ care risks resulting in the children being hindered from acting on their own initiative and taking care of everyday tasks. Their freedom is limited by what Barron (1995: 85-92) calls ‘intrusive parental support’. When they become teenagers the separation from the parents is rendered more difficult, as is the creation of an identity and a life of their own (Helmius 2004: 104-6). Becoming an adult is often considered synonymous with being more independent, which is looked upon as normal. If a grown-up individual is not conceived as autonomous it often leads to an infantilization of the individual (Barron 1995: 57-8). There is debate within the disability movement and disability studies regarding
independence versus dependence. On the one hand, there is a strong critique of the presumption that a disability inevitably leads to dependence. It is argued that the degree of dependence is related to the context and in what way help, if any, is given (Morris 1995: 87; Thomas 2007: 96). This critique could possibly be true of the above children and youth research too and its assumption that young disabled people are dependent on their parents. How is this dependence measured and how is a dependence on practical help distinguished from, say, emotional dependence? Furthermore it is claimed that professionals in medical and social institutions strengthen the dependence, partly by preventing self-determination, partly by contributing to the medicalization of disabled people and the view of them as being in need of care and support (Thomas 2007: 97). Professionals can, for instance, make decisions without consulting with the person concerned, or, if it is a question of young people, only consult with their parents. Besides, independence is often defined as being capable of doing everything by oneself, while the disability movement defines it as being capable of choosing and controlling the assistance needed (Barron 1995: 61; Morris 1995: 74-5; Berg 2008: 19). According to STIL it is not what or how much assistance a disabled person needs that determines the degree of independence, but what quality of life he or she has with the assistance (Berg 2008: 19).
