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Università Ca' Foscari Venezia
Batchelor Institute of Indigenous Tertiary Education
Ghent University
Universidad Nacional de Educación a Distancia
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The research aimed to characterise the disability movement in the region in terms of organisation types, advocacy issues and strategies, and the experienced influence on regional policy related to disability issues.
Methods. A survey was sent to disability interest groups in the region about their advocacy activities and strategies. Interviews were then conducted with groups not represented in the council about their experienced possibilities to influence regional policy. Interviews were also conducted with the organizations, politicians and officials in the council concerning their views of the council’s role and influence.
Results. The decade following the disability council’s implementation, a strong development in both policy and reforms regarding accessibility and disability awareness occurred. Most disability organizations represented in the council are content with their impact, however, some feel excluded when they try to raise issues related to their specific disability. There are also conflicts about representation, for example regarding impairment types, and election and nomination procedures. This relates to the question whether the council can really represent the disability movement as a whole, when only 11 organizations are represented. Furthermore, the research raises questions about different interest groups' possibilities to influence decision-making processes when their organisation types do not match the requirements by the administration. Results also point to a lack of representation in many organisations regarding younger aged people and non-white Swedish ethnicities.
Conclusion. Collaborative governance has gained considerable influence over the last two decades. However, issues of representation concerning disability types have not been dealt with enough, leading to conflicts in the disability movement – and a need to problematise the legitimacy of interest groups' as well as collaborative governance structure's.
The law governing PAS (LSS) is supposed to make it possible for assistance users to “live a life like others” under good living conditions and, furthermore, make it possible for them to participate on equal terms in society. However, sexuality is not mentioned in LSS, which leads to insecurity whether or not sexual facilitation is sanctioned. This insecurity is further deepened as the Work Environment Law states that the personal assistants’ working conditions must be both physically and psychologically adequate. Moreover, the issue of sexual facilitation is surrounded by taboo and ambiguity, and in my thesis I seek to analyze the logic behind these facts, as well as their consequences for concerned parties.
The thesis is a compilation of a comprehensive summary (kappa), a binding text of six chapters (written in Swedish) and four related papers that have been previously published in international scientific journals. The empirical material consists of: 1) interviews with 10 personal assistance
users, and also online observations of a virtual community’s discussion of disability-related issues, 2) interviews with 15 personal assistants, and also online observations of a virtual community’s discussions of personal assistants' working conditions, 3) focus group discussions with 10 service managers from different organizational settings, and 4) an analysis of texts about how sexual facilitation in PAS can be understood and handled, published by the Ethics Board’s Social Committee (part of the Swedish National Board of Health and Welfare) and The Swedish Federation of Mobility-Impaired Youth.
The thesis thus explores how assistance users, assistants, managers and different stakeholders conceptualize sexual facilitation as a sexual practice, and furthermore, the relationship between the individual, social and societal levels. The core of the analysis is an understanding of bodily functioning, sexuality and professionalism as infused with normative ideas that influence how service is provided in practice. The results show that bodily ideals and what is considered “normal” ways of conducting sexual activity impede assistance users in expressing their sexual needs, especially if they need assistance to realize them. Personnel have great discretion when they decide who does what, for whom, how, and why (or why not), greatly influenced by their personal values about sexuality. The silence surrounding sexual facilitation on the policy level, combined with it being a taboo issue in society, contributes to the lack of attention in service provision. The study shows that sexual facilitation is a complex phenomenon and also constitutes a field of antagonism where the rights and responsibilities of concerned parties are at stake, i.e. sexual citizenship, worker’s rights and the bounds of welfare. Do service users have a right to sexual fulfilment, and if so, how is this to be catered to in practice, and if not, on what grounds can people in power positions define other’s sexual lives?