Så nära får ingen gå? En studie om sexualitet, funktionshinder och personlig assistans

Abstract

The general aim of the thesis is to explore how sexuality is understood, described, responded to and organized in Swedish personal assistance services (PAS); that is services to people with impaired mobility. Previous research has demonstrated the struggle for disabled people to be acknowledged as sexual beings in a culture where dominant ideals of sexuality exclude disabled bodies. For assistance users who require sexual facilitation, i.e. personal assistance in order to manage their desired sexual conduct, this struggle can be even greater. LSS, the law governing PAS, 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 fulfillment, 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?