A selection from Stockholm University publication database

• Comment from the field: Disability and Consent in Everyday Interactions

  2024. Tintin Appelgren. Journal of Literary & Cultural Disability Studies 18 (4), 513-517

  Article

  For some years now I have worked as a personal assistant in Sweden, a role which involves working for a disabled person to assist with their basic needs, such as breathing, eating, getting dressed, and communicating with others (Sveriges Riksdag). I have primarily worked for people who have 24-hour assistance in their own home, assisting in most everyday activities. The Swedish personal assistant system was established on the principles that disabled people should have access to equality in living conditions, participation in society, independence, and self-determination (Ibid.). In this sense the intent behind the establishment of personal assistance in Sweden has some commonality with the principles behind the system of direct payments in the UK, as both aim towards a user-led system of services (Williams et al. 815-16; Egard 24), although the Swedish system includes the hiring of personal assistants by the person themselves, through the local municipality, a private organisation, or a cooperative (Egard 12).

  However, the fact that these systems were established on the principle of independence and self-determination does not in itself guarantee they live up to these values, as inclusive policies do not automatically lead to inclusive practices (Bolt 5-6). Even in a workplace where there is general consensus that autonomous choice is important, this does not necessarily translate into concrete everyday practices (Harnett 219-20). This makes questions surrounding autonomy and user-led services an ever-green topic and a constant area of improvement. Although systematic issues are certainly involved, Williams et al. (816) highlight the relevance of the relationship between a disabled person and their assistants to achieving autonomy in everyday life. In addition to Williams et al, researchers such as Hoole and Morgan, and Meyer et al. have explored how interactions between disabled people and their support workers relate to autonomy and choice. Though informed by this research, my focus lies in how these interactions can be understood through a framework of consent. 

  Read more about Comment from the field

Show all publications by Tintin Appelgren at Stockholm University