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  4. New ways to understand personal assistance: lessons from Sweden

New ways to understand personal assistance: lessons from Sweden

Ciara Brennan, Doctoral Candidate, Centre for Disability Studies, University of Iceland and Professor Rannveig Traustadóttir, Centre for Disability Studies, University of Iceland

Choice, control and independence are words often used to describe personal assistance. Sometimes these words are harmful or misleading because they exclude people who need extra support. Some laws and policies say that people cannot have assistance unless they prove that they can control it themselves. Sweden is different. A law introduced in 1994 says that people with learning disability have a right to assistance. This research was done with members of an organisation called JAG in Stockholm, Sweden. JAG was set up by people who need the support of others to organise their personal assistance. Most of the people live in their own house or apartment in their community. With the support of family and assistants, they showed us what their life is like since they had a right to assistance.

This paper will discuss three themes that were important for participants:

  • Health and safety.
  • Help to communicate with others.
  • Strong support networks to keep assistance in the future.

We argue that some of these themes do not fit comfortably with ideas of choice, control and independence. But, they were important for most participants. We finish by suggesting other ways of understanding the complexity of personal assistance. For example, we will discuss the idea of 'networks of assistance'. This would recognise that, sometimes, many people are needed to have good quality assistance.

View the PowerPoint presentation (PPT)

Biography

Ciara Brennan is a PhD student at the Centre for Disability Studies at the University of Iceland. Ciara’s studies personal assistance and independent living in Iceland, Norway and Sweden. Before she came to Iceland, Ciara worked as a researcher at the National Institute for Intellectual Disability, Trinity College Dublin from 2009 to 2011. She worked on human rights projects with people with intellectual disabilities in the Republic of Ireland.

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