Panel discussion: Models, milestones and achievements by the Swedish Independent Living organisations, Susanne Berg, November 8 2008.
STIL is the oldest Independent Living organization in Sweden. The organization started the Swedish movement and therefore has worked the longest with the Independent Living model.
At the conference in 1983 the Independent Living movement was presented by Ed Roberts and Judy Heumann among others. It was presented as a movement with two sides, two legs. One leg consists of the political movement and work to influence society by shaping its own solutions and incorporate these in the societal structure. The other leg, which might be even more important, is the individual attitude to yourself as a citizen with disability and is about taking responsibility for so well your own life as the joint solutions. It might well be the latter part which, at least for me, is the characterizing trait of Independent Living in comparison to other movements, that is the emphasis on personal responsibility, a individual’s power over their own life but also the responsibility to formulate new solutions and present them to the community.
After the conference, when STIL started, they were a loosely connected working group consisting of a small number of people. Together they built an organization. During the early days they worked hard on strengthening the personal part through among other things training and days with peer support. Persons from California, from the World Institute on Disability came to Sweden and gave courses in peer counseling. Within STIL they also worked a lot with this type of peer support. Peer support means that persons who share the same situation – with partly the same experiences but maybe on different stages on the road to citizenship – together discuss and support each other forward towards a complete citizenship. This was the main focus at the start.
It was also the case that it took a number of years before they gained funding for the project and could start concrete work on the assistance program and how this should be developed to work according to the Independent Living model. Eventually they received funding and then started to develop the model which is still very much followed by STIL. The model focused very much on personal attitude but also on STIL as an assistance organization as well as overall organization. It dealt with how you should reject the role as victim and dependent which often are allotted to persons with disabilities by society. To take another approach to your life and show that you have the strength needed and can demand resources from society to be able to use your own personal capacities.
The model developed by STIL is on many accounts the same model used today. It is about acting as a role model, both as an organization for assistance and in other respects. It is also about having persons within the program that works as role models. STIL of today implement this above all through strengthening the supervisors [sometimes called bosses] – in STIL the personal assistance user functions as the supervisor. They focus on training and strengthening the supervisors, not on training personal assistants or others who will help and take care of us. This part is still strong within STIL. They offer a basic supervisor training which also is followed by training in work environment making the assistance user capable of taking responsibility for her assistance and her life.
Peer support was very much an integral part of the early movement and has somewhat ended up in the background at STIL today. It could be said that the training courses that take place now have a spirit of peer support, as they are conducted by persons who are assistance users and deal with these issues both as individuals and professionals, sometimes in their capacity as staff but also as board members. STIL also actively try to recruit persons with disabilities, possibly also assistance users and supervisors for their own assistance. In this way, STIL could be said to continue working with role models. Visitors to STIL will notice that this is an organization where persons with disabilities are expected to and can take responsibility and are competent. This is also the fact emphasized in the interviews I did with persons from the new generation of Independent Living. They enjoyed meeting persons of their own kind at STIL’s office, persons who had employment, lived full lives and participated in the community. That is why STIL felt like home to them.
Within STIL, above all within the board, discussions about the future are on the present agenda. And maybe this conference will be a part of that which will be the next step both for STIL and the Independent Living movement.
[translated to English from transcribed and edited speech in Swedish]