How independent living began in Sweden

From Disability Now. Swedish journalist Finn Helmann, (pictured) who is a freelance journalist and disability activist with the Independent Living Institute, looks back on the tensions and arguments which led to the emergence of independent living in his country over the past 25 years and the questions it raises for today. If you want to know more about independent living in Sweden, visit: http://www.independentliving.org/docs6/ratzka200302b.html

In the late seventies and early eighties lots of people with severe disabilities in Sweden were still living in hospitals. However, on a small scale special complexes of flats with 24-hour home-service became more common for disabled people. Although this was still a one size-fits-all solution, the already embryonic disability movement considered it a step in the right direction.

It was at that time that Swedish pioneers presented the theory of independent living (IL) and provided information about how activists organised in the US and Great Britain. Soon the IL pioneers started to apply the new ideas in Sweden and it became a struggle for personal assistance.

The message was not embraced by the established disability movement. Advocates of independent living were accused of being elitist and of campaigning for un-Swedish perspectives. It was seen as elitist because they believed that not every person with disabilities, especially intellectual disabilities, was capable of handling personal assistance. It was regarded as un-Swedish since the IL movement emphasised the personal responsibility of each individual. The demand for personal assistance was considered a threat by some members of the disability community. They saw the transformation of hospitals into segregated service homes as an improvement and were concerned that talk about personal assistance would jeopardise the change from taking place.

The struggle for personal assistance was also criticised from the left. The Social Democrats, The Left Party and some workers’ unions feared personal assistance would lead to privatisation. Until that time service for people with disabilities had only been delivered and paid for by local councils.

Despite the resistance a small but stubborn group of people with severe disabilities founded the disabled people’s organisation, the Stockholm Cooperative for Independent Living (STIL) in the mid 80s. They soon got a lot of media coverage and the leader of the Liberal Party joined them in their fight. Slowly but surely they gained more sympathisers and political influence. After massive lobbying STIL received funding from the local authorities in the Stockholm area and the Ministry of Social Affairs. The money was used to organise personal assistance through a cooperative for a limited amount of time. STIL’s purpose was to show that personal assistance based on a direct payment system is cheaper and produces higher quality than the residential homes provided by local authorities.

The pilot cooperative was a success and after further lobbying the project was accepted as a permanent programme in 1989.

However, the Independent Living activists in STIL were not satisfied. They wanted to make it possible for everyone to get personal assistance who wanted it. More co-ops were created in other parts of the country. Not only wheelchair-users but also people with intellectual disabilities started to choose personal assistance instead of home-service or institutional living provided by the municipalities.

In 1993 the Swedish parliament passed a national law entitling thousands of people with severe disabilities the right to personal assistance based on a direct payment system. This approach has been questioned from time to time ever since.

The opponents reason that it is too expensive. Nevertheless, today more than 15,000 people with disabilities use personal assistance and over 200,000 people have worked as a personal assistant.

In one way the Independent Living movement has had a significant impact on Swedish social politics. It has contributed to a shift in perspectives on disability from the medical model to a civil rights model and its theory has transformed in practice into the right to personal assistance. On the other hand much is left to do. Most people in Sweden who use personal assistance are still relying on their councils, even though they no longer need to. Why don’t they see the advantages of organising their assistance in a more autonomous way?

A decade-and-a-half ago personal assistance was only carried out by non-profit organisations. Today, huge private companies make a profit by keeping salaries of assistants low and competing for customers in unethical ways. Shouldn’t the Independent Living movement campaign against the law on personal assistance from being abused?

Personal assistance is only available for people with certain disabilities, often wheelchair-users or people with intellectual disabilities. Shouldn’t the right to personal assistance be there for people with other impairments? In a Swedish context IL has more or less become synonymous with personal assistance. It’s easy to see why but how can it be applied in other ways?

One area where a direct payment system could lead to positive change is the more open distribution of technical tools such as wheelchairs, Braille displays and so on. Another area where a direct payment system could have a liberating effect is the segregated taxi service for people with disabilities.

Whether any of this will become true or if inaccessibility will ever be banned in Sweden, the pan-disability core of the IL concept has to be emphasised. Not only should those of us familiar with the thoughts and history of IL work towards that end, we should also make sure more Swedes with disabilities become informed about independent living.