Scandinavian Reports

Visiting  STIL

STIL, short for the Founders of Independent Living in Sweden, was first founded in 1984, by and with people with disabilities. STIL is currently a service provider for personal assistants but also a political force on championing everyone’s ability to live an accessible life. Professor Chin and I enjoyed speaking with Emma Astrand and Jonas Franksson. Astrand serves as a project manager of international relations, communications, and education. Franksson is the chairman of STIL and has been since 2019. He initially joined the board in 2009. They were both kind enough to deliver the general history of the Independent Living Movement’s roots and STIL’s foundation. 

In 1967, the founder of STIL was a college student at the University of California at Los Angeles. Intrigued by the Independent Living Movement in California and having a scholarship for a personal assistant himself, Dr. Adolf Ratzka began to train and employ personal assistants. When moving to Sweden in 1973 to complete his dissertation, he experienced a huge change in his quality of life. This came especially severe with the housing crisis in the 70s. In response, in 1983, Ratzka organized a seminar to introduce the Independent Living Approach to Sweden. With interest from other personal assistance users, STIL was founded in 1984. However, this was not enough for resistant government support. In 1986, they showed politicians how monkeys in the zoo were treated better than those without personal assistants. In the 90’s a disability investigation was conducted to see how people were living: the result was that they were isolated, without choice, dependent, and hospital-living. As a result, the Minister promised loans in 1993 for personal assistants.  

STIL is now the organization in charge of scheduling who, where, and the quality of the personal assistants’ work. Despite this progress, Astrand and Franksson illustrated how Sweden is currently on the downward end of progress. The problem with the status quo is that the state and local municipalities are sharing responsibilities but also fighting for who should be in charge. This also comes in addition to needing to fight against the medical model and the diagnosis of a doctor being the basis of what a disabled person is allowed. This calculative system for qualifying for personal assistants has made it much more difficult for people to receive personal assistants in the status quo as a result of increasing populations. In addition, this ignores the goal to thrive for a person to be as healthy or not disabled as possible. A large part of the cut on personal assistant access or hours is what Franksson attributes to resistance from the finance department. The number of personal assistants is looking to be cut from 20,000 to 16,000, making it especially difficult for young people to get personal assistants.  

STIL’s specific stance is that the state should take over the distribution and funding of personal assistants as they would provide easier access and a more equal distribution. In addition, local municipalities do yearly investigations to reassess a person’s need for personal assistants. However, as it stands, there is no trust in authorities in the state program having established a new system that makes it even harder to get access to personal assistants. In the fight between local municipalities and the state, STIL has been integral in doing lobbying to change policies. For STIL, it is as fundamental as personal assistants being a question of whether or not they have access to basic human rights.  

Franksson especially notes that 30 years ago, the state of accessibility and quality of life for the disabled was much higher than it has been 15 years onwards. In fact, Franksson says that Sweden is not even in the top of Europe for accessibility. He described his trip to Florida as like being in heaven compared to conditions in Sweden. The problem is that the government seems to only have the capacity to prioritize the needs of one minority at a time (LGBTQ+, disabled, immigrants). As a result, they often fight against each other for funding and representation in media and politics.  

In response to questions of STIL’s role in advancing assistive technology, Astrand states that such tech to replace personal assistants simply does not exist and they need to pick one fight in order to be heard in politics. As the technology does not exist presently, it makes more sense for STIL to fight for the immediate right to personal assistants. Tech has been implemented for specific tasks but not as a way to completely replace personal assistants.  

Astrand also notes the amount of discrimination in the workplace. STIL also argues that the right to labor is a part of the right to life. This combats the stance of the government that requires additional hours of personal assistance. STIL advocates that they need personal assistants to live not just to survive. As it stands, Astrand states that it’s harder to not have a home or food than to have access to a personal assistant. The strong welfare systems are there to help while the government does not extend the same level of effort towards support as with the disabled.  

Looking forward, STIL believes that strong activism and representation are what is needed for change. Given that Sweden is not like the US and suing someone in court isn’t the solution, Franksson believes that it is key to get on the ground and talk with politicians

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