The struggle to have a life

Disability Politics in Sweden 1994-2024

This is a documentary movie about the implementation of a law that is unique for Sweden and was enforced in 1994 (LSS, Lagen om stöd och service till vissa funktionshindrade, 1993:387). The purpose of this law was to make it possible for people with lifelong disabilities to take part in society and lead self-determined lives. The inspiration came from the US, where The Independent Living Movement grew strong in the sixties and seventies. But even though the law has had a huge positive impact in the lives of many disabled people, there has also been a trend since the very beginning to adapt the law in Kafka-like ways that has made it increasingly difficult for disabled people to plan their lives ahead and take part in society.

The protagonists in the movie are:

• Jonas Franksson, chairman of STIL (the Swedish equivalent to The Independent Living Movement in the USA), journalist and actor. Jonas was born with cerebral palsy.
• Jan Paul, professor and student at Stockholm University. Jan suffered a brain hemmorrhage as an adult that left him partially paralyzed.
• Mia Odeh, communications manager and mom to Selma, born with a severe mental disability.
• Martin Engqvist, journalist, Martin was paralyzed after a car accident.

Some of the other participants and experts in the movie are:

Adolf Ratzka, author and disability activist that introduced the ideas behind The Independent Living Movement in Sweden and was a driving force behind LSS.

Andreas Pettersson, lecturer and researcher in public law, Södertörn University.

Bengt Westerberg, former political leader for the Liberal Party and a driving force behind LSS.

Judith Heumann, legendary American activist and special advisor for disabilty right’s during the Obama administration.

Niklas Altermark, researcher in disability politics, Lund University.

Stefan de Vylder, Swedish economist and author.

Thomas Hammarberg, senior human right’s specialist and advocate, commissioner for Human Rights, Council of Europe 2006-12.

“It is a piece of contemporary history, but also a lament over broken promises and ambitions. The film should concern so many people, almost everyone has some kind of relationship with disability. The politicians should see it, they have a great responsibility to enforce laws they have passed, and the disability rights movement should use it widely.”

Film review by Bo Öhlén, journalist and film producer