IL 25 years Documentation - Bente Skansgård

25 years of Independent Living in Sverige

Panel: Independent Living abroad, speech by Bente Skansgård 08.11.2008.

Independent Living in Norway - ULOBA

I am sorry to say that the Independent Living movement is not so big in Norway and we have concentrated on personal assistance like the Swedes. I am quite happy about that because we managed to put some focus into one issue. Of we had started up with everything I think the movement would have vanished. We would rather try to widen the scope when we get more people politically committed, which do not look so bright. There are not so many disabled people who want to work with politics. Adolf has just reminded me that it is 27 years since we met in Gothenburg at an international conference on building research. Maybe that was when I started to focus on developing personal assistance in Norway with Independent Living ideology as the basis. I want to show you a powerpoint program that we have made in my cooperative about the historic line of personal assistance and antidiscrimination.
[transcript of speaker voice from powerpoint presentation below]:
ULOBA is a product of the Independent Living movement, an international freedom movement both by and for people with disabilities. We see a picture of the Statue of Liberty in a wheelchair. A proud symbol of the Independent Living movement.
1955. We see a picture of a black woman and a white man on a bus. As an African-american in the United States in 1955 Rosa Parks is not treated as a full citizen. She is arrested for refusing to move from a whites-only bus seat. Her action ignites a boycott and a series of protests which eventually leads to her being dubbed the mother of the modern civil rights movement. A wheelchair user in Norway more than 50 years later cannot even enter the bus
1957. We see a picture of surgeons in the operation room. 1957 the Norwegian government conduct sterilisations on people with disability to prevent so called unwanted genes.
[Martin Luther King speaking]: I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.
1963. We see a picture of Martin Luther King Jr. devlivering the speech. This is the year of his famous I-have-a-dream-speech.
1967. We see a picture of a man I a wheelchair. Behind him a man is holding a poster that reads: civil rights for the disabled. Ed Roberts from California is often referred to as the founding father of the Independent Living movement. He was the first to hire, train and lead his personal assistants. With personal assistance Ed Roberts has acquired a tool to take control of his own life. Personal assistance is the core.
1970. We see a demonstration with lots of people in wheelchairs. They are sitting outside a building carrying a bunch of posters. The de-institutionalisations movement from the early 70’s still inspires people to fight for their rights. It is a tough battle fought by thousands about the right to live in their own house.
1972. We see a picture of protesters holding signs gathered in Washington D.C. President Nixon vetoed the Rehabilitation Act in 1972, the bill that is meant to assure full civil rights to people with disabilities. In spite of the veto a series of protest and demonstrations all over the United States leads to the implementation of the bill the next year. Three years later marks the end of the Vietnam war. Thousands of injured soldiers bring new life to the civil rights struggle. Soldiers of the Independent Living movement will not accept being treated as second class citizens.
1981. We see a picture of Adolf Ratzka with his daughter on his lap. He won the right to adopt after a court battle against the Swedish government which claimed he could not be a good parent because he was in a wheelchair. Ratzka studied in Berkeley California and is deeply influenced by the philosophy of the Independent Living movement. The Norwegian Bente Skansgård met Ratzka in Sweden in 1981. She is inspired to bring his ideas to Norway.
1990. We see a picture of President George Busch the elder signing a law in front of the White House. He sits with a man in a wheelchair on each side. The man on the right is Justin Dart, one of the Independent Living movement’s pioneers. The movement reaches a milestone in 1990 with the signing of the American with Disabilities Act which ensures equal access for all.
1991. In 1991 the ULOBA cooperative is founded. Finally personal assistance has come to Norway. It suffers a slow start. Norwegian municipalities have little faith in the ability of the disabled to take charge of their own lives, that a cooperative consisting of people with disabilities can be both the assistants’ employer and provide the necessary management training to the recipients of the assistance.
1993. We see a picture of the capitol of Sweden, Stockholm. Ten years earlier the Stockholm cooperative for Independent Living, STIL is born, the first Nordic cooperative for personal assistance. 1993 ULOBA’s members administer 17 personal assistants. The very same year Sweden implements a law that assures assistants for anyone who needs them. Fifteen years later in 2008 this obvious right is not so obvious to the politicians in the neighbouring country. No such law exists in Norway to date.
Year 2000. We see a picture of a parade with a woman I a wheelchair dressed up as the Statue of Liberty. She has the American flag behind her, its stars in the shape of a wheelchair symbol. Going into the new millennium ULOBA’s 151 members administer more than a thousand assistants. There is some progress on mandating personal assistance too, at least it is mentioned in the socials services legislation, but it is not yet a right and one still has to apply for the possibility of controlling one’s own life.
2003. We see a picture of a mother and her two daughters. In 2003 more than 1800 Norwegians have personal assistance, one third of these through ULOBA. Two studies show that personal assistance through ULOBA is both cheaper and better than what the municipalities offer. With them one cannot be the boss of one’s own assistants which of course goes against the very essence of the Independent Living movement. ULOBA now intensifies its work on this issue.
2005. We see a picture of Rosa Parks on the bus in 1955. Rosa Parks dies in 2005. a wheelchair user in Norway still cannot access the bus. ULOBA decides that people not able to manage their own assistance also should be eligible for the system. ULOBA continues to work on mandating personal assistance and even though a majority in the Parliament favours the idea no action is taken.
2008. We see a picture of the new ULOBA logo. ULOBA is now 17 years and going stronger everyday. Can a mandate for personal assistance finally become a reality 45 years after Martin Luther King Jr’s famous speech? ULOBA has a dream and continues the fight for freedom.
[End of film.]
We are now 810 co-owners in ULOBA and we cover the whole country. We have learnt everything from abroad, especially from the United States and from Sweden. Now it is time to share our knowledge and experience. We have had colleagues from Spain and Bulgaria over for sharing and learning. Lately we have been in Denmark where they want to improve self direction and also to Iceland where they are about to introduce self direction. The awareness about discrimination is still low among disabled people. Maybe I should stick to Norway, but that is my feeling about Norway. The political activity is far too low among our people but in ULOBA we have invested, all the time from the beginning, a lot of energy in peer training and counselling so we feel relatively politically strong. That is a great feeling. Thank you.
[edited transcript from speech & presentation]