Each of us knows of or owes something to Bente Skangard. Whether it be advice at difficult times, keeping the dream alive or reminding people who are influential in the disability sector and the political world about empowerment and independent living, Bente has been a key person in all of this. Bente’s gentle nature combined with keen determination and perseverance results in the advancement of the independent living movement and the improvement of the lives of many people with disabilities. This determination and perseverance means that belief in the dream of independent living for all people with disabilities is kept alive and many people all across Europe are inspired to keep working towards a more independent living way of life. We are honored to induct her into the ENIL Hall of Fame.
Could you tell me a little about your background?
I come from the countryside in Norway, a valley by the Swedish boarder called Østerdalen. In 1964 when I was 13, I broke my neck in a diving accident and became paralyzed from the shoulders down. There was no rehabilitation – for an extensive disability like mine – at that time. So after half a year in the hospital my parents took me home. I stayed in bed for four years with severe infections. After removing a kidney, I started to sit in a wheelchair; a few minutes more each day.
After two years I had some teaching lessons at home and after two more years some hours in high school. When I graduated my parents moved with me, to Oslo so I could start studies at the university. There was no personal assistance available, and the local government services were not sufficient, not flexible and not working outside office hours. My parents were my assistants.
In 1980 I graduated as a sociologist.1981 was UNs international year for disabled people so I was offered a lot of interesting jobs about mainstreaming disabled people. And after the Summer I started to work for the Norwegian Building Research Institute with accessible housing and services instead of family and institutions.
The municipal services were beginning to work day and night. That way you could survive in our own home with people coming in for a short while to help with the most primary body necessities; never knowing who would come and hardly knowing when they would arrive. In that time you could not do anything outside your home if you could not do it alone or with friends or family.
How did you become involved in the Independent Living Movement?
When I realized all the limits that are unavoidable with municipal services, I looked into personal assistance which I had heard of from Denmark and Sweden. I met Adolf Ratzka in 1981 and because of that Ed Roberts and Judy Heuman in 1982. This was all the inspiration I needed to start thinking about personal assistance with self-direction and Independent Living in my own country.
In 1985 I got a scholarship to study the IL-movement in the US. I traveled through 25 states to visit independent living-centers on my way, and stayed four weeks in Berkeley, California. That journey was more inspiration for a start in Norway.
In 1989 I was involved in the establishing of ENIL in Strasbourg. I served on the board for a number of years, and in a period as the president of ENIL.
What do you think was the most significant moment of the Independent Living movement?
In 1973 when people from the movement occupied a federal building in America and thereby influenced the sanctioning of the world`s first anti-discrimination clause for disabled people in national legislation.
The most significant moment of IL-movement in Norway was in 2000 when personal assistance with self-direction was added to the national social insurance legislation to a large extent because of the five disabled people that developed Uloba (Co-operative on personal assistance with self-direction) from the start in 1991.
What is your vision for Independent Living at present and for the future?
My vision for Independent Living at present is to convince the authorities on all levels that enough assistance so people can function and contribute in society is the best possible inclusion. This is also the most cost-efficient solution since people who feel included have less health issues. The authorities must understand that everybody has to live in the social model, just “visit” the medical model when we need medical knowledge.
My vision for the future is that disabled people are struggling in the mainstream side by side with other citizens to improve the environment for everybody.
Why do you think the Strasbourg Freedom Drive is such an important event?
My health condition does not allow me to travel to Strasbourg to attend the Freedom Drive, but I would love to be present and again inhale the political energy of Freedom Drive – and be with the IL-heroes from all over Europe. And of course I would enjoy meeting up with role models like Judy Heumann and Adolf Ratzka.
Strasbourg Freedom Drive is so important because of the Independent Living political energy in getting together for the event. You get a lot of input from lectures on for instance how we can use the UN-convention to improve life for disabled people in our country; stimulate community based services to be able to reduce down institutions – and above all stop building them!
In Strasbourg we can communicate with important people from the EU parliament and commission. They are all central for improvements on the European level.
And last, but not least building your own Independent Living Network. You can always learn from experiences from other countries!