Continuing the Independent Living Heroes article series, this month ENIL has chosen to present the life and work of two of its most prominent leaders, Adolf Ratzka from Sweden and Bente Skansgård from Norway. Why this month? ULOBA, the largest personal assistance user cooperative in Norway, honoured Adolf Ratzka with their Pride Award in connection with the annual Pride Parade in Oslo on June 17. ULOBA’s Secretary General Vibeke Maröy Melström summarized the jury’s motivation:
“This year’s winner of the Pride Award has been one of Europe’s leading activists in the fight for equality for disabled people for nearly five centuries.”
The ULOBA Pride Parade is a successful annual event where the Norwegian population is made aware of the importance of Independent Living with hundreds of our members walking on the streets of Oslo. Both events were established with Bente in direction.
Adolf and Bente are two titans of the Independent Living movement shared a lifelong friendship, experience and vision. True to their ideals of peer-support and Independent Living they drew inspiration and learned from each other, and backed each other in personal and professional endeavours, at the same time granting freedom to thousand of people through the promotion and realization of personal assistance and Independent Living in their own countries and in Europe. With similar barriers to the built environment, they also shared similar life journeys, both travelling extensively in Europe and internationally at a time when travelling was quite demanding and inaccessible for many disabled people. Crossing the Atlantic, they both exposed themselves to the spirit of Civil Rights and Independent Living movements in the United States, which they eventually transformed into legally guaranteed personal assistance in Sweden and Norway.
Born in 1943 in Germany, Adolf Ratzka became disabled by contracting poliomyelitis at the age of 17. The agile young high school student who was interested in sports and dance, and explored his first romantic feelings, within three days faced a completely different reality. He was paralyzed to his head, fingers and forearms, and survived in a metal lung, a large box which in his words isolated him from the world. It took many years before Ratzka would accept and claim his new identity and achieve Independent Living for himself, to later make it a reality for thousands of disabled people in Europe, particularly in Sweden.
After becoming disabled, young Adolf had to finish high school in hospital, where he lived for five years, with limitations of movement and decision. It was an environment where everything was systemized and organized for him. Given its hierarchical structure and decision-making systems, Ratzka later draws comparison between the nature of a hospital and prison.
Despite his good grades in school, Adolf Ratzka was unable to find an accessible university in Germany that he could afford. At the time several universities in the United States provided the necessary conditions for accommodating his needs, including physical accessibility and provision of personal assistance. Therefore, at the age of 22, with a full scholarship from the German government, Adolf Ratzka left the hospital in Munich and moved to a student dormitory at the University of California in Los Angeles. He describes this change as a very quick and forced growing up process, where he had to (re-)learn very basic life skills, such as managing his own finances and buying clothes. But most importantly, Ratzka had to learn how to find, hire, train, and manage his personal assistants, for which he had no prior training or preparation. In a featured article of the Winter 1998-1999 “Visions of Europe” special issue by Time magazine, Adolf Ratzka shares his sudden transition in one telling sentence: “I was catapulted from the vegetable existence of a German hospital to the hotbed of flower-power activism.”
At UCLA Ratzka completed a Bachelor of Arts degree in Sociology and pursued a Master of Science degree in Business Administration. He later became interested in urbanization, housing and real estate, and did his doctoral studies in Urban Land Economics. Perhaps more important than his academic achievements, was Ratzka’s exposure to the emerging Independent Living movement in the United States. After his return to Europe in 1973, he would introduce this philosophy here, which stood on the basic principles of self-determination, and personal and political power for disabled people with personal assistance and accessibility of the built environment as necessary conditions for achieving Independent Living. In fact, Ratzka’s personal definition of Independent Living, adopted by the ENIL, describes it as a “philosophy and a movement of people with disabilities who work for self-determination, equal opportunities and self-respect.” It sees disabled people as the best experts on their needs, and calls on them to show the solutions for themselves, to take charge of their lives, and to think and speak for themselves.
In 1951, when young Adolf was only eight years old, in Østerdalen, Norway another bright start of the Independent Living movement, the Mother of her co-founded organization ULOBA and personal assistance in Norway, Bente Skansgård was born. At the age of 13, Bente became paralyzed shoulders-down due to a diving accident. Similar to Adolf Ratzka, she was tied down to hospital and home beds for years before she could start reclaiming her independence little by little, day by day, with the help of her parents, as there were no assisting services available at the time in Norway. In a few more years she would complete high school and move to Oslo to pursue a Sociology degree at the University. Again, given the absence of personal assistance and the great limitations to services provided by local governments, this was made possible with the great support and assistance of her parents.
It was in the year of her graduation, in 1981, when Bente Skansgård became acquainted with the Independent Living movement, attending an international conference on housing in Gothenburg, Sweden. It was here where Skansgård’s and Ratzka’s paths first crossed. Bente Skansgård was greatly motivated by Adolf Ratzka’s work and ideas, who she would later call her role-model and guiding star.
Drawing inspiration from Adolf Ratzka, as well as Ed Roberts and Judy Heuman, Skansgård started thinking about establishing personal assistance and spreading the Independent Living philosophy in Norway. But first she embarked on a journey across the Atlantic to travel through 25 states in the USA, visiting Independent Living Centres throughout the country and spending four weeks in Berkeley, California. Again, without any assistance available, Skansgård did this with the support of her father, with a wheelchair that was damaged during the air transfer, and relying on possible help from strangers wherever she went. As she later recalls in an interview, one of the things that struck Skansgård during her visits to the Independent Living Centres in the United States, was that the person who would help her out was always disabled themselves. She compares this to the prevailing attitudes on self-reliance and absence of peer-support in Norway.
While Bente Skansgård was beginning her journey of personal and professional development and Independent Living, Adolf Ratzka was making the initial attempts of generating a movement in Europe. In 1984, he managed to organize the first Scandinavian conference on Independent Living, which was attended by disabled people, including founders of the American Independent Living movement Ed Roberts and Judy Heumann. The outcome of the conference was the formation of the Stockholm Cooperative for Independent Living (STIL), which was founded to provide the services needed by disabled people, based on self-determination and the conviction that disabled people are the experts of their needs. STIL launched the first pilot project for personal assistance for 22 people, who could hire their personal assistants through direct-payments. The project proved to be extremely successful and sustainable, and inspired similar initiatives by assistance-users across Sweden. Almost a decade later the model initiated by STIL was transformed into national legislation for direct payment towards personal assistance costs. As of May 2017 around 16,000 people in Sweden benefit from the scheme through the National Social Security System.
In her own time, Bente Skansgård would initiate a similar endeavour of setting up a personal assistance service scheme in Norway. After her return to Europe, she received a scholarship from the Norwegian government to study the personal assistance services in Sweden, Denmark and Finland. The resulting report could be considered the first step in lobbying for personal assistance legislation in Norway, as the findings proved that the aforementioned Nordic countries had quite positive experiences with personal assistance. During this time Bente Skansgård also started developing the Norwegian model for user-controlled personal assistance, materializing the inspiration from her American journey and building upon the Swedish template. As a result, in 1991 Skansgård, together with four fellow activists, founded ULOBA, a cooperative run by disabled people for disabled people. In an atmosphere of dominating scepticism, ULOBA took its initial steps of providing the first personal assistance services in Norway, in 1993 administering 17 personal assistants. It also pushed for the adoption of national legislation on personal assistance, which would become reality only two years after the death of Bente Skansgård, in January 2015. Today the cooperative is a powerful and respected political organization in the country, with around 1,400 members and 6,000 personal assistants, and more than 100 full-time staff members, of whom around 65% are disabled people. It is actively engaged in the development of universally-designed IT solutions, publishes its own magazine called «Selvsagt!», organizes pride marches with more than 1,200 participants, and even runs its own shuttle service and travel agency, called Freedom Express. In 2015, ULOBA announced the Bente Skansgård Independent Living Fund to provide financial support for the exchange of experiences and competences between disabled people with the aim of strengthening the global Independent Living movement.
As Independent Living was becoming a reality in Sweden and Norway, a Europe-wide awareness on Independent Living was pressing. In April 1989, 72 disabled persons from 20 European countries gathered in Strasbourg for a three-day conference to discuss the possible ways of accelerating the spreading of the Independent Living philosophy and approach throughout Europe, where residential segregation of disabled people was still very much the norm. It was decided to establish an informal and flexible network of people devoted to the Independent Living values. Thus, the European Network on Independent Living was founded, with its first chair, Adolf Ratzka. As one of the forerunners of Europe-wide network of disabled people and their organizations, Bente Skansgård was of course present and very much active at the birth of ENIL. She served on the ENIL board from the early years of its existence and led it as its President from 2007 to 2010. Her cooperation efforts with the Spanish Independent Living Forum led to the foundation of the ENIL Secretariat in Valencia.
At the age of 74, Adolf Ratzka is actively engaged in the fight for equal rights and social inclusion for disabled people, as the head of the Institute for Independent Living in Stockholm, where Bente Skansgård served as board member. In the context of commitment by the Swedish government to provide refuge to asylum seekers (mainly) from the Middle East in the recent years, in April 2017 the Institute initiated “Disabled Refugees Welcome” project to “improve the reception of refugees who have disabillities and the coordination of services provided to refugees”.
And though Bente Skansgård is no longer with us, her legacy is alive and her struggle ongoing through the powerful organizations she left as heritage, her Fund, and her inspiration that ignites the battle in the many active and emerging Independent Living movement heros in Europe and internationally. Bente Skansgård considered Adolf Ratzka her guiding star, yet she became the guiding star of the thousands of disabled people she touched personally and through her work. Both Skansgård and Ratzka unleashed a potential in disabled people many of whom were themselves unaware of their own power and ability to live in dignity and true independence, and to contribute to society as full members. As long as the Independent Living movement is guided by the bright starts of Bente Skansgård and Adolf Ratzka its success is inevitable.
 After returning to Europe, Ratzka studied Psychology in the University of Stockholm in Sweden.