It is with sad regret we inform you that Bente Skansgård, one of the original pioneers of independent living in both Norway, Europe and worldwide passed away on 14 November after a long illness.
Bente was known as the mother of ULOBA, the representative independent living organisation of her native country Norway which she co-founded. She was the first person to establish an independent living scheme in Norway in the 1980s, in which she received funding to enable her to have her own personal assistants. She would remain passionate about the need for personal assistance and in particular in establishing a law for it throughout her entire life.
I first met Bente in 1983 on a visit to Oslo. I was put in touch with her through Adolph Ratzka the other Independent Living founder in Europe. These were the early days of networking without the Internet for the independent living activists in Europe. It was the beginning of developing a European wide independent living movement of which Bente would be at the forefront and a main player right up to her illness.
Bente was also present at the 1989 meetings in the European Parliament in Strasbourg when ENIL was formed. She was one of the major European contributors for ENIL. She was one of the early members of the board for ENIL. She remained involved until she stood down in 2010 because of ill-health. She was President of ENIL from 2007 until 2010. Her influence through her work with ENIL at the European level was far-reaching. We worked together very closely with our colleagues of the Spanish Independent Living Forum in the first decade of the new millennium trying to develop independent living initiatives throughout Spain. It was as a consequence of this work that ENIL successfully established a Secretariat in Valencia for 6 years until the economic downturn in Spain ended this.
Our disability movement has indeed lost a true warrior but her spirit will certainly live on within us and the important work we still have left to do for independent living. Her legacy is the greater freedom and independence that disabled people can now enjoy as a result of her tireless and passionate work for independent living.
Personally, I have lost a very close and special friend and nothing can replace this loss and only time can help my grieving. What will give me strength are the many wonderful memories I have of the times we spent together.
I am thankful I had the opportunity to meet and know such a rich and wonderful dear person.
John Evans OBE
President of ENIL, Vibeke Maroy Melstorm gave a moving speech at the funeral of Bente Skansgard and we invite you to read it here.