© Independent Living Institute
Independent Living Institute,
Storforsplan 36, 10 tr
123 47 Farsta
Sweden
Tel. 08-506 22 179
info@independentliving.org
Jan-Jan Sabbe, founder of the Independent Living Movement in the Flemish part of Belgium, died yesterday after an unexpected short illness.
Jan-Jan enriched many people’s lives including my own. He was such a lively, creative and inspiring person that he leaves a great empty space behind. He and I first met in 1981. Since then we not only worked together on various projects, we also became very close friends. I have seldom met such a warm, generous and humorous person, so full of enthusiasm, excitement about life, curiosity and compassion, a person who had so many visions and ideas and who made so many of them become reality. He started at least eight organizations and made sure they were competently run. Since the 1980s he had been the prime motor in disability politics in Flanders.
Jan-Jan traveled widely, knew people in many parts of the world and worked together with them. One of his major interests was to help people with disabilities to leave institutions, to develop schemes how to finance and organize personal assistance services and how to create individual support networks in the community for people who had been institutionalized including persons with cognitive disabilities. One of his most recent projects was to test in court whether such a personal support network could replace a so-called good man.
There were many facets to Jan-Jan’s person, more than I can grasp. Since childhood he had been a nature person, had traveled around most of Europe to watch birds, he loved to design gardens with bath tubs full of water plants and mosquitoes for his bull frogs. He was an expert on bamboo and it is all his fault that our garden in Stockholm has been taken over by a dozen varieties of this lovely plant. Jan- Jan’s disability made him dependent on assistive technology and soon after he had become disabled, in his early twenties, he designed and developed his own solutions, started two companies that cooperate with university researchers and import and sell sophisticated computer input devices for people who cannot use their hands. Jan-Jan appreciated music. His partner Theresa is a singer and performs songs from the Renaissance in a group of female vocalists. Jan-Jan’s costume parties were famous. He was very gregarious, enjoyed the good things in life, friendship and family. Over the years he had been substitute father to a number of children who adored him.
For me Jan-Jan was an important role model. Here was a person who by all common standards should have been an object of pity: unable to move anything but his head, totally dependent on the help of others, confined to bed for long periods in order to prevent pressure sores. And yet I am sure everybody who met him experienced Jan-Jan as a happy, active and attractive person! How did he do it? As I see it, it was his trust in the world and in himself, his willpower and innate kindness, and above all, his ability to consciously live every moment, focus on the present and make the most of it.
I am grateful for his friendship. Without him the world will be smaller and colder.
Adolf Ratzka, 14 May 2008.