"Don't think we don't think."
THE ORIGIN OF THE SELF-ADVOCACY MOVEMENT
"DIGNITY OF RISK" IN SWEDEN
In the late 1960s, Dr. Bengt Nirje, director of the Swedish Association for Persons with Mental Retardation, organized a club, comprised of people with mental retardation and people without mental retardation. The club had no leaders, and the rules were quite simple: members would meet to plan an outing, they would later go on an outing, and they would then meet afterward to talk about their experiences.
Dr. Nirje's idea was to provide persons with developmental disabilities "normal" experiences in the community, which sometimes involved personal risk. Club members without disabilities, who were college students, were expected to allow club members with disabilities to make their own decisions, even if mistakes were made.
This program was radical at a time when persons with developmental disabilities were thought incapable of making their own decisions. Most professionals and parents believed that persons with disabilities should be protected at all costs. Dr. Nirje, however, disagreed and stated: "To be allowed to be human means to be allowed to fail."
In 1969, Dr. Nirje delivered a paper at the 11th World Congress of the International Society for Rehabilitation of the Disabled, "The Retarded Adult in the Community." The paper was entitled "Towards Independence," and chronicled recent developments in the self-advocacy movement in Sweden. Following are excerpts from that paper:
"This spring the Swedish Parents' Association arranged our first weekend-course in 'Parliamentary Procedure Techniques' for 16 mentally retarded adults (with an IQ of 36-60, for the information of those who think the figures relevant; we know that they are not!). The items were: How to form a club of our own, How to debate, How to make decisions, How to be a chairman, etc., etc. The man presiding at the last general session said, "If I were not retarded, this is what I would like to organize because I know how much our comrades at the institutional schools need help to be more respected."
"Last year, the Swedish Parents' Association arranged a national conference of young adults, active in some of our clubs This gave them an opportunity to discuss between themselves and bring out their own views on activities and matters which concern them: leisure time activities, vocational training, employment and wages of the sheltered workshops, and vacation questions. It was probably the first time such a conference had ever been held."
"This is akin to any decent revolt. Some of the retarded adults themselves definitely want to play a new role in society, to create a new image of themselves in their own eyes, in the eyes of their parents and in the eyes of the general public This struggle for respect and independence is always the normal way to obtain personal dignity and a sense of liberty and equality."