About the Project
While the self-advocacy movement is part of the broader disability rights movement, it is a unique movement led and informed by the individual and collective experiences of people with intellectual and developmental disabilities. Its roots trace back to Sweden and the work of Bengt Nirje in the late 1960s. Nirje initiated some of the first structured opportunities for youth with intellectual and developmental disabilities to work together, share experiences, and exercise self-determination. During the 1970s and 80s, the self-advocacy movement spread across Canada and the United States. People First of Oregon and People First of Washington were among the first statewide organizations formed in the United States.
In 1990, the first national self-advocacy conference was held in Estes Park, Colorado, where formation of a national organization began. Steering committee meetings were held over the next several years. Nancy Ward and Tia Nelis were elected as the first chair and cochair of the national organization. Self Advocates Becoming Empowered (SABE) was incorporated at the third national self-advocacy conference in 1994. Approximately 800 self-advocacy chapters exist within the United States. Internationally, there are organizations in at least 43 other countries.
Despite widespread existence of the movement, however, few works have explored its rich history, culture, and significance. Some scholars have even referred to the movement as the "unacknowledged" civil rights movement. This life history project was undertaken to help fill this void. The project also documents an important historical juncture in which the movement's founding leaders are transitioning leadership to a younger generation. In addition, the movement continues to struggle with issues such as lack of structural funding, control by self advocates, and adequate supports and advisers. In exploring the life histories of leaders, the project gained perspectives of leaders on these issues. Particular attention was also given to leadership development, the meaning of leadership, and disability identity formation.
The project explored the life stories of thirteen leaders in the self-advocacy movement. All current and past chairs of SABE were included, as well as other leaders with national experience. Equal weight was also given to stories of leaders with experiences at local and state levels. Diversity was sought in assembling a collection of individual stories from different racial and ethnic backgrounds, genders, ages, and geographic locations. An advisory group of self-advocates assisted with development of interview questions, recruitment, and guidance on the project.
The interviewer for all the life stories within this collection was Joe Caldwell, Ph.D., Adjunct Research Assistant Professor, Department of Disability and Human Development, University of Illinois at Chicago. The project was part of a larger research study made possible with support from the Mary E. Switzer Fellowship program, US Department of Education, National Institute on Disability and Rehabilitation Research, Grant #HF133F070013. However, contents do not represent the policy of the Department of Education or endorsement by the federal government. The interviewer and interviewees provided releases of information to archive and make material publically available for educational purposes through the Bancroft Library at the University of California at Berkeley.
To find out more about the self-advocacy movement visit the website of Self Advocates Becoming Empowered: http://www.sabeusa.org/
Additional Resources on the History of the Self-Advocacy Movement
Dybwad, G. & Bersani, H. (1996). New voices: Self-advocacy by people with disabilities. Cambridge MA: Brookline Books, Inc.
Goodley, D. (2000). Self-advocacy in the lives of people with learning difficulties. Buckingham & Philadelphia: Open University Press.
Hayden, M. (2004). The self-advocacy movement: The unacknowledged civil rights movement. Washington, DC: National Institute on Disability and Rehabilitation Research.
Johnson, R. and Williams, K. (1999). Lost in a desert world: An autobiography of Roland Johnson (as told to Karl Williams). Plymouth Meeting, PA: Speaking for Ourselves.
Wiliams, P. & Shoultz, B. (1982). We can speak for ourselves. Bloomington, Indiana University Press.