Leaders with Developmental Disabilities in the
Self-Advocacy Movement

This project explores the life stories of thirteen leaders in the self-advocacy movement and their perspectives on key issues and leadership challenges. Part of the broader disability rights movement, the self-advocacy movement is unique in that it has been led and informed by the individual and collective experiences of people with intellectual and developmental disabilities. Despite its widespread existence nationwide and internationally, few works have explored the rich history, culture, and significance of the self-advocacy movement. To help fill this void, Joe Caldwell, Ph.D., Department of Disability and Human Development, University of Illinois at Chicago, undertook this life history project and donated transcripts to The Bancroft Library for its Disability Rights and Independent Living Movement collection. More about Self-Advocacy Movement oral history project.

Oral History Transcripts
Image of Max Barrows

Max Barrows  Transcript
Montpelier, Vermont

Max Barrows is an outreach coordinator with the Vermont statewide self-advocacy organization, Green Mountain Self-Advocates. In 2008, he was elected as a regional representative for the national organization, Self Advocates Becoming Empowered (SABE).

Video Excerpts
Max Barrows on Experiences in School
Max Barrows on Involvement in Self-Advocacy

Image of Chester Finn

Chester Finn  Transcript
Albany, New York

Chester Finn has held several leadership positions within the self-advocacy movement. He has been an adviser to the Self Advocacy Association of New York State (SANYS) and has served two terms as chair of the national association, Self Advocates Becoming Empowered (SABE). He is currently a special assistant with the New York State Office for People with Developmental Disabilities.

Video Excerpts
Chester Finn on Batavia School for the Blind
Chester Finn on Sheltered Workshop
Chester Finn on Self-Advocacy in New York
Chester Finn on Disability Identity

Image of Max Barrows

Linda Kunick  Transcript
Cincinnati, Ohio

Linda Kunick is a founding member of People First of Ohio and has held several offices, including president. She has worked for the Resident Home Corporation (RHC) in Cincinnati, Ohio, for more than three decades. She began as a teaching assistant and now works on self-advocacy issues.

Video Excerpts
Linda Kunick on Experiences in School
Linda Kunick on Involvement in Self-Advocacy
Linda Kunick on Disability Identity

Image of James Meadours

James Meadours  Transcript
Austin, Texas

James Meadours has held various leadership positions within the field. He was president of People First of Oklahoma, and later served as a VISTA volunteer to strengthen the movement in Oklahoma. He was chair of the national organization Self Advocates Becoming Empowered (SABE) from 1999-2002. He was also one of the first self-advocates hired by a state Protection and Advocacy Association (Advocacy, Inc. in Texas), where he works as a self-advocacy specialist.

Video Excerpts
James Meadours on School and Sheltered Workshop
James Meadours on Group Home Experiences
James Meadours on Spirituality
James Meadours on Next Generation of Leaders
Image of Joe Meadours

Joe Meadours  Transcript
Sacramento, California

Joe Meadours has held leadership positions in various states, including Oklahoma, Alabama, Tennessee, Illinois, and California. He served as president of People First of Oklahoma. He was one of the first self-advocates to work for an independent living center (Access Living in Chicago). He also worked for the State of Alabama as director of consumer empowerment. He is the executive director of People First of California, one of the first such positions established within the self-advocacy movement.

Video Excerpts
Joe Meadours on Involvement in Self Advocacy
Joe Meadours on Paid Leadership Positions

Joe Meadours on Next Generation of Leaders

Image of Marvin Moss

Marvin Moss  Transcript
Cincinnati, Ohio

Marvin Moss is a founding member of People First of Hamilton County in Cincinnati, Ohio. His mother, Dorothy Moss, was a founding member of the Hamilton County Arc, Arc of Ohio, and Arc of the US. He served as coguardian of his brother, Leon. He has served on two national, six state, and ten local boards and committees. He works for the Arc of Hamilton County.

Video Excerpts
Marvin Moss on Relationship with Brother
Marvin Moss on People First of Cincinnati
Marvin Moss on Volunteering

Image of Tia Nelis

Tia Nelis  Transcript
Chicago, Illinois

Tia Nelis was a founding member of People First of Illinois and the national organization, Self Advocates Becoming Empowered (SABE). She has held various elected offices, including chair of SABE from 1997 to 1999. She was one of the first self-advocates hired by a University Center for Excellence in Developmental Disabilities (Institute on Disability and Human Development at the University of Illinois at Chicago). She has led projects on aging with developmental disabilities, self determination, and leadership.

Video Excerpts
Tia Nelis on Formation of People First of Illinois
Tia Nelis on Formation of SABE
Tia Nelis on Self-Advocacy and Independent Living
Tia Nelis on Advanced Leadership Positions

Image of Julie Petty

Julie Petty  Transcript
Fayetteville, Arkansas

Julie Petty played a leading role in building the self-advocacy movement in Arkansas. She was state coordinator of People First of Arkansas from 1998 to 2007, and served as chair of Self Advocates Becoming Empowered (SABE) from 2006 to 2008. She is a graduate of the University of Arkansas and holds a degree in journalism. She is a consultant with Human Service Research Institute (HSRI), and has led projects on self-advocacy and youth leadership.

Video Excerpts
Julie Petty on Hot Springs Rehabilitation Center
Julie Petty on Involvement in Self-Advocacy
Julie Petty on Challenges Facing Self-Advocacy

Image of Victor Robinson

Victor Robinson  Transcript
Washington, DC

Victor Robinson has been a leader in the self-advocacy movement in Project Action in the Washington DC area. He helped ensure that self-advocacy there was represented in the national self-advocacy organization, Self Advocates Becoming Empowered (SABE). He has held many elected offices within SABE, including cochair. He works as an advocate for DC Quality Trust.

Video Excerpts
Victor Robinson on Experiences in School
Victor Robinson on Involvement in Self-Advocacy

Image of Ray Rocha

Roy Rocha  Transcript
Bakersfield, California

Roy Rocha has been president of People First of Bakersfield and vice president of People First of California. He works for Kern Regional Center, where he helps other individuals with disabilities to access services.

Video Excerpts
Roy Rocha on Experiences in Sheltered Workshop
Roy Rocha on Involvement in Self-Advocacy

Image of Nancy Ward

Nancy Ward  Transcript
Oklahoma City, Oklahoma

Nancy Ward was a founding member of the national organization, Self Advocates Becoming Empowered (SABE) and served as its first chair. She began her career with Advocacy First of Lincoln in 1979. She assisted with building the self-advocacy movement in Nebraska, serving in various elected positions and working as an organizer for People First of Nebraska. She is an information coordinator for the Medicaid Reference Desk, a federally funded resource center based in Oklahoma City, Oklahoma.

Video Excerpts
Nancy Ward on Labels and School
Nancy Ward on People First of Nebraska
Nancy Ward on Formation of SABE
Nancy Ward on Disability Identity

Image of Liz Weintraub

Liz Weintraub  Transcript
Rockville, Maryland

Liz Weintraub has held various leadership positions within the field. She began in self-advocacy in New Jersey. On the national level, she served on the board of Self Advocates Becoming Empowered (SABE) during the mid-nineties. She has worked on criminal justice issues and developmental disabilities services in Pennsylvania and Massachusetts. Liz is a quality enhancement specialist with the Council on Quality and Leadership (CQL) and chair of the Maryland Developmental Disabilities Council.

Video Excerpts
Liz Weintraub on Introduction to Self-Advocacy
Liz Weintraub on Council on Quality and Leadership

Image of Betty Williams

Betty Williams  Transcript
Indianapolis, Indiana

Betty Williams has served as president of People First of Indiana. She became involved in the national organization, Self Advocates Becoming Empowered (SABE), in 2000 and has served as cochair. She is also a coordinator of consumer education and training with the Arc of Indiana.

Video Excerpts
Betty Williams on School Experiences
Betty Williams on Sheltered Workshop and Self-Advocacy
Betty Williams on Parents and Overprotection
Betty Williams on Future of Self-Advocacy Movement

A related interview with Kevin Tracy was conducted as part of the Disability Rights and Independent Living Movement project.


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.





Copyright © 2010 The Regents of the University of California. All Rights Reserved
Comments and Suggestions | Last Updated: 09/15/10 | Server manager: Contact
 


UC Berkeley Library The Bancroft Library Website Regional Oral History Office Home Page