Disability Community Leaders' Disability Indentity Development: A Journey of Integration and Expansion

WEEBER, JOY ELIZABETH. Disability Community Leaders’ Disability Identity Development: A Journey of Integration and Expansion. (Under the direction of Dr. Herbert A. Exum). The purpose of this study was to investigate the disability identity development process of leaders of the disability community. Specifically, this study examined the cultural values, beliefs and assumptions individual participants held about their disability, what and who were the major influences on how they viewed themselves as disabled people and how their views of their disability changed over time. The study employed the qualitative methodology of in-depth, semi-structured interviewing to gather the data. Interviews were coded, coded data was entered into and sorted by Atlas ti, a software program for managing qualitative data and a coding auditor confirm identity “positions. ” The findings show that disability identity develops in a dual-dimensional process. The first process is integrating disability positively into one’s sense of self and oneself into the disability community. The second process involves the expansion of understanding the disability experience to include an increasing variety of disabilities, other diverse communities struggling for equal rights, and finally, a spiritual sense of oneness with all of humanity. Factors that played an important role in participants’ disability identity development were the cultural beliefs, values and assumptions about disability in their environments, education, disability community, personality traits, age of disability onset, new paradigm of disability, role models and gender/sexual identity. A time of bonding with the disability community was found to be essential for the development of a disability identity and a sense of wholeness as a disabled person. Disability Community Leaders’ Disability Identity Development: A Journey of Integration and Expansion by Joy Elizabeth Weeber A dissertation to the Graduate Faculty of North Carolina State University in partial fulfillment of the requirements for the Degree of Doctorate of Philosophy Department of Educational Research, Leadership and Counselor Education Raleigh July 30, 2004 Approved By: _________________________________ _____________________________ _________________________________ _____________________________ (Chair of Advisory Committee) ii Biography November 22, 1955 Born -San Jose, Costa Rica May 1986 B.A. in Chinese Studies University of North Carolina at Chapel Hill Chapel Hill, North Carolina May 1993 M.A. in Public Administration North Carolina State University Raleigh, North Carolina August 1993 – May 1994 Counseling Intern Counseling Lab Department of Counselor Education North Carolina State University Raleigh, North Carolina August 1994 – May 1995 Counselor Intern Counseling Center North Carolina State University Raleigh, North Carolina September 1994 June 1996 Research Assistant Center for Universal Design College of Design North Carolina State University Raleigh, North Carolina June 1996 – February 1997 ADA Intern Office for Equal Opportunity North Carolina State University Raleigh, North Carolina June 1999 – present Research Assistant Dept. of Disability and Human Development University of Illinois at Chicago Chicago, Illinois Publications Weeber, J.E. (2004). Healing from Medical Abuse. New Mobility. November. Weeber, J.E. (2002). Seeing ‘Dragon’s’ Disabilities. Independent Weekly, August. iii Weeber, J.E. (2002). What Could I Know of Racism? In V.N. Gordon & T.L. Minnick (Eds.). Foundations: A Reader for New College Students. Belmont, CA: Wadsworth Publishing Co. Weeber, J.E. (2001), Front Porch: Post-cute. Independent Weekly. September, 2001. Weeber, J. E. (2001), Book Review: What Psychotherapists Should Know About Disability. Community Mental Health Journal, 37(5). Weeber, J.E. (2000), Book Review: A Celebration of Disability Culture. Disability Studies Quarterly, 20(4). Weeber, J.E. (1999). Belonging and understanding: Disability identity grounded in community. Disability Studies Quarterly, 19(1). Weeber, J.E. (1999). What could I know of racism? Journal of Counseling and Development, 11(1). iv Acknowledgements This dissertation is dedicated to my late partner, Ron Mace, who individually gave me the love and support of an entire community. He gave me my first “home place” of being embraced and understood as a disabled person and honored my fire and spirit that infuses my work. His abiding belief in my work has sustained me in the years since his death especially when hearing how his ground-breaking work in accessible design had been an important element in the disability identity development of the many of the participants in this study. Through our life together, I learned the power of being a contributing member of a strong, creative disability community. I am most indebted to the leaders who generously shared their lives, thoughts, feelings and personal struggles with me in this study. Their collective belief that this research would benefit the disability community was heartening and reassuring. And heir trust in me to tell their story in a manner that benefited the disability community was most both humbling and challenging. I am grateful for the team of disabled researchers I have had the privilege to work with for the past four years Carol Gill, Ph.D., Larry Voss and all my fellow researchers at the University of Illinois at Chicago. Doing this cutting edge research as a part of a team enabled me to stay the course of completing my doctoral program and has let me experience the energy of working for social change collectively. To my parents, Bob and Dot Weeber, I am deeply indebted for their gift of teaching me that I was entitled to live in this world on my own terms. They taught me the strength of faith that knows “all things work together for good” and their principled, spiritual lives modeled that was possible to live a self-defined life, independent of cultural values and beliefs that could devalue me as a disabled or a spiritual person. I am deeply indebted to the faculty of the NCSU Counselor Education Department who provided a supportive academic environment that nurtured my personal v and professional development. Norman Sprinthall taught me I could still be a political radical with a Ph.D. Tracy Robinson listened deeply, graciously bearing witness to the irrepressible “birthing” of my own disability identity development and pushing me to see beyond my personal identity to a collective and spiritual identity. Herbert Exum gave me the gift of guidance and taught me how to evaluate growth by its own merits, not mine. And to my long-suffering committee, who long ago could have given up hope, yet kept urging me to “just get it done! ” To Phil Witt, healer, physical therapist and “Zen master,” I owe an inestimable debt of gratitude. He understood my “polio brainwashing,” taught me how to re-inhabit my body and experience the Buddhist wisdom of living in the present. Little did I know that our work together would lay the groundwork for my own dissertation, as well as his! My acknowledgements would not be complete without thanking the many people in the library who cheerfully let me in the backdoor (despite my hostility at ADA noncompliance). They acquired untold reams of materials for me and without their cheerful support, the many hours of uncovering the gaps in the literature about the lived experience of disability would have been more discouraging. I gratefully told them often they would be remembered in my acknowledgements and so they are! And, finally, I am grateful for the lessons learned living in the Tao -to trust that what I need will be supplied as I step through each door of opportunity. And, that each step of faith will make my life far richer than ever imagined. So, it is that out of that fertile void of “non-knowing” that the “ten thousand things” of this dissertation manifest themselves. vi TABLE OF CONTENTS